Thursday, March 13, 2014

Today is a New Day

I did not mean to sound so whiny and defeated yesterday.  I can add blogging to the list of things I should not do when sleep deprived.  That list also includes driving, filling out government forms, kitchenering sock toes, and trying to hold a coherent conversation.

I have a special needs child.

That takes me by surprise most days.  I forget she is "disabled."  I forget she has a "birth defect."  I know when I was pregnant I thought I was growing a broken baby.  But now that I know her I don't feel as if she is "defective."

She is my baby.

But the reality is she is a special needs child.  Which means she has special needs.

I thought I understood what that meant.

But I didn't.

It wasn't my fault.  It was just beyond the realm of my experience.  And that isn't good, it isn't bad.  It just is how it was.  I thought that a special needs child just meant they needed different things than a "typical" child, so you gave them what they needed and it was all good.  Meaty was especially sensitive to stimulus as a baby.  He was easily overstimulated, so our house was very quiet, very relaxed, very calm for him.  We avoided situations that would over whelm him.  We adapted our parenting to his specific needs.  I thought this was also how you approached having a special needs child.

I wasn't wrong, but I wasn't right.

Special needs doesn't just mean they have different needs.  They have all the usual needs AND special needs on top of that.  It is having a child amplified by a factor of a billion.  It is more of everything.  More work, more exhaustion, more specialists, more complications.  There is more good stuff too.  More joy, the victories are sweeter because they are even more hard won.  More smiles.  More love.  More support.  I thought I understood what community meant.  I had no idea how surrounded by love my life could be.

It is an adjustment in thinking.

It is an adjustment in the reality of our lives.

We are carving out a new normal.

One that I hope to approach with laughter and love and my usual sarcastic wit.

I forgot to include my sparkly sarcastic wit yesterday.


Its a bummer.

Today was much more productive.

Every body got a hair cut this morning.  Except me.  Cause I can't cut my own hair.  I haven't had a hair cut since June 2012.  True story.  They all look good.  Except Bird.  She wouldn't hold her head straight.  Or still.  So now she has a funky choppy layered effect going on in the back that needs some repair.

*le sigh*

I did manage to square up another set of squares this afternoon.

*takes a deep bow*

*pauses to absorb the wave of noise from the cheering crowd*

Only one set of squares left to square up and then I can start sewing the tiny tiny squares into beautiful big quilt squares.

I also sat down and wove in the last few ends of my shawl and my sweater.

*takes another bow*

Let me show you some crummy pictures of my beautiful shawl.

I would give you all the vital details (pattern, yarn, needles size, mods) but I don't remember any.  It is some kind of mohair.  It is purple and green.  It is gorgeous.  And I love it.

It turns out silk and baby alpaca isn't the only kind of shawl Squishy approves of.

Any sort of hand knit pretty will do.

I know how you feel baby girl.

I know how you feel.


Candyce said...

You have such a beautiful way of expressing yourself. I love reading your blog. And don't apologize for yesterday as thats what we are here for. To listen.

Tam said...

What's the point of having a blog if you can't whine sometimes? You're not offending me. The next time you feel like whining about the challenges of a special needs child, get a box of tissues and watch this. I don't even have a child with this PARTICULAR type of special needs (as you said they all have special needs, they are all individuals) but this warmed me all the way to my toes. uttp://

Tam said...

Not sure what that was. Maybe this

kathy b said...

I love to read your honest amazing thoughts. I wish you forty full winks of sleep tonight ! I love your shawl and your baby even more

Anonymous said...
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Anonymous said...

Don't you worry. Nobody here is judging you. We all experience bad days and we are allowed to express our anger, depression, misery and fatigue. I understand why you felt the need to vent, so don't apologize. We may not completely understand how you feel right now, but we will try to. We know you are trying your best and we know how lucky she is to have you as a mom. Keep your head up. We're all here to listen. :)

Patricia Briggs @ Source Brokerage, Inc.