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Tuesday, November 22, 2011

"You don't have to break in two to love someone"



This is the line uttered by one of my favorite characters in a great story called "What Dreams May Come" (also a movie with Robbin Williams) and that line keeps running through my head when I think about all that is before me to manage lifting Ellie.

My back has three damaged discs already - two are properly ruptured and one is bulging but I think I actually ruptured it too about a month ago. But I didn't go to the doctor only the chiropractor because I didn't have time. See the problem already?

And I keep hearing the line only it now goes "ya shouldn't have to break in two to love someone".

I have dreaded this day and now it's here and it sucks. We wiped out all our small savings to build her a room which is still not done. I got a loan for that as well - so more debt - yay! Our car door does not open very wide so it's a hard lift getting her in and out of it that often leaves my back in bits or Ellie with a bump. This is just not right. I am exploring options of getting a used minivan with a rotating seat. A conversion van is out of the question - just way too expensive. And none of this is covered - nor is any part of her accessible room by insurance or anything. Let's hope neither of us gets laid off.

I feel like we are walking a tight rope and it's a little scary. I am done with trying to be super mom. I will still go to the gym and do the physical therapy and strengthening exercises the back boot camp people gave me. I will keep strength building. However, bird boned as always, I am at my limit. I wish I was some sort of amazon woman body builder type with big large bones that would make lifting Ellie no problem. But I am not and it is a problem that is getting bigger by the day (also great problem to have if you have read my post on counting her weight in grams). I have also thought about hiring a bouncer. I imagine some big guy just hanging around reading the sports pages, head shaved, wearing black, enormous but benevolent and waiting around patiently in between lifting Ellie for me from car to chair, from chair to bed, from bed to chair, from chair to couch, from couch to chair...you get the idea. But that is just too weird. ;-)

So how do I put my foot down and protect my back so that by the time I am 50 I can still stand erect? How do I say no more lifting and still take care of her? I haven't figured it out yet and right now as I write this I am in a bit of despair. Dave is going to be traveling soon and that leaves all the lifting to me. So it seems I may have to break in half to love someone. I am not happy about this. It is energizing in that I will once again have to fight the school people who think it's alright that Ellie ride the bus with people who won't look me in the eye and talk on cell phones the whole time they are driving her. I have to find some way to buy a used car to get the swivel seat thing maybe which means haggling with the dealership which I am not good at. As well as take on more debt which may not be possible.

I am overwhelmed. Ellie is maturing very fast it seems so we have to have that conversation with the doctors too. If this is her natural time to mature ok. BUT if she is maturing too quickly so that her final height is under 4 feet - I am so not for it. My whole goal with all medical interventions she undergoes has been to try to preserve her body to what it would have been had her brain not been deprived of oxygen at birth. The brain is plastic and resilient and nano technologies are coming along quickly. You just never know. And if there is some massive healing in her future I don't want her to end up being less than 4 feet tall - that is just not right. I want her to grow and mature - it's her right of passage. So we need to figure this out too and the truth is - other than the bone age hand scan - it's hard to tell what would have been.

Brain injuries really suck for the record.

To flip the coin to the sunny side, it's very clear that she is making progress in school. Awesome progress and happily so! She "ran" in a Turkey Trot which involved a large, loud crowd and she managed it. She didn't freak out at all. This is literally a first. She is also making progress in her academics and her teacher this year sends home excellent homework and this is a focus. Which is such a balm to me. Why not throw all the academic stuff possible at Ellie and see what she does with it? I hate it when anyone underestimates her.

I also made a connection with someone who really knows the Feldencrais landscape so we will be trying that. Dave researched this electrical stim therapy as well that helps build muscle so we are looking into that as well. It feels good to be once again looking at healing therapies versus solely medical management issues. On that front we are never doing botox again (we have been using it prevent contractures in Ellie's ankles - to no avail I might add) and I regret we did it at all. More on that when we figure this new path out.

Also, my study for my dissertation was approved and I will be collecting data soon and hopefully completing my Ph.D. in March of 2012. Completing that will be like taking a huge bloody thorn out of my side that has been there for the past decade. I hope it will feel good and won't tear too much in the extraction. Writing the lit review was like giving birth so maybe that was the worst of it.

