“Every good gift and every perfect gift is from above, and comes from the Father of lights, with whom there is no variation or shadow of turning.” James 1:17

In July 2014, a sweet and happy Angel was born into an ordinary Coptic Orthodox family. But the story begins several years before 2014. Shortly after getting married in 2005, God blessed us with our first Angel, Angelina. For nearly 5 years, we thought that we were going to have just 1 child, who had exceeded all of our expectations. Then, John and I decided that we were going to have a second child. We soon realized that it was not up to us to decide if, or when, we will have a child, but rather that it was up to God’s timing. For two years, we were unable to get pregnant. Around this time, Angelina was 7 years old and came to me and asked me why she didn’t have a brother or sister. I couldn’t give her an answer because I truly did not know why. All that I knew was that I have been praying to God for 2 years to bless us with another child and He had not answered my prayers yet. So, I told her to “pray to God and ask Him to give you a brother or a sister.” Approximately 2 years later, everything changed. 

For those that don’t know, I love Saint Pope Kyrillos VI and I always felt a special connection with him. I have read about most of his miracles. Around the beginning of November 2013, I began praying to Saint Pope Kyrillos VI to be my intercessor in front of God and bless me with another child. By the third week of November I found out that I was pregnant. I thanked God for answering Saint Pope Kyrillos VI’s prayers and I told Saint Pope Kyrillos VI “this is your child.”

Around the end of January, I received the results of the prenatal genetic testing (for women over 35) and we were blessed to know that there were no concerns whatsoever and as a bonus, we learned the child’s gender. It’s a girl! I texted John and we were both so happy and excited. I suggested the name Sophia, because I love the name and when I searched the meaning of it, I found out it means “wisdom.” John and Angelina loved the name. When it came to her middle name, John chose Justina, because it’s the patron saint of our Church and that’s where we were planning to baptize her. And that’s how Sophia Justina came to our world. 

Lessons Learned:

• Every Child Created By God Is A Miracle
• Patience Is A Virtue
• Trust God’s Timing

“And now why are you waiting? Arise and be baptized, and wash away your sins, calling on the name of the Lord.” Acts 22:16

The first six months of Sophia’s life were very smooth. She was a very calm baby that pretty much just ate (although not very much), slept, and smiled. On November 1, 2014 Sophia was baptized at St. Justina Coptic Orthodox Church in Rancho Cucamonga, California when she was a little over 3 months old. It was raining so hard that day, but as soon as we pulled into the parking lot of the church, we saw a beautiful rainbow on top of the church. It was amazing to see the rainbow and we immediately stopped thinking about the “inconveniences” of the rain on this special day and instead focused on the beautiful sign from God. Even though we had chosen Justina as Sophia’s middle name on her birth certificate, we also chose Justina as her baptismal name as well.  

Lessons Learned:

• Focus on the positive
• God is all around us, we just have to look

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34

When Sophia was 8 months old, I started to notice that she wasn’t finishing her 6 ounce bottle in one feeding (she had to take a 10 minute break after every 2 ounces). I decided to bring the feeding issue to her doctor’s attention at one of her doctor’s appointment and Sophia’s doctor decided to send her to a special therapist to get it checked out. We met with the therapist and she asked me to feed Sophia in front of her. The therapist was surprised and said that she had never seen anything like this before in her life. The therapist reassured me that there is nothing wrong with the way Sophia was swallowing, nothing wrong with Sophia’s development, and that Sophia’s weight is perfect for her age according to the charts. So, even though the therapist was surprised at Sophia’s eating habits, she was not concerned and told me not to be concerned. The therapist figured that Sophia is just a petite baby and that her stomach was just small.  I am not going to deny it, it was very hectic to try to feed her all day long so I can be sure she got enough nutrition. But I figured it’s ok, as long as she is healthy and ok, hopefully when she grows up, it will get better. 

Sophia’s one-year checkup came and we went to the doctor, of course you go through that list they give you and answer all these questions. So, I went in and had to explain my answers to her doctor because I didn’t have the clear yes and no answers to many of the questions. Is Sophia crawling? Yes and no. She started crawling but very slow crawling not the same way you see other kids crawling. Is Sophia walking? Yes and no. She walks but has to hold on to something, she can’t walk by herself. Her doctor was not concerned and said kids can start walking by themselves between 1 year and 18 months so she is not late, especially since she started to crawl and walk. I asked her doctor if she thought that Sophia’s issues with crawling and walking were due to her being weak from the feeding issues I mentioned 4 months ago, which we were still dealing with (she still takes a break in between feeding). The Doctor reassured us that according to her growth chart she is more than perfect and on top of all that, she met all her developmental milestones, without missing a single one. So, she said not to be worried but she will send her to pediatric physical therapy so that they can provide Sophia with some exercises to help her with the crawling and walking. I said ok but honestly as a mother something was not sitting right inside me. Everyone who knows me, knows that I worry too much about everything and also, I am a very impatient person, so I figured it was just me worrying too much. 

I took Sophia to her first physical therapy appointment and her therapist was very sweet. She examined Sophia and couldn’t identify anything wrong with her, so she advised that she believes Sophia’s issues with crawling and walking might be a combination of two things. The therapist believed that Sophia may be scared and also may be a bit weak so the plan was to work on those 2 things. Sophia was initially approved for 1 therapy session every 3 weeks, so the therapist had to show me what I should do and do it at home until the next session 3 weeks later. Although the therapist examined her and couldn’t find anything wrong with her, I still had fear but didn’t know why, maybe because I compared Sophia to her sister, who started walking at the age of 10 months. So I kept trying to convince myself that every child is different. 

Lessons Learned:

• Don’t worry about tomorrow
• Trust your instincts

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances. 

“Trust in the Lord with all your heart, and do not lean on your own understanding.” Proverbs 3:5

We attended every therapy session and Sophia was starting to show a tiny bit of progress. So, the therapist advised me that if she doesn’t show her any progress by 18 months (January 2016), she will have to refer her to a Neurologist. I was terrified at this point just to think there might be something wrong with Sophia. We started exercising more at the house and she started to take her first steps not holding on anything but not in front of the therapist, she wouldn’t walk in front of her. Prior to attending the last therapy visit where the therapist would determine if Sophia will be referred to the neurologist, I was able to take a video of her walking (see the video below) hours before the session. When we arrived at this last scheduled therapy session, I showed the video to the therapist and she couldn’t understand why Sophia wouldn’t walk in front of her. But I explained that my daughter had a unique character. We laughed and she said I don’t need to refer her but advised me to keep the exercises so they can strengthen her. 

Sophia’s 18-month checkup came and everything went well. I still mentioned the feeding issue to the doctor and the answer was “your daughter is 17% above average in weight,” meaning she is doing much better than it feels like. Sophia was doing well with the exercises, but the way she was walking was not improving. Her way of walking was the same way as you will see it in the video below. For me that’s not normal after 2 or 3 months of practicing walking plus she was so fragile with no balance. She would lose her balance often and could easily fall while walking. I knew there was something wrong but I didn’t know what it was and even the doctors couldn’t help because they don’t see anything wrong at this time.

In February 2016, I started to not feel well. I was very tired and I also had a very fast heartbeat.  John suggested that I take a pregnancy test, but I laughed and said I am not pregnant we got Sophia with a huge miracle that took 5 years, do you think after a year and a half I’ll be pregnant. So, he said what do we get to lose? And guess what, John was right, I was pregnant. All of us were so super excited and couldn’t wait to hold this new baby, especially Sophia. She loved babies. On the other hand, I had some questions for God: how and why now? My brother was getting married in 5 months, my youngest is a year and a half. It was going to be a bit tough, but I realized hey this is my third miracle baby, I thanked God for all the blessings and asked Him to guide me and help me raising three kids. I scheduled an appointment for blood work.  Then got a phone call to confirm my pregnancy and to schedule my first appointment with my OB-GYN, which has to take place after my 8 weeks of pregnancy. So, they scheduled me for the third week of March which was my 9th week and I was due October 2016. 

We went to see the doctor and hear the first heartbeat and get an estimated due date. We did the first ultrasound but the doctor couldn’t hear a heartbeat. She said we are not going to jump to any conclusions, she wanted me to do another ultrasound with a very high-tech machine because if I am less than 9 weeks pregnant, she might not be able to hear it with her machine. We went to another floor and did a very detailed ultrasound but no one wanted to give us any information. Went back to see my doctor, all of this was on the same day, and she delivered the news to us. “I am sorry, but your baby stopped growing at 7 weeks and there is no heartbeat.” I was shocked and I asked her do you mean my baby is dead inside me? And she said yes and we have to remove it immediately. The entire family was devastated. This was the toughest day of our lives, at least that’s what we thought at the time. 

Lessons Learned:

• The Lord works in mysterious ways
• We have to trust God, even when we don’t know the answer to “why?”

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances. 

“For I, the Lord your God, will hold your right hand, saying to you, ‘Fear not, I will help you.’” Isaiah 41:13

Losing a baby to a miscarriage hurts a lot, both physically and psychologically. I was confused, I was hurt, and I couldn’t explain all of the other feelings I was feeling. I couldn’t stop asking God why? As much pain as we were in, just a few weeks later, God began revealing the answer to “why”. 

On one of the hot days in May 2016, we all went outside to the backyard and Sophia insisted on drinking water from a regular bottle of water, not her normal cup with a straw. I was helping her, but anyone who knew Sophia knows how determined she was to be independent, even at less than 2 years old. While she was drinking from the water bottle, she spilled it all over her and wet her clothes. I took her clothes off so I can get her a dry set of clothes and she was hanging out in just her diaper. John noticed right away that there was a slight inward curve in her back. He brought it to my attention and I said I never noticed it before. I questioned myself as to why I had never seen it before.  I’m with Sophia 24/7 because I moved into her room from the day she was born, I bathe her every day, but I had never seen this curve in her spine before. So how come I never saw it before? It turned out that because the curve was so slight, you can only see it when she is standing and not wearing a shirt. And that never happened because she is sitting down most of the time including for her bath.  If she was walking, she always had at least a shirt on her. So, I scheduled an appointment with her pediatrician as soon as possible. 

We visited her doctor and she checked on Sophia. The doctor noticed that Sophia had not gained that much weight since January. Then, she decided to do an X-ray on Sophia’s spine and legs. The X-ray results came back and we were told that the spine looks perfectly straight. The doctor then advised us that Sophia’s left leg was a couple of millimeters longer than the right leg and suggested that this was what was causing the curve. Sophia was referred to pediatric orthopedic surgeon so we can get more details about this issue. 

Moving forward to June 2016, we visited the orthopedic department. After going through another X-ray on Sophia’s legs, we met with the orthopedic surgeon to discuss the curve in Sophia’s back and I brought up my concern to him about the way Sophia is walking. He explained that there is a very tiny difference in the length of the legs, but that difference was not likely to cause the curve in the back nor affect the way that Sophia was walking. He also said that most of us have tiny differences between the lengths of our legs that we don’t notice. He decided to refer her to physical therapy to strengthen her muscles because he noticed some weakness and also to refer her to a genetic doctor to make sure that everything is ok with Sophia. 

