Max's smile, along with his cerebral palsy, are both part of his personality.
I've been on an inexplicable organizing frenzy since we got home from vacation. I've gathered bags of clothes for the Salvation Army, put the kids toys' in some semblance of order, plowed through piles of paper. One of the things I unearthed was a therapy schedule I'd written out when Max was two. He had at least two sessions every weekday, plus hippotherapy on Saturday mornings. Thursday was especially jam-packed: speech at 9 a.m., OT at 12:30, a teacher at 3:30, another OT at 4:30 and PT (the therapist did the MEDEK method) at 7:15.
The schedule got me thinking about all that Max has been through in his six years, and all that Dave and I have been through. I've heard other parents of special-needs kids say they wouldn't trade their child for the world. I used to think they were deluded, but now I get it. Max's unique way of expressing himself—with animated sounds and the occasional word—is part of his personality, as is the cute way he hobbles when he walks, the determined way he manipulates his hands to get them to do what he wants, the expressiveness of his eyes, even the drool. Still, I sometimes wonder what Max would have been like if he'd been a typically-developing kid, how our family life would have been different. Do you sometimes think about those things, too?
I do so less and less. It's just not something that I allow myself to do. I mean, why go there? I guess my OCD comes out in my planning and scheming to get Nate better, instead of thinking about what he could've been. I think it's just too painful to go there. But you've inspired me with this post and I think I will write about this tommorrow on Nate's blog. Thanks for the super cute pic of Max, his smile and happiness is so contagious, I'm sure you here that all the time, as I do about Nathan, but it can't hurt to hear it again.
ReplyDeleteStop it, your freaking me out now... :-) No really, I was just thinking about this for my blog, just didn't know how go about it.
ReplyDeleteI often think about things, if I could see better, if I could drive... If I could, would I have met the same people I know today? Would I still do the same things, champion the same causes I do today?
Would I have met Cole, would I have met you and Max? Who knows... I believe we're all put here just the way things are intended to be... Don't question the way you are... Take the way you are at this moment and continue to help, the people you know and the friends you will make because of the NOW, not the 'what if'.
I do. And I try not to. Really hard. And I'm not crying on Monday morning. It's a rule, so I'll just stop there.
ReplyDeleteI wonder ALL THE TIME! It might be since Jonathan is pretty much your typical kid, and you can't pick him out of a crowd as someone that had a traumatic brain injury. He is smart, but there are things that he *should* know that he seems clueless about. Tony and I were discussing this yesterday...is it that he really doesn't get it, or that he doesn't want to get it?! The kid is a whiz at video games...or at least the ones he likes (Lego Starwars, Lego Indiana Jones, and now Lego Batman). But give him a video game that deals with adding numbers or something, and he is clueless. And he is so easily distracted. We call it the bright shiny object effect...Tony has it too, to some degree. I am waiting for the day that they tell me he has ADD. He doesn't have it, but he fits the bill!
ReplyDeleteMy biggest wonder is if he would be the same happy-go-lucky Jonathan. Would I lose my empathetic boy? Would he still have his quirky geekiness?
I wonder what he would be like, but I can't imagine it. I would however like to trade the NICU and all the heartache if I could please?!
Oooooo, good post.
ReplyDeleteI don't think about the "normal" version of her cause I know then it would NOT be her.
I do, however, look at "normal" children and feels sadness & grieve what I have lost or do not have. As I just posted, I have never experienced "normal" from a parenting side. I have as a friend, an aunt, a cousin.
I wonder how it feels to get up & not worry about therapy, not having to dress & feed your child, not have to write out a schedule everyday for her to carry, not have to do things the exact same way to avoid meltdowns, etc.
Then I remember this IS my life & I don't know how it would be any other way. ITA with Rich, I try not to dwell on the what-ifs that often; sometimes they just creep up & bite you in the butt.
I do think about these thing...but with Kennedys set back this past year I think more about what she was capable of doing before, that she isnt now..and think what is in her future. There are times I am sitting on the couch and picture her crawling up and tugging at my legs...now who pictures their 7 year old crawling...That is me...that was my version of normal.
ReplyDeleteI just found your blog. Max is so cute:). I often think about if my daughter were "normal". She's 5 now....and it does get less and less, but I still mourn the things that I cannot do with her...yet. I love her just the way that she is...but I do sometimes "go there". I wish that I wouldn't.
