Wednesday, September 23, 2015

Thoughts on Walking

face painting last weekend courtesy of the better parent, aka dad. 

Have you ever had that experience where your teacher sends home a note that says something like, "Sally is doing really well in her independent study of advanced chemical compounds! Keep up the great work at home!" And you're like, come again?

That's how I felt when I got an email the other day from Lamp's therapist saying, "Wow!  She's made so much progress! I tried to get a video of her walking but it wouldn't load, I'll send it later!"

Walking?  Huh?

Hey Lamp, come here? So Sue tells me you did some walking the other day....were you holding on to anything?

No.

Were you wearing your brace?

No.

Sooooooo....

I was just doing some walking on my own mom. (exasperated)

Uh, OK.


(Silently in my head ??????? and !!!!!!!)


Then girlfriend goes ahead and shows me a couple steps. To be clear these are really, really small steps. Whatever you're imagining cut it in half then take it down a notch. But it's not about distance it's about balance, strength, coordination, determination and practicepracticepractice. And in some ways it's not even about those things.

Sidenote: It just occurred to me that she is going to be so good at teenager-ing. I'm going to have absolutely NO idea what is going on in her life while she's right under my nose. Amazing. I can't wait.


From questions I have gotten the past year and a half, I realize that there is some confusion over whether or not Lamp can walk mainly due to various Instagram videos I've posted. Let's recap: Here's the video of the first time she stood up without holding on to anything. A while later I posted this video of her taking a couple tiny steps using her crutch and most recently I posted a video of her standing up from a sitting position completely independently, meaning she's not grabbing anything to help her get up. And now today a short video of the very small but very significant steps she is taking. To sum up: She is not actively walking--not in the way that you and I walk which is to get somewhere. Not even across the room. But she is taking steps--mostly in therapy. To get around she scoots or uses her newest power chair that she can get in and out of all by herself. This power chair is her primary source of mobility around the house while she still takes her first and more conventional power chair to school.

But taking steps without a brace, or a crutch or anything?
This is a very big deal. She's getting there.

But an even bigger deal? She doesn't care that much. And neither do I.

I realize that sounds confusing. How is it a really big deal while also being not a really big deal? I'm so glad you asked, let me explain.

When Lamp was born the whole walking issue was, as noted above, a really big deal. And I was sure she'd be walking on a typical timeline. Part of this was denial, part of this was because I had talked to other mothers of kids who had limb differences on all 4 limbs and those kids still walked by 12-16 months. That coupled with the fact that many doctors had told us that they believed she would walk eventually. But Lamp's differences were more pronounced than the other kids...I just didn't realize it. Or didn't want to (denial).

When you think about it walking/not walking is a rather big medical cliche... we've seen those soap opera scenes where the worried family looks up to the tall, handsome doctor who announces, I'm sorry but he's never going to walk again, as everyone bursts into tears. Of course being a soap opera he does walk again... down the aisle on the day of his wedding as he's getting married to the physical therapist who not only taught him how to walk again, but also how to love again. But I digress... The thing is this question, Will she walk?, Can he walk?, Will she ever walk again? is a rather big marker of I don't even know what, but something, in our human experience. We put a lot of emphasis on this ability to walk. As long as they can walk everything is going to be A-OK!

So yeah, I wanted my kid to walk. And that's not wrong. Not exactly. That first year I was really focused on walking. It felt too important and too big to be relaxed about it. And so when that typical walking time table came and went, I was sad. And I mourned. And I wondered when?

And then one day--I don't remember when--I let go. I let go of the timetable, I let go of the expectation and I let go of the importance of walking. This was really good for me and it felt good too. In time I would learn that it was even better for Lamp. One of the reasons I love her doctor in Dallas so much is that he has such a holistic, healthy approach to limb differences. He observes her whole body and how she uses it all together to do the things she needs to do and wants to do. While surgery could improve her walking, it could also impede her in other ways and therefore we have not yet considered surgery a viable option. I can't tell you how wonderful it is to have a doctor who doesn't want anything--prosthetics, surgery, a fixation on walking--to get in the way of her being a kid. A happy, typical kid. That's the goal.

Isn't it funny how success can look so different depending on the lens you're looking through? From the outside looking in getting Lamp to walk could seem like a huge success and if we had pushed hard enough--surgery, more therapy, more equipment--perhaps she would be there already. But that big success would have come at a bigger cost. A cost that she would she would potentially pay the rest of her life.


If you would have told me when Lamp was born that it would be 5 years before she takes her first steps I would have been crushed. But now, now I see what success really looks like. It looks like a girl who is happy, a girl who loves herself just the way she is, and a girl so unfamiliar with the idea that walking is the most important thing ever that she didn't even bother to tell her parents she took some steps at school.

A whole, happy person is much more important than any individual thing we can do, be or have everytime. That's what I learned today.

