August 9, 2020

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.