I have to admit, I went to the genetic doctor’s appointment with zero concerns. It was one of those appointments that I went to, just for the sake of it, and I never thought that there might be something wrong with Sophia. The appointment was scheduled one week before my brother’s wedding and one week before Sophia’s second birthday.

On July 21, 2016, we went to the appointment with the genetic doctor. We started the visit with a case manager that had so many questions for me. The Doctor came in and examined Sophia walking and getting herself up from the floor. Then she looked at me and said, “your daughter has Muscular Dystrophy.” Honestly, I had never heard of Muscular Dystrophy before so I asked her what it was. She said, “weakness of the muscles.” I replied, “ok, so she needs medicine?” Keep in mind, I still didn’t see it as a bad thing or have any clue what we were dealing with. The doctor said, “there is no medicine.” I said, “so she will need physical therapy?” She said, “do you know what Muscular Dystrophy is?” I said, “no, I never heard of it, that’s why I asked you what it is.” She explained that there are many types of Muscular Dystrophy and that we need to do blood work to confirm that Sophia does in fact have Muscular Dystrophy. If it is confirmed from the bloodwork that Sophia has Muscular Dystrophy, then we need to do genetic blood work to know which type of Muscular Dystrophy Sophia has. I asked the doctor, “so, it’s not confirmed yet that Sophia has Muscular Dystrophy?” She replied, “I am sure she has Muscular Dystrophy, but I can’t tell you which type.” I was pissed at the doctor! According to her, only blood work can confirm the disease, yet she is so confident that Sophia has it. While leaving the doctor’s office, the case manager came to me and said, “please don’t search the internet about Muscular Dystrophy, it’s very scary.” I said, “that’s the wrong thing to tell a mother.” 

John was in an all-day meeting in Riverside, but I called him and told him anyway. Until this day, he remembers getting the phone call while in the meeting and just going numb. He stopped hearing me as soon as I said Sophia has “M…” and came home believing that I told him Sophia has “MS” (Multiple Sclerosis). When I got home, I told everyone about this doctor’s “crazy guess” and insisted that I wanted to deal with another genetic doctor and never deal with this same doctor again. We scheduled the blood work for next week, after my brother’s wedding and Sophia’s birthday. But inside me, I couldn’t stop thinking about it and asking myself “what if she is right? What if Sophia has Muscular Dystrophy?” 

Lessons Learned:

• God is always by our side
• God will never do anything to harm us

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“And we know that all things work together for good to those who love God, to those who are the called according to His purpose.” Romans 8:28

In this particular post, we will be sharing each family member’s feelings after receiving the test results and how we dealt with the news.  We did Sophia’s blood test and it came back indicating that she did in fact have Muscular Dystrophy. So, we ended up doing the genetic blood work for Sophia, John, and I.  

Around the middle of September, we attended an appointment with the genetic doctor (remember her? the one I couldn’t stand) to go over the results of the genetic blood work. She started with, “I have bad news and good news. The good news is that Sophia did not inherit the Muscular Dystrophy from you or John, so Angelina doesn’t need to be tested. The bad news is that Sophia has an extremely rare form of Muscular Dystrophy known as ‘LMNA Muscular Dystrophy’. LMNA is usually inherited, meaning it doesn’t normally come as a result of a gene mutation like it did with Sophia, and generally, when it’s not inherited, it typically affects boys and not girls.” I replied, “talk to me about LMNA. Which part of the body does it affect?” The doctor said, “every muscle in the body from the neck down. Sophia will eventually lose the ability to stand and walk, but the timing will depend on how aggressive the disease is.” 

I broke down really bad (we found out later that there are only 50 recorded cases for LMNA Muscular Dystrophy worldwide and that this type of Muscular Dystrophy was discovered back in 1999). I asked the doctor, “how can this happen?” She asked me, “do you believe in God?” I said, “yes.” She then said, “the mutation of the gene happened when Sophia was developing and only God can control this. The odds of a girl getting this rare type of Muscular Dystrophy without it being inherited from the parents is 1 in several million. But, miracles happen every day and I recommend that you watch a movie called “Miracles From Heaven.” 

The doctor then advised us that we need to come up with a plan, since there is no cure and since every muscle (heart, lungs, jaw muscle, back muscle, etc..) is affected. So, she referred us to a GI (Gastroenterologist) doctor, Cardiologist, Orthopedic Surgeon, Pulmonologist, Pediatric physical therapist and Pediatric Occupational therapist. And that’s how the whole team for Sophia was created. From that day this genetic doctor became my friend. She was there for me every step of this journey. I went home and explained everything to John and more importantly I asked him to get the movie, that she suggested. I was looking for a miracle and hope. We watched the movie and oh boy, that movie really hit home. The story was very similar to ours, the sick child (different disease), the mom that was losing her faith, the dad that was calm and keeping it together through his faith. Now I can say that there is a different ending.  All of us watched the movie together and we all cried together. So, let’s talk about how we felt at this point. Every one of us will be talking about him/herself: 

Nermine: The day I found out about the muscular dystrophy I felt angry, upset, helpless, my heart was broken into pieces. I ran to God and screamed and screamed, hoping He can hear me. I begged Him to forgive me for my sin because I truly believed He was punishing me. Then when I heard about the rare disease I questioned Him why He gave her to me if He knew that this will happen? Why when I cried to Him and asked Him for forgiveness He punished me more with the worst news ever? Where is His mercy? What did Sophia do to deserve this type of life? How will she be when she discovers how disabled she is? Will she lose her faith? How can I answer her when she asks me, “why me?” I asked God why me, my family? If it’s because of something I did then punish me not my kid. There was no response from God, a long period of silence. This whole journey was a struggle between me and God. But I started to discover little by little that He always has a plan. We might not like His plan, but trust me after being in the midst of a burning fiery furnace for 3 years His plan is the best. 

Angelina: Once Sophia was diagnosed, I couldn’t even count the amount of thoughts going through my head. Before Sophia was born, for eight years I had been an only child and always wanted a younger sibling. So, when my mom told me she was diagnosed at just two years old, and I heard everything that came along with the disease, it felt like just when my new reality was finally coming together, everything was now falling apart. The worst part for me was hearing that Sophia’s life expectancy was around 20 years old. The first things that came to mind was everything that I wouldn’t or might not get a chance to do with her. For example, I thought, “what if my future kids don’t get a chance to meet their aunt or only meet her when they’re young?” or “what if she won’t be able to do big activities with me?” However, those weren’t the only things constantly circling in my head. I wanted to know, “why us, our family has no trace of these genes whatsoever?” “what did we do” “why out of the millions of rare chances there are to get this mutation, why Sophia?” “why isn’t she going to get a chance at having a normal life?” The thing I wanted the most was an answer to all of these questions. 

John: “It is what it is.” These words became the most hated words I could ever say to or in front of Nermine. I began questioning myself about how calm and at peace I was about Sophia’s diagnosis. Was I in denial? Was I using my faith as an excuse not to show emotions as a father? Why am I so calm and at peace knowing that my baby’s life was going to come to an early end? Why am I not bothered by the fact that Sophia could never have a “normal” childhood, running with her sister, cousins, and friends? Why was I not worried about how Sophia would survive if anything ever happened to me and/or Nermine? Should I pray to God asking Him to heal Sophia or should I just repeat the words in the Lord’s Prayer – “Thy will be done”? One of the earliest lessons I learned from this journey is that no matter how many times we may repeat something, we don’t necessarily truly believe it. It was Sophia that taught me to look beyond our current situation on earth and look up at what awaits us if we are good. It was through Sophia’s attitude and actions that I began to realize that the answer to “why Sophia? Why us?” was “because you need this.”  

Lessons Learned:

• God does everything for a good reason, even if we don’t know it yet or never know it
• God is the only One who can comfort you in situations like this 

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances. 

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

With all the bad news we were informed with, we felt we only have God to run to. He is the only one who can do the impossible. If there is no cure, it doesn’t mean that’s the end. With God there is always hope. I ran to Saint Pope Kyrillos and prayed and asked him for help and his prayers. I started praying every night and was begging God to heal Sophia. Honestly, deep inside of me, I knew that God will not heal Sophia now. This was a really big deal that was not be going to disappear overnight, not because God can’t, but because I felt that there was something big behind it. So, I figured that until we know what’s behind this, I’ll keep praying that God will listen to my prayers. For almost 2 weeks, there was no response from God until I went to sleep one night and I saw Saint Pope Kyrillos in my dream. He was sitting down dressed in his gold Tunic and had his gold crown on (see picture below) and I was standing up holding Sophia and all of a sudden Sophia was sitting on his lap and they were talking. I didn’t hear what they were saying. I didn’t talk to him nor did he talk to me. Then I woke up. I was so mad at myself, how come I didn’t speak to him, how did I lose this chance to ask him to heal her. I told John and everyone in the house about my dream. I was happy because I felt that it was a great sign. I felt that God was listening to my prayers, He didn’t forget about me, and that He will heal Sophia, but wants me to be patient. We all felt that in order to be able to defeat this fear we all were in, we need to stick closer and closer to God. Thank God, Sophia was very advanced in her speech, therefore I started to teach her how to pray. Her doctor believed the reason why she was so advanced in her speech was because of her Muscular Dystrophy and explained that when someone is weak in something, they advance in something else. 

We started the medical journey. They set up the schedule of Physical therapy and Occupational therapy. We had 2 sessions every week. They had to get to know Sophia and she needed to be comfortable with them. Everyone was super nice and kind. Their goal was to strengthen her muscles so she can have a semi normal life.  The location was 15 miles away from home, so they did both sessions back to back on a Tuesday so it can be easy on Sophia and I. We scheduled an appointment with the cardiologist, so we can monitor the heart. 

