May 31, 2020

“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.