ReplyDeleteEllen,
ReplyDeleteI found your blog, thanks to the UCP website. I hope you don't mind but I added it to my own. Growing up with a disability, I've often wondered how life would be simpler if I didn't have one -less stress for my parents as well as myself, more freedom for me. Thinking about this too often can create a downward spiral.. think of all the opportunities created because of his disability. There are great things ahead I'm sure for Max and for you
Yes, I think of it and a lot. This is all new to us though so we are still coping with the fact that our child is disabled. Although, I already see a personality in Jude that I wouldn't trade. He may not smile anymore due to the meds, but his eyes still smile. I believe I am in your position from years ago, but with seizures. I am just now learning what "MEDEK method" means ;). I think it's normal to feel a loss in who you thought your child was going to be, and a proud acceptance of who your child is. We probably all do that though in some capacity with every child whether disabled or not. Loved your blog today. Good topic.
ReplyDeleteAll the time! I have a 3.5 year old, Logan, with CP and a typical 20 month old, Levi. Just tonight, Levi was so tickled to hear Logan laugh that he got a charge out of it. He was hugging on Logan and so bad wanting interaction from his big brother. Due to CP, there are a great deal of things Logan can't do. Then I looked at my nana, and immediately we both said 'I wonder what it'd be like...' For most part, I try not to think about it too much, but then there are times where I can't get it outta my head. Your definitely not alone on this one.
ReplyDeleteThanks for the heartening comments, everyone, they always lift my spirits. Welcome, Angie! And Debbie, flattered that you're linking to me, I will check out your blog. Sarah, as always, I'm with you--I would give anything to erase those two weeks in the NICU from my memory. In the next couple of weeks, I'm going to blog about Max's birth story, I think it'll be cathartic.
ReplyDeleteI love this picture! That will brighten up any Monday!
ReplyDeleteI do find myself thinking about that with Alice. I feel sad for a brief moment, and then I imagine a bratty 2-year-old walking around saying Mine! Mine! Mine! I don't know if Alice would have the patience she has or the same loving, sweet personality that warms me to the core. And I don't know if I would be as patient or if I would be too busy focusing on insignificant things like making two perfectly symmetrical pigtails. I think I will always wonder, but thankfully it's not a longing, just a curiosity.
(We are totally purging/organizing our house, too! I feel like it will take forever with two little kids around, but it feels good to sort through everything)
Welcome home Ellen ;-).
ReplyDeleteI used to often find myself doing this and just every now and then - usually if I've spent a lot of time around other kids BC's age I do it too. I get sad and weird and angry and then I kick myself every time because I KNOW that's how I will feel, and let's face it - what's the point??? It's not going to change anything.....and what's more the OLDER that BC gets, the more I see his true personality emerging and it's gold. I love it, every last bit of it, so why should I ever try to imagine him any other way?
That's a gorgeous pic of Max.
I hope it's not too cold back home!
I guess I wonder about it, but I'm not sure I long for it. Like a lot of the parents here, I'm not sure that Charlie would have his sunny disposition if he hadn't struggled so much in the beginning.
ReplyDeleteRandom, but true, Charlie looks exactly like every other man on my side of the family. I think about them and their lives, and things aren't perfect. That really help me keep things in perspective.
I read a different post first and didn't know why it seemed you were apologizing for this one. I read this one second.
ReplyDeleteStill, not apology needed. We used to wonder that all the time. Something I'll post about in time after my life calms a little. I used to think about it; it seemed I used to be able to picture it; not anymore.
I mainly just wonder what his voice would sound like and what he would have to say to us. How would he and his brother play, things like that.
ReplyDeleteJust stumbled upon your blog and love it! I have a 5 year old with DS and wonder what it would be/sound like if he could open the front door by himself, walk in and say "hi mom!"
ReplyDeleteThe boy is my heart outside my body but yes I sometimes wonder what he'd look and sound like as a "typical" 5 year old :)
I would love to hear him jabber and be able to tell him to simmer! LOL
Alexandra says:
ReplyDeleteI know one thing, I wouldn't be as kind as I am, if it weren't for "the road less taken" that we're on.
I realize the miracle of a good day, and I am *deep down* grateful that I was chosen to be my guy's mom.
He has shown me what a fighter I am, what an advocate I am, and how I am his biggest fan. I am proud of myself, and I know our lives are different from those that have no issues.
And that is all O.K., because I am finding out just how resourceful and powerful I am, as his mother.
Wow...this post really hit home. I wonder about this every day. My son is still young 9 months old and I wonder what the future holds. What he would have been like? Would he be doing this or doing that? I know I have been blessed to have him in my life but sometimes you just have to have a pitty party dust yourself off and move on. Be grateful for what they are doing because wondering won't change the reality.
ReplyDeleteJust wanted to say that I love your blog and Max sounds like a wonderful kid, and I can certainly tell you've been an editor/writer because your writing is brilliant and you know your stuff! Huh! :) Cool blog!
ReplyDelete