Wednesday, November 21, 2012

A Great and Dreadful Day





I'm not sure what I was afraid of, but I know one thing for sure--I didn't want to bring Lamp's power chair home.  Her wonderful PT's have been telling me she's ready for a long time.  And I saw it with my own eyes as I started joining her on walks during therapy.  Or is it drives?  We walk, she drives.  Anyway, she had long since graduated from simple forward/backward/right/left buttons and was now using the joystick like a pro.  She no longer bumped into walls or veered toward falling off the curb.  She could easily correct herself and get to her destination without any problems.  Her therapist said, She so smart, I knew she would figure this out and drive really well.  But honestly, she has completely exceeded my expectations.  She is doing really, really well.  She's ready. 

But she never pushed it.  Because she knew that while Lamp was ready, I wasn't.  The truth is there were still some valid issues that needed figuring out.  Like a remote stop button--you know in case she's about to plow a kid over and we're across the room or about to go off the side of a curb.  I need a way to stop her chair if I'm not right next to her.  Then there was figuring out a lift for the car.  I can't exactly pick it up and throw it in the back of the van myself.  And even just knowing how to work the chair and all the controls myself.  These were legitimate issues that needed addressing.... I just kept conveniently putting them off.





*****

I remember the day Lamp was born, we were in the hospital room in Cincinnati soaking it all in...soaking her all in.  Holding my sweet baby and letting the joy wash over me.  I was in heaven.  That very first day a geneticist came into see us.  We had never met her before, but obviously she knew something about our Lamp.  She was very kind and took one look at her and reassured what we already knew--that Lamp didn't have the differential diagnosis they had given us weeks before.  I knew that the day they gave it to us.  Then she looked at Lamps little hand and said, Oh I can see this little hand operating a power chair one day.  I think that little hand will come in very useful for that.   Like I said, she was very kind.  I smiled at the suggestion, but quickly put that thought aside.  Since her very first day on earth, the idea of a power-chair was planted in my brain.  I just didn't want to hear it.

*****

On some level yes, it was totally the whole I-have-a-kid-in-a-wheelchair thing I wasn't wanting to face.  A small part of that has to do with me and embracing the reality of our and her life.  But the other part--a large part--has to do with other people and how they look at, notice, process and then treat our daughter.  Pushing her in a stroller provides a somewhat inconspicuous cocoon of 'normalcy.'  As I learned on our walk down the block today her differences are suddenly front and center now that she's in a power chair.  And at least one look from a stranger was met with subtle hostility, which shakes me to my core.  As if she wasn't already vulnerable enough.

The other part of me wasn't ready for the changes a power chair would bring into our lives.  It's a large, heavy machine connected with wires, gears and high tech equipment.  And it's operated by a 2 year old.  That thought always makes me laugh.        
    




But on Monday the excuses ran out.  Although I gave it a fair shot with I don't really know how to run the whole thing.  Turns out it's not that complicated.   So after therapy we loaded it up and brought it home.  Seeing how it took me weeks to decide on a color, our therapist knew this was a big step for me.  She's great and I appreciate her easy way of helping me through this.

But now that it's home, I really don't know what I was afraid of.  She loves it.  The freedom.  The blessed, blessed freedom to go from one room to another and back again in less than 3 minutes... it's life changing.  This beautiful baby has always been so patient with herself and with us it's nice to see that patience rewarded.  She drove around Monday evening before bed (we had to wait for dad to get home to unload the chair) and come Tuesday morning she woke up and her first request was to drive her chair.  And it was my absolute pleasure to say yes.  Yes, baby, yes you can drive your chair.  And it's not just the swift speed of travel, it's also being up on the level of her peers.  Sitting next to sister by the computer and actually watching what she's doing from the same height.  Then having her sister bring the mouse over to her so she can play the game too.  (That sister is something else).  Helping pick out her own clothes for the day while looking down in her dresser drawer.  It is new and exciting and so, so good for her.  Yes, a power chair does come with a new set of challenges, but it's hard not to be excited when you see the positive impact it's made in the first 2 days.  It's a new normal.  I don't know how it's always going to look, but so far so good.






