Joubert Syndrome – Finding Silver Linings

After my last blog – this being my own form of achieving catharsis – it was brought to my attention that it made some people worry about me a little. It makes sense, as my mom tells me, it would appear that I am going the though the 5 stages of grieving:

1. Denial: For me it was not denying that he had Joubert, but denying that it could be as bad as it may be; hoping that at any given moment a switch would flip and he would just catch up.
2. Anger/Sadness: I have been here a lot
3. Bargaining: All the “If Onlys”… We didn’t have too many of these. Given the knowledge we had at the time there was no way we could have prepared for or prevented this. 
4. Depression: Oh yea – no stranger to this lately…
5. And finally Acceptance: I would say I am dipping my toe into acceptance – but I’m not 100% sure I am there yet. 

However… !

In an attempt to move further into acceptance I spent some time focusing on some of the uniquely good parts that come as a result of Joubert. Here are few things that are tiny sliver linings to Joubert…

• Cuddle time: Ethan does not have the capability as of yet to get up, crawl, run around – he is quite

  

  My little cuddle bunny
  at 4 months old!

  content to sit on my lap and play with my hair, my necklaces, sing songs, etc. He will lie next to me playing Peek-a-Boo. We can curl up and watch Baby Einstein or Disney movies together. If he could, he would sit happily in our laps for hours. It’s his favorite place to be. We are lucky that our baby cuddle time with Ethan will last quite a bit longer than normal. 
• I can get things done: Due to Ethan’s condition his world is very (very) small right now. It exists only in those things that immediately surround him. Because of this, I can sit him safely on a blanket surrounded by toys within his reach and then I can complete some tasks. It’s not just that he can’t move around, but he is truly content to sit and play with his toys for an extremely long amount of time. (I’ve heard this to be quite common in kids with Ocular Motor Apraxia and Joubert).  And I don’t have to worry about him because he isn’t able to go anywhere just yet. If I hustle – I can get half a day’s chores done while he’s still stacking his little blocks.
• Baby Proofing: I have done no baby proofing to date. No need…
• Clean House: Because the baby plays in such small spaces – the only mess in the house is mine and Terry’s.  And let me tell you - we rise to the occasion… it looks like 5 small children live in this house, not one who can’t even make a mess yet!
• When he does walk he’ll have common sense: It will take a year or two for Ethan to walk 100% on his own and maybe even longer before he can run… so the upside to that is by the time he does finally cruise around on his own he will have the common sense of an older toddler. He will still be clumsy I’m sure… but at least he’ll know more about staying out of trouble than a 10 month old.

Baby's first pumpkin patch -
6 months old!

There you have it. It’s not the world’s longest list – but those first two silver linings are enough in and of themselves! Of course I want him to walk, crawl, run, scoot, shimmy and shake! But I know when he does I will miss the time he was content to just in my lap sing with me, and I know I will be so grateful we had that time for as long as we did.