June 21, 2020

“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.