Tuesday, October 15, 2013

Baby Lea, October 15, 1994

I wrote this post on Lea's 16th birthday, 3 years ago now!  I have shared it every year since on her birthday.  It features my favorite picture of us, because this was the exact  moment I knew everything was going to be alright.  I love you Lea!  Happy 19th birthday!!

16 years ago today, it happened.  A bit earlier than I thought, by 3 weeks.  But finally the baby was here.  It's a girl! they said.  We spent about 2 hours with her before they told me to get a few hours of sleep.  They whisked my baby away.
In the morning, I was awakened by our new pediatrician.  She told me Lea had a "dusky spell" while they fed her.  She said to call my husband so we could discuss the situation.  Brad arrived quickly.  The doctor then told us she suspected Down syndrome.  She said "heart problem."  She said "mentally retarded."  She said we need a geneticist to know for sure.  We need a cardiologist.  Then she did the best thing she could have done.  She sat there quietly while we cried.  When we were done, she asked if we had any questions.  She explained Down syndrome.  She said Lea would lead a great life with some therapy.  She said we were blessed. 
Still, I was grieving the loss of the baby I thought I was having!  I was grieving the loss of PERFECTION.
All of Lea's problems were swirling around my head.  I did not call one person on my list to tell them she was born.  I could not say the words "Down syndrome" without sobbing uncontrollably.  They moved Lea to the special care nursery.  They wouldn't let us in for hours as she was having testing done.
Finally, the time came.  We were gowned up and washed down.  My fear of everything about Down syndrome and heart problems had me a bundle of nerves.  Then, I saw her.  She had an IV in her head.  She was the sweetest, most precious thing I could imagine!  I held her for the first time since all of the bad news.  And then I REALLY saw her.  And guess what??  Perfection!  The nurse took this picture at the moment I realized she WAS perfect.  God gave her to us for a reason and she would be ok!  We were a family now, and we would all be ok.

Happy Sweet Sixteen to our perfect blessing, Lea Renee!

Wednesday, October 9, 2013

Slipping Away

October 7, 2013

If you had asked me about a year ago to describe my Dad in one word, I would have said "capable."  He could fix anything.  He could tell me how to get anywhere, like my own personal GPS.  He could cook some good stuff, including his Southern Mama's biscuits and gravy and peanut butter fudge.  He could help me with my faith journey when I had questions.  He could help me through the challenges that come with having a daughter with special needs.  I could go on all day about all he could do!

We saw some slight changes in his abilities, but only now and then.  Nothing to alarm us.

Then we had the great opportunity to go to Germany for a few months because of Brad's work.  We Skyped and he seemed fine!  My Mom, being with him every day, probably didn't notice the changes.

But when the girls and I returned from Germany only 3 months later, we found a different man than the one we left.  The first thing he said when he was helping us unload our suitcases was "You won't believe how bad our memories are now!"  That was an understatement.  Except my Mom was fine.

I am not just talking about hearing the same stories a few times.  Or him asking me the same question over and over.  I am talking about the handiest man I have ever known not being able to find the electrical panel.  The one he rewired and even got a huge sparking shock working on before!  I am talking about him ripping the invisible fence wire right out of the ground, the one he helped Brad install.  "I thought it was a weed, I'm sorry" he said.  MY Dad would have known that the bright yellow wire in the ground was not a weed, even if he hadn't installed it.  MY Dad would never in a million years take the toilet apart to fix a leak and then leave it unfinished.  MY Dad wouldn't have even the remotest possibility of forgetting how to turn on the DVD player.  For Pete's sake, when I was growing up, his stereo system had 12 components and a thousand buttons on it.

MY Dad is slipping away.  Vascular dementia is the diagnosis.  There is no cure.  The blood vessels in his brain haven't worked right for awhile now, although no one knew.  This has caused irreparable damage to his brain.

Because my parents live with us, we have to watch him slip away daily.  Some days are better than others, but already I would never describe him as "capable."  It's hard for all of us.  Instead of asking him to help when something isn't working right, we have to hide whatever is broken because he will only make it worse, unintentionally.  I'm not sure I can describe the sadness this brings to us.  My Mom has lost a partner and gained a child she has to drive around and keep an eye on all the time.  My kids have lost the Granddad who put the batteries in all of their toys and electronics.  My husband has lost a good friend, a mentor.  And I have lost my capable Dad, whom I have counted on for 44 years to take care of any problem I have.

It's not all bad, really!  In some ways, he is MORE present than before.  He didn't often come to Lea's sports practices.  Always the games, but not the practices.  Now he enjoys that.  He always loved his little Great Grands, but they were more Grandma's thing.  Now he sits and laughs and doesn't mind playing with them.  He tells me he loves me.  A lot.  This is pretty new.  I always knew he loved me growing up and beyond.  It just wasn't something we said out loud to each other.  I don't know why, I think it wasn't really his style.  But it is now!  He often grabs me out of the blue, a huge smile on his face, and says "I love you!"  Or "Ah, you are so great!" when I am doing something that is not even that great.  He really tries to be productive and helpful and offers to set the table and clean up, things that NEVER occurred in all my years!

I am hanging onto these good moments.  These good changes in his brain.  There are many, many things to be upset about.  Things we have lost forever.  And research all shows this will only get worse.  But if I document these little bits of new goodness in him, it will make me feel better about what is happening.

A huge part of an amazing man is gone, with more slipping away all the time.  But God is blessing us with parts of my Dad's personality that we never got to see before.  I am looking forward to seeing what else He will show us.