Lesson of the day:  Change can be good.  Maybe, change can even be great.

28 comments:

  1. thank you for this entry. thank you this sweet glimpse into Lamp's life and for your truth telling, both. I appreciate (so much!) your willingness to write about the challenges. I am really excited for miss Lamp and her new mobility. also, I love that in the picture of your girls using the computer together, there's a pile of pinecones on the desk next to them. you're good at this.

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    1. April--glad it spoke to you. I always appreciate your feedback as some who's writing I admire and as a fellow mom on this journey. Thanks.

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  2. Anonymous9:23 AM

    Every good gift and perfect gift is from above.....your girls are the most perfect thing I have seen, Happy Thanksgiving to your family.
    marsha.kern@yahoo.com

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    1. Thank you! Yes, they are both gifts from above. I completely agree.
      Happy Thanksgiving to you too!

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  3. Loved this post! Yay Lamp and PSP and you Miggy and the Mr.! Thanks for writing this! --M

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    1. Thanks Lady! Happy Thanksgiving to your family!

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  4. I come back to your blog daily because of the honesty with which you express your feelings. It's nice to see how there are two sides to every situation but you always come down on the side of love and joy for your daughters.

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    1. BGS--Thank you. I appreciate this comment...I do try to focus on the love and joy but I think it's important to acknowledge the difficulties and pain as well. I'm glad you come back. :)

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  5. Anonymous12:00 PM

    Your blog is a bright spot in my day. Thanks.

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    1. Thank you. That means a lot.
      Hugs to you.

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  6. Anonymous2:31 PM

    I really liked this post. I read all the time. My situation is different in that it is my mom who has MS and we are all slowly adapting to her changing situation. Your fears at first sounded like mine before my mom got her first mobility device, and must like you, when I saw how much easier it made her life, it was harder to be scared. I still face this struggle (and I am sure she does as well to a much much larger extent) each time she needs a new piece of equiptment, especially as the disease progresses the mobility devices become much more necessary, but it is good to remember how much they help. All of that to say, I understand about aadapting to the challenges. Thanks for your lovely blog.

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  7. I can see why you resisted the chair for awhile. I think all of us want our babies to be babies. In a way this chair makes her a big girl. But I do see that she is out of her safe little place for the world to judge. But seeing her in that chair is just amazing the changes it will bring. Sitting next to her sister and driving around has to be so much fun for her.

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  8. I helped a little boy in my preschool class learn his power chair, he has CP and his entire body is affected so it took alot of teaching for him to keep his hand on the joystick. I had my toes run over several times and "saved" quite a few of his classmates from being run over. A remote stop button would have come in very handy :) Good for you for getting her that chair at 2 years old! Where I work we dream of wonderful parents like you that want their children to learn and grow. So many parents wait until their kiddos are heading to Kindergarten because they aren't ready. WHile I do understand why they wait it holds their kiddos back from many activities. You have blessed her and you should be so proud of you beautiful girl!

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  9. Anonymous8:52 PM

    Awesome! I am so glad that chair makes Lamp so happy.
    You need to come up with some good "come back" line to people who stares with hostility and unkindness. Something wise.

    Alexandra

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  10. Hi,

    I was wondering why you haven't written about the chair since it arrived. I didn't realize there was so much to learn and adjustments to be made. Now I know.

    It's only a matter of time before PSP and Lamp take over the world!

    Who sings that song, "Baby, you can drive my car?" Is it the Beatles?

    Did you paint that picture of grass and sky that is next to the computer?

    I like the improvised mouse pad too!

    Have a Happy Thanksgiving.

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  11. This post was just touching. I don't even know little lamp but I feel like I do. I'm so proud of all the things she has been able to do. You are a great mom Amy! Love ya

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  12. I so know what you mean. I, too, am thankful for a special child who was patient with me while I adjusted to our normal at different times through his life. So excited for Lamp!

