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Perseverance

April 3, 2013

“The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.”
― Randy Pausch, The Last Lecture

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We wanted to for a long time. For years. We dreamed of that bigger house with the front porch, the yard, the trees…. But we couldn’t. We just couldn’t move in the middle of the storm. It was one crisis spilling into the next. One medical drama following another, each turning into weeks of testing, all the while trying to manage the unfolding drama that is life with autistic children. (It is probably a very similar drama to life with typical children, but not having any of those, how would I know? 😉 )

And now it is there, in front of us. So close we could touch it, grasp it. The finish line is near, and suddenly I find my feet are glued to the ground once again. More storms are brewing, some are clearly visible, others sneak up from behind, and there is still that familiar one that once in a while tantalizes me with just its scent on the wind . Why now? Why again? I find myself in a dizzying panic, trying to free my stuck feet from the hardening glue, racing for that front porch before we get blown off course one more time.

The seemingly annual drama of shuffling therapists has begun early this year. Within a few short days, my children suddenly lost both of the behavioral consultants we had been working with. They simply left the company – better offers on the horizon, I suppose. From a professional standpoint,
I understand, I do. But personally, I am crushed. It seemed that while we were just getting to know one of them, the other had moved into our hearts and become part of our family. I am excited for both of these women, but it is a funny thing with these kinds of relationships. They become so much more than just “therapist.” They share in your life in such an intimate way, that when they do part with you, it seems they take just a piece of your heart with them. I’ve tried my best to explain it to my children. Troy seems used to it. Joyce is genuinely upset. And Mary… Well, I’m not too sure what she thinks. But I told her, so I know in her own way she understands.

We should have replacements by the end of the week, certainly following the same treatment plans, but they will not be the same people. They will be new to our family. I will have to retell our story to three new people. My children will have to adjust, yet again, to a new group of therapists. They will have to transition. Again. And then, we will move in a month, and we will have to start all over. Again. It is too much to think of.

As I am getting phone calls back and forth about this new transition, I am still finalizing things with that house we are buying. Back and forth with contractors, the real estate agent and mortgage broker. We are moving the closing date up by a week. One less week to get everything done…

And then, as I am on the phone being told that we are losing one of the best therapist friends we have had, my husband waves for my attention. He has just been told he has a four week trip coming up. At the same time that we are closing and moving. I will get power of attorney and sign papers for him. I will move everything we own, our dog, turtle, three cats, nine fish, and three children. Alone. That should be fun. (Note sarcasm..) Once we empty our current house, I will put that up for sale.

All of this should be enough. But then there is still the day to day. The never ending parade of therapists. The nonstop phone calls, emails, and texts, rearranging and rescheduling therapies around other therapies and doctor’s appointments and tests, and “regular” kid stuff like basketball banquets, Girl Scout meetings, birthday parties and play dates. But all of this transition has added another element. Autism doesn’t take kindly to change, so there is a lot more patience and forced calm required at a time when I have less reserves from which to give it.

This week has suddenly become filled with extra medical appointments. Joyce needs more dental work done. it would seem that years of crunching on ice cubes and too much fruit and sweets eventually takes a toll on a little girl who can’t stand to have her teeth brushed. She will be sedated. Again. And then the next day, Mary will be doing a “modified barium swallow” test to study, under x-ray how she swallows, and why she has been having more choking and aspirating incidents lately. This is a test I have been avoiding. Multiple doctors and therapists have recommended it, but I feared the radiation. She’s had so much radiation in her short life. But it has come to the point where I fear the choking more….

And today, that sickeningly familiar scent on the breeze returned again. She was so tired. All day she seemed off. I went upstairs to get something and came back to the playroom, to find her lying on her side, motionless with just a hand… what was it doing? moving… wiggling… no….Twitching. What was I seeing? Is it happening again? Waiting for something bigger. That’s what her doctor said we were doing… We haven’t caught it on EEG, so we’re waiting for something bigger… She was so tired today that she wouldn’t eat. Not even her favorites. I offered eggs after she asked for them on her iPad. Bacon. Pretzels. Cheese. Mashed potatoes. Hot dogs. Bananas. Pizza. She ate two bananas and handful of pretzels. All day. Why did her hand do that? Why is she so tired? Why is she choking again? What is going on??

