August 30, 2020

“No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it.” 1 Corinthians 10:13

After getting the good news of her last Echocardiogram, we started to breathe a little bit and relax from all the stress we had, but that didn’t last long. Two weeks after the results, I received a phone call from Sophia’s palliative care doctor asking me how I felt about the result. I explained to him that I was happy and grateful but something inside me was scaring me, maybe because whenever I get good news something else happens, or maybe it’s just how I am. He said no it’s not you, something is really happening. So here is how he explained it. When the medicine starts working the doctors call it a “honeymoon phase.” It means the medicine is effective for a certain period time because it’s new, but soon after that, everything will go down super quickly. Meaning the heart ejection fraction can go very low within weeks or even days. As much as I hated to hear that, I appreciated him being real with me and explaining what to expect so I don’t put my hopes up. Her cardiologist didn’t explain anything to us nor did he confirm what the other doctor said. 

We decided to take it one day at a time and concentrate on her birthday which was coming up soon. Right before her birthday, a family member passed away. John and I had to go to pay our condolences. She asked me where are you going and I told her someone passed away and me and your dad have to go to pay our condolences. Her answer was: “that’s not fair! Everyone is going to Heaven except for me. I want to go to Heaven too.” I was speechless. I couldn’t answer her. Then I told Sophia, “when our times come, we all will go to heaven.” Sophia then asked, “when will it be my time?” I responded, “only God knows.” 

Trust me when I say I was a mess after this little conversation. John came home to find me in tears. He immediately knew that something was wrong, so he asked me what happened. I explained the conversation with Sophia and he just looked at me and asked, “would you rather have your 4 year old daughter ask you “mom, when am I going to Heaven?” OR “mom, why do I have to die as a kid?” That really put things in perspective and once again reminded me of how merciful God is, as He was preparing us for Sophia’s departure, showing us that Sophia will be in heaven, and that she wanted to go to Him in heaven. Keep in mind Sophia knew exactly what going to Heaven means, because we had this discussion before and she still wanted to go to Heaven. 

Sophia’s birthday was coming soon and we wanted to throw her a birthday party that she would love and enjoy every moment of, since it might be the last birthday we would have with her. We are so glad we did. We surprised Sophia with a white pony so she can ride it in our yard.  We didn’t plan for a huge petting zoo, but God had a different plan. In addition to the pony, the guy brought a pig, baby goats, baby rabbits, a sheep, and chickens. We don’t remember seeing Sophia that excited. She had the best birthday ever. I also took her to the store to choose how she wants to decorate her cake for her birthday. We were blessed that everything went smooth that day and she had an amazing time.

Around the beginning of August, John and I decided to enroll Sophia in homeschooling. I know it sounds crazy, but we believed that if it was according to God’s will that Sophia is cured or lives beyond the doctors’ expectations, God could and would make that happen. We wanted to ensure that she can get an education if God chose to perform a miracle with Sophia. We were not going to sit around and wait, even though the doctors told us that Sophia is not going to make it past a year and a half. It’s the doctor’s medical opinion, but God has the final word.

One of our family members helped me to find a school and program that worked for Sophia. Then God sent me amazing people through the system that were helping me find the curriculum that was right for her and helped me to set up everything according to her disability. 

I was so overwhelmed and stressed. I didn’t know how I will be able to do all of that. But I had to figure a way because Sophia was super excited to be in school. After a month of trying to stick to a schedule, I was so exhausted, tired and frustrated. I got into a very bad depression. I stopped praying, locked myself in my room for a few hours almost every day, blamed God for being quiet with me, for allowing me to go through what I was going through and not helping me. Then, one day John had a very deep conversation with me about God where I was reminded about the number one goal in life: to look beyond the physical world to our ultimate destination – heaven. He also reminded me that God will never do anything to harm us, does everything for our benefit, and He knows what is in our best interests. Even though I have always known all these things, they were the last thing on my mind and my emotions had taken over. I got up and pushed all my feelings to the side and continued my journey. I needed that push to continue. 

Lessons Learned:

• God allows us to go through trials and pain not to destroy us but to bring out the best in us.
• When darkness is screaming that God has abandoned you, listen to the calm yet powerful voice of Jesus “I will never leave you”
• If it wasn’t for the struggle we wouldn’t have the strength. God is always building us even when it seems like He is breaking us. 

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.