Thursday, March 26, 2009

Pace Yourself

The six weeks have expired and Wednesday found us back at the orthopedists for the verdict on Willa’s errant hip. Home free? Body cast? Surgery? It was to be none of the above.

Willa will need to wear her brace for the next six months. That’s MONTHS. Immediately my brain began to whir and threw up thoughts such as: by the time this thing comes off she will have spent a third of her life in it, she will never walk at this rate, she is going to spend the long summer in a foam and plastic cast which will rot her flesh, she can still not swim…

But then there were also these: it’s not surgery, it’s not a body cast, it’s just a brace and will probably work eventually, she doesn’t even really mind it, she will need new clothes…

Which leads me to one of my many questions in all this. When you have a medically fragile child, when life will be punctuated by constant and ever-present medical issues to varying degrees, when there is no cure, no end date, no stop to the body of my daughter that insists on presenting challenges to her life and development, how are you meant to pace yourself?

I sat in the orthopedists office and was wracked by the news. Again. It was not a new feeling. Not even a merely familiar one. It was a feeling that I feel all the time now. It’s a strange sensation, sickening fear mixed with a bored aggravation. It is simultaneously visceral and mundane. The “here we go again” married to “oh my god.” And each time you have to strap the kid back into her apparatus, drive home and make dinner. It’s just life now.

So, how do I pace myself? How do I feel what I feel but not let it chip a piece out of me each time? How do I stem the flow of worry and sickening fear and morbid thoughts of death and dying? How am I to have the energy to live a lifetime of this? How do you manage to not just live your life but flourish in it? How do you not go dead behind the eyes? How do you fiercely defend your very being from your life? Or rather, how do you allow your very being to embrace the life you have, letting the new bolster the old?

Willa is one and she has been hospitalized six times. She has developed scoliosis. She has hip dysplasia. She does not eat. She is in the 0.08% for height and the 0.14% for weight. She cannot push up her head when on her stomach. She has heart problems. She needs to wear braces on her wrists to keep them aligned. She does not sleep. She almost died in surgery. She is on medication all day.

Willa is one and she has not developed cancer. She smiles and laughs. She adores her parents and throws her body at us when she sees us. She does not have Chiari malformation. She is not on a ventilator. She is able to tolerate her g-tube feeds. She is not in constant pain. She can pass toys in her hands. She can say “ga.” She is not in a body cast. She is not having surgery again soon.


Each step feels like it is made by feet with the toes cut off. Each mark of progress somehow bears the mark of amputation. But progress is progress and we have made ours. And so we march on. I am learning to pace myself. Slowly.


moondogfarm said...

Hi Heather,
I'm not sure if you remember, but i met you long ago at the Skiff House in Bar Harbor with Blair... i just saw him today and he told me about you, and Willa (my own 5 year old daughters name), and your blog. I've been unable to stop reading it tonight and just wanted to share that I think you are the most amazing mother and writer. Just so beautiful and wonderful and hopeful, despite all you go through each day. You must keep it up and one day publish it! Sending you many, many loving thoughts and kisses for your sweet Willa...

Nikki Fox

Jen said...

I don't know. I just don't know. The only thing I can tell you is kind of lame and cliche, but it's still good advice. One day at a time. Keep putting one foot in front of the other.

My child is not medically fragile, but comes with his own set of issues that, at times, are so overwhelming to me that they just swallow me up. When that happens, I have to remind myself to try very hard to pull away from seeing the big picture. From envisioning the future. From speculating about what life will be like for him, and us, as his family. And I try to push myself back into the moment, into the here and now. Into this little boy and his illuminating smile, his infectious giggle, and his love for life.

Sometimes, this is hard to do. I have to let him help me, let him guide the way. And he always does. Peace, and patience, and hugs to you, and to Willa.

Chrystal said...

You know, I don't know. I'm not sure how to pace myself and sometimes it really shows. I worry and wonder about things I can never change and have no control over.

But then there are other days when I treat everything we deal with and do as not unlike what any other family deals with and does and that makes me feel better.

I don't know if that's denial or acceptance, but it works. For now.

Anonymous said...

A beautiful poem:

By Anonymous

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
God gave me life
To live and embrace
And I'll do it as you do
But at my own pace