But those worries are nearly constant now. We live our lives as many special needs families do – in a constant state of heightened alert. Dancing around sensory issues, charting out our day so routines remain as intact as possible, countless phones calls with doctors and therapists. This is our life. And it will never slow down, even just enough so we can buy a new house. But that’s okay. Because we’ll buy it anyway. Happiness will not be handed to us – we will forge our way to it, the way we always have. Because while this isn’t the life we planned, it is the life we have. It is constant, changing, adjusting, adapting, living. And I wouldn’t trade it. Not for anything. But I sure wouldn’t mind a cruise to the Caribbean with just my husband one day… You know, when things calm down. 😉

“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
― Ernest Hemingway

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6 Comments leave one →
  1. Life&Ink permalink
    April 3, 2013 12:49 pm

    Oh how I wish we lived closer, because see, my journey is easier now so that means with the time I have I could help you while you are still in the thick of your journey. Oh how I wish I could come and pack and help you move. How I wish I could lift some of the emotional burden and place it some where else for you. But I can’t and not just because I live far away, but because this is YOUR journey. But you are strong, and you have a wisdom and an awareness about you that shines through in your writings and it flows from you with such sensitivity, such beauty, that I am in awe of all you do, all you face and how you do it all with such love towards your children, towards yourself and towards life. And that cruise, you will have it because one day you will be where I am, most of the way through this particular part of the journey and you will have the time. Indeed, in time you will have time…

    • April 3, 2013 6:57 pm

      Thank you Charlotte. It does lift some of the weight just having friends like you to share the journey with. I’m not worried about the packing or the move. We will deal with it as it comes, it’s more the logistics of handling the kids and keeping calm while everything is in upheaval. It really never stops! But someday… Someday they will all be a bit more independent, and things will settle, and then I know I will miss these times. I just have to remind myself of that while I’m tripping over lined up matchbox cars and shreds of torn paper that Mary has been stimming with! 😉

  2. April 4, 2013 12:32 am

    I am crying reading this because so much of this speaks (beautifully) right to the most raw parts of me. It IS so, so, so very much to deal with and when you add in fear about medical situations on top of an already heavy burden it’s unfathomable. You’re amazing for your strength, you know. We’re facing choking/aspiration problems here too but different I think – lots of gag/vomit maneuvers. Seriously, I must have eaten babies in a past life to be forced to clean up so much puke in THIS life. I hope your youngest is able to get through the swallow study and that it is not too terrible on -both- of you.

    We’re about to transition out of the care of most of our therapists too. I can’t even deal. Nope. It’s not happening. I’ll be over here with my head in the sand.

    I hope you and your husband can get that break on a cruise ship sooner rather than later. Man, I kind of hope we can ALL find that break. 😉

    • April 4, 2013 2:25 am

      Head in the sand! That’s me too! When our Early Intervention team left us, I thought I might have a nervous breakdown. I feel for you. But you’ll get through it, and you’ll figure out your next steps.

      I think we all deserve a cruise! One with those waiters walking around with super fruity rum-filled frozen beverages by the grown-up pool. Yes, I’m going to meditate on that for a bit now…. 😉

  3. Sarah T permalink
    April 17, 2013 3:17 pm

    Oh Erin…you are so eloquent and I truly admire your grace! And taking time out in the midst of all this to talk me off of a ledge…well…you’re pretty amazing! Off to dream of frozen beverages and swimming pools! 😉

    • April 17, 2013 6:54 pm

      Thanks Sarah! One step at a time. My poor husband is now being cornered (by me and the kids) into another Disney trip (not really cornered – he suggested it)…. Large cheerful mice aren’t exactly as relaxing as sitting poolside sipping frozen rum drinks, but I’ll take it. It’s just going to have to wait a year until we recover the savings account! 😉 but having things to look forward to always helps me put one foot in front of the other. And the move is exciting – i really have no right to complain. I hope things smooth out for you soon. I’m here to talk anytime. 🙂

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