October 4, 2020

“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.