The Pulmonologist was pushed out until she turns 3 or 4 years old, because she was too young to go through these tests. We also attended the first appointment with her GI doctor, and we got a case manager assigned to Sophia that had to go over everything Sophia eats every day. Then we discovered that her calorie intake is barely 700-800 calories a day, which is very low for her age. And they said she needs to be at least at a minimum of 1000 calories a day. So, the doctor said before we take any route we need to know what is going on in her stomach. I asked the doctor can it be the muscular dystrophy effect. He said, “no, this type of Muscular Dystrophy doesn’t affect the stomach muscles.”  Remember because the Muscular Dystrophy and its effect on the heart and lungs muscle Sophia can’t go under anesthesia unless we absolutely have to, so endoscopy was not a good option. Our best choice was to do a test which requires that she eat a small portion of food with radiation, then monitor how the food was moving through her stomach which she is strapped down under a machine for about an hour. I went numb, I couldn’t imagine the day will come where I was intentionally feeding my child something that contained radiation. We tried to consider any other option, but this was the next best thing to try and figure out why Sophia wasn’t eating enough to sustain her growth. We had to come up with a plan. She needs to be hungry before we go, so we can make sure she will finish at least most of the food they will provide and she needs to be entertained while being strapped for an hour. If you are wondering why they had to strap her? Because she had to lay down still so the pictures can be clear enough to see what’s going on in her stomach. My brother and his wife wanted to come with us so we can take turns entertaining her. They allowed us to take an iPad so we can play her favorite songs which was a huge help. We finished the test and even though there were some heartbreaking moments when she cried and asked us to carry her, she did pretty good for being only two years old. We went to see the doctor to get the results of the radiation test. The result was: there is a very tiny delay in digestion but it wouldn’t cause her not to eat. So where is the problem? The doctor said that we can’t say for sure what the problem is. Are you kidding me, we went through all of that and we still don’t know what the problem is. This was the beginning of a big problem between me and this GI doctor. 

Lessons Learned:

• God will always protect His children
• God is always by our side, even when we don’t feel Him around us

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances. 

“Many are the afflictions of the righteous, but the Lord delivers him out of them all.” Psalms 34:19

Sophia’s GI doctor suggested a few solutions to increase her calorie intake: we can add a powder that was high in fat to her food and milk. He also suggested 2 kinds of medicines, one that had some very serious side effects to the brain (we can’t remember the name now, but we said no as soon as we heard about the side effects). The other medicine was an antibiotic, which was supposed to cause the muscles in her stomach to contract and work extra to hopefully allow her digestion to speed up. Finally, he advised that if none of these options work, we may need to consider inserting a Gastrostomy Tube (“G-tube” or “Feeding Tube”). One of the many things we were warned about when Sophia was diagnosed with Muscular Dystrophy was that there were increased risks associated with Sophia being fully sedated for surgery, so we were against the G-Tube option. We all agreed to start with the least invasive solution which was the powder and we will visit him in two weeks to monitor the progress. We also saw the cardiologist and his plan was to do an echocardiogram, ultrasound to check her ejection fraction, and a heart monitor every year. 

We tried the powder in her milk, pancakes, popsicles in any food you can imagine that she eats. The result was she discovered that her milk and food tasted different and she was getting full quicker meaning she wasn’t able to finish her regular portion. Of course, when we went back for the 2-week visit the doctor, he noticed that she didn’t gain any weight so we explained to him that the powder solution didn’t work. Th doctor then revisited the subject of the 2 different medications again. We were still against the medication that could damage her brain. So, he suggested the antibiotic, but I was very hesitant once I learned that Sophia would need to remain on it for the rest of her life if it worked. I told him that I was concerned that we will be damaging her immune system and she wouldn’t be able to fight any infection that she might catch. He said that it was our only non-invasive option at this time.  I was mad at him because I kept on insisting if we can identify what the problem is, we will be able to find the solution. He had the same answer which was we can’t identify the problem because of her condition so we need to try whatever we have that might work. 

We got the medicine and we started giving it to her. The only side effect that he said might happen is that it might cause her some cramps. We didn’t experience that side effect thank God but we noticed a huge decrease in her appetite to the extent after 5 days she wouldn’t take more than half a cup of milk all day. Sophia loved milk, because it was easy to drink and digest. So, we kept on searching all the side effects of that medication and sure enough, we found out that one of the rare side effects is a decrease in appetite. I stopped the medicine right away and reached out to the GI doctor and asked him about this side effect. He advised that loss of appetite is a very rare side effect and that he had never seen it with any of his patients in all of his years of practicing medicine. I told him well guess what my daughter’s condition is a very rare condition, so I am not surprised. After we discussed everything with him he said we don’t have another choice other than surgery for the feeding tube. I asked if we can give it a little more time to see if there is anything we can do to get more calories into her.  This was around the end of December 2016. So, he scheduled to see us in the beginning of February 2017. 

During that time, I ran to God again but through Sophia this time. I taught her a very small prayer and we started practicing every night. Here is her prayer: “Thank you, Baba Yasou (Jesus), for everything, please help the poor, please heal the sick people, please watch over us and please forgive us. Amen” I do say this prayer every night up till now. It’s very comforting. 

I was determined to help her gain weight so we don’t have to go through surgery. So, I got creative with the food that I cooked. I tried finger foods, snacks, regular meals, and anything that can cross your mind. I was trying to feed her all day long. I used all of the tricks that moms use to feed their kids. It was very tiring and I couldn’t imagine that this is how life will be. But I didn’t have another option. 

One day, we were all hanging out in the living room and we noticed Sophia waiving towards the laundry room door, but none of us were standing there. So, we asked her, “who are you waiving to” and she said “Abouna” (Priest). We looked at each other and John said, “Abouna (Father) John (our priest from our church) is not here (that’s the only Abouna Sophia knows).” Sophia said, “no it’s not Abouna John.” I thought of Saint Pope Kyrollos but I couldn’t imagine that this can be true, even though something inside me believed they had a connection, because of my dream. So, we showed her a picture of Saint Pope Kyrollos that we have in our bedroom and she said: “This Abouna.” 

It was a huge blessing, we all were shocked but we also know that all children are angels. But the question I had, why would Saint Pope Kyrollos appear to Sophia? I ran to the library at our church and looked for a picture for Saint Pope Kyrollos so I can hang it in Sophia’s room. There weren’t any pictures available, so they ordered one for me. I ordered a small one so I can fit it in Sophia’s room, but when I received it, it was huge, the biggest I’ve seen. I took it home and it fit perfectly in the space between Sophia’s bedroom door and closet door. As soon as I hung it up on the wall, Sophia said, “Baba Kyrollos.” She recognized him immediately although she saw him just once, or so we thought. So, I had to ask her, “did he visit you again?” Sophia said, “yes.” Over the next few weeks, we started seeing Sophia laughing, playing, and kissing the headboard of her bed by her herself and when we asked her, “who are you kissing?” or “what are you laughing at?” She would answer, “Baba Kyrollos, he is so funny.” The only explanation I had for all this at this time is, Sophia is his child.  Remember when God answered my prayers through Saint Pope Kyrollos’ intercessions and I found out that I was pregnant, I told Saint Pope Kyrollos “this is your child.” 

Lessons Learned:

• God has the perfect plan, even when we cannot see it
• God always hears our prayers

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances. 

“My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9 

Beginning of February 2017 came and we went to visit the GI doctor, and of course the beginning of any visit starts with weighing Sophia. We found out she gained almost 1 pound. I was shocked!  All of this work 1 pound only? I was feeding her nearly all day: if she was awake, I was trying to feed her. How are we going to continue like this? Besides the constant battle to get her to eat, I had to write down every single thing she ate and the amount, so they can calculate how many calories she’s taking in per day. With all of this, she was only consuming approximately 700 calories per day. So, her doctor was not happy with this at all and he said that adding just 1 pound in a 6-week period is not enough. Therefore, he advised us that we need to move forward with the surgery to install the feeding tube in her stomach. I broke down at the doctor’s office. I felt no matter what I do, I can’t get her to gain weight. The doctor felt bad and decided to give me one more chance for 4 weeks. He literally said this is your last chance if she can gain more weight during these 4 weeks than we can put the option of the surgery on the side. 

The whole idea of the surgery was killing me because there was a chance that we can lose Sophia from the surgery itself. Because of her weakened muscles, there was a higher possibility that she would not be able to come out from under the anesthesia. What can we do to save our daughter from surgery? How would we feel if we said yes and she dies? How can we handle the guilt? So, I asked John even if she didn’t gain weight after 4 weeks can we still refuse the surgery? His answer was there is a legal concern regarding that: at some point, they may try to interfere with our decision as parents in order to try to get her the nutrition that she needs. So, I started to cook more food and creating new fun ideas and tricks so she can eat. And guess what? She refused to eat. It got to the point where she was refusing any food and was only drinking her milk. I was angry and scared. I was angry for the fact that I tried and tried to avoid surgery and she is not helping me. I was scared if we don’t go ahead with the surgery we will lose her because of the lack of nutrition. 

End of February came and we found out at the doctor’s office that Sophia lost the 1 pound she gained earlier of the month. He scheduled an appointment with the surgeon and as well as an appointment with anesthesiologist. I was very upset with God because I felt he tied me up and placed me in a corner without any help. He could have saved her from the surgery, but He didn’t. As our Heavenly father, why is He watching us being tortured and not doing anything to help? In my mind, when you love someone and you can help, you wouldn’t hesitate. Imagine what God, who can do the impossible, can do if He chooses to. Why is He silent? I stopped praying. I was so upset with God. On the other hand, Sophia never stopped her little prayers at night, which made me ashamed of myself. But still, I was too stubborn to go back and pray. 

We met with the surgeon, who scheduled the surgery for the end of March, 2017. Usually it’s an in and out surgery, meaning we get out of the hospital the same day. But in Sophia’s case, he wanted to monitor her for 4 days because of her condition. The surgery was scheduled for the early afternoon, not early in the morning. They take the younger kids early in the morning. This was very frustrating for us! How am I supposed to let her fast all day, without her milk or water till 12 o’clock? How can expect a two-and-a-half-year-old not to get their milk or even water after they’ve been awake for 5 or 6 hours? We then met with the anesthesiologist who explained to us that because her last echocardiogram results, he believed that she should be fine with the anesthesia, but there still a chance that we might lose her, therefore, we still had to sign the legal documents that we are aware of that we agree to proceed despite the higher risk.

Back when Sophia was diagnosed I followed a lot of religious pages on all my social media accounts. I was always looking forward to a verse or a word that can comfort me. It made me feel that God was talking to me. After I stopped praying I didn’t bother. Till one day I opened my Facebook and this verse appeared in front of me: “My grace is sufficient for you, for My power is made perfect in weakness.” 2 Corinthians 12:9 What made me pay attention to this verse, is that it started appearing to me 4 to 5 times every day on my Facebook account or Instagram account. I couldn’t understand what was the message behind it at the time, but for sure God was talking to me. 

Every night I grab Sophia and a cup of water and go upstairs to sleep. Most of the nights she wakes up thirsty in the middle of the night so I always make sure I have some water next to me. Almost two weeks before surgery I took her and went upstairs and forgot to bring the water with us. So, I told her I’ll grab a cup of water and come back. I wasn’t worried to leave her on her bed till I come back because she knew and I knew she can’t walk. We have done it before. If I need to grab something, she always waits for me. So, I went downstairs to grab some water and John was asking me for something, while I was answering him, we both heard Sophia saying: “Mom”.  Both of us jumped and ran because that “Mom” came from downstairs not from her room. Sure, enough she was standing at the bottom end of the stairs standing and holding the rail with one hand. I asked her, “are you ok? How did you come down? Are you hurt?” John also asked her. “did you fall? How did you get down here?” She answered us very calmly: “Don’t worry Baba Yesou (Jesus) helped me”. Our mouth was opened and we were speechless for a second. I asked, “how did Baba Yesou (Jesus) help you?” She said: “He held this hand (right hand) and I held this (the rail) with this hand (left hand).”  I asked her again: “Where is Baba Yesou (Jesus) now?” She said: “He left. He said He had to go to church.”

