Sunday, November 06, 2011

In the beginning...

Malachi (left) and Jaden at about two months adjusted age. 


In the beginning, Malachi did everything better than his brother. He breathed better. He digested food better. He nursed better. He did tummy time better.

In fact, he was supposed to come home from the hospital before Jaden. The best birthday present ever was when the doctors decided to release him (unknowingly) on my birthday.

(The best surprise birthday present ever was when we showed up at the NICU that morning and they'd decided to release Jaden, too. We were like: "Really? Both? At the same time? Are you sure? Can't we just have one for a day or two to get used to it? Really, you keep him. It'll be fine. We'll be back, we promise.")

I, of course, noticed when, at four months of age, Jaden finally surpassed his brother in abilities. Laying down to sleep, Jaden wiggled his thumb into his mouth to suck it. This is something Malachi still cannot do and it continues to bother him immensely. (I know this because my mommy ESP tells me. Oh yeah, and also because he screams bloody murder until we can coax a pacifier into his mouth and convince him not to push it away with heart-breakingly unsuccessful attempts to put his thumb in his mouth, all while a suddenly deaf thumb-sucking Jaden peacefully nods off. I'm very perceptive that way.)

Today was another jump in Jaden's abilities that drove me to tears. Jaden has taken several independent steps in the last week and I thought, despite earlier worries, that I successfully passed this milestone without being sad about it. First steps, over and done with, and all the emotion I had was surprised, joyful laughter. First time a stranger asked me if "the other one" was walking yet and I was able to simply say "no" with a smile.

But today was different. Today, right before nap time, Jaden decided he was done taking a few toddling steps towards something safe. Today, he was going the distance.

He walked back and forth, with the determined, proud look of a tightrope walker on his adorable little face. Every once in a while he would stumble and then get up — standing straight up, which was also a first — and paced back and forth at least a dozen times before he finally collapsed in exhaustion.

Jaden was so happy and I was so proud of him; you could tell he really got it that he was doing something exciting. He just kept going and going while I sat there cheering, trying hard to keep my attention on him and not the other little boy in my arms who might not ever be able to do that.

I try to tell myself that Malachi's experience is just as valid. Just about everybody goes through the same developmental steps at the same time; us "normals" don't even really have a choice in the matter. Same. Same. Same. But Malachi is different. He gets to experience a whole different way of being human. He isn't locked into crawling before he can walk. He isn't locked into talking before he can really listen. He gets to choose a different adventure; combine parts of life in ways that we could never do and that we couldn't even imagine. He has a different path and different isn't bad. In some ways, it's better.

But I still hate it. I hate that his gains never seem to be permanent or indicative of future capabilities. I hate that he used to eat wonderfully and now it's a major problem. I hate that he used to be able to prop comfortably in tummy time (see picture) but now he can't.

I hate that no matter how often I hear from experts that cerebral palsy isn't a degenerative condition it sure doesn't feel that way. Not to me. Not when I have a twin who is racing ahead while his brother still seems stuck on the first of The Important Milestones.

I hate that while today Malachi can see and grab for a single strand of hair, his eye doctor says his cornea is too transparent. Which, as all the doctors have seemed to say since the brain scan, either means something really bad or it's normal. No way to know until we know.

There's never any good news, just absence of bad news. Which is something. At least there's the absence. Thank God for the absence of bad news.

Until there is some.

15 comments:

  1. This must be really hard having twins one with a phiscal disablity and one who is advege toddler. But I saw twins , one with disablities and one without, even though they have different strenghs both boys had a special bond , no it has nothing to do with special needs, they wresseled and play together. So even though the twins are different they still will be twins, brothers, playmates and you will still be a familys.

    M will have acomplishments , yes they may be different then his brothers but it still will be a big deal. Hang in there it will work out

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  2. Hey girl. I so get this. I'm not sure that I was ever able to truly celebrate any of Daniel's major milestones. And that still makes me so sad.

    I get what they're saying when they say that CP isn't degenerative...but it sure feels like it doesn't it?

    Last year, Ben was able to walk for up to an hour in his walker. Now we're lucky if he can do 10 minutes. His brain injury doesn't get worse, but as he grows, his leg muscles just get tighter and tighter.

    Hugs to you girl. You need them. I think I found the stage you're in to be one of the hardest...it's when those differences between your boys become really noticeable...to you and everyone around you.

    Call or email me anytime if you need to chat. I'm here for you.

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  3. The absence of bad news. I love that idea. That's how I feel a lot of the time. I'm just waiting to get REAL news about my daughter's development. I feel your pain.

    As for milestones, my daughter's twin brother has been walking for almost 5 months, and by the time she started taking her first steps–two weeks ago– I was more relieved than excited. I swore when she took her first steps we would throw a party, especially after being told she may never walk, but when it really happened, my honest thought was "It's about time. Okay, let's start talking."

    Isn't that horrible? And the constant comparisons will continue to go on...Truth be told.

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  4. Hey Shasta. I can totally relate to all of this. Mason actually did a lot of things before Carter. He rolled over first, he pulled himself to stand first, he crawled first, he cruised furniture first. When he was diagnosed with CP at 14 months he had already dones all these things and I had a hard time believing the doctors. But then Carter starting doing all of these things plus more. He quickly surpassed his brother and started walking at age 21 months. As you know Mason will be 3 in Feb and still can not walk. It is hard. It is so damn hard sometimes to watch one twin develop much faster than the other.
    Hang in there girl. You are not alone. Please email me if you need to chat. Sending you a big hug.