I have to remember that these are all really good problems to have and that it could be way worse. Yet I am restless. Very restless. It's hard to stay present - it's uncomfortable every day.

I also keep remembering this story:

There is a woman that is very unhappy with her life and she goes to a yogi for help. The yogi says, "This is what you need to do, move the chickens into the house with you." She is surprised but complies and comes back to the yogi in one month and tells the yogi that her life is even worse than it was. The chicken's are always underfoot as are the children. They are also really noisy as are the in laws so there is a constant din. The yogi says, "Ok then, now move the cow into the house as well." She complies and goes back to the yogi again but this time after only two weeks. She tells the yogi that she is at her wits end. The cow is taking up any extra room they had and is nibbling on all the rugs and moos really loudly all the time. The yogi tells her, "Ok, move the chickens and the cow back into the yard". She does this. She sees the yogi around town and thanks the yogi for all the help and tells the yogi that her life is oh so much better and she is so grateful. ;-)

Right now with the construction, the dissertation, my re-injured back, the doctors appointments, the search for proper transport - it's all cows and chickens. But I suspect it will get better. Thanks for listening.

Image descriptions:
Ellie in pink winter coat looking for me as she rides Splitty last Saturday
Ellie with feathers still in her hair and ribbon from the Turkey Trot. Also, notably, siting, propped but unassisted!

5 comments:

Anonymous said...

I do know how you feel. My back seems eternally sore. And that money tree isn't growing no matter how much I water it.

Love the yogi story :-)

Jacqui

Tara said...

I just wanted you to know that you are not alone ... your post really resonated with me ... my son (7) is getting so big so quickly, and my back seems to be strengthening at an inverse proportion to my son's growth. It hurts constantly, and I'm living in fear of the day it completely "goes out." I also relate to the overwhelming mountain of "stuff" to worry about -- I'm learning that I can't look into the future (and I used to be such a planner!) -- I can only focus on the present, but that is so not me ..

Didn't mean to hijack your post -- I wish I had some answers, but maybe just knowing there are more of us out there might help?!

Tara

Anonymous said...

Hi Kathryn, Thanks for your post. I always feel the need to connect with you after reading what you've written, yet never know what to say. Just that I admire you & am sending you prayers. Pilates: that is core-strengthening. Have you tried that for yourself? It really helps back problems. I relate so much to the ambivalence in your post: of course you love Ellie enough to do anything for her, but it helps no one for you to become a cripple, too. I don't live in the States and am always aghast at what you have to fight for re: health ins. "Batshit insane" -- like that tag. Sometimes it just is what it is. Good luck with all the things you're juggling, sending you positive energy.

Anonymous said...

Hello,
I just read this post and I was thinking to myself maybe you should discuss your situation with an OT!!!!
Besides the back exercises, they can give you some great transfer techniques, and they know so much about ergonomics, plus they will understand because they will have worked with clients like your daughter. It would probably relieve a lot of stress learning these new techniques now as she will continue to grow big and strong because you are such a great mom!

TherExtras said...

Hi, Kathryn,
This is late after the post. I hope at least the chickens are out of your house, if not the cow (dissertation) yet.

I'm glad you had the chance for a back boot camp and add my support for Pilates (above comment). Inexpensive so that it might be worth a try - a polypropeline weight-lifters wrap available at sports equipment stores.

I try so hard to tell parents and therapists to teach standing transfers to their child early and before their children outgrow easy lifting. Whether OT or PT - the other commenter's suggestion is worth it, too - have someone observe your technique and help you problem-solve. (I realize it might have been someone like that who gave you the rotating seat idea.) Sometimes there is only so much one can do, I know. Another blogger-friend of mine had back surgery but is doing well. Lisa at
http://donaldandlisasorensonfamily.blogspot.com/2011/10/neurosurgery-update.html

Your orientation on preserving her body for later brain development is worthy. While Botox was not the answer for her standing (not taking steps) can help maintain ankle range. Many particulars to this being effective, too, such has it being part of a lifestyle - not a 2x/week treatment.

Wishing your house full a Merry Christmas! Barbara