For a second, I doubted everything that Sophia said, but because God knows how weak my faith is, He did the impossible. Not only did Sophia walk across the whole hallway from her bedroom to the top of the staircase, but she walked down 12 steps of the staircase. It was not physically possible for her to come down the stairs on her own, she didn’t have the strength in her muscles to hold the rail on her own and she could not walk on a flat surface without losing her balance, so there’s no way she could have maintained her balance coming down the stairs on her own. He did actually come to her to tell me “I am here with you all, even if I am silent.” As happy and excited as John was, he had a funny feeling in his stomach that there were more things to come to us from God through Sophia. That feeling also had some anxiety associated with it, because he realized that there was something special about Sophia and that her time with us may be limited (he didn’t share this with me until after Sophia departed).

Lessons Learned:

• Rely on God for strength
• All things are possible with God

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances. 

“but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

After the message that God sent us, it was very clear that we should not fear the surgery. The surgery date came and a lot of our family members came the night before for support. We tried to keep Sophia up the night before as late as we could so that she can wake up late close to the time we have to leave the house for surgery. As soon as she woke up it was time to go to the hospital. So, there was no time for milk or anything, we told her we have a doctor appointment. 

We got to the hospital and they checked us in and we went inside to get her ready. We were supposed to wait a half hour for them to take her, but that was not the case. They had some complication with another surgery so Sophia’s surgery and our wait time ended up being delayed by two hours. Two hours no water no milk and she was getting frustrated. I was worried about everything that day. They came in with a type of medicine to get her a bit dizzy so they can take her in and start her IV. On the way to the surgery room we were allowed to walk with her only until a certain point. As we were walking and they told us to stop, my heart stopped. I realized this is it. This might be the last time I see her. I broke down so bad but God was there through John. John was trying to hold it together so much so I can lean on him. I know inside him he was broken into pieces, because at the end of the day no matter how strong he is or how strong his faith is, he is a FATHER.

The surgeon told us before the whole surgery should only take about 1 hour. So, we waited and waited and this one hour was the slowest hour ever. Our eyes were on that door, the doctor should be coming out from it. As soon as we saw him, John and I ran to him, first thing I asked, Is she alive? And the doctor said yes. Everything went perfect and she woke up. Give me 15 minutes and I will call you to get in to see her. I thanked God a million times and we were relieved. We started to call our family to give them the great news and also so they can come to the hospital. 

After 15 minutes someone came outside and called her name so we can see her, but they allowed one member of the family only because she was not in a room yet. She was in a recovery section to be monitored with one nurse. So, John told me to go. The nurse took me to a hallway that is full of people that just came out of surgery, she didn’t need to tell me where Sophia was because I can hear her crying and screaming from the beginning of the hallway. I ran to her and Oh Lord what did I see?  I found my daughter hooked up to dozens and dozens of wires and machines. I couldn’t hold my tears, I started talking to her but all what I hear is her crying and screaming. I asked the nurse why is she crying is she in pain? She said, No, it’s the anesthesia wearing off and she wants you. I started crying and trying to calm Sophia down but nothing was working so the nurse said I think it’s a good idea if you carry her because her heart rate was going up. I said oh please yes but how? How can I carry her with all these wires and the machines are hooked to her? She said don’t worry about it, I’ll take care of it. Sure enough, she did and I was able to hold and hug Sophia with all these wires, and as soon as I did she calmed down and stopped screaming and crying. The nurse informed me because of Sophia’s condition they have to keep her in this section for a few more hours so they can monitor her closely and assigned a nurse to be with her till she leaves to her room. She was drugged for all the hours she was there. After she calmed down and slept we started to rotate between John, Angelina and me to be with her. But everyone has to carry her so her heart rate doesn’t go up again. 

After maybe 3 or 4 hours they said she is stable to go to her room and that’s when everyone else can see her. The hospital was our home for the next 4 days. We had a lot of visitors and all the doctors and nurses were super friendly and nice. They had to train me on the G-tube machine and increase her intake of the formula slowly to 500 ml or more before we leave the hospital and also monitor her handling of the amount of the formula. There were a lot of changes that will be taking place now in our lives. First, we have to carry Sophia on our left arm from now on, so we don’t put pressure on the G-tube and hurt her. We have to order a new G-tube and see her GI doctor every 3 months so he can change it. We have to make sure she takes the 500 ml everyday but the majority will be through a slow drip at night while she is sleeping. Every time she finishes her feedings, she can’t ride in car or do anything involving a lot of movement until she digests her food. I was overwhelmed with everything and didn’t know how I can physically do this plus all the therapy we have to go to. I decided to take it one day at a time but I couldn’t stop worrying about it. 

During our stay at the hospital, we had to explain to Sophia what happened to her and what is a G-tube. She was not worried about it. She was calm and did not get upset. She was happy and laughing as if there was nothing wrong or different. Sophia was being her normal goofy self, joking with us as usual. Her reaction at that time being for me was normal, “she is a kid who doesn’t realize what’s going on” is what I was thinking. We went home and I was nervous because of the G-tube. I didn’t want to hurt Sophia by accident. It took a lot of practice from me to deal with it. So that was our routine: we agreed to give her 60 ml per hour (we will know why those numbers are important later) during her sleep of (7 or 8 hours) as well as whatever we can give her later during the day. The goal was to try to get her at least 500 ml, or more, through the G-tube. This way it wouldn’t interfere with any activity we have during the day.

I was still going to encourage her to eat solid food, so in the future we can get rid of the G-tube completely. That was my goal. We were scheduled to see her GI one month after surgery. And glory be to God she gained 3 pounds. We couldn’t believe it. The doctor was happy and we were happy. Thank God this solution to Sophia’s lack of nutrition was working, for now. 

Lesson Learned:

• Cast your fears and doubt on the Lord

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“You, who have shown me great and severe troubles, shall revive me again, and bring me up again from the depths of the earth. You shall increase my greatness, and comfort me on every side.” Psalms 71:20-21

When Sophia gained 3 pounds after the G-tube surgery, we were very excited and felt that we can breathe a little bit now. Unfortunately, this didn’t last very long. One week after the visit with her GI doctor where we received the good news about her weight gain, Sophia started to wake up in the middle of the night and was throwing up. In the beginning, we thought maybe she was sick. But she didn’t throw up when she ate regular food, even when she was sick. Sophia was getting scared of the feeding tube to the extent that she started begging me not to give her the formula through the G-tube at night. I started skipping a few nights to give her a break but she kept on throwing up, 2 times out of 3. I called her doctor and he suggested to reduce the amount I am giving her from 60 ml to 50 ml per hour. This helped initially, but that didn’t last more than 1 week. 

It was so frustrating! After all that we went through and when we finally thought we will have a solution to Sophia’s lack of nutrition, this happened. However, Sophia’s attitude was amazing us day by day. She would have a very rough night but then she wakes up in the morning, it was as if nothing happened. She would wake up in a very good mood, happy and enjoying her day. A little child who was living with a positive attitude. There was nothing that could get her down, she had a positive outlook on life and NEVER complained. We all were getting closer to God day after day, and I had to remember the closer you get to God the more trials you will go through. That’s when we realized it’s ok to go through what we have to go through as long as God is by our side. Through Sophia’s attitude, we were reminded of God’s mercy and that He was in fact by our side.

After the surgery, we took a month break from physical therapy during Sophia’s recovery time. As soon as she went back to physical therapy, we noticed a big improvement and that was because of her good nutrition. She was gaining a lot of strength in her muscles and it was noticeable. Around July 2017 we had to change her G-tube for the first time. This involved sucking out the fluids from the “balloon” inside her stomach that was holding the feeding tube in, then pulling out the feeding tube and then re-inserting the new feeding tube and finally filling the “balloon” with fluid using a syringe. They expected us to do this at home on our own, but we had no idea what to expect, so we asked if we can do the first feeding tube change at the doctor’s office so that he can walk us through it.  While the doctor started changing it, she cried and screamed a little bit. When we asked her, she said it didn’t hurt but there was some pressure. I thanked God that she didn’t experience any pain, because we have to go through this every 3 months. We explained to the doctor that she is not tolerating the formula from the G-tube and he suggested that we change the formula to something easier to digest. That gave me hope. This formula may have been the problem causing her to throw up. 

We switched to the new formula and for the next 2 weeks, it was great – no throwing up. Yet again, we were back to the same problem – Sophia was throwing up in the middle of the night while she was receiving the formula through the feeding tube. At this point, I started to modify the feeding based on what worked best for Sophia.  I started to experiment with the amount of formula to figure out how much she could tolerate without throwing up. It was successful! She was not throwing up, but she was not gaining a lot of weight. I tried as much as I can to give her regular food during the day so that I can decrease the amount of formula at night. 

Of course, her GI doctor didn’t like what I was doing because she is not gaining the amount of weight that he wanted her to gain between visits. There was always a frustrating discussion between him and me. I told him, “since we don’t know the reason why she is not tolerating food, we will not be able to find a solution.” His answer was the same as always, “we can’t find the problem because her condition is not allowing us to do more testing.”

That’s when I decided to reach out to my friend, her genetic doctor. I explained to her my point of view and concerns and I also asked her if she can transfer me to another GI doctor. At this point, I didn’t want to deal with Sophia’s current GI doctor at all. She was so kind and offered to refer me to another GI doctor, but also offered to have a chat with Sophia’s current GI doctor on my behalf. I agreed to her suggestion and she spoke to the GI doctor and explained the disease from her point of view. She dealt with numerous children who had muscular dystrophy and noticed a lot of children don’t gain that much of weight even on a G-tube. She said it might be the disease that is causing all of this. At this point he needs to back up and take it easy on us. 

It felt great to have someone who understood my frustration from a medical prospective. Someone who reassured me that I am not a bad mom and I am trying the best I can to help my daughter. Her genetic doctor also advised me that it’s time to refer her to a pulmonologist, so we can check her lungs. We were due for Sophia’s yearly echocardiogram, so we also scheduled an appointment with her pulmonologist around the same time. 

Lessons Learned:

• No matter how bad things seem to be, you can choose to be positive through God’s grace

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“Those who sow in tears shall reap in joy.” Psalm 126:5

October 2017 came and we did her echocardiogram and we received a phone call from her cardiologist saying the results were normal. We also scheduled Sophia’s sleeping test for December 2017 to check how her lungs were functioning. She has to go and overnight in their sleep clinic for 1 night and they have to hook her up to some machines so they can monitor her breathing and lung’s functions during her sleep. They said when it comes closer to her appointment they will give me all the instructions. It was a very stressful time, but God always reminds us that He is there, through certain people or situations. 

