My Family

My Family

Thursday, April 18, 2013

Can she or can't she?

So when you have a child with special needs or any child for that matter things are never black and white.  Ever.  It would be so nice if kids came with their own instruction books.  I notice the only instruction books are written by grownups.  Although I am sure they were children once, a good majority haven't had kids of their own.  Or there would be chapters titled "Why is there Jelly Toast behind my Toilet?"  or "What does it mean when my child runs around with a plunger on his head declaring that he is a toaster?"  True stories from my world.

But sometimes you just have to muddle through and hide your plungers.  So we do that.  We recently have been muddling through Cary's hearing.  We had done all sorts of tests and everything pointed to hearing loss.  So when we went for her ABR yesterday I fully expected to be told of loss.  It was a big enough deal that my husband took the day of of work and we were all braced for the worst.

So we get to the office and I am informed that my daughter must take a nap now.  Cary had other ideas.  She had no intention of sleeping whatsoever and promptly blew raspberries everywhere.  Then she worked on rolling.  She has done it once and is determined to do it again.  I told the nurse that I had been informed that she could be awake and quiet during the study.  The nurse did not appreciate my input on the matter.

So I decided we would get her down even if it killed us.  It almost did.  A determined little person against three grownups.  It took lots of back rubs, foot squeezing and my husband making sure that the stinking nurse stopped coming into the room every 20 minutes to see if she was asleep.  I wish I had gotten a picture, but I was afraid to wake her up.

So once she is out you could run a marching band through the room and Cary wouldn't budge.  We called the nurse back in and she hooked Cary up and started running tests.  At first everything seemed fine and was going OK.  But the tester wasn't pleased.  She kept looking at the results and running the tests again.  I was getting really upset.  I kept thinking what bad news this is going to be.

Then she was done.  And she had a smile on her face.  "Well, it looks like she is in pretty good shape. Her tests look pretty good."  What????  So I wanted to know what was going on.  The Dr. told me that when the original tests were done Cary was in the middle of ear infections.  She may have had them before we caught on that her ears were infected.  Which would muddle results.  Her hearing is pretty decent.  There may be a little loss and there is damage, but that is because of brain trauma.  We won't know until she gets older.  The doctor doesn't know why and says that Cary has yet to follow any "standard patterns."

By that they simply mean that Cary continues to defy the odds.  She was supposed to die early.  Everyone knew it.  She nearly did a couple of times.  But she lived.  Then she was supposed to be stuck in foster care limbo.  No one wanted the burden of that kind of child.  But now she has a home and family.  She was supposed to be unable to eat and swallow.  But she can and does.  I could write a book on everything Cary is not supposed to be able to do.  But she does it and continues to bust down preconceived notions and low expectations.

Cary is strong.  She is a survivor.  And she has people who love her, care for her, and push her to do new things.  She is feisty and knows that she has people in her corner.  So she continues to defy odds.

So can she hear?  The technical answer is yes.  She may have a loss, but until she gets older we can't be sure.  So we will continue to push and pull and defy the odds.  My daughter rocks it and loves to prove the world wrong.  That's the way it should be.

Tuesday, April 9, 2013

Just a normal week

No, I have not dropped off the face of the earth.  I did however, take a little bit of time away.  My son had spring break and except for Speech and  PT we had a really normal week.

I had decided that I was going to keep this week uncluttered as much as I could.  I wanted to just live the week like I didn't have medically needy kids.  That we just went and did things that everyone else did.  Just for a little while.

So we did.  We still saw Speech and PT, but that was only a little bit of what we did.  We had a such a good time.  And just for a minute, for a space in time I didn't think about blindness, doctor's appointments, shunts, and adaptive living skills.  I thought about picnics, walks, swings, and fluffy creatures.

WARNING:  Mom, if you are reading this you are not going to be happy about this next part.

See that grey bundle of trouble my son is holding?  His name is Thomas.   We went to Arvonia and picked him up this week.  He is a 4H project and a new "friend" for Penelope.  He is getting his "big boy" surgery today so he may not be as friendly anymore.  I am O.K. with that.

To see the look on my son's face made the long drive to the end of the earth. O.K.  Marvin has been cleaning poop, training Thomas, and feeding him.  I am not expecting that to last foreven, but so far so good.

We also went to Maymont.  Marvin climbed, ran, jumped, skipped, and wore us ragged.  Cary did this:

All day.  Through all of Maymont.  And she got a sunburn to boot.  But it was great.  It was nice to be normal and do normal things.

This week, we go back to our normal.  We have appointments, new battles to fight, and never ending stuff that special needs kids need.  But I am holding on to our week, our time together, and most of all the normalness that made it so magical.