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Health & Fitness

The Birthday Wish

Time moves slowly for Juliana, while another birthday approaches for her sister Cheyenne.

With Juliana’s latest surgery behind her, Botox complete, and baclofen levels stable, the potential of next steps in her recovery are completely unknown. Up until now there was always a defined "next thing" we could do. If we review strictly the traditional route, we have done it all. If you go further into experimental we have tried a great deal there as well. Her insurance allowable day rehab therapy visits are coming to an end for this calendar year and we will be left to our own devices for a while. 

During her first year of recovery when insurance benefits expired, this independent therapy prospect actually scared us less because we were eager to see what we could accomplish outside of tradition. Much like how this whole journey started, our naiveté allowed us to be encouraged.  Now that we know the progression is like the speed of filling a swimming pool with tear drops, "on our own" is far more daunting. We are all the voice in Juliana’s ears urging her forward and asking her not to give up and we coax and encourage her until we tire from the effort, then we step away to our other duties, comforted that we did all that we could.  And as I turn to look back, Juliana remains ‘in it’ and the words we speak echo and rumble in her head like a migraine headache. She told me as much when I last spoke to her about a "Walking Christmas," a phrase she has asked me to stop using. (It seems she doesn’t think my ideas are quite as cute as you all do.)

In speaking to other families I know what we are all experiencing is very similar:  We swing between upbeat and positive to desperate and defeated. We want so badly for our child to recover that we pour ourselves all over them hoping they absorb our strength. Sometimes though, it taps us all dry. If I could wish a cure for a traumatic brain injury into existence it would be centered on the speed in which the brain recovers—or rather the lack of speed. Time must pass because brain recovery cannot be rushed. That is what they tell us but, why? Why can’t it be rushed?  Scientists have discovered how to grow hair and nails faster, how to increase cell generation for disease control, rapid development of antibodies to kill bacteria, vitamin cocktails to push away the symptoms of common ailments.  Why is it that there is nothing that can increase the pace for the brain to heal?  It certainly can’t be that there aren’t enough examples walking around every day.  According to Brian Sweeny’s book following his brain injury, one occurs ‘Every 21 Seconds’. 

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While all of the affected families scramble to find each other so we have familiar crutches to lean on, the patients could also be assembled with the craving to be healed.  In the first year after Juli’s accident I felt like I researched every article, every option, and every possibility. As time went on I realized that I was still remarkably unaware. The therapies in all of their advancements still could not provide solutions to our fundamental problems and we frustratingly wait for that damn time to pass. And now I worry about my time passing before Juliana can beat the clock. I would like to think that some of the methods we have employed have in fact sped up the healing but of course, nothing can be proven and medical science certainly won’t commit to any of the results.  Hyperbaric Oxygen, Cranial Sacral Therapy, Cold Laser: I want to believe, I chose to believe in it long enough to put Juliana through them but when I still have to ask her over and over to repeat her words so I can even understand what she wants for dinner I wonder how far we have actually come, and how far she will ever get. I am not criticizing the speech therapy (exactly) but I also wonder why insurance can say, "time’s up" when we haven’t even received significant results. I have taken Juli to the eye doctor several times only to be told there is nothing they can do, “but please come back again in 6 months." She has been walking and balancing and hating her life all through therapy for two years now and she still can’t walk or balance.

I am certainly not saying that Juliana has not improved.

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I would be completely ungrateful to fail to acknowledge that my daughter was dealt a death sentence and yet is here with me today asking for red velvet cheesecake. She has come a long way and I won’t deny that but it only seems like a long way when I look at where she was at 4 a.m. on October 2, 2009.  If I look forward to where she needs to be, the goal is still a tiny light in the distance.  Looking forward keeps me frustrated by the fact that the process for recovering from a brain injury is not more successful and takes so damn long. 

Perhaps this is a post that should not be written.

Perhaps it appears as a criticism to all those that have tried and succeeded to make progress with my daughter and others with a TBI.  Perhaps I am sounding like a bitter old caretaker who no longer sees the light at the end of the tunnel.  But for the other moms, dads, siblings and loved ones out there that are walking in my shoes, I bet I sound like the voice in their own head. I know that you come here to learn about how wonderfully Juliana is healing and I try to capitulate to that expectation. But between the questions, “How is Juliana doing?” and my answer, “She’s doing great but this is a very slow process” are a hundred details, a thousand sighs, and a million tears. Don’t worry for me, I am not sad or discouraged or even close to defeated. But today—today I am frustrated. Nothing new happened to cause it and maybe that is at the core of my frustration but it is also rooted in watching the rest of children grow up without the sister they had.

Today is Cheyenne’s 20th birthday, the third one she has ‘celebrated’ since the accident. And every year she wishes the same thing: that Juliana returns to us the way she was. I watch as my daughter who was a lost teenager emerges as an increasingly resilient adult saddened by the change in her sister and I want Juliana "back" for her sake as much as mine. Others have recovered faster, some slower, some not at all but as Cheyenne’s birthday wish goes another year unanswered we grow colder towards father time as he shuffles past this healing process. Again. 

Happy Birthday, Cheyenne. May all your other wishes come true. 

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