Shortly before Thanksgiving in 2017, we visited my brother and we met one of his friends named Beshoy Selim, who is a professional photographer.  Although it was our first time meeting him, Sophia acted as if she had known Beshoy for years. Even though Sophia had a friendly personality and was very social, the way she acted with Beshoy surprised all of us. We all sat down to have dinner and she insisted on sitting with Beshoy and that he had to feed her. And oh Lord, she ate as if she hadn’t eaten for months. We knew it right away that there was a special connection between her and Beshoy. 

We visited my brother again during Thanksgiving 2017 and we saw Beshoy there again. Sophia was super exited to see him and this time he had his camera with him. So Beshoy decided to take some pictures of her just for fun and Sophia decided to pose for him (you will know later how this helped us a lot in 2019). For anyone that knew Sophia, you know that Sophia had a very strong personality and only did whatever Sophia she wanted to do.  

The day of her sleep test was getting closer. They said I will overnight with her and we can bring an iPad, any a toy she loves, snacks and juice. We need to be there around 8:00 pm and we will leave around 6:00 am. We arrived at the sleep clinic that night and we started the procedure. Sophia didn’t know what they will do and I didn’t know what to expect, therefore I told her we will overnight there only. She was only 3 years old, and had already been through so much, so I didn’t want to scare her. The nurse was so friendly thank God. She started to show Sophia the wires that they will attach to her and where she will attach them. We started with her arms, chest and legs. And we agreed that she will attach the rest of the wires to her head when she falls asleep and during her sleep if they notice she needs some oxygen then they will come and attach an oxygen line. 

Sophia was nervous in the beginning but she started to watch her favorite show “Peppa Pig” and fell asleep. Then the nurse came to attach the rest of the wires and as soon as she was done I couldn’t hold my tears. Sophia was attached to what seemed to be hundreds of wires. I couldn’t see my tiny little one being hooked to so many wires and we have to go through this yearly. The nurse also explained that if through the night she wouldn’t need oxygen then that’s a good sign. These types of tests take about 4-6 weeks to get the result.

Of course, I couldn’t sleep that night at all. I was praying she wouldn’t wake up during the night so she doesn’t freak out. Sophia woke up at 5:30 am and what I was afraid of happened. She started screaming and crying and all I could do was try to calm her down. The nurse came and she said that she will unhook everything and we are done. Thank God, they didn’t hook her up to any oxygen during the night, so that was great news in the middle of this mess.

Sophia usually gets excited around Christmas time because of all the gifts she will get, decorating the Christmas tree, and listening to Christmas music. Christmas was her favorite holiday. But, Christmas 2017 was a tiny bit different. She opened a lot of gifts and was super happy but there was a special gift that she received from Beshoy that made her happier than any other Christmas gift she had ever received before. He printed out one of the pictures he took of her around Thanksgiving and wrapped it for her. It made her so happy! I felt that God was telling us don’t be upset, you will have some good days next to the bad days. Every night before I go to sleep I pray to God for a miracle. A miracle to heal her from this devastating disease. I was holding on to hope. A hope that was inside me that I didn’t want to let go of. But something inside me was telling me not now, God will heal her, but not now. The thing that was helping me to have some patience was that I truly felt God was by my side. We all felt His presence during this journey. That feeling was a feeling that only God can make us feel. 

Lessons Learned:

• Even in the darkest days, God will shine His light on you. 

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“Then Jesus called a little child to Him, set him in the midst of them and said, “Assuredly, I say to you, unless you are converted and become as little children, you will by no means enter the kingdom of heaven.” Matthew 18:2-3

Sophia’s Physical Therapy and Occupational Therapy were going great at this point. Everyone there became like her second family. We had to increase her sessions so we now had a total of 3 sessions every week. When she went there, she had so much fun and she made a lot of friends. She was always excited to go. They were great with her and they made the therapy fun every time. I was so happy to see her happy but honestly, I was super exhausted from life itself. John always offered to take over for a day so I can get a break and I always refused, maybe because I didn’t want the guilt to haunt me later. We received the result of her sleeping test and everything came back normal.

On March 13, 2018, I gave Sophia a shower and was going down the stairs and I slipped down the stairs. While I was going down I made sure to hold Sophia tight and take the hit on my back so she doesn’t get hurt. I screamed because of the pain and Sophia was screaming because she was scared. When I reached the last stair, I looked at her and I said, “are you ok?” She said “yes mom.” John came running and I told him to take Sophia while I tried to get up. He did and checked her and she appeared to be fine. I didn’t care how I felt I cared more about her. I was ok, a little sore, but I was ok. She was ok too until a few hours later when she was trying to stand on the couch and couldn’t stand because of pain in her foot. We checked her foot and it was not swollen and looked normal. We went to sleep and woke up the next morning and she still couldn’t stand on her feet. So, I called the doctor and she said bring her in. I took her in and explained everything that happened the night before. Even the doctor didn’t think it was broken, but she decided to do an x-ray to make sure. When the results of the x-ray came back, everyone was shocked. Her ankle was broken from both sides. I couldn’t stop crying because all that came to my mind is that I caused this to happen. It’s because of me Sophia’s ankle was broken. It’s because of me that she will have to be in a cast. The guilt I had to carry was so heavy. I couldn’t stop blaming myself. 

The doctor said she was hoping that she will be in the cast for 2 weeks but maximum 4 weeks. After a whole month in the cast, we went to the doctor and we took the cast off and did another x-ray. Unfortunately, Sophia’s fractured ankle is not healing as fast as it should because of her muscular dystrophy. So, we have to cast it again for another month. Sophia was a warrior throughout all of this. She never complained about being in a cast or not being able to take a normal bath because of the cast. She would, however, occasionally make us go to Starbucks to get the “stoppers” so that we could use them to slide inside her cast & relieve the itching. 

Now, let’s go back to a few years before I got married. When I first moved to California from New York, my brother introduced me to a lovely girl named Silvia. Silvia became more than a sister to me and I met John through her, they were friends and neighbors for so many years. She got married a year before me and we used to live close to each other. Her husband, Edmond, became one of John’s best friends and she became a sister to me. She had two girls and I had two girls. Silvia was my age and Edmond was John’s age (they were born just a few weeks apart). 

On March 19, 2018, I was talking on the phone to a friend and my dad walked in crying and at first, I couldn’t understand anything he was saying. I hung up and said what is going on, he said “Edmond passed away.” I was shocked and I asked, “Edmond who?” He didn’t answer me because we only knew one Edmond, Silvia’s husband. It was a car accident. Believe it or not it’s been over 2 years and I still sometimes can’t believe that he is gone. I called John, who was driving to Bakersfield, and told him the news. I called Silvia and asked her to pack everything and bring the girls and come over, because she lived 3 and a half hours away from me and everything will be done in California. This whole situation shook every one of us because it proved to us we never know our time. I looked at it as “anyone of us can go any minute, but the question is are we ready?” Once we are gone we can’t undo anything that we messed up before. Once we are gone can we can’t fix our mistakes. We don’t know when we will leave earth, only God knows. As much as we were hurt by Edmond’s passing, it served as a serious wake up call for a lot of people. 

During the first week after Edmond’s passing, it appeared that it didn’t hit Silvia yet that her husband had passed away. Everyone was busy with the arrangements for the funeral and getting the body released for the funeral. Sophia knew Edmond very well and she understood that he went to heaven. Funeral Day came and all of us broke down very bad but Silvia was the worst. I guess it just hit her that day that he was gone. After church, John took me, Silvia, Sophia, and one of Edmond’s relatives in the car so we can go to the cemetery for the burial. Silvia was crying hysterically and I was really worried that Sophia would freak out, so I was trying to calm her down but she was not hearing a single word I was saying. All of a sudden, Sophia put her tiny hand on Silvia’s shoulder and Silvia immediately stopped crying and looked at Sophia. Then Sophia said in a very calm voice, “Silvia don’t cry, Adra (Virgin Mary) said everything will be ok.” Everyone was silent and shocked.  Edmond’s relative asked Sophia what else did Adra (Virgin Mary) say. Sophia changed the subject and she started to be her goofy self again (she would do this very often when she didn’t want to talk about what she had seen or heard). Silvia didn’t cry for the whole ride to the cemetery.

Lessons Learned:

• If we view life through the lens of a child, you will see God’s Hand in everything you face in life.
• The Lord works in mysterious ways and will never do anything to harm us.

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“In all your ways, acknowledge Him, and He shall direct your paths.” Proverbs 3:6

After being in the cast for 2 and a half months, Sophia’s doctor wanted her orthopedic doctor to check her cast and approve if we can take it off or not. Back in October when we saw him he said that Sophia might need a surgery on both her ankles or put both of her ankles in a cast for 2 months because her ankles were stiff and it will take away the ability for her to stand. We figured back then we will deal with it when the time comes. 

In June 2018, during the visit of the orthopedic he gave us the ok to take the cast off and we were so happy. But, that didn’t last too long. After he checked the ankle that was in the cast for two and a half months he said our only option now is surgery on both Achilles tendons and she needed it as soon as possible. It was one thing after the other. I can’t explain how we felt around that time. But numb would be the best description for now. Her feeding intake was not going good at all. She was getting weaker and weaker. But, at the end, as John always said, it is what it is. 

I called to schedule the surgery and they said the doctor doesn’t have any openings now for the next 6 months. So, if I want to schedule I will be looking at January 2019. They put her name on the waiting list for January 2019. I informed her physical therapist and she actually recommended the surgery. Our concern was how we can strengthen her muscle after surgery. We will have to stop the physical therapy for 2 months during the period that she will be in the casts. Again, it is what it is, we will deal with it when the time comes. For now, let’s take it one day at a time and enjoy it, because tomorrow is not guaranteed. 

On August 30, 2018, while driving to Sophia’s physical therapy session (it was just Sophia and I in the car) the following conversation happened between Sophia and me:

Sophia: Mom, where is Heaven?

Me: Do you see the sky up there, Heaven is behind the sky.

Sophia: What does heaven look like?

Me: I don’t know. Baba Yesou (Jesus) took some people there and brought them back and they said it’s beautiful, full of flowers and butterflies and its always daylight with no night time.

I was surprised why Sophia was asking me these questions, so I asked her a few questions.

Me: Sophia why are you asking?

Sophia: Because Baba Yesou (Jesus) told me He will take me with Him to Heaven.

I pushed my breaks and I had to park. I turned around and asked her

Me: When did He tell you that?

Sophia: Right now. He was sitting next to me and told me that.

Me: What was He wearing?

Sophia: His white long dress.

