Wow things have taken quite a turn in my postings as of late - and this has to happen right in the middle of DS Awareness Month, where I will be posting daily. Figures.
I first want to say a big thank you to those of you who have reached out to us either here or elsewhere (downsyn, email). I really appreciate it. It is nice to feel the support.
I have been thinking a lot about Quinn (obviously - wow that is a duh statement). This morning before I came down to the computer to do my usual routine before rushing off to work, I stopped and watched Quinn sleeping for a while. Last night I held her in my arms long after she fell asleep. I just kissed her over and over again. I just love her so much. My perfect girl (and she is perfect) has to go through this crap. It stinks. As I was watching Quinn sleep, I thought about the materials I had read about Infantile Spasms (IS), that the episodes rarely occur during sleep. I thought how great that is for Quinn - she is truly sleeping peacefully. Unfortunately though the episodes tend to be more common in the morning or when they wake up from naps - I never really thought about that, but that probably is when we see more of the stuff happening...
It is like this, sometimes Quinn is very active, present, smiling - 100% there. This happened when I came home from work last night. She was moving around (scooting) and smiling and playing. My heart just filled up with happiness. And then other times she has the head drops (head goes down and arms go out) and she stares off into space. It is hard to explain, but it is like a fog sets over her - even her eyes are not clear. God how I hate the fog.
I feel like I am in a fog now too. Just going through the motions until the next big step.
One of the fall outs of IS is a cognitive disability (or that term in the DSM that needs to be revised mental retardation). I was reading that and my twisted mind wanted to laugh hysterically. Well I already knew that was an issue, but I guess now maybe Quinn won't be the superstar of DS like some others - or maybe she will be because the little fighter has those moments of clarity out of the fog and some kids with IS don't. Oh well, none of that matters right now anyway. I'm in the fog and only the fog matters right now. I have to get out of the fog.
Two years ago this upcoming Tuesday Quinn was born. I did what I had to do when we got the prenatal dx. I stayed strong, went to the tons of appointments, cried my tears, but did what I had to do. This time is no different. I will have to learn how to inject my daughter with ACTH if needed. She will likely fight it. She will hate it. But I have to do it. She can't have these seizures keeping her in the fog. She deserves more. She deserves to be in those clear moments. We will have to likely spend her birthday in the hospital, but we will do this because we love her and no matter what she is our daughter and worth it. Our daughter deserves to be outside of the fog. Luckily Quinn will get her birthday party tomorrow before the "fun" starts. Thankfully we planned it for that day - who knew all this was going to happen?
That is my story. I will post more as more unfolds, but between now and Monday there will be no new developments except in my processing of the situation. Here is another story about DS. Bottom line, it is about parents loving their kids no matter what - doing whatever they have to do to give their kids opportunities.
19 hours ago