Before another post from my husband, I want to take the time to make a bit of a retraction about a statement I made in one of my very first posts. I’ve been meaning to do this for a while but I got the perfect opportunity to do so when Andrew emailed me this blog post. After weeks of sadness and extreme darkness and grief, we had a few moments of light where we laughed. We enjoyed the day, we smiled, we functioned. Almost like we did before we got a diagnosis. I was on a high and felt ‘good’ for the first time in a long time. In that post, I believe I used the word ‘promise’. I ‘promised’ that life would go on and some sort of acceptance and a new normalcy would occur. I was wrong to do that. As much as I would like to think that happens, it’s not my place to even say that. Not one experience is the same and there’s no one who can tell you how you’ll feel or even how TO feel, for that matter. I think I already knew that, even at that time, but I wanted desperately to feel ‘normal’ again. What I want for this blog is to share our experience and our journey but also shed some hope, if any, can be found. We’re less than a year into this journey but we feel the need to document it all and the beginning was a whirlwind. One day, I hope to look back and reflect on how far we’ve come but the truth is, I really don’t know. These experiences are our ‘here and now’ and we can only continue to take things day-by-day and stay as optimistic and hopeful as we can in the process.
One of the primary reasons we started this blog in the first place was to provide hope to a family out there who just received a lissencephaly diagnosis for their child. The day that we learned about the severity of my daughter’s condition was the most gut wrenching day of my life, and if we can help somebody else navigate their way through such a day, and subsequent days, then we want to make that happen. When we got this news at the end of last December, I couldn’t eat for days. I felt like there were two twenty pound weights strapped to my shoulders when I tried to roll out of bed in the morning. I don’t think that any words I could use would describe the feeling I had back then, but it was basically like living in a movie – a really, really long and depressing movie. I’m lucky that my boss / employer were very understanding of the situation and gave me some time off, as I could barely bring myself to get out of the house, let alone focus at work. Steph and I felt like we were on an island. The two doctors in my family, AND our pediatrician had never even heard of this syndrome before, which tells you how rare this diagnosis truly is. The internet provided nothing but more painful news. Everybody was as “there” for us as they could have possibly been, but there’s nothing anybody can do or say to make you feel any better. I obviously very much appreciated all of the support we received from family and friends, but my point is that you cannot possibly understand what Steph and I went through, unless you’ve been through something similar yourself.
We had so many dreams. Steph always talked about singing and dancing around the house with her little girl. I envisioned dropping her off at college one day (I, of course, assumed she would go to Pitt) and lecturing her about what pigs men are until they’re about 25 years old. We talked about all kinds of family vacations and activities that we wanted to partake in, and pictured a world where Paige and Will would always be playing, running, and throwing blocks at each other. And all it took was one hour at a doctor’s appointment to feel like lissencephaly had robbed us of all of this.
If you take nothing else away from this post, or this blog in general, just hold on to this one thing: having a child with a lissencephaly diagnosis doesn’t mean that your dreams will be crushed or eliminated. You may have to “tweak” or “adjust” your dreams a bit, but this absolutely will not make them any worse. It’s going to take time – probably more time than anybody would like – but, I can say from our experience (and that of many others we’ve met on this journey) that we’ve gotten to a point where we accept this and the things that happen as a result of lissencephaly, and it’s just becoming a part of our normal daily routine. And we realize that all of the things we were worried about “losing” aren’t really lost after all. Let me put it this way – just because we might have to take our kid to Sesame Street Live in a wheelchair will not take anything away from that wonderful memory with our children. We feel there is light at the end of the tunnel, even when we feel like we’re at our worst in coping with this situation.
I’m not trying to sit here and act like I’m the world-renowned expert on dealing with a liss child. We only got this news 8 months ago. But I feel like enough time has passed that my perspective on this situation is relevant. And I want to state, for the record, that my family and I are in as good of a place as we can possibly be with this. I’m also not trying to fool anyone here – there are going to be days that suck. Our daughter has responded to this condition as well as she possibly could have to this point, but we still have days that suck. But let me assure you of one thing – you will have many more good days than bad. Your child is not defined by lissencephaly or his/her “shortcomings,” and there will be plenty of opportunities to make wonderful memories with your son or daughter. As I mentioned in an earlier post, if you spend all of your time worrying about negative things that lissencephaly can lead to, then you’ll miss out on a world of opportunities to make lasting memories with your family.
Having a Liss child will help you to appreciate the “little things” more and really put life in perspective for you. At least, it has for us. When I hear about “problems” that other parents are experiencing with their children, I just have to chuckle, because they don’t know what real problems are. Please understand, however, that I am not resentful towards them – I understand that, in their world, these things that are downright petty to me seem like a big deal to them. That’s the world they live in, and that’s perfectly fine. To be honest, having gone through what we have, I am happy for these families that have perfectly healthy children to worry about, and that’s the truth. But when you’re told your child is likely to experience massive seizures that will eventually lead to her death, color coordinating outfits for a family photo shoot suddenly becomes irrelevant nonsense. Again, there is no resentment here – I just have a different perspective on things than most parents would, and would like to think it’s made me a better person/father/husband.
Even though our child may not be able to do a lot of the things we envisioned when Paige was born, we find a way to replace these things we’ve dreamed of with equally good moments and memories. For instance: our son Will loves to play basketball in the hall with me. We always pull Paige over in her little tumbleform chair so she can play along with us. Will always makes sure to “pass” her the ball a few times, and she enjoys watching us take turns running up and down the hall shooting airballs. So, while she may not be able to physically shoot the basketball, she is a part of it. She’s there, she’s present, she’s included, and it makes her happy. And as a parent, there is nothing more you can wish for from your child than happiness, and I already have wonderful memories of our family basketball nights.
When you are constantly reminded of what your child cannot do, it makes you that much prouder when they achieve something that every doctor in the world told you she wouldn’t be able to do. At 14 months, most parents are trying to child proof their house and keep their kid from destroying very expensive electronic equipment (as was our experience with Will). For Paige, the fact that she is gripping on to and shaking a rattle is a monumental achievement for her, and I couldn’t possibly be any prouder. I am as proud of Paige for being able to use a rattle and eat solid foods as a “normal” parent would be of their child achieving a 4.4 GPA and getting into Harvard. The point of this post, and this blog in general, is that there is hope. Appreciate your child for who he or she is, and their so-called “shortcomings” will not even be relevant. And their achievements, against all odds, will make you prouder as a parent than you ever dreamed you could be.
My daughter is wonderful, she’s an angel, she’s a warrior. And most importantly, she’s my daughter.