I was speechless, shocked, scared and I didn’t want to believe it. The day before John had to travel to work and drove for 20 hours. He was not coming back for another 4 days. I can’t call him and tell him what happened. I was worried about him driving back. What if God decided to take Sophia before John comes back. I will carry that guilt forever. I didn’t know what to do. We finished the physical therapy visit and went home. I didn’t want to tell anyone so no one will freak out. I was scared because I didn’t want God to take her. I couldn’t imagine how I can live without her. I didn’t know why God would give me a warning that He will take her. Is God planning to take her this weekend while her dad is not available? I decided not to tell John for his own safety. I didn’t want to scare him and meanwhile I didn’t know what was God’s plan. 

For the next 4 days I couldn’t sleep, I was so certain inside me that something will happen to Sophia. I was so scared and I totally forgot how merciful God is. The weekend passed and nothing happened. After John arrived I gave him a chance to rest and I told him what happened. He said, “we can’t control that, it’s out of our control and there is nothing we can do about this, it’s in God’s Hand and let His will be done.”

I was not shocked from John’s reaction.  John’s faith during this whole Journey is what was keeping me on track. Whenever I lose it, he always comes and talks to me about our faith and we have to let go, knowing that God is in control. I always felt I am the crazy one and John is the one who brings me back to my sanity. That’s the balance that God created with us. Whenever one of us felt down (it was almost always me), the other one is always standing by to help. 

Two weeks after this conversation, I got a phone call from her orthopedic doctor saying they got an opening for 31^st of October, 2018 because someone else cancelled. If I don’t take that appointment then I will be looking for an appointment in January 2019 or later. I had to decide right then if I am booking the surgery or not. I booked the surgery and after I hung up, I realized oh my God this is it. I connected the surgery with the conversation I had with Sophia about Jesus telling her that He will be taking her to heaven. I thought to myself, “she has to be under anesthesia for the surgery, this is it she will not survive the surgery.”

When we think we know everything, it turns out we don’t know anything, because God had a totally different plan. 

Lessons Learned:

• We don’t always get signs or messages from God, so when you do, appreciate it and trust in God, for He will never do anything to harm you. 

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“For the Lord God is a sun and shield: the Lord will give grace and glory: no good thing will He withhold from them that walk uprightly.” Psalm 84:11

I had to let go of my fear and let God be in control. But I don’t have a magic button to turn on/off my fears. Prayers were my only solution.  Let me tell you one thing from this journey: prayers are so powerful, they can move mountains and God listens to all of our prayers. The problem is we don’t have patience to wait and see God’s work. We are always in a hurry and we always want to have it our way, even though our way might not be always good for us. Only God knows what’s best for us.

Surgery day came and we didn’t share the conversation that Sophia had with me with anyone. Surgery was an outpatient surgery, so there was no overnighting in the hospital required for this surgery. The doctor will make 3 cuts in her Achilles tendons and cast both her legs. Then 2 weeks after we have to remove the cast and re-cast her again. Sophia was not scared and had peace with the whole process. If you ask me, that alone was a miracle. Only God can fill your heart with peace. 

We went to the hospital and we had to go through the same process. It was like the feeding tube surgery day. Saying good-bye to her when they took her to the surgery room was harder this time. Waiting for an hour till the doctor comes out and say surgery went well was the longest hour we had to go through. I was so scared, couldn’t control my anxiety, couldn’t talk to anyone. As soon as I saw the doctor we ran to him and as soon I heard she is ok, I couldn’t stop crying.  I was relieved to know that Sophia’s conversation with Jesus about taking her to heaven wasn’t preparing us for her departure today. As relieved as I was, I then started to wonder about what the future has in store of Sophia.

Now we have to wait for them to call us to see her. When they called us, I went in and I could hear her crying from the beginning of the hallway and again I ran to her. It was the same scenario of the feeding tube surgery, but this time I can’t hold her because of the casts. I sat very close to her and tried to calm her down. She was in pain from the surgery. The doctor said he will give her pain medications and she will have to be on pain medications for maybe a week. We can’t leave till she is stable. 

Sophia had several surprise visitors at the hospital. We had no idea that they were coming, because we only told immediate family about this surgery. In addition to our immediate family, Nader & Beshoy showed up. Nader & Beshoy both came from over 60 miles away in the middle of rush hour traffic. The biggest surprise for Sophia was Beshoy Selim. The excitement that she had when she saw him was unreal. I was so worried about her reaction from the surgery, but God really works in mysterious ways. God works through people in your life. Sophia forgot all about the pain and the surgery and wanted Beshoy to feed her. 

Around 9:30 that evening, the doctor said she is stable and I can release her now. I had to sit in a wheelchair and let her sit on my lap, keep both her feet straight on a pillow to get to the car. It was difficult to think how we will do our day to day stuff. But I learned a very important lesson during this journey. God will never give you something you can’t handle. Sometimes we sit back and think about all that we went through in our lives, and it amazes us how far we came, because at that time we thought there is no way we can handle this. But God knows best.

Sophia was not supposed to stand on her casts for the first 2 weeks. We loaded up on Starbucks stoppers for scratching inside her casts and I got two plastic covers for both her casts so that we can shower her. For the first week, two people had to carry her around to make sure both her legs were straight. Everything was different, difficult and took much longer to get it done. But with God’s grace we managed. I didn’t use the feeding tube during that time other than for the medicine because my biggest concern during the night was throwing up on the casts, so, I was not willing to take a chance. 

After 2 weeks we visited the doctor and he said everything looks ok so we will re-cast both legs for another two weeks. But after the other 2 weeks she will need to wear her AFO braces 24 hours a day for a few months, with just a tiny break in between. Sophia didn’t have any problem being in that cast other than the fact that they were itching her a lot, but she managed to have fun with it. She started drawing on one of them, then the other one, then asking people to sign them for her. 

When we went to get the sizing of the AFO braces, I noticed that something was different with her right hip. So, I brought it to her orthopedic doctor’s attention and he confirmed that the Muscular Dystrophy started to affect her hip joint. He suggested that we extend the right AFO brace all the way to the hip. I told him no. I was angry frustrated, I had enough. I explained to him that every time I try to fix anything, something else comes up and it looks like I can’t defeat this disease. I didn’t want her to be more uncomfortable.  She doesn’t walk anyway so extending the brace will not benefit her and only make it more uncomfortable for her. Thank God, the doctor agreed. 

During this whole rush thing with the surgery we had to postpone her yearly cardiologist appointment to December, which usually takes place in October. The appointment was scheduled for late December 2018. During the visit the doctor said everything looks ok so let’s schedule the Echo ultrasound and halter monitor as we usually do every year. Sophia always hated the halter monitor because it hurts her to take off the stickers from her body after. I explained to him what she went through the last 2 months and he agreed to do the mini heart monitor in the clinic and the echo ultrasounds. They still need to use stickers but they are smaller and with less stickers which was much easier on her.

On our way out, we found an appointment for the Echo on December 31, 2018. So we booked it.

Lessons Learned:

• God will never give you anything that you cannot handle

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“Do not fear, little flock, for it is your Father’s good pleasure to give you the kingdom” Luke 12:32

Friday, January 4, 2019, I was driving back home by myself and my phone rang. It was the cardiologist for Sophia. He usually calls me after the echo each year to give me the result of the echo and tell me that everything is normal, but this time was different. I don’t know how I drove home while I was talking to him, I only remember him saying, “Sophia has heart failure, the ejection fraction is not normal, her numbers came back at 40 and the normal numbers should be between 55-60. Sophia will need 3 medications for the heart twice a day. One of them we will have to increase the dose gradually. Pay attention to her very closely because 2 of the medications will lower her blood pressure and may cause her to get dizzy or faint. If she gets dizzy or can’t breathe take her and run to the Emergency Room. I want her to start her medications today, so I will put the order to the pharmacy right now, so you can pick it up within an hour.”

After I hung up, I stayed in my car for 5 minutes because I couldn’t believe what I just heard. I didn’t know what to tell John and Angelina when I walk in. I couldn’t believe this is it. We reached a dead end. Sophia was just diagnosed with cardiomyopathy. Cardiomyopathy means your heart muscle is weak. In most cases cardiomyopathy is curable or manageable with medication, but not in Sophia’s case. Once Sophia’s heart muscle gets weak, it can’t be reversed. The muscular dystrophy disease will weaken the heart muscle until her little heart is too weak to continue beating. The medicine was literally just to buy us some time with her, but no one can predict how much time. 

As soon I walked in to the house John and Angelina can tell right away there was something wrong with me. I was thinking to tell John alone but I broke down in front of both of them and said Sophia’s heart got effected with the disease. I explained to him what exactly the doctor said and he said let’s get the medicine. I don’t think at that moment John fully understood what the doctor said or what it really meant. Sophia didn’t know what was going on. While we were picking up the medicine from the pharmacy, Angelina recorded a video of Sophia singing a beautiful hymn (see Video below). It was her first time ever singing a hymn. We didn’t even know that she had memorized any hymns. We felt while we just got the most devastating news about our child, our child was glorifying God. At this point we understood God’s message to Sophia. We also understood why the surgery was moved from March 2019 to October 2018 and the cardiologist appointment was moved from October 2018 to December 2018. Nothing was planned by us. It was all God’s plan and timing. It was His will.

The very next Monday I pulled her medical file and called every doctor on her team to schedule an appointment with each one of them. I knew the one who will give me the bottom line was her genetic doctor. Her orthopedic doctor said don’t bother with her braces because he wanted Sophia to be comfortable at this point. Her GI doctor said don’t force any food but make sure she has something before you give her the medications. Her Pulmonary doctor said we need to do the sleeping test because her lungs muscle might have been affected also and she will need a breathing machine during her sleep. Her genetic doctor confirmed everything that I was scared of. John asked her straight forward how much time do we have? She said I can’t give you an answer, but she asked Sophia where she wanted to go. Sophia said, “I want to go to the zoo.” The doctor looked at us and said, “take her to the zoo as soon as you can.” Also, she suggested that we see a palliative care doctor. At this point, I knew where we were heading. When people get referred to palliative care doctors, it means it is time to get the patient comfortable their last few months. 

Her cardiologist said he will treat her as a regular cardiomyopathy patient. The medicine might work and improve her ejection fraction and might not, only time will tell. He wanted to see her every week so he can increase the dose and will do another echo at the end of February.

We were able to get an appointment with a pediatric palliative care doctor. He was so sweet and kind. He knew exactly what we are dealing with, and how to treat us. The first thing he said, “there are only 50 cases of LMNA muscular dystrophy documented in the medical archives in the world and your daughter is the youngest one whose heart is affected from this disease on record. The youngest one before her was 7 years old when his heart got affected.” At this point, he said that my contact will be with him only and he will be the one to contact any other doctor from her team, to make it easier on us. 

