July 12, 2020

“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.