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  5. Oh yes, I relate to this too. The CP is hard enough without it also robbing you of celebrating the typical twin's milestones as they should be celebrated. As the other girls have said - you're not alone. That doesn't really make it easier though does it? It still sucks. I do try to tell myself that one day good news will come in a way we never expected and cannot predict, and we will appreciate it all the more. (But based on my tears while I typed that, it's safe to say me believing in good news is a work in progress!)

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  6. The most positive thing I could find about CP today. . and the one thing (today) that made me feel like there is hope for my son and his numerous disabilities. This is a blog written by a doctor that has many, many years experience with CP.
    http://www.karenpapemd.com/
    Hoping you can find some helpful things here too.

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  7. Thank you for once again sharing your personal insights and heart-wrenching prose. Love you, love those boys!

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  8. Anonymous10:54 PM

    I always tear up when I read your posts!

    My mentor saw my son three days ago and he is now crawling using the efficient cross-crawling method at 7 mos old, with some reminders and continuing treatment by me. I just know she can help your son. I'm working on a plan for your son to receive treatment.

    cp is not degenerative, but the brain damage is permanent. Everytime the brain tries to connect and reach the next milestone, it must create a whole new link...which takes time. Before this new link is complete, the next milestone is due...there are so many at this stage!

    At the same time, the brain is wired to conserve and survive, so it will put most of it's energy on survival mode. This means it's not necessary to improve hand skills, stand, or walk.

    Of course the more damage, the longer everything takes. It feels like it's getting worse, but it's simply taking longer to connect.

    The goal of therapy is to direct and encourage the brain and the patient to see hand skills, standing, and walking (or other goals) as crucial survival skills. Otherwise, it may decide such skills are unnecessary.

    There's no guarantee that all skills will be gained, but the more encouragement, the better the gains.

    Obviously, this is a super-simplified explanation, but hopefully it makes sense.

    Hang in there! Sometimes you don't feel the immediate results of your "encouragement", but suddenly things will connect and he'll do something you never expected.

    It may also turn out to be an amazing blessing for Malachi to have his brother as a role model. Many children with typically developing siblings do better because their desire to imitate encourages them to keep trying. This sometimes works better than some of the best therapy out there. Won't that be amazing?

    Bea

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  9. AZ: Thank you. A lot of people tell me "It'll be OK," but coming from you it means so much more.

    Cary: Thank you. In an earlier draft, I mentioned Ben and his vanishing ability to walk with a walker but then I read about your upcoming procedure (so exciting!) and decided I didn't want to jinx it by being negative. And yeah, I think this year is going to be when the public scrutiny starts. Not looking forward to that.

    P: Totally. I don't know if you saw my recent "One twin's parents are nothing like the other's" post but I hate how Malachi's disability has turned me into the parent I never wanted to be: always pushing, never good enough, go, go, go. :P

    Jenny: It's so frustrating isn't it? The unpredictability is maddening.

    Tracey: Oh, you're so wrong. It's made all the difference in the world to know that you all are going through similar things. If it weren't for this blog and the Internet's ability to connect us all I think I would be doing a lot worse. And yeah, it is hard to believe in good news when you've been through what we've been through. My husband just got an offer for a new higher-paying job and both of us are having to force ourselves to be excited about it. It's hard not to be wary when fate's bitten you in the ass so many times.

    Mere: We love you, too. Thank you.

    Bea: Thanks for your insights. That would be amazing if we could figure out a way for your mentor to help Malachi. Crawling at 7 months is amazing; even my typically developing son didn't crawl by then! I hadn't really thought about the idea that this skills needed to be linked to survival, but that makes sense. The method we use most (ABM) says the baby only does things that are easy, so we just have to show him an easier way to do what he wants to do. Also, I think it is good that he has a twin but it looks like Jaden'll be walking long before Malachi can crawl so he won't learn that bit from him. :P

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  10. Hang in there! Every time I read a post of yours I'm reminded of how great a mom you are.

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  11. Aw, thank you, Ross.

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  12. Anonymous10:53 PM

    Hi,

    I'm researching grants and found this site...http://www.uhccf.org/apply_applicant.html

    They help pay for medical expenses, if you have commercial insurance and have income qualifications.

    If not, I am still trying to find a way to fund your trip and therapy.

    I hope things are well. Wishing you a great day!

    Bea

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  13. Anonymous11:48 PM

    I found some more!

    http://www.zanesfoundation.org/?action=who-can-benefit

    http://www.gracieshope.org/index.html

    http://brightstepsforward.org/

    The first one seems most promising!

    Bea

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  14. Jaden reaching milestones it may take years (if ever) for Malachi to reach will get easier. Especially once all of them are hit. Do I feel badly for Julia when Gabrielle is running up and down the hallway? Yes. But for a split second, if that. Because Julia is laughing, and kicking her legs on the floor pretending she's running too, and Gabrielle runs in and screams at her and then runs away, both of them laughing. To us, it's not normal. To them, that's the way it is.

    And Jaden will still be able to motivate and teach Malachi how to do things. When we are working on things with Julia, like how to push to sit, or how to push to knees, I make Gabrielle demonstrate. Partly because I know how *I* would do it, but it's not always the same as how a toddler would. But mostly, it is fun for Gabrielle, and Julia wants to please Gabrielle way more than she does us.

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  15. Bea! You're amazing, thanks! I'll check these out. I also applied to one that I think was called Danielle's Foundation but I just realized I never heard back from them. I should follow up on that.

    Amy: I'm glad you posted. For some reason I kept thinking about you and wondering what you would say, so thanks. I can't wait to see what the future holds for them and I am certain it will involve the screams and laughter you describe! Already I hold Malachi up and we "chase" Jaden around to everyone's immense enjoyment. :)

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