Dad Post

You’ll Never Walk Alone

In a eulogy I recently delivered at my Grandfather’s funeral, I encouraged everyone in the audience to take time to reflect on, and be thankful for, all of the good things we have in our lives. Since I have previously been told (in a nice way, of course) that my writings on this blog have been a little on the “downer” side of things, I decided it was time to take my own advice! While my prior posts were totally honest and reflective of how I felt at the time (and still feel, to a degree), there are so many positives that our daughter’s health situation has brought to our family, both directly and indirectly. I wanted to take the time to highlight one particular way that Paige’s health has brought my family even closer together than we already were, and how our wonderful daughter has shown us what truly matters in life.

As Steph and I have both discussed extensively, we were completely blindsided upon receiving Paige’s diagnosis in December 2013. One of the first people we were referred to as a result of her condition was a vision therapist. When we initially met with this therapist about a week or so after her diagnosis, I was about as low as low could be. I had spent the whole week prior fighting just to drag myself out of bed in the morning. I had barely eaten anything, couldn’t sleep, and felt like I was living life in a daze. I didn’t understand how this absolutely perfect, beautiful child we had could have possibly received such a dire, life threatening diagnosis.

And then this therapist showed up at our house, and provided us hope when we had absolutely none. He was very empathetic and took the time to understand our situation and our feelings associated with it. But he also made it very clear that our daughter wasn’t going to be defined by a medical diagnosis, and that he would do everything in his power to get Paige as far along as her little body and mind would let her. He got me to look forward and think about all of the things I could do to help my daughter, as opposed to looking backwards and feeling sorry for myself. I will be forever grateful to this therapist and all of the assistance he’s provided Paige with, in addition to being there for my family and I during a very difficult time in our lives.

Anyway, this therapist recommended a few activities to help stimulate Paige’s vision, as her brain does not properly process the sights her eyes take in. One of the things he recommended was watching certain kinds of sports on television in HD, as the bright colors on things like hockey and soccer can be particularly attractive to any young child with a vision issue. If you knew me at all during the first 30 years of my life, you’d know that I thought the hockey thing was great, and the soccer thing, well not so much. But this was about Paige, and not me in the least, and I was willing to try anything within the realm of possible to help my daughter.

One of the first sporting events I put on the TV for her happened to be a Liverpool FC soccer game. If you don’t know anything about soccer (and I didn’t until about 6 months ago) Liverpool is one of the most popular and successful soccer clubs in England, all of Europe, and really, the entire world. And for whatever reason, Paige was immediately glued to the TV and fixated on it for the entire game. We’ll never know for sure, but I assume she was attracted to the bright red home jerseys Liverpool wears contrasting against the green soccer field they play on.

Interestingly enough, the “anthem” for Liverpool FC is a song called “You’ll Never Walk Alone,” which was originally featured in the 1945 Rodgers and Hammerstein musical “Carousel.” The song has been covered by many notable artists and bands, and part of it is even featured in a Pink Floyd recording titled “Fearless.” It officially became the anthem for Liverpool FC in the early 1960’s upon a commercially successful covered release of the song, and the phrase “You’ll Never Walk Alone” is even featured within Liverpool’s logo. One of the greatest spectacles you will ever see in all of sports is 45,000 Liverpool fans singing this song, completely in unison, during warm-ups for every home game. The words go like this:

When you walk

Through a storm

Hold your head

Up high

And don’t be afraid of the dark

At the end of the storm

Is a golden sky

And the sweet silver song of the lark

Walk on through the wind

Walk on through the rain

Though your dreams be tossed and blown

Walk on, walk on

With hope in your heart

And you’ll never walk alone

You’ll never, walk alone

This song, and the way it unites the Liverpool followers, immediately struck a chord with me. I thought about the words and how they could be applied to my own life. It made me realize that while things didn’t necessarily work out the way Steph and I had envisioned them, that our family has so much love, so much hope, and we weren’t going to let this curveball we were thrown define us. We’ve realized that Paige’s condition may bring us some “downs” in life, but that Paige herself is full of absolutely nothing but ups – joy, love, happiness – the only things that really matter in life.

So fast forward a year, and one of my favorite activities to do with Paige is watch Liverpool soccer games on Saturday and Sunday mornings. Paige may never be able to speak any words, but I can feel the bond between us strengthening every time we watch these games together, and for those 2 hours or so, nothing else matters. Lissencephaly, seizures, and all of the other bad stuff associated with her condition cease to exist, and we just have quality father/daughter time in our own unique way. I can see the love for me that she has in her eyes, and I’m confident she knows how much she is loved by Stephanie, Will, myself, and the rest of our family.

You’ll never walk alone, Paige. You’ll never walk alone.

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Dad, again!

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.

-Steph

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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.