What is it that keeps you going as you care for your child full-time? Part of my inner pep talk comes from a book I read when Daniel was a baby, Changed by a Child, by Barbara Gill. When I'm really tiring out and starting to wonder how I can keep up, I think of her words.
She writes, "The physical acts we perform for our children easily become tiresome chores. Our son is seven and we still have to dress him; at fourteen we are helping with the shampoo, the bath, putting the special lotion on the very dry skin. He is well beyond age one and we are still feeding him and will be for years to come..."
"There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child's need...We know the intimacy of placing food in another person's mouth...We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong."
When I hear him calling me on a Saturday morning and I'd really rather lie in bed awhile longer, that passage often comes to mind. Surrender. When I give up my ideas of how things "should" be, or might have been, or how much better or easier someone else has it, I can get into the zone. He needs me. He needs me every single day in very basic, life sustaining ways. I don't want to glorify his disability. Yet I also want to shine light on how beautiful our relationship is. It's a balance I'm aiming for.
I could easily let my thoughts overwhelm me if I dwell too long on just how dependent Daniel is on me. I am responsible for all of his physical routines such as eating and bathing as well as moving and lifting him. I support him financially. My job pays the bills, and the little I get from other sources wouldn't even cover a months worth of diapers and food.
It's not good to be without a back-up, but that's where I am right now. I have a little bit of state help in the form of a personal caregiver who enables me to get out the door in the morning for work before his school bus comes. If he's sick, I'm the one who has to stay home and miss work. The buck stops here every single time. That's ok, and yet it's not. I know I have to build a network and have supports in place. That's a topic for another post, though, and one I've touched on before.
Today I'm just grateful that I read that book when he was so small. It really affected the way I frame the experience Daniel and I are living. Is it stretching things to say that it's a privilege to be so enmeshed in caring for him? I don't think so.
So, back to my original question. It's one I really want answers to. What is it that keeps you going?
8 comments:
What keeps me going? Love and fear. Adam is my son, my hero...I love him unconditionally and would do anything for him. Fear, I fear that he will feel alone...I walk his journey with him as we are partners in this voyage. He needs me in a way no other person does...that's all the motivation I need.
Beautifully said, Phil. I have that fear as well. I never want my son to feel that he's alone, or that there is no one who wants to take the time to understand and care for him.
I, too, have read Barbara Gill's book over and over and have favorite passages that have framed how I view not only my daughter but the world of disability. What keeps me going? I honestly don't know -- there are days when I'm going through the motions and then there are others where, like you, it's an honor to be doing what I'm doing. It's both the "right thing to do" in an obligatory, highly moral fashion and also a privilege in a more abstract and deeply thought way. What also keeps me going is my other two children -- a sense of humor that is deep and engrained -- and a belief in life itself as both holy and beautiful.
You are always so eloquent, Elizabeth. I have those "going thru the motions" days. Especially when my back is sore, or I'm bored.
You have such a great sense of humor, and you're right, It is one of the things that keeps lives like ours on track.
I have to add that friendships like the ones I've found in my online communities (including you and Phil) also help me keep my head on straight. Thank you!
Delayed response here - had to think about it. Without the level of care that we provide our handsome son I truly believe he would have passed on long ago, leaving us to mourn for the rest of our lives. I know that this sounds dramatic and, now, I will lighten this. What keeps me going day to day? When I stand Adam in front of me and he grins from ear to ear and then slowly moves his head toward mine, touching noses. Or, he blinks three times to tell me that he loves me (our signal for many,many years). He also growls when he is teasing me or annoyed with me and he sticks his tongue out. Makes me laugh every time.
I love the visuals, Sharon! My Daniel sometimes kisses me on the cheek when I'm leaving for awhile (I don't get too many these days, though, he's a teenager now!). He's also a growler. We'll say, "Ya little growler," pretty often throughout the day.
Grace. And on somedays, it is hard to find, but manages to find me anyway, even when I don't deserve it.
Zoey is the compass for our entire family. The ebb and flow of life is reliant on her. Heavy load for her and yes, a heavy load for me on some days as well. But I am honored and grateful to have this precious child in my life. Truly honored.
As to what gets me through: My 5 other children, certainly my faith, my humor for sure, as dark and obscene as it can be in some moments and friends, like Elizabeth, who gets me. Who understands me on levels that most cannot.
Thank you for this post. Cannot wait to hear about the birthday boy and how he like his iPad and thank you for the comment on the Topamax ... I have changed my mind. Fickle and uncertain like that. Just can't bring myself to do it right now.Just can't.
Thanks, Heather. The darker the humor the better around here some days!
I understand about the Topamax. It's a tough call, but you'll know when it's time. I really believe that.
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