She said she had received Kelsie's newborn screening results and that it had detected an abnormality in the testing for Cystic Fibrosis. She told me that further DNA testing was done that confirmed 2 mutations of the Delta F508 gene of Cystic Fibrosis. WHAT!? That's what I was thinking. It was just a very surreal moment, like it couldn't be true. The phone call was over in probably less than a minute or two. She asked if I had any questions and I just remember saying through the tears that had already started forming, "I think I already know too much." She said "I know, I'm sorry" and told me she would be getting us set up with a pulmonologist right away. I don't even know how to describe what that moment was like. Here I was holding my baby who, despite her hip brace, looked completely perfect and healthy, I had a near perfect pregnancy and just had no suspicions anything would be wrong! I was so careful during my entire pregnancy to do everything right in an attempt to keep my baby as healthy as she could possibly be. But then this. How could it be true!?!? Why did this have to happen to my baby? To us?
I immediately dialed Nathan at work. The rest is just a blur. He answered and I don't even remember what I said. I just know he was trying to calm me down and understand what I was saying but within minutes had packed up his things and was in his car on the way home. He started crying too and kept me on the phone the whole way. We were in utter shock. We didn't know what to do. We felt so helpless, so sad, so in search of answers, and so desperate for someone to tell us it was all a misunderstanding. We cried, we prayed, we made phone calls, and sent emails asking for others to pray. We didn't want it to be true. We clung to one tiny glimmer of hope...the sweat test which is the gold standard for diagnosing CF. Looking back now, its clear it was just a legality because the DNA testing had already been done and revealed TWO copies of the most common form of the CF mutations, so there was no way that sweat test was going to change anything. Still, we held on for another week, hoping and praying.
We went in for her first CF appointment one week later. She was just 3 weeks old. We were there from about 10am until 5:30pm. The sweat test was first and before we left that day, we had confirmation that is was very positive so there was no denying it at that point. After the sweat test, we sat it one clinic room while person after person came in, introduced themselves, and began to educate us about Cystic Fibrosis. It was very clear this was the beginning of a very long and complex road ahead of us.
I remember leaving that day feeling very overwhelmed and exhausted, mentally and physically. My emotions were a roller coaster for sure. At times I felt angry, other times I felt in denial and unwilling to accept it. I would have moments of strength feeling at peace with what lied ahead but then break down all over again from the weight of what all this meant for us, for Kelsie, and for our future. They sent us home that day with a number of medicines to give among other things. And I just remember trying to give her those enzymes for the first time. Not knowing what to do with granules mixed with applesauce in her mouth, she spit it out like any 3 week old would do. It was so difficult figuring out how to do that. She was crying, hungry, I just wanted to nurse her, but instead I had to force her to take this unusual substance and it felt like I was torturing her. I thought for sure she was going to end up hating me or our bond would be broken because of all the things I had to do to her. Irrational, I know, but I was just so devastated. I threw the medicines down and just lost it. Slowly, but surely, it got easier.
Through it all, my faith in God was the one thing that gave me comfort. My faith is at the core of who I am and through it, I see through a different lens. I believe it allows me to view things on a much larger scale; so, seeing this as a part of God's design gave me hope and through Him, I found strength beyond what I could have withstood on my own. I found peace in knowing that He had His hand on the situation and would be with us through it all. At that time, I knew that handing this over to Him would give me the most freedom and comfort and I still believe that to be true. When my faith starts to waver, my anxiety starts to rise and my fear of the future begins to wear on me once more. But when I trust in Him and really really have faith that He can do anything and WILL take care of her, I feel at peace again.
It has now been 2 years since my little girl was diagnosed with CF. She has been so unbelievably healthy and I couldn't be more grateful for that. When we found out she had CF, I had no idea what her first 2 years would hold and while I feared the worst, I was still determined to have them go exactly as they have. A life full of joy and normal baby and toddler fun!
Still thinking back on this diagnosis brings tears to my eyes. I still feel sad that she has to go through this and will have to battle this disease looming overhead every day of her life. I still feel tired from all that I have to do to take care of her every day and I dread the conversations that lie ahead as I explain to her what this disease is and what it means for her future. But this is our life. Every day, we do the best we can to make sure she will remain as healthy as she can be for as long as possible. And every day, I try to keep the balance. I don't ever want this disease to hold Kelsie back. But at the same time, I still have to be careful to try to prevent her from getting sick. I was so NOT a germaphobe before this but have taught myself to be more meticulous about those kind of things. Wiping down every chair and surface in the doctor's office is not something I ever would have done, but I do it now because I want to keep Kelsie healthy as long as I can. But we also take chances sometimes. We go to play groups with other kids and she stays in the nursery at church. She will go to public school and football games and birthday parties and sleepovers. She will play whatever sport she wants or take music or horseback riding or whatever it is she decides to do. But I will teach her diligence and perseverance and the importance of taking care of herself. And I will pray that God will give me the answers to those difficult questions when they arise. I know this has changed me but I also believe it is exactly where I am supposed to be. I am so thrilled and thankful for how well Kelsie has done so far and I give God all the glory. There have been a few bumps here and there and I know there will be more setbacks along the way but I am learning not to worry too much about those until we get there. And when we do, I know God will give me what I need to push through once more.
These pictures were taken just before I got the phone call from her doctor. My sister had just left about an hour before.
If you want to learn more about Cystic Fibrosis, you can do so here!
No comments:
Post a Comment