What got our attention was that Sophia attended all of those meeting with us and she never asked anything. It’s like God closed her ears around certain words. Both the genetic doctor and palliative care doctor advised that we should talk to Angelina and explain what was going on with her sister and prepare her. Was it easy to do that? No, but we didn’t have another choice. Our life at this point turned upside down and we were so lost and scared of how life will be without her. John and I both agreed that the only way we could go through this without being broken is by sticking to God. Prayers and communion were our only protection. Were our days going smooth and easy? Definitely not! It was going worse than we imagined. 

Around the end of February, we did another echocardiogram and the ejection fraction went down even lower than before. It reached 36. At this point, Sophia started having a hard time swallowing and eating. We also did her sleeping test and her Pulmonary doctor said she will need a BiPAP machine during her sleep because her lung’s have been slightly affected. 

Her genetic doctor contacted me after she received all the updates and urged me to take Sophia to the zoo, because that was Sophia’s wish, and she was concerned that we might not have enough time. She also sent me an article about LMNA muscular dystrophy end stage, so I can get an idea of what to expect. The article stated once the heart is affected the average life expectancy is between 12 to 18 months. According to all the symptoms, the genetic doctor and the palliative care doctor didn’t expect Sophia to make it to May of this year, so only 3 months from now. 

 Lessons Learned:

• When life gets too hard to stand, kneel in front of God
• It is in your pain that God is closest to you

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

After getting the news that Sophia has heart failure, we knew that we had very limited time with Sophia and wanted to make sure that we did as much of the things that Sophia wanted. We also realized that we never took the time to do a family photo shoot. So of course, I reached out to Beshoy Selim. I had to explain to him everything going on and told him we had limited time. I remember this call took place on a Monday and Beshoy decided to cancel whatever he had the following weekend and came to spend the whole weekend with Sophia and did the family photo shoot. Of course, Sophia was super excited and stayed up until midnight with him and Dalia (his wife) creating a new batch of slime (they surprised her with a slime-making kit). 

The day of the photo shoot was very rough because Sophia has very bad diarrhea all day. It was one of the end stage symptoms that I read in the article that the doctor sent me. Beshoy was so patient with her and it took him several hours to finish this shoot. After he showed us the pictures, we chose 3 pictures that we wanted him to print on special frames. Meanwhile, John and I decided which picture we would use for Sophia’s funeral but we didn’t share it with anyone and it was not included in the 3 pictures that we asked Beshoy to print. So Beshoy didn’t know anything about that picture. 

The diarrhea stopped after 2 days and we received the BiPAP machine for her breathing and it was not easy to let her accept it. I stopped using the feeding tube and took off the AFO braces, because it was too much to hook her up with all these devices and ask her to be comfortable. We had to explain to her that the breathing machine will help her sleep better. At this point, nothing was going our way. Sophia was eating less, one night the BiPAP hose was wrapped around her neck while she was sleeping because she was turning so much, and on another night, she detached the BiPAP hose from the mask during her sleep and I woke up and found it on the floor. I felt that God threw me in a big ocean and asked me to swim but I don’t know how to swim. 

I’ll be very real here with everyone one of you, because people had a very wrong impression about us and some started calling us saints. I had my days with God. Some days I was very upset with Him, some days I was ok with Him, and some days I was on my knees and crying out for Him. I didn’t want Him to take Sophia, although I knew this is His child in the first place. I knew for sure there was a purpose for Him to bring us through this tough trial. I knew regardless of my emotions, feelings and pain, He will still be with us. But I had such a hard time accepting His will. For so long I thought God was punishing us for something we don’t know anything about, but He was not. He was teaching us, forming us in the shape He wants us to be. I remember when Sophia was first diagnosed John said, “It is what it is. God’s will be done. If this journey will be our way to get to Heaven, I’ll take it.” Nowhere in the bible was it mentioned that our lives will be smooth and easy for us to reach Heaven. The opposite was mentioned: “these things I have spoken to you, that in Me you may have peace. In the world you will have tribulations; but be of good cheer, I have overcome the world.” John 16:33

The palliative care doctor discussed with us the idea of preparing a “DNR” (Do Not Resuscitate). He suggested that we sign it because he saw how fragile Sophia was and if we don’t sign these documents, once her heart stops beating, they will attempt to resuscitate her and probably break her ribs and she will end up on a life support machine. Not only will they cause so much damage because of how fragile she is, but once her heart is too weak to continue due to the muscular dystrophy, it is probably going to be the same for many of her other muscles in the body and she will not be able to survive. So, John and I agreed to go and sign these documents so that Sophia will not have to suffer. That day was one of the hardest days for us. 

Next, the palliative care doctor suggested putting her in hospice care. I jumped and I said No. I had to put my mom on hospice and I am not doing it with my daughter, I will handle her and her needs. I remember the doctor explained to me she can be in hospice but still in the house. I knew exactly what hospice meant and I realized I don’t have anything against them, but I was against the idea of hospice, maybe because I didn’t want to believe that my daughter is dying? John asked a few questions and we learned that pediatric hospice care is different. John’s main concern was that once hospice care started, Sophia would not be treated for her muscular dystrophy and associated heart failure and that they would no longer approve diagnostic testing like the echocardiogram. The doctor reassured us that not only would Sophia be able to continue seeing all of her doctors and get the same treatment, we could pull her out of the hospice care anytime we chose. I felt something was shocking me and I told the doctor the DNR paper is more than enough for today and that we will discuss hospice when we feel that Sophia needs it.  John and the doctor understood how I felt and we agreed to hold off on further discussions about hospice care for now. During that time, one of our family members came to us and said he had a dream of Sophia, she was an angel in Heaven and went and told him, “tell mom and dad that I am ok.” Yet another message from God and reminder that Sophia is ok. 

Beshoy called us about a month after the photo shoot and said I am coming this week with the pictures and I have a surprise for you guys. He came in with 4 large boxes, but we only asked for 3 pictures to be printed. He kept the surprise until the end. When he opened that last box, I ran out of the room and burst into tears and probably only John understood why. While Beshoy was opening the box, he said: “I got Sophia a gift, I framed the picture that I liked the most.” Guess what? It was the picture that John and I chose for her funeral. Beshoy didn’t know that was the picture, so I had to explain everything to him. He was shocked. At this point I felt God was preparing everything for her funeral and that scared me more, because it meant we were getting closer to her departure. 

Lessons Learned:

• We can never hear God unless we are calm
• Talk to God during your toughest days, He listens to you and your tears

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“But He said to them, ‘why are you fearful, O you of little faith?’ Then He arose and rebuked the winds and the sea, and there was a great calm.” Mathew 8:26

Since Sophia was diagnosed with cardiomyopathy we had to put physical therapy and occupational therapy on hold till we know how we will proceed. After talking to her doctors, we decided we will stop all therapy and enjoy every single day with her. I had to explain to Sophia what the cardiologist told me and ask her to let me know anytime she feels any shortness of breath or dizziness. Again, her reaction of peace and calmness was beyond normal.

We planned our trip to the zoo and as luck would have it, there was a special event that day with Peppa Pig (one of Sophia’s favorite cartoon characters). We had an amazing time at the zoo and saw most of the animals. We even had an opportunity to take pictures with Peppa Pig. Also, Sophia loved police officers and firefighters. Because of John’s work, she had the chance to visit the police department and attend many of their social events, but she had never been to a fire department. We were blessed to arrange a visit to the Fire Department through one of John’s client who also is a personal friend. Sophia had an amazing time at the fire department and she not only got to ride in a fire truck, but they also surprised her with her very own fire helmet and sweatshirt with their logo on it.  Sophia had the greatest time. 

Friday, April 26, 2019 was our Good Friday. We woke up and Sophia said: “Mom I’m having a hard time breathing.” I had an oximeter to check her pulse and it was reading between 126 to 130, which was pretty high considering all of the medications she was taking. I called her pediatric doctor and asked the nurse to get me in asap to see her doctor. She went to talk to the doctor and came back and said, “take Sophia to ER right now, we reserved a bed for her.” John was at work so I called him to let him know and then I rushed Sophia to the ER. As soon as I checked her in they had a room and staff prepared for her, but having all the staff around her and trying to hook her up to heart monitors scared her and me. So, I had to stop them and calm Sophia down and ask them to not scare her because her heart rate will jump up. They started to monitor her heart and within a few minutes the machine beeped and her heart rate went up to 136. The doctor said I need to reach her cardiologist to see what he wants us to do. I requested them to do an echo. An ICU pediatric doctor came to me and had to talk to me about what if the result of the echo came back low, since we signed the DNR papers, are you going to keep her in the hospital? I told him: “No, I will take her home, because I don’t want her to be hooked to any machines.”

By that time Angelina and John came to the hospital. I remember that day I couldn’t pray because I didn’t know what I should pray for, all I knew was that I was scared. Sophia was so irritated and she just wanted to go home, it was 5:30 pm and we had been in the hospital from 10:00 am. Around 5:45pm the cardiologist called me and gave me the result of the echocardiogram and her numbers went up to 44. Everyone was relieved and happy to see that the medicine was working and Sophia was getting better, so we went home happy despite being in the emergency room all day on Good Friday. 

A couple of months after Sophia was diagnosed with her heart condition one of my closest friends was going in for a very dangerous surgery and she was so scared. So, Sophia and I decided to visit her before her surgery. That day when I was getting Sophia ready she said: “Mom, Adra (Virgin Mary) said to tell tant she will be ok” I was shocked, so I asked her: “did Adra (Virgin Mary) come to you and tell you that?” Sophia pointed at the Virgin Mary’s statue in her room and said “her statue talked to me and said ‘tell tant she will be ok’ so, I need to take the statue with me and tell her what Adra (Virgin Mary) told me.” Sophia insisted on holding the statue, which is made out of porcelain, in her arms during the entire trip in the car, but only after wrapping it in a small blanket to protect it, and she delivered the message herself to my friend. My friend’s surgery went well and everything was ok for the first week, but everything went downhill after that and she was not doing ok. My friend had to go for another surgery and she was even more scared. I had to remind her of the message that she received from Sophia. God knew what my friend was going to go through and He wanted to assure her that she will be ok even if it doesn’t seem like it at the moment. And yes, she had to go through two surgeries instead of one and the recovery was very bumpy and it took months instead of weeks but at the end she was ok just like what Virgin Mary told Sophia. Our faith gets shaken a lot through several situations that we face in our lives, but if we strengthen our faith we will have peace during any storm. 

Lessons Learned:

• God never promised us an easy life, but He promised to be with us in this life
• We will find peace during our challenges if we remember that God is always in control.

