Thursday, March 15, 2012

Lamp Update Pt 2: Power Chairs and Hip Sockets



Did you know you don't actually need hip sockets to walk?  I didn't know that.

But still, when I found out at a recent Orthopedic appointment that Lamp doesn't really have hip sockets it took me a minute to process.  As the Dr. kept talking I finally had to stop her and admit that I couldn't focus on anything she was saying because I didn't know about her hips.  At 19 months old I was learning something new about her anatomy and I needed a few minutes to catch up.  And to cry.  Just for a second.  But apparently it doesn't really change the fact that they (we) still believe our little Lamp will one day walk.

In the meantime....this brings me to the second part of the update that has been in the works for a while, but that I've purposefully been keeping off the blog.  I needed some time to come to terms with it myself.  But here it is.

Lamp is getting her very own power chair.  Soon.  It's already been ordered.  A power chair being an electric wheelchair of course.  She'll be able to operate it all by herself.  This is very, very exciting news.  She will have more mobility, more freedom and will finally be up at the level of her peers--which is huge.  She will also have a 100+ pound machine with which she can exercise complete domination over any 2 year old who threatens to take away her goldfish crackers.  Good things all around.

But you know... this also means I have a kid in a wheelchair.

Denial is kind of a dirty word and usually carries a bad rap.  But for me denial has been a great coping mechanism and blessing.  I have been able to handle this complex Lampy puzzle because I have been putting it together one piece at a time.  Even when we had that very first ultrasound I didn't try to imagine or project too much what everything meant.  I just sort of accepted the few basic facts and left it at that.  When we had a more comprehensive ultrasound telling us in more detail what her limbs would look like, I didn't try to think of the ramifications or even what she would look like, I just allowed myself the facts.  Eventually I did want to know how her precious body might look and I blogged about that experience here.  Then when she was born I just loved her.  I didn't wonder or worry too much about the future because at that time she was just as helpless as any other newborn and I just loved her.

When I was ready to face the reality of her limitations I faced them.  Sometimes I even tried to disbelieve them.  Like the time we met a family who had a son with 1 limb difference and a prosthetic leg.  It hasn't slowed him down at all!  They said.  He was 16 months old, Lamp was 4 months old.  Of course, I naively thought, this isn't going to slow her down!  I had heard that from other parents of kids with limb differences too.  I didn't really think too much about if she would walk or not, but in the back of my mind I thought she would be walking by her first birthday.   Eventually I came around to the reality that not all limb differences are created equal--there is a big difference between 1 limb and all 4 affected (and even how they're affected).  And eventually I came around to the reality that she wouldn't walk by her first birthday.  Or her second.  And maybe not her third.

I know there have been times in my life when I have wished to have a peek just 5 years into the future....just 5 years to see how it all turns out.  Later, when I look back I have realized that I had been shown those 5 years I may have been so overwhelemed and traumatized by what I saw into my 5-year-future that I would have crumpled on the floor, crippled by my own fears as to how I was ever to face such outcomes.  Seeing the big picture all at once can be overwhelming and exhausting.  Could you imagine if you were taught calculus while you were just a tiny first grader still practicing your basic addition and subtraction?  Would you even be able to focus on addition knowing such complicated algorithms lay ahead?  The results would be disastrous.  Line upon line, here a little there a little, isn't just practical.  Sometimes it's humane.

So when the idea of a power chair was finally discussed in an appointment with a local PM&R (physical medicine and rehabilitation) doctor I could accept it.  And then not think about it past that.  When I finally came into therapy for the first time and saw this ginourmous chair, for my teeny tiny baby I was really taken aback.  Such a big chair for such a little baby.  This first chair we looked at weighed over 230 pounds.  And I suppose that's when it really hit me.  Although I've known for a long time that she'd eventually have a wheelchair, especially for distances, it didn't really hit me until I saw one.

   giant, riding-lawn-mower sized chair                                            just right, super-mini, cute chair





















Long story short, the wheelchair is going to be a good thing.  We have now found the right chair for her.  It's the smallest one on the market (above right) and is made so that she'll be able to sit underneath a preschool table.  And I'm excited.  For her.  Not for our walls.  Or our toes.

Oh and did I mention that it will be pink?


One funny thing about this post is how completely opposite the husband and I have been in the way we mentally come to terms with Lamp and her differently-abled body.  While I use denial, B tends to project out the worst case scenario....that way if things turn out differently he's not disappointed.  What about you?  Can you related to either of our coping mechanisms?  Does it depend on the situation?   


