Not unlike the post about keeping Lyla's weight up, I have started and stopped this so many times. Her CF diagnosis has had such a profound effect on me, that it's almost a disservice to try to even put it into words. I'm going to try, because it might reach someone out there. In the few weeks that I've been blogging, I have already come across other families that are living with CF. it's a really powerful thing, and I am so grateful for that. There are some really awesome and strong people out there. Personally, I find it comforting to know that I'm not alone, and when it comes to getting any kind of diagnosis about your child's health, any form of comfort should be welcomed. So, I'm not just sharing this to go along with our personal CF journey, but to maybe reach any other families out there, who have been heartbroken in getting bad news about their kids.
I have to admit that a little bit of my motivation here, is in vain. This is a subject that I'll tell myself that I'm fine reflecting on, but then I'll get some sort of weird physical manifestation of anxiety while it's being brought up. Every time that I've started to write about this, I've gotten a stomach ache, and started sweating. Whenever I hear about friends or family, that are expecting babies, and have to get any kind of testing done, I tear up. So, I'm selfishly hoping that this might be cathartic.
Before I get into it, I need to reiterate, that Lyla is the absolute biggest blessing that has ever happened to me, in my entire life. I imagine that she always will be. No one or no thing can ever top the love and magic that she's brought to all of our lives. I know that her Daddy and grandparents agree. So, yeah, her diagnosis sucked, but it has also made me appreciate every single little second with her.
Around 18 weeks. I remember waking up that morning..and there she was! 🖤
Onto the diagnosis:
When I was 11 weeks pregnant, I went in for my first OB appointment, where they did some routine blood work. A week or two later, the nurse called me with my blood work results, and casually mentioned that I am a carrier for Cystic Fibrosis. I called my husband at work and told him, and he was a little bit concerned. He decided that he would get blood work done to see if he's also a carrier. Well, obviously he is. I cannot remember the timeline of any of this, but once we knew that he's also a carrier, we both just had an uneasy feeling. We knew that our baby now had a 25% chance of having CF. I very stupidly, but humanly, started googling every ridiculous thing that I could about CF. I did not know much about it, even though I had gone to school with a girl that had it. This is where it went downhill. In this case, the internet can be a bitch. I was reading things like if I did have a child with Cystic Fibrosis, they'll be lucky to live until they are 10 years old (try at least 40). Along with that, I was seeing things about how much medicine is involved daily (it's not that bad, by the way), how children are hospitalized overnight all of the time (that's never even been a concern for us), and just so on and so on. This is a little sensitive, but I also read in a forum, that if you are pregnant with a CF baby...well you shouldn't be. Read between the lines. I mean, that is the most absurd thought. That was never an option for us, by the way. That leads me to how and why we found out. I kind of feel like I need to clear the air, for Lyla's sake. Since blogging, someone asked a family member of mine, if we sought out Lyla's diagnosis during my pregnancy, to know if we would even want to continue the pregnancy or not. No. Just no. I really do appreciate people feeling like they can openly ask questions about CF, but that's just not us. This is taking a really dark turn. Back to finding out...
We discussed our concerns with my OB, and she supported us in finding out via amniocentesis. We just had to put our minds at ease. My husband and I are both such planners, and we were already overwhelmed at the idea of welcoming our first baby, let alone adding some health concerns to raising this sweet, new addition. Plus, I really despise the unknown. I do not do well with it. At all. My OB let us know the risks of getting an amnio, but also eased our minds, and reassured us that if we had it scheduled for the right time during my pregnancy, and went to the very best place for it, we'd be ok. And we were. The actual amniocentesis was a little painful, but it was easy. We had it done at 17 weeks, and also found out that we were having a little girl that day. That was pretty spectacular. I was so shocked, because I was sure that we were having a boy. My mother's intuition has improved greatly since then. We met with a genetic counselor, who told us that we'd be getting our genetic results in 7-10 days. Easy enough. Then it took a turn. A dark, hurtful, frustrating turn.
Basically, we waited for a really long time for our results, and there was a lot of back and forth via phone messages. At one point, an intern called and told me that "everything looked fine." I, of course, told our family that we were in the clear, and I even called my OB to tell her the good news. My OB had access to all of my charts, and later told us that something didn't look right. Just within the last year, I can talk about that intern without feeling anger. It was then a lot more back and forth, between us and where I had my amniocentesis done. We're going on, like, 3.5 weeks of no answers, just the genetic team trying to pacify us. This was hands down the hardest time in my entire life, so far. Once her diagnosis did finally come, I was almost relieved. I could finally move on, and get ready for my baby. I remember exactly where I was sitting, in our lovely old house, when that call did come. I remember calling my husband, and him coming right home. And I remember everyone else that I spoke to, what I was wearing, where the dog was laying... you name it. The only other day that I remember those kinds of details about, is 9/11.
My friend's husband said that "this will be their hardest and worst day" and he was right, and I love that he knew that. We're so lucky that only finding out about Lyla's CF, has made for our worst day yet. I know that not all families are as lucky, and I know that there are many more difficult things ahead of us in life.
I took a month to be really-incredibly-ridiculously sad, and try to enjoy the holidays (ha! Yeah right), then it was time to be proactive. I called around to every CF clinic in our state. I interviewed pediatricians. I stopped googling random shit. I took control. I have no idea where I found the strength, but I imagine that it has a lot to do with my daughter. One of the first things that a nurse told me over the phone, was not to google anything about CF, it's all dated. I must not have been the only one. Once we got some plans and appointments in order, I did feel better. It wasn't until Lyla was here, and in my arms, that I knew we'd all be ok, though. I wish that I could say that I haven't looked back since, but that's not true. This diagnosis changed us all. We're just the lucky ones in that it has become a positive, beautiful thing. I have noticed that a "side effect" or maybe a little PTSD from how Lyla's diagnosis was handled, has been that it's really hard for me to get excited about things until they happen. It's kind of a "I'll believe it when I see it" situation. That's not necessarily good or bad to me, it's just how I'm wired now. I still have my awesome, healthy girl, so if I'm a little more cynical as a result of that diagnosis, so be it. But I do believe that situations like this can be powerful enough to actually rewire us.
This post hasn't been very light, but it's raw and real. Like I already said, I appreciate every single day with my Lyla. Because of this diagnosis, I don't care about material things that much anymore, or minutiae that bores me or seeing people that don't make me feel good to be around. It's been freeing in a way. Life is short, or at least it can be. As Lyla grows up, it will be really important to me, to teach her that being born in 2016, with CF, is almost like a second chance. She'll lead a life that we weren't sure she could, and we will hold her hand every step of the way.
Anyone that's been given a diagnosis about a child or loved one, I tip my hat off to you, for getting out of bed every morning, and finding the strength to miraculously move on with your day. If you haven't found that strength, that's ok too. You still might. Stay hopeful and know that you aren't alone. XO