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it.” 1 Corinthians 10:13

After getting the good news of her last Echocardiogram, we started to breathe a little bit and relax from all the stress we had, but that didn’t last long. Two weeks after the results, I received a phone call from Sophia’s palliative care doctor asking me how I felt about the result. I explained to him that I was happy and grateful but something inside me was scaring me, maybe because whenever I get good news something else happens, or maybe it’s just how I am. He said no it’s not you, something is really happening. So here is how he explained it. When the medicine starts working the doctors call it a “honeymoon phase.” It means the medicine is effective for a certain period time because it’s new, but soon after that, everything will go down super quickly. Meaning the heart ejection fraction can go very low within weeks or even days. As much as I hated to hear that, I appreciated him being real with me and explaining what to expect so I don’t put my hopes up. Her cardiologist didn’t explain anything to us nor did he confirm what the other doctor said. 

We decided to take it one day at a time and concentrate on her birthday which was coming up soon. Right before her birthday, a family member passed away. John and I had to go to pay our condolences. She asked me where are you going and I told her someone passed away and me and your dad have to go to pay our condolences. Her answer was: “that’s not fair! Everyone is going to Heaven except for me. I want to go to Heaven too.” I was speechless. I couldn’t answer her. Then I told Sophia, “when our times come, we all will go to heaven.” Sophia then asked, “when will it be my time?” I responded, “only God knows.” 

Trust me when I say I was a mess after this little conversation. John came home to find me in tears. He immediately knew that something was wrong, so he asked me what happened. I explained the conversation with Sophia and he just looked at me and asked, “would you rather have your 4 year old daughter ask you “mom, when am I going to Heaven?” OR “mom, why do I have to die as a kid?” That really put things in perspective and once again reminded me of how merciful God is, as He was preparing us for Sophia’s departure, showing us that Sophia will be in heaven, and that she wanted to go to Him in heaven. Keep in mind Sophia knew exactly what going to Heaven means, because we had this discussion before and she still wanted to go to Heaven. 

Sophia’s birthday was coming soon and we wanted to throw her a birthday party that she would love and enjoy every moment of, since it might be the last birthday we would have with her. We are so glad we did. We surprised Sophia with a white pony so she can ride it in our yard.  We didn’t plan for a huge petting zoo, but God had a different plan. In addition to the pony, the guy brought a pig, baby goats, baby rabbits, a sheep, and chickens. We don’t remember seeing Sophia that excited. She had the best birthday ever. I also took her to the store to choose how she wants to decorate her cake for her birthday. We were blessed that everything went smooth that day and she had an amazing time.

Around the beginning of August, John and I decided to enroll Sophia in homeschooling. I know it sounds crazy, but we believed that if it was according to God’s will that Sophia is cured or lives beyond the doctors’ expectations, God could and would make that happen. We wanted to ensure that she can get an education if God chose to perform a miracle with Sophia. We were not going to sit around and wait, even though the doctors told us that Sophia is not going to make it past a year and a half. It’s the doctor’s medical opinion, but God has the final word.

One of our family members helped me to find a school and program that worked for Sophia. Then God sent me amazing people through the system that were helping me find the curriculum that was right for her and helped me to set up everything according to her disability. 

I was so overwhelmed and stressed. I didn’t know how I will be able to do all of that. But I had to figure a way because Sophia was super excited to be in school. After a month of trying to stick to a schedule, I was so exhausted, tired and frustrated. I got into a very bad depression. I stopped praying, locked myself in my room for a few hours almost every day, blamed God for being quiet with me, for allowing me to go through what I was going through and not helping me. Then, one day John had a very deep conversation with me about God where I was reminded about the number one goal in life: to look beyond the physical world to our ultimate destination – heaven. He also reminded me that God will never do anything to harm us, does everything for our benefit, and He knows what is in our best interests. Even though I have always known all these things, they were the last thing on my mind and my emotions had taken over. I got up and pushed all my feelings to the side and continued my journey. I needed that push to continue. 

Lessons Learned:

• God allows us to go through trials and pain not to destroy us but to bring out the best in us.
• When darkness is screaming that God has abandoned you, listen to the calm yet powerful voice of Jesus “I will never leave you”
• If it wasn’t for the struggle we wouldn’t have the strength. God is always building us even when it seems like He is breaking us. 

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.

“When Jesus heard that, He said, ‘this sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it” John 11:4

Hello everyone, we apologize for the delay of this post. It was very hard to write about Sophia’s last few days with us and go through those emotions again. This post will be longer than any other post because are trying to give you all the details for the last few days of Sophia’s Journey.

On October 7, 2019 we had an appointment for Sophia’s echo. This was our first echo since April 2019. After we finished the echo, we got the phone call from her cardiologist as usual. This time the results were not good. Her ejection fraction dropped to 36. That means, as the palliative care mentioned before, the “honeymoon period” was coming to an end and the medicine was no longer effective. Her cardiologist said we can increase the medicine dosage and wait and see. It didn’t make any sense to John and I because according to her weight, we reached the maximum dosage already and to increase it again would be taking a huge risk. The palliative care doctor said it’s time to start hospice. I was still not ok with hospice. Sophia was acting fine, regardless of how low her ejection fraction was. I had to call her school and pull her out for the time being. She was super excited for her Halloween costume, so we concentrated on that. The genetic doctor called me to try to talk to me about hospice. I finally told her by calling hospice in that means we reached the end of the road and I am having a hard time accepting this. The doctor’s concern was that towards the end, the hospice will be able to provide the help that I will need faster than her own doctors. John supported the idea of in-home hospice care because he knew that Sophia could only benefit from their presence and we could cancel the hospice care anytime we wanted for any reason at all. John finally asked me if I would like to discuss it with one of our priests, who is an MD and was a practicing physician prior to joining the priesthood. I agreed and we met with Father Gawargious to discuss my hesitation with hospice care. It was a very helpful meeting and discussion.

Meanwhile, Angelina’s school had a “trunk or treat” event for Halloween so Sophia was very excited to attend that event on October 23, 2019. It was a blessing! Sophia had so much fun and everyone gave her extra candy because they love her so much and they knew this will make her happy. We came home and the amount of candy she had was beyond anyone’s expectation. We were planning to go to church the next day, Friday October 24, 2019, to attend liturgy and thank God we did and took communion. On Friday evening, Sophia started to feel nauseous, but she was unable to throw up. I initially thought that she caught a cold or something, but then I remembered all of the “last days” symptoms that I read about. When we woke up Saturday morning, Sophia was still feeling nauseous, and she tried to eat, but it was getting worse. I felt terrible and helpless because I couldn’t do anything to make her feel better. So, I called her palliative care doctor and explained to him everything that was going on and he begged me to let him call hospice in. I finally gave up and told him ok. All day Sunday she spent it sleeping. We kept her hydrated but her food intake was almost none including the milk. The hospice consultant came on Sunday morning and she said the nurse will come Monday morning. The nausea feeling was getting worse and worse so they ordered morphine for her. Our priest came to visit her on Monday but for the first time Sophia couldn’t hang out with anyone and asked me to take her to her room. So, Father John said he will come and give her communion on Wednesday after liturgy. On Tuesday morning we started to see the water retention everywhere in her body and we got a home visit from a pediatric doctor. Everyone advised that we stop all her heart medication to ease all the pain she is going through and explained to us that by doing so, Sophia can go any time. This decision was hard to take. We had to choose between watching our daughter suffer or possibly cutting her time with us short. We believe that God has an exact time for every single one of us. So, by stopping the medication it will reduce the pain she is going through but God is still in control of her time with us on earth. So, we decided to stop the medication and put her on Ativan. Ativan is a very strong medicine that helps her to calm down and also helps her with sleep.

Wednesday came and she was able to take communion. Between Wednesday and Sunday morning, Sophia was on these two strong medicines for 24 hours a day. No food at all, no talking, except for the very rare times when she would say one word “water” and we give her a sip of water. Sunday night we started to see her heartbeat getting faster and her pulse started to drop. For some reason, she insisted on holding on to John’s hand with one hand and her uncle’s (John’s brother) hand with her other hand until about 4 am. We spent the night in her room awake because literally we didn’t think she will make it the next morning. The doctor came the next morning and he said she has between 3 to 4 days. After he left I asked my dad if he would like to spend some time with her because I have a feeling today is her last day. Fortunately, our families were able to come by and see her and spend some time with her as well. 

I had that strong feeling that she wouldn’t be with us tomorrow and I don’t know why. She was asleep, almost in a coma, for the last 3 days not even opening her eyes. Her oxygen level started to drop. I laid down on the floor next to her and I couldn’t control my tears.  Earlier in the week, Sophia randomly opened her eyes and scolded me saying “Mom, don’t worry, I am ok!” Around 12:40 pm, Sophia opened her eyes and said, “Mom, I am ok.” And that was the last thing she ever said. John must have had the same feeling as well, because he decided to start playing some of Sophia’s favorite hymns from Palm Sunday for her so she can depart in peace. Around 3:30 pm, I went outside the house and screamed to God and Pope Kyrollos to help us and let her go in peace. Everyone at the house carried her for a little to say their good-bye’s. Around 4:15 pm I wanted to play her favorite Hymn and as soon as I played it Pope Kyrollos’ picture popped on my phone screen 3 times. I knew it was a message from him and he was here to deliver her soul. So, I took her between my arms and started to whisper in her ears not to be afraid and she will see Virgin Mary and baba Yesou (Jesus) soon and to keep us all in her prayers. On Monday, November 4, 2019 at 4:47 p.m., Sophia took her last breath in my arms and all that I kept on saying for the next hour was “thank you God” “thank you for not letting her suffer” “thank you for the peaceful departure and answering my prayers.” 

It was the most difficult moment any parent can go through, but with God’s grace we went through it. The support that we had from family and friends can’t be described. The peace that God provided us is unimaginable. The miracles we experienced with Sophia and after her departure is a huge blessing that we don’t deserve. The funeral that she had is 1000 times better than any wedding I could have given her in the future. Sophia’s funeral was literally a celebration for her arrival to Heaven. When people saw that John and I didn’t cry in her funeral, they assumed that we were in shock. We were not in shock, I asked God the day before to fill my heart with peace and show everyone His glory, and He did. I was aware of everything but I couldn’t drop one single tear, my heart was happy that I was able to deliver one of my kids to God. Our goal as parents is to deliver our kids to Heaven and I was at peace knowing my little angel is in Heaven, and that’s all what mattered. All the pain and emotions after that I had no doubt that God will take care of. He was by our side in this painful, blessed, heart aching journey from beginning to end, so there is no way He will leave us when we need Him the most.

From the day of her departure till 11 months after, we had a lot of sleepless night, days where we missed her so much, days where our heart was aching so much. The holidays and birthdays were the most painful events we had to go through. But we kept on praying night after night and kept on holding onto God and had faith in Him that He will take care of us. And He did. He is always there. The memories will always stay with us but the pain God is always capable of taking away and healing our hearts. 

Lessons Learned:

• Only God knows what we are capable of handling
• If we find ourselves in a situation that seems overwhelming, know that God will get us through it if we rely on Him
• To begin to understand God’s love for us, think of how much you love your child and multiply that by 1,000,000

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.