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  13. My son is a quad amputee and I was just telling someone yesterday how hard it can be for me, as his mama, to see the looks of disgust, the pointed fingers and laughing, and hear the things that are said to him on a daily basis. It breaks my heart. It has been the hardest thing about his limb differences. The limb differences themselves don't phase me... they're nothing! But the way in which some of the world views him and treats him breaks my heart. It's as if you have a child that is being bullied by the meanest bully at school, every single day of their lives. Most parents cannot even imagine. So, needless to say, I am working on my grace... it's work in progress most definitely. It is hard not to get all mama bear on people but instead use this as an opportunity to show the light of Jesus. Some days I am better at it than others. Like I said, I am a work in progress in that area, LOL. Anyway, my son is 4, so not much older than lamp, has a power chair and is wonderfully made with limb differences so I just wanted to say that I understand how you are feeling! Love reading your blog.. thanks for being so open and honest.

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  14. This post came right at the perfect moment for me. Thank you for sharing your honest feelings. We are gearing up for some positive but scary changes for Maaike as well. I am finding that she is ready for things that I am not. I was so grateful to read your thought processes and positive outcome. It does indeed take a village, even a virtual one.

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  15. LiseM5:27 PM

    I belong to a website with many members, this guy is one of them http://www.reddit.com/r/IAmA/comments/s4pk5/iaman_amputee_who_decided_to_stop_wearing_his/

    He is obviously living a full life. He's funny too. Here's another picture he posted http://i.imgur.com/ng2k1.jpg

    I've sent a link of your blog to him. Hope you don't mind.

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  16. As always, Miggy...thank you so much for your honesty. I love the pictures of her with from behind with those curls of hers.

    You chose a great color! That is crucial :)

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  17. I'm so excited for her. I can't wait to see videos of her zooming along...

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  18. As always, your pictures capture the true beauty and essence of moments, and not mechanics and machinery! Coupled with your words, you tell your heart so perfectly Miggy.

    We are carried through this process, one trying step at a time, aren't we? I can so relate to your words. I remember being in the hospital and letting so many painful words glide right over the top of my head...as if they could not possibly become a reality. Or even if they were to, my brain would not even come close to handling them at that time.

    But then they finally make their way, and I find it funny that it's never Aviana that is the un-accepting one, but it is always me standing in my own way. For me, it is not necessarily the equipment type things, but one small example is over the years...I have finally found it hard to go to birthday parties. Where there are numerous kids around Avi's age. All the ones she used to play with. It's hard to see their moving parts, functioning brains, the party bags, opening presents, gathering around the cake, singing, the bouncy houses, the working limbs, and especially the smiling faces....and all at once. All of the very things she possess none of....the hardest part...she cannot show one happy emotion, not even a smile.

    So, for her sake (because she would most likely enjoy the party, in her own way) I can't seem to step out of my own way. I used to, but I learned that it would destroy me. So I do things on a smaller scale for her, but still - I wish I could move out of my own way for her in those types of areas.

    I think you are amazing for striding beyond, yet another step, and looking for all of the good that has come out of this for Lamp. I love looking at the pictures and seeing all that she is doing and experiencing - in her world, with her sister, with all of you!

    Love,

    Jen

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  19. I loved this post. I think you were completely justified in feeling reluctant about it. So happy to hear she's cruising around like a champ!

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  20. I say this all the time, but I love how well you convey your thoughts here. I totally understand what you mean by all your apprehensions. I'm so happy for little Lamp. Tearing up at big sis helping on the computer. You have such a sweet little family.

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  21. Yea! I am cheering inside! Your family inspires me continually.

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  22. I love the way you write. So clean. And I miss you, my friend. Hope all is well in your world. Both of those girls are THE best.

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  23. my very first time here and am overwhelmed at how beautifully you write and convey your feeling. yes as mothers sometimes we dont understand what to expect from a situation but as you said changes are sometimes great...great to learn it from little Lamp. my blessing to both the girls.

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