Thursday, April 4, 2013

singing through disappointment

Sprawled out on my lap right now is my two year old. I feel him breathe, hear the soft, steady snore, and sense that his drool is seeping through my denim onto my knee. His hair reminds me of a baby chick - fluffy and sticking up all over the place. Some of it glistens with toddler sweat. He has crashed after an exhausting session of therapy today.

Genetics called me back after lunch with the results we have been waiting on for about a month. Normal.  A sigh of relief, but when I hit "end" on my phone the tears come. I grip the kitchen counter with both hands, and I can't stop crying. But I do. There are goldfish crumbs and pickle juice to wipe up, mouths to clean and Play-doh to get out.

I used to be an educator. My husband is a counselor switching over to nursing.  We know about labels.  We know the pros and the cons, the promises and the pitfalls.  But the label of  "unknown" or "undiagnosed" is just as hard. There is no "undiagnosed child awareness day" or ribbon for me to stick on the back of my car. And I know that these things don't really do much. Yet I also know that without a label, in a few months, as we hit three years old, we may be left without options for services.

Underneath the sadness and frustration of today's news, or really lack thereof, hope still rests. Like a seed buried in the dirt, I find myself thinking he may grow out of this.  We have no picture of future limitations because we have no label. And though I fear hoping, I continue to do so because I have greater fear of the absence of hope.

Jesus, Jesus, how I trust Him!

How I’ve proved Him o’er and o’er;
Jesus, Jesus, precious Jesus!
Oh, for grace to trust Him more!


In the other room, my preschooler is calling out, "Look at my train!"   As I step over endless wooden tracks, I will place my sleeping child in his crib and try to convince the awake one of the value of rest.  I will sing the song that has been my anthem - through miscarriage, through NICU stays, through heartbreak, through all of the unknowns, not as a coping mechanism but because I believe it to be true.



11 comments:

  1. oh wow. i feel the desperation in your tears. the unknown is a brutal enemy sometimes, isn't it?
    but your song.
    your heart to trust him and keep hope alive is so beautiful. i can't help but wonder if any of us would ever really learn to trust without the unknown.
    praying with you, friend. such a hard thing.

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  2. I love that song, and I love knowing you carry it in your heart. I will be praying for you guys.

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  3. I'm praying for you. I know the frustration of undiagnosed, and although my 3 year old has outgrown his symptoms, I remember how hard it was. I am so encouraged by you and your faith ministers to me. Keep trusting! your son is so precious!

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    1. Thank you! The "conversations" we have had at times about mysterious children have helped encourage me. Grateful for you.

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  4. Praying for you and your sweet boy as you continue to trust in Him for direction and answers.

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  5. Might I ask what "symptoms" have an undiagnosed status? As a mom of a boy who falls in the "autism spectrum", but is not autistic and has a diagnosis that the schools don't recognize as an actual diagnosis I know how frustrating it can be, the labels and all.

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  6. Also, I am not sure what state you are in, but here in Washington you can get a generalized "developmental delay" diagnosis and the school system can use that until the age of 9. Which means they can start the special needs pre-school at 3 and can qualify for an IEP, speech, OT etc depending on the child and their specific needs.

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    1. He is only two, so some things it is too early/soon to diagnose yet. He is low-tone, not really verbal (though he is starting to label things with initial consonant sounds), struggles with fine and gross motor, and then just some random other factors/symptoms thrown in from time to time. Certain things set him off, especially if we are out to eat. He may or may not qualify for services when he turns three - we will find out this fall. I don't know as much as I should about the preschool level. I taught fourth grade so I know about elementary things, and I know enough about his legal rights, but early childhood is new to me.

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  7. Have you looked into Dyspaxia? That is what my oldest son has. It is not as well known as some of the other big name "issues", but it is actually fairly common among boys.

    http://www.dyspraxiausa.org/symptoms/dyspraxia-facts/

    can give you more insight into if some of his stuff falls into the dyspraxia category.

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  8. Some of my sons early signs were difficulty with speech. He didn't babble as a baby. He chewed on everything like a goat, he didn't know how to play with toys. He would rip all things paper up due to lack of knowing how to play. He had coordination issues, low muscle tone and fatigued easily. Also he had a distaste for potatoes (which is a very dyspraxic thing). He never liked music or being sung to and lots of other things. Motor planning is a big issue. The hard part was that somedays he could do something really well and another day he couldn't. When he got to kindergarten school was excrutiating for him. It has gotten better since, but there are still things that are very hard for him. He is 12 now and just this year has been able to go up and down stairs without either sitting and scooting down them or else holding onto me or a rail. Visual perception is off for many dyspraxic people because their eyes don't necessarily process the information the same or correctly or some such thing. Sorry to be so long winded. I hope you get answers soon.

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    1. Thanks. I have heard of dyspraxia, but I have not investigated it. I am going to do that today.

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