Friday, March 11, 2011

Why is this so hard?

As you may have noticed...I haven't updated in a long, LONG time. I've got about 5 or 6 drafts saved that I never finished and never published. Why? Quite frankly...its a combo of being superstitious and having immense survivor's guilt. Why have we been so lucky? (knock wood) Why is Julia not only seizure free but making amazing developmental gains? (knock wood knock wood knock wood) So many of our surgery friends are dealing with relapses and even regressions. To talk about Julia in a public setting just feels shameful. My heart breaks for my friends who are still going through the fear, agony, stress, and sadness of watching their child seize. Its as palpable to me as just about anything and I hate it so much.

A lot has happened since I last wrote. We finally had Julia evaluated by our school district...why we didn't do this a long time ago I do not know. Well, I do know...EI was not very helpful, we went the private insurance route for therapy, and so the transition at age 3 that most kids go through never happened. Then we had surgery, then recovery...and before we knew it she was 4 1/2 and it was time to acknowledge that the public school system would give her the most support that her condition ultimately needs. So the evalution took place over the course of September and October and in November we had our first IEP meeting to go over the results. As suspected, she was found to be delayed in all areas with speech being her biggest delay. She was offered a spot in their preschool program and started that right after Thanksgiving. So now she attends her private preschool 5 mornings a week and goes to the public program Monday through Thursday afternoons. She gets 30 minutes of PT, OT and speech a week, which does not seem like a lot but is all they were prepared to offer.

At first we didn't know if she'd be able to handle it. The IEP team was appalled when I told them I wanted her to do both programs saying it was too much for her. But she has thrived. I don't know what has been so magical about the combo but it has been amazing. She is eager to go to school every day and on Fridays when she doesn't get to see Marianne, her teacher at the public school, she is NOT happy about it. She is making friends, playing with them, talking to them...that is huge for her. She used to keep to herself and not really engage with her peers, now she engages with them on a somewhat typical level. She is even starting a little bit of reading...she can sound out letters and sight reads all kinds of words. Language is a work in progress and will be for quite some time, I'm afraid but wow...she is getting better and better all the time. Most importantly, she is happy...she is healthy...overall we are just so incredibly, incredibly lucky.

Even though she turned 5 last month, we've decided to do another year of preschool before kindergarten and she will continue with mornings at the private school and afternoons at the public school. I am really pleased with that decision and hopeful that when kindergarten comes she will be as prepared as possible.

So with all of that said...I'm tempted to hit the "save" button instead of "publish"...but I'm going to publish anyway.


Sophie's Story by Elaine said...

Throw that guilt out the window. I NEED to hear how well Julia is doing. It's refreshing to actually go to someone's blog and hear about all the wonderful things. I am sooo happy for you and Julia and your family. Wow...showing signs of reading!!! That is amazing. It gives me hope. So say it out loud, shout it from the rooftops and PLEASE keep blogging about all the amazing progress. It makes me smile!

blogzilly said... need to understand something. This is a post I needed to read as well. I just need to hear SOMEBODY who is having it go the way we all hoped it would go.

There is no need to feel guilty because nobody is angry at YOU or Julia...we're freakin' thrilled! Are you kidding me?

It's a very difficult thing, I do realize that, and I can understand how you must feel, I do. Bennett isn't having seizures, all my other friends who's kids had surgery are. But...and there is always a but...Bennett still has his own big, BIG issues. They're just different than Sophie's, or Trevor's or Austin's or Emma's or Zoey's or anybody else's.

That doesn't make it better or worse. Only different.

By all means, share the journey. We ALL want to hear good news and we ALL need some.

Anita said...

I have not posted comments in a long while too,but I also want Ken, Elaine, Danielle and anybody else who needs the hope to know that Kanak is doing well too. Although her journey since surgery has not been completely easy she is making strides in language and comprehension every day(two significant areas where she was lagging behind).Please know that I just can't find the appropriate words sometimes, but I do think about the kiddos and hope and wish that things get better soon for all of them.