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Hard

February 15, 2013

She stood in the storm, and when the wind did not blow her way, she adjusted her sails.
~ Elizabeth Edwards

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I haven’t written here in a while.

Things have been busy.

Things have been difficult.

Things have been hard.

That’s not to say things haven’t been exciting. There has been a lot going on. A lot.

Joyce has been regressing during the winter months. I am in a battle with the states insurance company to secure her more assistance.

Daddy has been working a lot, leaving me on my own with our crazy schedule for much of the winter, and now I hear he is going to be flying even more over the next few months. When he has been home, he has been amazing, cooking, cleaning, helping drive the kids around, and generally pampering me. I know that sounds normal, but when you get used to doing things on your own, having another grown up in the house on your “team” is everything.

Mary has been sick. She has been sick off and on for much of the winter. We’ve made several trips to the ER, including one when she had a bad stomach virus. That was a difficult night. I have never seen her so sick…. so weak… The fear surrounded me that night, watching her struggle for breath as she aspirated more and more of her sickness, seeing her genuinely too weak to swallow any liquid, and listening to the ER staff discuss just how sick she had become and how it all happened within hours, not days, that old familiar fear crept back in. The one I thought I had cast away. So I have kept myself from writing, kept myself from reliving the fear, but instead it has started gnawing away at me.

The fear is sapping me, at the same time that I am gearing up for yet another series of battles with beaurocrats to make certain that my children get the services that have been helping them so much.

At the same time, we have decided the time has finally come to put our itty bitty three bedroom house on the market. We are looking for a farm. I am going to see one on Saturday, hoping it will be the one. We have talked about moving for years, but we kept putting it off, not knowing Mary’s prognosis, then wanting to get her settled into her specialized school out of the school district we are in. It is time. We are moving. It is exciting, but boy is it overwhelming.

I met with our pediatrician on Monday. He is concerned about more of Mary’s blood test results. We meet with hematology/oncology on Tuesday. (I don’t believe Mary has cancer, they are just the same department, which is pretty much enough to freak me out. 😉 ). We meet again with mitochondrial neurology the following week. We have decided to ask the team to refer us to another team, possibly in Boston, just for a fresh perspective, and possibly some insight into what it is we are dealing with. If it is mitochondrial disease, we need to know. If it is something else, we need to plan. And now it appears, we have decided to travel to find the answers.

So that’s some of what has been going on. It’s been a little crazy. It’s a pace we are getting used to. I found myself looking through old pictures tonight, pictures of when Troy and Joyce were toddlers, from before the first diagnosis, from before Mary was born…. I found myself sobbing, missing the innocence of it. Back before the word “autism” entered our lives. It was so simple then…. I miss it. I can’t say I would trade what I have now, but to look back and remember what it was… before…. It seems so much calmer…. So much easier…. I look at my many friends with new babes of their own, and I only pray that they can appreciate the quiet, the innocence, the ease. Because once they grow up just a little, special needs or not, it becomes so much busier, and you tend to forget what once was.

It’s almost like the hard times circle ’round.
A couple drops and they all start comin down.
Yeah, I might feel defeated,
I might hang my head,
I might be barely breathing, but I’m not dead.

No, cause tomorrow’s another day,
and I’m thirsty anyway,
So bring on the rain.

~Billy Montana, Helen Darling

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10 Comments leave one →
  1. February 15, 2013 4:55 am

    Wishing you many moments of peace and calm amidst the ever threatening tempest xx

  2. autismmomgripes permalink
    February 15, 2013 10:04 am

    My prayers go out to you and your family. The road with autism is so difficult, but God is there with you wherever you go, whatever you do. God Bless.

  3. February 15, 2013 1:37 pm

    You titled this post right, that’s for sure. What can I say? You are facing and have been facing some major storms this winter. My heart goes out to you as we’ll as my prayers. Being moms, we have no choice but to face whatever fate puts before us fully donned in our armor to shield us from the blows. That armor- the shields that keep us standing upright and fighting can only come from our deep, impenetrable love for our beautiful children. You must have the strength of 1000 armies in your love for Mary alone! And when you feel tired or fear, you must write. It will help give you more strength. You will get through. And a farm sounds like a beautiful place for all of you. xo

    • February 15, 2013 2:04 pm

      Thank you. You are right. Blogging is my means of venting, and I shouldn’t stay away from it. That doesn’t seem to help.

      I am excited about the move – finally! But the prospect of packing all these toys….. It will be worth it. Things will work out for the best – seems they always do.

      Thanks for the cyber hug. xoxo

  4. February 15, 2013 7:42 pm

    yes, hugs, that is a lot to have on your plate and I will be thinking of you all and especially Mary, hoping for the best. And the the farm! that sounds heavenly, it is my dream too, I come from a long line of farmers and always dreamed of having a little hobby farm making goat cheese with my kids, silly as that might sound, but for now we have a school district i wouldn’t dream of leaving, so I will truly take so much joy in watching that happen for you and your family! xoxo

    • February 15, 2013 7:51 pm

      Thanks. We’re pretty excited about the move too. Since the kids a all in private schools (Troy and Joyce are in catholic school and Mary goes to an “approved private school” for deaf children) we don’t have to give up our schools! The trick is finding a place we like that is still a reasonable commute for the kids, as I will continue driving them to their schools. It’s good to have things to look forward to. 🙂

  5. therocchronicles permalink
    February 16, 2013 11:22 pm

    I’m sorry things have been hard. Hoping the move goes smoothly and it is everything you want it to be.

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