Today is one of those days where I'm not sure which way is up.
Since we got Lane's diagnosis a month ago, things have gone surprisingly well and I have felt really good. I have truly felt the love and the prayers from everyone and can't thank you all enough for your kind words.
While paying some bills and filling out therapy paperwork, I wrote down the date.
10.8.13
We are 10 days away from Lane's first birthday. And I had imagined him at such a different place by his first birthday.
I had imagined him crawling, and walking, and talking, and doing all of the things that typical one year olds do.
Instead we are only just sitting, and spend our days in therapy, and are constantly working on keeping up and not trying to get anymore behind.
And trust me, I don't take for granted any of the milestones that Lane has hit, because I know it could be so much worse.
But man, hitting that first birthday and it being so much different than I had expected is tough.
Like, really tough.
I think I have been okay with him being where he is at because he's not yet one, and so he is still considered a baby. People don't question too much when he's not doing certain things. It's allowed me to kind of hide behind the facade that he is "normal" because he's still a baby.
But once they turn one, it changes.
There are more expectations for them.
They go from babies to toddlers.
They are able to do more, say more, be more.
And that means I have to face reality all the more, because he really does have Joubert Syndrome, and he isn't at where a one year old should be.
It's hard. It sucks. And I just want to stop time.
I want to stop time and allow him to catch up. To be able to play with the kids his age. Do the things kids his age do. Instead of getting more and more behind and having to work so hard to catch up.
But I'm thankful we get to even celebrate a first birthday. And although it's not exactly what I have imagined, we have this amazing son we get to call our own!
And I know it will be a beautiful celebration of all that has happened over the last year and all the hope for what is to come.
But sometimes reality kicks your ass and today is one of those days!
2 comments:
I would say, go scream in the pillow, do whatever helps. You do not have to be brave, happy and whatever else you want to call it. You have a right to have a bad day. Cry if you need to, it will clear your hear, mind and soul. Then shake it off, like the best Mama you are and keep on keeping.
Happy Birthday to your cute baby boy.
Alexandra
It's as if I posted this myself. Thanks for posting this Anna. I remember these feeling at 1.. My son has JS as well and he just turned 2. I seriously want to lie about his age sometimes when people ask how old he is just to avoid the questions of why is your 2 year old not walk (he's been butt scooting since 18 months) and why is he not talking at all (3 words only- 20 signs). It's not that I want to hide it it's that I don't want to explain!!! My time is valuable haha!
Thanks again for posting. I love reading about your journey.. You guys are amazing parents!
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