Monday, March 2, 2015

drowning.

i'm swimming.
most days, against the current.  and the current is strong.  and it threatens to pull me back with it.

 

but, I keep fighting.  kicking.  going places.  then, a day comes along.  and it threatens to not just drag me backwards, but to pull me under.  and the water from above just keeps coming.  washing over me.  leaving me breathless.


there are days that start with the continuation of processing the neuro-psych evaluation we got back about our big.  the words the doctor spoke, both gently, and encouraging, still left us unsure of how to best move forward in schooling her.  and, it looks like home is the way to go.


and a little, who's IEP is still not yet done.  and we should get services in place in time for the school year to end, and nothing to have actually ever been implemented.  all because we fought for what was best for our daughter.  and today she's sick.  and having seizures.  and incessantly asking to watch signing time. and starting to walk up the steps by herself.  and climbing onto the couch to unfold the laundry as I fold it.


and a tiny who only turns his head to the left.  so much so that he can't turn his head to the right, and the back of his head is getting a flat spot.  so we schedule an appointment for p.t.  and a follow up renal ultrasound to see if he outgrew his hydronephrosis.  and the tucking away of the anxieties about him not yet meeting any milestones, and regularly crossing his eyes.  and longing.  wanting something to feel easy. 

as the waters rush over, I hear the voices from above.  the ones that asked me while I was pregnant what I was going to do with a healthy kid, a typical kid, a normal kid, this time.  and wanting to grab them and pull them down with me.  to let them see that nothing feels normal from down here.  that once you have been here, you lay in bed at night evaluating every thing your child is, or isn't doing.


when you have been down here, you end up needing a counselor to walk you through your anxieties.  they are big, and they feel real, even when everyone else around you is telling you that everything is fine.  it doesn't feel fine. it feels hard.  and overwhelming.  and, a little bit like things aren't allowed to be easy.

from the outside,  it all appears normal though.  most of the people on the sideline just see someone swimming.  and some of them cheer loudly.  the cheering is often what keeps me from completely being swept away.  it lets me know I can do another lap.  every now and then, I even have someone who tags in for me for a while.  who takes a few laps, and lets me sit on the side, huddled under a towel, catching my breath.




tonight, i'm tired of smiling through things.  i'm tired of specialist, and therapies, and meetings, and evaluations.  i'm tired of hospital stays, and learning new diagnoses, and the fears that have taken up residence in my head.  so i'm going to choose to share those things.  i'm going to choose to be real. because today, tonight, it feels like i'm drowning.
tomorrow morning, i'll get up, crank up some music, and sing louder than the fears in my head. 

3 comments:

  1. I'm so sorry you're drowning. I'm praying for you right now to feel His presence in the morning and even tonight when you're up with your little man. It won't make it any easier, as you know like all moms of young children do, but hopefully it will help you to feel not so alone.

    Weeping will last for the evening, and joy comes with the morning.... My hope and prayer for you is that your eyes and heart will be drawn to the joys of your kiddos in the morning.

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  2. I am not sure what results you got back but let me share with you. My daughter was diagnosed with NF1 when she was 5. Prior to that moment we struggled with developmental delays. She received services through the school starting when she was three. One of her evaluations put her at borderline MR. She spend some of her elementary years in a self-contained classroom. She worked her way out of that class and used resource classes the rest of her school years. She did terrible on the SAT test but got into a local community college. After two years at the community college she started at the university of her choice last semester. She got a 3.0 last semester and worked very hard for those grades. I have watched her cry, fight, struggle and achieve her goals. She wants to become a missionary and I see no reason why she won't accomplish that goal.

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