Writing this post was really eye-opening for me personally (one of the many benefits of writing). Has anyone else had to let go of something--even something really important--to be happier and healthier WHOLE person? 

18 comments:

  1. Melissa2:05 PM

    Such a thought provoking post. Thank you so much for sharing your incredible family with your readers. You all teach me so much

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  2. Hello,
    I came here from Say Yes! blog and I am blown away by your attitude. Your question today prompts me to answer: yes! I let go of the idea of my son talking "normally." He has apraxia/dyspraxia and didn't really learn to talk until he was about 7 or 8 years old. Reading your blog today reminded me of how it has been for us. And, you are so right, that if someone would've told us how long some things were going to take we would've been disheartened, to say the least. But then life goes on. I also want to say that I love that you have a doctor that has not personal agenda or expectations, but to help children develop and be happy. What a gift. Thank you for writing.

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    1. Yes I really like our doctor. People wonder why we would go all the way to Texas to see a doctor when we have one of the best children's hospitals in the country right here...but when you find THE right doctor for your very rare kid, you stick with it! Also if you'd ever be interested in featuring your son/family in my special needs spotlight series email me at thislittlemiggy at gmail dot com.

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  3. Welp, I just deepened my crush on you and your awesome family. It's not the walking, it's not the child with limb differences - it's the family who has confidence in exactly who they are - collectively and individually, because they love unconditionally.

    On a sidenote, I did have to let go of something. I had breast cancer at a young age - just after I got engaged. All I ever wanted to be was a mom, but was told by doctors that after my treatment, "I would never be a mother". I had to let go of that dream. I mourned the loss, and when I was truly able to let go, the miracle happened. We finally adopted the boy who was absolutely meant to be our son. Doctors... what do they know?

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    1. Awww, thanks. It's fun being crushed on. :)

      And WOW to letting go of your own big thing and then being so wonderfully, pleasantly surprised by your son! What an amazing story!

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  4. This...this is everything: "Isn't it funny how success can look so different depending on the lens you're looking through?"

    Kudos to you working so hard to raise happy and healthy kids and lead by example for them.

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  5. Beautiful post. As the Mormon mother of a gay son I had to completely let go of what I thought I wanted for his life. In the process I have let go of many other things I used to feel mattered so much, and replaced them with what should have mattered all along. Love you and your family.

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    1. Diane--I bet you get this. Isn't it crazy how amazingly smart we are before we have kids and how we know EVERYTHING and then we have kids and realize... oh, I actually don't know anything. Of course life can do this to you even if you don't have kids, but something about the complete surrender that comes with parental love that enables you to see and accept the world differently...it's a beautiful thing. And while I know being gay is not a special need, it is definitely a special circumstance in the Mormon world...if you ever think you'd want to share your story I'd love to do it for a "special circumstance spotlight."

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  6. Anonymous11:56 AM

    Amazing pictures! Lamp is full of light. As an OT a few steps are great for function! And yes, we're always the last one to know when our selectively mute daughter makes progress. I'd like to share this picture with you as the girl on the right looks alot like Lamp - they are all comedians:
    http://www.lapresse.ca/le-soleil/arts-et-spectacles/television-et-radio/richard-therrien/201509/24/01-4903696-les-detestables-a-v-les-adorables-a-z.php?utm_categorieinterne=trafficdrivers&utm_contenuinterne=cyberpresse_B25_A-decouvrir_219_article_ECRAN1POS5

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  7. Anon--OK, that woman is by far the person I have seen who is the most similar to Lamp's body type. Do you know who she is? Or any other information about her? (I don't speak French--ack!) And I LOVE that she is a comedian...because I seriously love comedians.

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    1. Anonymous10:52 PM

      I know it's uncanny. I've looked and could not find more information yet. The show starts on October 26th and I'll follow up then. It's a prank show that looks both funny and adorable.

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    2. Anonymous2:15 PM

      The host of the show is Pierre Hebert and he has a facebook page. Perhaps he might be able to help you connect with her? https://www.facebook.com/hebertpierre

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  8. Anonymous11:18 AM

    Yes, Pierre Hébert is the host. He told me her name is Charlie. The show's name is ''Gand de malades''.

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    1. Wait...do you know the host and would you be able to put me in touch with Charlie? That would be amazing/cool. I'm guessing I would need an interpreter.

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    2. Anonymous9:47 AM

      No, I'm sorry, I don't know him personally, I just asked on his facebbok page. He'll understand English.

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    3. Reading through the archives over here (came over from your Design Mom feature) - love your blog and family, by the way! Just wanted to say I speak French and could do some translating/interpreting if necessary... 6 months later ;)

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  9. https://www.facebook.com/717118631668983/videos/845538162160362/?fref=nf

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  10. This is really a wonderful post.

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