17 comments:

  1. Yay for technology, and for denial selectively applied! I totally understand both. We had an epic pregnancy full of uncertainty (and worse case scenario predictions)that resulted in a little boy who has an OT and a PT because his left side is weaker than his right as a result of a perinatal brain injury. Coping with this was a really interesting experience in learning how much I could process at once. And in learning to trust God and my own spiritual promptings and balance doctor's expertise and mother's intuition. Good luck with the pink, cute and wonderful wheelchair and this next adventure!

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  2. She looks like such a big girl in her chair! Just thinking about such a little girl driving a power chair amazes me. Technology can be such a huge blessing! I'm with B. I always go to the worst case scenario. It's how I cope with most things in life. Then most of the time when things end up not being as bad as what I imagined them to be I'm pleasantly surprised. And for the times when it is just that bad. Well at least I'm prepared mentally for it. Good luck with the power chair. I'm afraid your toes might need it.

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  3. Anonymous4:41 PM

    she is such a doll baby! how awesome for her! reminds me of the power wheels barbie jeep.

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  4. She is going to rock in the pink power chair. So cute. I bet the other little ones will all want one when they see her in it.
    It all has to be so hard. We have expectations that we hope our children will have and then when we know that it will be less it takes awhile to process it all. My son has developmental challenges and it's hard knowing that some things will never be in his reach. But we have to be thankful of the things he can do.

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  5. Linda P.6:54 PM

    Oh my GOODNESS! I am so thrilled for Lampy! And a PINK chair, no less! I know some awesome blog posts will be ahead as we hear of The Adventures of Lampy and Her Toe Squishing Super Motor Chair!

    I think I am somewhere in between your and B's way of handling the uncertainty of our adult special needs son's future. We are planning for it inch by inch, you might say!

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  6. love the update and YAY! for the awesome chair!

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  7. Anonymous1:17 AM

    Yay for Lamp! Oh, the new found freedom. When will hers be ready? You know you have to post a movie of the first ride?
    I am totally with B on this one. I believe in prepare for the worst hop;e for the best. Denial does not work for me. When s**t happens I crumble if I was not able to process it before, at least partially.

    Alexandra

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  8. I don't know, I don't think you're in denial. I think you're being rational - soaking in information as it comes without automatically projecting to the worst case scenario. It seems like an incredible gift to have, especially in this rollercoaster ride you've been on. You're doing awesome.

    And NOOOO, you didn't tell us it was PINK!! For real? How did that not come up before. Girlfriennnnd.

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  9. I really love the line in your post, "Line upon line, here a little there a little, isn't just practical. Sometimes it's humane." That rings so true.

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  10. Like Heather, I was really struck by your comment about the humanity of 'line upon line.' So profound, Miggy.

    You are so courageous and I always learn so much from you.

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  11. This is amazing, truly. I'm happy for her... She is going to feel like such a big girl! I loved your thoughts on line upon line, precept on precept... That is a profound perspective.

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  12. how cute is she in that chair?!

    I don't know which strategy is better, but my inherent default is to jump to worst case scenario.

    your candor in writing about your sweet girl is such a gift.

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  13. I'm so excited for her! (not so much for your walls and feet, but definitely for her!)

    I love how eloquently you express your thought process. I've often felt the same way-- that if I could have seen five or ten years into the future, the view would have been terrifying and paralyzingly. It's only bearable in the here and now, and often I'm unable to see how invaluable and significant the experiences were until I look back fhere's safe distance.

    I go through stages in how I deal with things. Denial, anger, intense proactive-ness, followed by distractions and depression. When I get to depression, J automatically gets mad. :) also, the more stressed he is, the more I feel pressured to be the happy one. Balance, I guess.

    Thanks for sharing your journey! I can't wait to see Lamp riding around all by herself. :)

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  14. Sorry I'm not very good at responding to comments in a timely manner!

    But thanks to everyone for your always supportive comments of my family and I.

    Internet hugs!

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  15. I'm glad to hear Lamp will be cruising along on her own.

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  16. This is very exciting! She looks so cute in the wheel chair.

    I personally try to face things head on and be positive about the uncertain outcome... But I've done both denial & worse case scenario to cope, and they all seem to not change the actual outcome. Kind of funny how that works.

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  17. I hope it out turned out well. Having quality powechairs have really helped the loved ones in my life live the life they deserve. It can give them back so much

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