My Family

My Family

Wednesday, April 29, 2015

It's not in how you fall it's in how you rise

This week has been tough for many of my mama friends.  I just got off the phone with one.  She's so far away from me but always in my heart.  I think often about these women.  They have been such a huge influence in my life.  They have taught me that it's not in how you fall it's in how you rise.

Having one child with special needs is a challenge.  But when we willingly chose to take on number two there were many who questioned my sanity.  Heck, I questioned it at times (alright a lot).  But looking at the face of our soon to be daughter I knew we had made the right choice.

That didn't mean it was easy.  For years I was "that person".  You know the one who knew how to get your kid to nap, eat right, do complex algebra while folding the laundry.  Ahem.

Cary Lynn threw all that right out the window within one week.  After my ego had been properly bruised I realized it was OK not to have all the answers.  I even figured out it was OK not to know all the questions.  Instead I learned.  I still learn.  I read, research, and dig.  Then I dig more.  I listen better and stop assuming that I know everything.  I admit that I am human and am going to mess up. And I have become OK with that.

I was also the person who would never do that.  You know.  The one you talk to in passing about your child's g-tube and they get this weird look like they would rather be transported to Mars and disintegrated on the spot.  "I can't imagine how you can do that?!?  I NEVER would."

Well guess what buttercup?  I wasn't going to either.  But I have.  And I do.  One day it just clicked that this is not the most awful thing that could ever happen and I would not turn into troll by doing it. I know change g-tubes, bolus feed, give enemas like a pro, can tell you super good tricks on how to clean out vomit quickly and still show up to church looking good, and can clean up a dreaded bed feed in about three minutes when necessary.  If it was your child you would learn.  Love is a powerful motivator.

We fall.  We are human.  We will keep falling.  But the important part is that we don't just lay down and die.  We rise.  We stand back up.  Sometimes it's hard to do because we have been trampled and bruised by life.  It hurts.  It takes courage to get back up again.  Lots of it.  Sometimes you need a hand and that's OK.  But the important thing is that you keep on standing.  You are stronger than what life throws at you.  So don't be afraid to rise and try again.  And again.  Because when you rise you show that you are stronger than your circumstances and that you will be the victor over them and not the victim of them.  And while you may never figure out how to do that complex algebra (sorry I stopped advising on that a long time ago) you will find something even better. You will find that you are not only ready to meet hard knocks but able to say with pride that yes you may fall but you also are going to rise again.

Wednesday, April 8, 2015

Fortune's Wheel

Once in awhile I dream this fantastic dream.  It's spring and I'm in the park with my kids.  We are on a grassy hill.  There is sunshine, trees, and butterflies.  I am sitting on a bench talking to an unknown person.  In my dream I know them.  As we talk I watch both kids play.  The part of the dream that takes my breath away is that there are no AFOs. No wheelchairs.  Cary Lynn runs strong and free. There has been no abuse.  Both of my children are healed, happy and whole.

Sometimes when I talk to this stranger I complain about how hard things are.  Then the person asks me, "Do you want your children well."  I grow silent and don't answer.

Then I wake up.  I wake up to doctors, therapies, wheelchairs, ptsd, and those horrible Afos.

The question is simple, but at the same time a loaded gun.  You would think that any sane parent would say "YES!!  I want them well!" But for me it just isn't a black and white question.  It's so many shades of grey.

First of all, I do wish they hadn't been abused, neglected, and suffered.  I get weary of fighting the world around me for services, going to doctors, and instead of medicines, sensory diets, standers, and medical paperwork that has taken over my craft area. I want my days to revolve around stories, cuddles, giggles, Barbies, and trucks.  I want to call my friends up and instead of discussing Cary Lynn's latest medicines and Marvin's latest therapy talk about what I watched on TV, or what I saw the neighbor doing (probably not, we live in the country and have so many trees that if the neighbors were doing something good, I'd never catch it).

But here is the tricky part.  If you spend your whole life yearning for what you don't have you miss what you do have.

If my children were "well" they would never be mine.  They entered into the system because they weren't cared for.  I would have no Marvin or Cary Lynn.  They would belong to another and that alone chokes me up because this house would be so empty and lonely without them.

If my children were "well" I wouldn't have gotten to know the strong community of women who stand by me.  These women are amazing and their kids are amazing too.  Our children have brought out the best in us.

In my life and travels I have talked with many adults with disabilities.  They inspire me.  Sometimes I get brave and ask the question.  About being "normal and well".  Guess what their answer is nine times out of ten?

No.  Yup you heard me.  So then I ask why?  And they look at me like I've grown two heads.  I get responses and this is a compilation of what is said.

"Yes, some days we do want to do what everyone else does.  It would make life easier.  But they learned that they had so much to offer.  That they could push boundaries, fight for equality, and most of all teach us that just because you are disabled doesn't mean that you you don't have things to offer or that the gifts you have are inferior.  That diversity is the spice of life.  And that we all matter. "

Plus, what dawned on me is if I also spend time wishing my kids well I send a silent message that what they are now isn't good enough.  While I firmly believe that we can work harder to be better people, I don't want my kids to feel like they don't measure up.  Because they do.

I say it often and I mean it.  My kids are amazing.  And they have so much to offer the world.  And they matter to the people around them.  And to me.  So even though I'll probably never call with good gossip about the neighbors I will enjoy the two precious lives that I have and celebrate who they are as is.