The Short Story

Here's the thing, I miss having this blog to look back on as a resource, as a memory-maker, and as a connection to other people. I don't know why I find it so hard to keep up these days especially because I want to be writing here. I've read on a few other blogs people mention how it's hard to start up a blog again after a hiatus because you don't know where to begin. Do you start where you left off, or where you are? And I can't agree more! It's a first world problem, surely, but a problem no doubt.

I don't think I could possibly catch up at this point without feeling continually behind, so I'm just going to go from here. Let me tell you a few key things. This will be the short of it. I'll put the "big ones" on this list. Hopefully, I will be able to come back to elaborate. That's the plan. But if I don't start somewhere, I won't start somewhere.

1. Georgia, on our request, is being moved out of general education. She is currently repeating her gen. ed. pre-k program and next week she will be moving to a self-contained kindergarten. This came at long last after some serious a-ha moments, but was perhaps one of the most difficult and adult decisions I have ever had to make.

2. Two weeks ago Georgia was diagnosed with PDD-Nos. She is on the autism spectrum. This is something we have been considering for three years. By the time we walked into the doors of the Kennedy Krieger Center for Autism and Related Disorders I was hoping they would say it was ASD. I think. It's a long and convoluted story (which I hope to tell), but when we got the formal diagnosis I felt relieved and validated. Since that day two weeks ago, I have felt a lot of things, but mostly, things are pretty much same ol' same ol' around here. (Her new diagnosis is not what made us to decide to move schools.)

3. A week ago Sunday Rainer had what appears to have been a seizure. He was sitting at the computer desk and just fell limp sideways hitting the floor with a thud. I ran to him and found him with his eyes rolling up into his head. I screamed, called for Alex, and he called 9-1-1. By the time they got here he had come to--he was out for 30-40 seconds. He was confused when he came to and I was just...shocked out of my mind. There was nothing out of the ordinary that day. And, to put it bluntly, he's always been our "healthy one." (Is that crass?) Since then he's been fine. Yesterday we went to the neurologist at the urging of our pediatrician, though, and because, as it turns out, there is a fairly extensive history of epilepsy in Alex's family, more testing is required. We will do bloodwork, an EKG, and next week Rainer has to have an EEG. I am not so sure how I am going to manage keeping him up for all by the 5 hours of sleep he is allowed the night before. I don't look forward to it, and his appointment isn't until 10am.

4. To say I am overwhelmed would be...well...today it would be an understatement. Mostly I have been chugging along okay--what else is there to do??--but today has been rough. I took Georgia to her new school so that she wouldn't be going in cold next Tuesday, and let's just say there have been easier transitions. I am crazy worried. This is a HUGE change. I've been waking up at 4am many days just thinking and fretting. I have SO MUCH TO DO. And I feel so many emotions. I am trying to remain positive for everyone's sake, but it's hard. When Georgia has a tough time, we all feel the repursussions. 

5. But. What the heck? The only way through it is do it.

6. So there. Now I've started. Again.

Comments

[Kristin]

I know I already posted a bit on fb, but I send cyber hugs.
Luckily Piper's seizure at 2 yrs old was a one time deal (she's 7 now) due to a fever and teething. So scary at the time, and then we carried around a $200 syringe of some medicine for 2 yrs afterward, just in case there was another one that didn't stop on its own. Hope Rainer's is a one timer thing too!
And it is kind of nice to get a diagnosis when you 'know' your kiddo is progressing a little differently even if you can't pinpoint it. I cried for about a day when when we first heard the possibility that Max had ASD, but now it just makes sense. Luckily he doesn't usually have a rough time with transitions. He has his own quirks, some adorable, some not so much ;) And now with the report stating he does have autism, at least we know, even if his diagnosis is still a bit confusing! Looking forward to hearing more about Georgia's report. Hang in there!!

[Kat]

hugshugshugs!! glad you're back.. I'm sure we'll get filled in on backstory as it comes up, although I'd love some holiday pictures of the kids to get my cuteness-fill.

[Alison Piepmeier]

You need to connect with the Facebook group of bloggers who write about Down syndrome. Then you get a million comments--it's cool.

Also, I'm a person who has seizures. Is it weird for me to offer here that they aren't that bad to experience? For me, anyway, they aren't bad at all. The recovery is exhausting, and I don't like that I have them, but they aren't traumatic for ME--just potentially for the people around me.

[RK]

Always so happy to see u. I look forward to hearing more about both kiddos and the new facets of life. I want to blog badly but unless I give up sleep, it just won't fit in. And it makes me sad. I love looking at all I documented back in the day... Know that there is at least one more person on the way overwhelmed train with you. Probably lots, I would guess.