Something about the holidays tugs at us to reflect, to look back, to remember. I am flooded with memories of being a child, of my own daughter’s childhood, of people who are gone now, and the person I used to be (also gone now). The dawning of this new year, for me, brings to fruition so much of the promise I worked so long and hard for. It is almost difficult for my mind to accept that a new life is unfolding all around me.
I recall Christmases past when we got up early, enjoyed a quick, hearty breakfast and some gifts, and then got down on the floor to get Haylie’s mile of creeping and crawling done for the day. I ignored the criticism of family and friends who didn’t understand why I wouldn’t take a whole day off from the program that was, slowly but surely, making her more organized and calm, making her eyes straight, keeping her seizures from being so frequent, making it possible to safely remove the anticonvulsant medications that wreaked such horrible havoc on her system with their negative side effects. I remember when Christmas gifts were new books for her reading program and a letter from Santa asking her to cooperate more with her patterning. Christmases made merry on a shred of a shoestring, those years we survived on public housing assistance and food stamps, living in voluntary poverty so that, as a single mom, I could stay home and devote all my time to Haylie’s program of rehabilitation that was fixing her brain injury one day at a time.
But, those years are gone now. So is the little brain-injured girl they were so painstakingly devoted to. So is that struggling single mom, so fiercely focused on the minutia of checklists for respiratory program goals, and grams of dietary fat, and number of new words taught each day. That mom is now sitting alone on a leisurely morning, looking out the office window of her new house, where the full moon sometimes rises gently over the frosty white roofs across the street. She still has her moments, but for the most part she is relaxed and calm and not the least bit worried about her daughter, not anymore.
Because that little brain-injured girl is now a young woman in vibrant health, with a dream for changing the world that is in motion, full speed ahead. In November, just two weeks after the application deadline, she found out that her long-held dream had indeed come true when she got the email from Indiana University Office of Admissions that #IUsaidYes!
This is so significant for many reasons, but one, especially, that I want to explain:
In our society, we tend to believe that children should move along with the herd according to their chronological age. So, when a child has some neurological problems, they are seen as “less than” as compared to their chronological peers. They can’t keep up, they can’t do what the others can do (or not as well), and so they are seen as lacking. As a culture, we have a deficit view of these differences. We do not recognize them for what they truly are – a need for neurological organization. So, what happens in the mainstream is that kids tend to be pushed along with the herd, and those with neurological problems perform poorly, usually ending up with fewer options and opportunities. Their families must eventually admit that they need to reevaluate long term goals for these kids, since they aren’t ready for college level work and jobs in skilled, problem-solving roles. But, what if they just needed more time, and more help, to develop? What if, under a carefully designed program of stimulation and opportunity for the brain, they could acquire every cognitive skill others have (or even better)? What if their full potential needed more precise work to be fully and completely unlocked?
Many people, I know, felt sorry for me that I had to stay at home year after year and sacrifice a “normal” life in order to make my daughter well. Those people felt sorry for Haylie too. She missed going to school, true. She missed prom, ok. She had to endure such a disciplined way of life in order to become well. Yep. And, she has emerged with such a fierce determination to help others, such an insight into how to challenge the status quo, such physical and intellectual capabilities, such a vision for her own life…and such an absence of any self-perceived limitations.
Haylie will be 25 years old when she starts IU as a freshman next fall. Perhaps a little older than the norm. IU, apparently, doesn’t care about that (as evidenced by her early admit status). And, me? I do not give a rat’s hairy ass. I’m thrilled with the fact that we allowed her to develop to her full potential, that’s the “what” that I decided long ago. The “when” was always out of my hands.
So, for parents out there who look at their little (or big) brain-injured kids and wonder if they’ll ever be able to walk, to talk, to read, to write, to do any and all of those things at the level of their well peers, I say this: one day at a time. Each day, do your best program. Just do your best, with the belief that it’s possible. That’s it. Keep going. Keep your eyes on the prize and the rest is a constant act of sacred surrender. If I could do it, you can do it.
So, sending a very Happy New Year to you…may this year bring you ever closer to your dreams…and may you savor every moment, every single step along the way. May you find joy in your journey.
Sending all my love,
Not sure if your child is brain-injured? Go to www.iahp.org to learn more.
Know a family with a child who struggles to develop normally? Please share this with them so that they can know that they have options…they do not have to give up on their dreams for their kid.