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!

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.

Megan

May 9, 2013

I have written and rewritten this post a few times.  I can't get it right.  You see, it's about my niece, Megan.  She passed away July 27, 2011, but we really lost her on this very date, 2 years ago.  The details are too harsh, too tragic, to write about.  I don't want to focus on how she died, why she died.  I don't want to give the man that took her from us any mention.  I want to focus her.

I think I can describe her using all S words.  Sweet, spunky, smart, sassy, spoiled.  And might I add stunning?

We enjoyed her so much during those little kid years.  She enjoyed us a little less...after all, Granddad DID feed her a bad bologna sandwich.  She grew up to be a vegetarian!  She was always smart and funny.  She had so many friends!  The outpouring of love during her almost 3 month long coma was staggering.  It seems everyone loved our Meggie!

She grew away from us a bit during the high school years.  But she came back.  We were lucky to attend her high school graduation.  We began to see her again at family parties.  She always loved her niece and nephews and her cousins, my Girls.  She had plenty of patience with them all.  The last time we saw her alive and well was a few weeks before this date, on Easter.  She sat with her little niece and nephews and helped them open presents.  I am thankful for that day.

She is sorely missed, but I have many memories to hang on to.  I am so blessed to have had her in my life for 20 years!

Who I Am

March 20, 2013

Tomorrow is World Down Syndrome Day!  Because it's 3/21 and DS comes from having 3 of the 21st chromosome.  It's the perfect day of the year to bring awareness, don't you think?

The International Down Syndrome Coalition has a campaign going...a Blog Fest, if you will.  Calling all bloggers!  Tell us about you and Down syndrome!

Me and Lea, at a castle in Germany!

I've been thinking about it for a week.  I could write a book (or 2) on the topic!  So I decided to narrow it down and focus on Who I Am Now.  Because it's different than who I was when Lea was born, 18 years ago.  Or who I was when she was in Early Intervention, starting public school, starting homeschooling, joining Special Olympics teams.

Who I was on Oct. 15, 1994

Who I Was comes into play an awful lot, though!  My inner Control Freak is having a hard time.  (Who am I kidding?  My Control Freak was never "inner."  She is always right on the outside!)  Since the minute Lea was born, my Control Freak took over.  Let's understand something here.  Being a Control Freak has negative connotations, but it's not all bad!  It meant I got her the best doctors from the get-go!  Pediatricians, geneticist, cardiologist, ophthalmologist, endocrinologist, and a very scary (but turned out good!) visit to a hematologist/oncologist.  It meant I started fighting for her rights as soon as I realized I needed to...at 3 weeks old, when the local school district was dragging their feet on getting her started with her therapies.  That Control Freak was with me the whole way through her public school years, enjoying the many good things that came of it, but Freaking Out at the bad.  And finally, that Control Freak convinced me I could do a better job at home!  (Oh, and a big shout out to God, who gave me that idea!  Woo hoo, thanks, God!)

So Lea graduated from our little homeschool last summer.  Look at her now!

Daddy, Lainie, Lea and Mommy

Isn't that fabulous?  She is done, she is 18!  Wait....(insert that record scratching noise here)....done?  My Control Freak doesn't like that!  For the past 18 years, I was in charge of her EVERYTHING.  It's ok...take a deep breath, I tell my Control Freak.  All of that Control Freakishness was done for the good of the kids.  You still need to do what's best for her!  What's best for her is...letting go.  WHAT?  Yes, you know it's true.  I DO?  Yes.  *sigh* Yeah, you're right.

First step was summer camp.  Away from home for a week!  It was a camp for people with special needs.  They have an excellent staff!  Control Freak: Oh yeah?  Well, she can't eat gluten and milk products.  They will never handle that!  (Which they did, with perfection!)  What if they....What if they don't....Stop it!  She will be fine.  She will not just be fine, she will thrive!  Look here, Control Freak!!

Enjoying the sprinkler at Skyline Camp

See?  Not only did they take great care of her, but they took tons of pictures so me and my Control Freak could see her every day!

But wait, what's this?  She is an official ADULT now?  We have a great program through our public schools (gasp!) that can help her learn to be independent.  (Starting to hyperventilate)  It's ok...they give us parents a lot of information and a say in what she does there.  She is having a terrific time and learning tons!  (Feeling a little calmer.)

But wait, what's this?  As an adult, she is entitled to some disability services from the government.  Oh boy, here we go.  (Can you say paperwork?)  In comes an agency to help her get Medicaid, Social Security and  respite services.  (Because we BOTH need a break from each other!)  But this agency does not represent us.  They represent HER.  They work in her best interest.  But, says Control Freak, what about me?  Don't I get a say in this?  Yes, your opinion matters.  But bottom line is they are here to protect and help Lea.  Lea...who is learning to make her own decisions.  (Her OWN decisions?  ACK!!!)  Yes, Mama, she can do it!  Look who she picked as her respite caregiver!

Claudine...one of the sweetest women on earth!  Who cares about Lea just as much as I do!

Oh, OK.  Hmmm, so Lea gets to have sleepovers, go to fun places and have a BFF?  And I don't have to worry or control anything?  Yep.  This is getting good.

So then Who I Am is a recovering Control Freak?  No.  I still have 15 year old Lainie to worry about!

LOL, it's just a prop cigarette!  But it highlights the dangers of giving up my Control Freak :)

Who I Am Now is the mother of an adult and an almost-adult.  I can see the benefits of being involved in every aspect of their lives.  I can also see that my little birdies need to spread their wings and fly!  I certainly made some mistakes (thanks to you, Control Freak.)  But being there for them along the way has helped me give them the tools they need to be free.  Who I Am Now is a Mama watching her babies grow up.  And loving it.

Parisians :)

What The R Word Means To Me

March 6, 2013

Today is the annual day of awareness about the R word.  "Spread the word to end the word," they say.

The R word...retarded, retard.  I can barely write it.  It hurts!  Let me tell you why.

Here is my beautiful daughter, Lea.

In Paris, Feb. 2013

Lea has Down syndrome.  Down syndrome comes with many challenges, one of which is her cognitive abilities.  Yes, Lea is, medically speaking, retarded.  Actually, even medically speaking, this is no longer the correct term.  It used to just mean slow.  But over the years, people have misused the term and twisted it into something ugly.

Before you argue about this, let me assure you I have heard all of the excuses, the justifications.  "I don't mean YOUR daughter!"  "I would NEVER call Lea that!"  "I don't mean a person, I just mean something is dumb."  "It's not even offensive."  "I won't say it in front of you!"

You are not getting the point.  Of course you won't call Lea the R word!  But using it in any form is hurtful to ME.  Whether or not you are calling my daughter the R word, your use of it is perpetuating a very bad stereotype of her.  You are right about one thing...it is not offensive to Lea.  That is because Lea is forgiving. Lea is kind.  Lea would not be hurt by that word.  But I am.  I AM.  Isn't THAT enough for you to stop saying it?  I may be standing behind you in line at the grocery store.  I may be sitting near you in a restaurant. I may be shopping in your store.  I am not asking you to stop saying the word around me.  I am asking you to stop saying the word.  Period.

You never know who is listening.