[tweetmeme source=”luau” only_single=false http://www.URL.com]
I am running – pounding the treadmill.
My demeanor is calm, almost stoic, but I am sinking.
Sweat is dripping out of every single pore of my body. I am drenched. The display of the treadmill is spattered.
I’m waiting…waiting for the endorphins to kick in; waiting for the wave of “feel good” to wash over me and wash away the troubles of the day, the 1000 paper cuts that are threatening to bleed me out. I wait, and when I feel like I’ve waited long enough, I double-down and pick up the pace. The sweat continues to pour out of me, now like a leaky bucket losing water.
My breathing becomes labored and yet, I am still calm, stone-faced and waiting.
When the endorphins finally kick in, it is almost anti-climactic.
Yes, I feel good.
Yes, there is some release of tension.
But there is an underlying sense of dread, of sadness, of disappointment, of loneliness.
Something is not right. There is still a weight upon my chest, my shoulders, pressing down. The immediate world around me is no longer bending to my will. The destiny of me and my family no longer seems to be in my hands.
***
I think about Brooke’s future a lot. I know that any parent thinks about their child(ren)’s future, but when you have a child with special needs, like Brooke has, those concerns get multiplied. What roadblocks will autism throw up against her as an adult? as a teenager? as a tween? next week? It doesn’t seem to stop. A few weeks ago we had a scare that Brooke might be suffering from brain seizures (nearly 1/4 of kids on the autism spectrum will at some point suffer a seizure of some sort). She had been rolling her eyes into her head sometimes at a terrifying rate of 10 – 15 times per minute. In the end, after an EEG and an evaluation, it was determined that she was not suffering from seizures, but rather a motor tic associated with autism.
Not that I would have wanted it to be a brain seizure, but I thought, “Great, just one more thing that is going to make it difficult for her. Great!” Fortunately the eye rolling has subsided immensely. I now see her do it maybe 10 times in a day as opposed to 10 times in a minute.
That, along with a few other factors related to Brooke, have taken their toll I think. My sleep has suffered. My running has suffered. My motivation to do ANYTHING has suffered. I have been sinking slowly in a quicksand that has threatened to swallow me up.
***
But then last night I was thrown a rope.
Jess and I went to listen to a talk given my Autism Speaks Chief Science Officer Geri Dawson. She spoke on the state of science and research in the field of autism – where we were, where we are and where we just might be going in the not-so-distant future. Jess is much better at conveying events, so I will leave it to her to elaborate on the talk, but I will tell you this – we were sitting with Mrs. SGM, a military wife/mother of a little one with autism. At the end of the talk, Mrs. R went up to Dr. Dawson and told her that this was the first time she had been to something like this where she walked away with a sense of hope – a true sense of hope.
That is exactly how I felt.
It took those words for me to realize that my “hope” had been waning over the past few months. It was more of a general deterioration of my hope for the future. As the economy continues to struggle and town budgets get tighter, administrators eye more and more the funds spent on a child like Brooke. Long-term views are replaced by short-sighted ones. It’s happening everywhere and our community is no exception. So my hope for Brooke had taken a beating.
Until last night.
What she said will not impact the budget issues each town faces, but as I listened to Dr. Dawson speak, I was lifted by the possibility that big breakthroughs are right around the corner – that there may be a time, relatively soon, when Brooke’s autism won’t demand so much attention, so much manpower. My hope for a truly independent adult Brooke was reborn.
***
And with that, a certain amount of weight was lifted off of my chest. This morning I woke up just after 4AM and went for my run (10 miles, putting me over 1,000 miles for 2011!). There was the usual dragging my butt out of the comforts of my bed, but there wasn’t the sense of defeat and dread that has accompanied the moment of consciousness this past month or so.
Did Dr. Dawson’s talk resolve the issues we are currently dealing with now? No. Not even a little. BUT, as I look out over the horizon of time, I can see the storm clouds starting to break. The skies aren’t quite as dark or threatening and I think I see some sunshine coming through.
Thank you Dr. Dawson and Autism Speaks for inadvertently throwing me a rope and bringing back the sun.
Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here
Here comes the sun, here comes the sun
and I say it’s all right
-The Beatles
This is the second time an Autism Speaks scientist has pulled me out of my funk. I had the pleasure of also seeing Dr. Tager-Flusburg again last night.
Run Luau Run 
Well said, Luau. Thank god for ropes……
Oh Luau – I am crying as I read this. I am so glad that you had your breakthrough. It’s amazing when stressors are pressing on us and we don’t know what they are, how they can become an unbearable weight but once we name it and claim it we can feel the hope and the light shine through. And remember with all that you are doing to support Brooke, growth is inevitable and she will be an independent adult making an amazing contribution to the world making it a much better place for her place in it. And remember to hold onto the rope of love and light that surround you and your family every day! Thanks for sharing your incredible journey with us Luau. Have an amazing day!
Have you seen this documentary? I started watching it and it makes sense. Maybe there is also hope through this rout for our angels. 🙂 Hugs
Opps, forgot to past e the link, here.. http://www.youtube.com/watch?v=-ADh0xUZVEs&NR=1
wow. You reminded me that not only do I live this saga every day, but so does my husband. I’m so glad you were given hope last night, and you were able to get back on the road again. I hope my husband finds his rope soon.
Hope.
Such a small and simple word with more power than one can describe. I truly did reunite with Hope last evening, and it feels GOOD. Invigorating. Renewing.
Such a pleasure to see you and the better half :0)
Thank you, Luau. You and Jess are an amazing team – both of you and your daughters are a true gift in this world!
Thank you for putting this out there. A good reminder for the mamas, that the dads are in this too. Hope is what keeps us going.
I agree with Paula – thank goodness for ropes.
Take care.
Sometimes, we don’t realize we are sharing the rope with others…thanks for the lift today.
Luau,
I had to hold back tears as I read this. My foster daughter (who is also my niece) she just recently went home to her parents. She is the reason I started running. She is extreme special needs. She has a rare disorder called Septo-Optic Dysplasia, that I got her diagnoised with. She was born blind in both eyes, her septuim pellicidum in her brain is missing and her pituary gland is almost non exsistant. She will be 3 in August. She is barely walking, hardly talking and the list goes on and on. Unfortunitly she will more then likely at some point in her life be diagnoised as either slightly or moderately mentally retarded. She had 10 specialist and 8 therapies a week.
So, I know exactly what your going thru. My niece is easily 12 to 15 months or more behind depending on what skills your looking at. My husband and I had her for a little over a year. We raised her, that NO matter what she will be able to do anything that she wanted to do in life. It might/will take her longer to do it.. But she could do anything as long as she put her mind to it.
We even figured out how to let a blind teenage be able to drive behind the wheel of a car (in 13 years or so) Our local racetrack does blindfolded taxi-cab races. \
Don’t ever loose hope with your daughter. She can do anything that she wants in life. It might take a little longer but its well worth it.
IF you ever want to talk…. send me a msg
Danielle
you do such an incredible job of staying strong for us that i forget – i forget how much work it takes to be as strong as you are. i forget that you live this too. i forget that we share it – the fear, the sinking, the weariness. (and now, the hope.)
i’m here.
love you.
but I thought, “Great, just one more thing that is going to make it difficult for her. Great!”
I just read this aloud to Steve because he’s said those same things about O. And he’s been strong when I haven’t, and sucked it in. But you all need to let it out, just as we moms do.
I wanted him to know that he wasn’t alone. Thank you for writing about this, and for being such a great dad and husband.
I enjoyed reading about your point of view of things, even though I am very sorry they are things you have to write about or contend with at all.
I/m sorry you’ve been feeling so frustrated and unhappy. But I’m so pleased to hear that you are hopeful for a better and independent life for Brooke in the future. We’re here for you.
Love you,
Mpm
You are an incredible father and husband. It is so clear how much you love your family, and that is a beautiful thing. I hope this rope sustains you above the quick sand for as long as it takes until another rope comes and then another and another. Thank you for sharing how you feel!! Your wife and you sure do make a great team.
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Anyone associated with autism should read, “Son Rise” by Barry Kaufman, and his other books about his son.