Preparing Myself

I found the following post on my hard-drive. Elijah was only nine months old when I wrote it. I didn't post it at the time because I must have thought it was too negative. Obviously, some things have changed since then (cerebral palsy diagnosis- yep, we've got one). But, when I read this tonight, the last paragraph filled my eyes with tears. Almost two years have past since I wrote this and it's still relevant to me today...

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I've gone through a lot of emotions during the last nine months. I can thankfully say that most of those emotions have been positive. That doesn’t mean that there aren’t bad days. It doesn’t mean that there isn’t a certain grief process that occurs when you know that things didn’t go as they should have gone.

I know denial is a big part of the grief process. So is anger. I have experienced my share of both. I think those are legitimate emotions. The past few months have caused me to come to terms with what happened on a rainy night nine months ago. It’s definitely a process and I’m sure it’s a process that will continue for years to come.

I’ve been trying to prepare myself for a cerebral palsy diagnosis. The fact that Elijah doesn’t have a diagnosis yet is a really good thing and I can hope that he never will. To me, no diagnosis means that he doesn’t have severe symptoms and therefore is doing really well. That said...I know I need not live in a fantasy world where things will only happen as I would like them to. Don’t get me wrong, I think those of you who read these journals about Elijah’s life are well aware how positive I am. That’s just the way I am and I really like that about myself. There is another side too. Sometimes I’m afraid my positive attitude clouds over the seriousness of what happened to Elijah and what it means for his future.

Wait, what’s with all this negativity?! What happened to the glass is half full Lisa? Don’t worry, I’m still here! I think what I’m trying to say is that I’ve worked through some of the denial that has plagued me. I’ve accepted Elijah’s fate and I am coming to terms with the fact that Elijah indeed has “special needs” as much as I hate to write that, as much as it hurts, as much as I wish it weren’t true. My idealist self can’t change what happened and I can’t go back in time. So, I’m preparing myself. I’m preparing for a future that doesn’t look like the one I had imagined. I’m preparing for doctor’s appointments and unfounded predictions about my son’s future. I’m preparing for titles to be attributed to my son that I don’t want to hear. I’m preparing for advice from strangers and insensitive comments. I’m preparing for a parenting life that’s a little different than most.

But most of all, I’m preparing to be happy. I’m preparing to smile every day. I’m preparing to live each day to the fullest, to love my family, my life. I’m preparing to defend my son. I’m preparing to be positive, to not sell out my little dude, to give him every opportunity to have a full recovery. I’m preparing to never give up the fight for his complete well-being. I’m preparing to teach my son that he can do anything if he works hard enough and if he believes enough. I’m preparing to give it all up to God, as hard as that is at times. I’m preparing to just be.

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Ordinary Days

Last night was a bit rough. Elijah was up every 30 minutes, sneezing and coughing. Eventually, at about 3 am I decided to bring him into bed with us. Normally, being in mom and dad's bed is too thrilling for Elijah. He'll look at the alarm clock, his monitor, or anything that emits light and laugh. Laughing isn't really conducive to sleeping. We learned long ago that sleeping with us just didn't work and we stopped bringing him in our room. A blessing, perhaps, to have our bed to ourselves. But last night was different. Elijah snuggled in laying on top of me (just like he used to when he was a baby), wiped his slime all over me, and went to sleep. He slept until the morning and we did too.

Whenever Elijah gets all snugly, I get nostalgic. I remember in these moments that this will all be over soon. Elijah will only be this little once. Someday soon he'll be too big to lay on top of me in our bed. He'll be too big for me to cradle in my arms. He'll be too big to pick up and rock. He's already getting too big.

Perhaps this is a lesson that has come slower to me than most parents because Elijah achieves milestones later than his neuro-typical peers. Sometimes it seems like we'll be stuck in a developmental stage forever. And then everything changes and I realize that soon he'll be a full-fledged boy, and teenager, and then adult. It'll be here sooner than I realize. I'd better soak it up, take it all in, and enjoy every single moment. Milestones or not, Elijah will get older. Things will change.

Elijah's babyness is pretty much gone. He's a toddler, a little boy - there really isn't much baby left in him. And I wish I'd have enjoyed the baby-Elijah more instead of worrying so much (something I hear a lot of other special needs parents say too). But what I can do is to enjoy him NOW - exactly as he is. I can enjoy each and every ordinary day we have. Because I'm sure my parents look at me, their youngest, and think "Where did the time go?" (Thanks for everything mom and dad!).

Ellen shared the following video on her blog and I wanted to share it here too. It's author Katrina Kenison reading from her book The Gift of an Ordinary Day (now I want to read it!). No, it's not about special needs and some of the things the author says won't be relatable to all parents. But I think the lesson is the same...to enjoy every single moment. Milestones or inchstones, childhood is gone before we know it. We'd better enjoy every moment.

If you're a parent you'd better grab your tissues, because I can pretty much guarantee that your eyes will leak.




I'm going to enjoy this ordinary therapy-free day at home with our snotty-nose boy. I hope you have an ordinary day too.

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