“The Waiting is the hardest part.”

Tom Petty

Once my husband Jesse and I received the official diagnosis of the baby, we were put in contact with the coordination team at The Children’s Hospital of Philadelphia. (CHOP) We returned home from our appointment on March 27th, and I spent the next 20 hours or so sobbing off and on, and forcing myself to eat. Something I would probably not have bothered doing except I knew that my little guy needed the nutrients, and that was more important than me being sad.

I just had so many questions. “Why us?” “How did this happen?” “How does this make any sense?” I was wracked with guilt, thinking that my son’s condition was my fault. At our past appointment I had to answer a very detailed questionnaire and it just didn’t add up. This condition did not run in my family, I had excellent pre-natal care, I had been taking FDA approved vitamins for many months before we conceived, I had no history of drugs, I was under 35, my hyper logical brain could not make any sense of this diagnosis. A plus B could not equal C, and I couldn’t process what they had told me. Our doctor could sense my guilt when I sobbed out questions about how I could have done better, what I could have done differently to stop this from happening? He explained to me that… well? They didn’t know as much about Spina Bifida as one would assume. The most common thing that correlates to the condition is a lack of folic acid in the mother, but it is not a causation. Other common theories are, exposure to common viruses, over heating, environmental exposure to certain chemicals, the list goes on and on. There have not been enough studies to pin point what actually causes it. The ambiguity of this reality keeps me up at night. Its hard to live with a reality that I did nothing wrong, did all the things I was supposed to do, and am still dealing with the fallout. It seemed so unfair. It seemed so random. I don’t handle random very well. I am not an impulsive person. I very anally and meticulously plan when to relax. Some would call me… “high strung.”

The following day I took off work. Luckily due to being a pretty type A nerd, who doesn’t like to take off work. I had banked a lot of personal days and was able to spend the next few days at home with Jesse, kind of processing what was going on and figuring out what we were going to do. We got a call from the coordination team at CHOP. Deanna (last name withheld for privacy) was a true angel, and probably spoke to me for a minimum of 70 minutes, meticulously going through our baby’s diagnosis with me, all the best and worst case scenario symptoms he may encounter given the lesion he had. (All SB cases are different and depend on how high/low on the spine it occurs. So the severity can range quite a bit) She went through what my diagnostics would look like if we decided to go to Philly, and we worked out a timeline. We were set to go up and meet with the Fetal Diagnostic team on April 15th, 2019. This was not an oversight on anyone’s part, in reality I needed to be at a certain gestation before the diagnostics and the potential surgery could happen, and we found out about Baby H, about a week and a few days earlier than most families, so we would need to wait just a little bit longer.

This was both good and bad news. Good news because I was happy we would have the chance to go and meet with… arguably the most talented and advanced pediatric surgical team in North America, if not the entire world. Bad news because it meant over two more weeks of waiting. Waiting is something we had already gone through so much of. We waited two weeks to see the specialist. and now would wait two and a half more weeks to see if the team at CHOP would even be able to help our baby. All the while knowing that the tiny life inside me was also waiting, and potentially losing more and more function day by day. I would rub my tummy every morning and cry hoping that he was okay, knowing that potentially he was getting worse with every passing day. Each day meant more and more of his spine was exposed while we waited for answers.

After taking the latter half of a week off from work, I finally went back. It was nice to see my friends and co-workers, and the normalcy was comforting. I kept telling myself that things couldn’t be SO bad, if I was at work. If I was working how bad could it really be? So I did my normal hours, I talked to my bosses about what was going on, talked to HR, kept them in the loop about the possibility of me taking medical related leave etc. I took a lot of walks around the office nature walk, and took lots of pictures of baby ducks.

I talked to my therapist. We had been seeing each other via Skype for about six months and she has been (and continues to be) a complete god-send. It was nice to have a neutral party to cry to, as I felt that doing that constantly around the house at my husband was detrimental. She helped me through a lot of my misplaced guilt and anxiety. She helped me realize where that anxiety was really stemming from. Fear. I was scared. I was scared and sad that my angel baby would have a harder life than others, I was scared that somehow his hardships were my fault, I was scared that people would treat him differently and not see his potential, I was scared that the longer I had to wait for this treatment his health may suffer more, I was worried about all those things mom’s worry about, bullying/happiness/the future etc. The things that keep all mothers up at night, let alone moms of kids that have some special needs.

It’s hard to describe how you can love a person so much. A person that you haven’t even met yet. But I loved this little soul so much, and all I wanted was to make sure he was okay, and he would be loved and happy. I wanted him to grow and thrive and live a fulfilling and independent life.

So I continued to wait…. ❤

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