So, I’m not quite sure what my plan is for this blog…how often I’ll blog, what I’ll blog about, how I’ll feel about this blog, how to edit a blog, and half the time how to spell “blog”….but I feel like I want to share the story of our little man and our continued journey.
To start off, please note: I’m not normal, I hate the word normal. My family isn’t normal, my husband certainly isn’t normal, and we somehow created the most perfect not normal Brat imaginable. (You’ll soon find out why the word Brat is valid, I promise, I’m not just calling my son a brat for no reason).
The best description I ever heard about Quinlan is that he taught people more about life in his own too short of a life then anyone you’ve ever met. And he did it all without ever having said a word. (If you Google him ‘Quinlan Weekes’ you’ll get some pretty cool info). He was a soul like no other…and pretty damn cute if I do say so myself. I miss him every minute of every day. (Great, here come the tears…this will happen now and then, just ignore, or join in…whichever).
A lot has happened in the last 3 years and 10 months. We got married. We got pregnant. We had a baby. We spent a good amount of time in the hospital with the little man (over 300 days to be exact). We came home and had nurses practically living with us, machines taking over our living room, doctors appointments and hospital visits up the wazoo…..but we also had the most amazing little boy who was OURS. And I wouldn’t change that for anything.
I should say that one thing I know I DO NOT want from this blog is all sadness and tears and whining. We’ve gone through a lot. We have had our share of ups and downs (and sideways and backwards)….but we’ve always had hope (so cheesy I know) but to be honest, it’s gotten me through some pretty horrible times. I have hope that because of Quinlan, no other child will have to endure hundreds of seizures an hour….I have hope that no other parents will have to see their child face what ours has….I have hope that nurses will get the praise they deserve to go through what they go through daily….and most importantly I have hope that another set of brown eyes just like Quinlan’s will be looking up at me again (hopefully sooner then later).
Now, back to the Brat thing….from the moment Quinlan was born, we knew something was going on in his little body. He was born with tense muscle tone. It was a bit tough changing his diaper, he needed lots of stretching (this is where the greatest group of our Early Intervention family comes into play). He didn’t track objects like a newborn would. He had microcephaly (a small head). And eventually we discovered he was having seizures. Fast forward to little over a year later (after respiratory issues, a feeding tube, a tracheostomy, and 10 months in the hospital), Quinlan was diagnosed with a very rare genetic disorder. We discovered he had a mutation on the Brat1 gene (which my husband, Bear, and I are both carriers of….more on that later in the “holy crap I’m really ready to be pregnant again?!” post…which will include IVF with PGD…OMG, WTF!). Mr. Q was the 7th known to be diagnosed, and at the time no other child with his severity of the disorder has made it to their 1st Birthday. Go Q!
A month or so later (November 2015), with much help from the social workers at the hospital and nurses that we didn’t know at the time, but soon became like family, we were able to bring him home.
We endured a few short hospital stays here and there but mostly he was home with us. Everyone loved visiting Quinlan. Sometimes he’d open his eyes for you, sometimes he wouldn’t. If you changed his diaper you were almost guaranteed to get peed on (that was his way of telling you he liked you). But you would always feel something so innocent, non judgmental and pure coming from him. He was amazing!
It’s been 6 months since I’ve been able to get a squeeze on the finger from him, or an excited smile. It’s hard, it’s sad, it’s frustrating and exhausting, it’s surreal, it’s different. Anyone that has lost a child knows….there is a day on the calendar that your life changed forever. We may have started the grieving process, in a way, from the moment we knew there was something going on with Quinlan, but nothing prepares you for never being able to see your child again. It hurts.
I’ve learned you have to put one foot in front of the other and move. It doesn’t matter where but you have to move. People say they don’t know how I do it, and to be honest, I have no fucking clue. Hope, maybe? I’m not sure.
So, here it is. My first attempt at a blog post. Just like everything else in life, let’s see where this takes me. I just hope I spelled “blog” right!