Tuesday, January 24, 2012

Up and Down Syndrome

Being the Mom of a kid with Down syndrome has so many facets.  Ups and downs daily.  Sometimes hourly.  Right now I am focused on these teenage years.

Let's take a look at yesterday, for example.  I had to wake her up at 9:30 (quite a change from her early years!) She has a certain routine and absolutely can not continue with her day if it doesn't go just right.  "You need to refill my pills please" she says.  I tell her I will in a minute, why not get dressed first while I finish up?  Nope, not gonna happen.  Impossible.  So she stands there staring at me, following me around, until I get her pill case refilled.  Then she can do her bathroom stuff and get dressed.

She comes down to eat breakfast, which is the first "food fight" of the day. No, she didn't throw it at me.  She wanted to eat her leftover pizza.  But she wanted to eat all 3 pieces left and we had to have a discussion about not eating too much.  Again.  Every meal.  Lea, like many people with DS, doesn't have the thing in her tummy that tells her brain she is full.  I don't know if there is a medical term for this, but she will not feel full until her stomach is so full that it hurts.  I told her to eat 2 pieces, so she picked the huge piece and a small one.  More discussion.  I told her to pick either the big one or the 2 small ones.  2 small ones it is.

On to her counseling appointment.  She has been in therapy for a few months since her cousin was killed.  She loves these appointments and they have helped tremendously with her nightmares and ability to cope.  The therapist asked me to be sure we don't talk about the person who killed Megan at all...no mention of his name (he was a loved one...was.)  No mention of the upcoming trial, don't even tell her we are going.  The way her brain works, it is just not possible for her to process any more information about this man.  This tragedy has caused our entire family incredible pain, but for Lea, it's unbearable.

A few errands: getting gas.  While I am pumping gas, she puts in one of our Taylor Swift cd's and sings so loudly I can hear her from outside the car.  And dances in her seat so that she is shaking the car.  She doesn't care who is watching!   Next stop is Target to return a Webkinz we got with no tag.  As we are looking for a new one, she gets distracted by the Barbie aisle.  I have to drag her away.  She has loved Barbies since she was about 3.  She finds a Victorious Barbie (from a TV show) that sings the theme song.  Her face lights up, she sings along LOUDLY and dances in the aisle, again, without regard for anyone who might see her.  I wish I had some of that!  Even on a dance floor at a wedding, I am self-conscious!  And I am supposed to be dancing!

On the way home, we talk about Lainie and how she always has sleepovers.  "I need a sleepover, Mommy."  We talk about how sometimes a sleepover sounds like a good idea, but when she gets tired, sometimes it is hard to be out of her routine.  And not in her own room, all alone, with no one's breathing to bug her (yes, this happens).  Truth is she just doesn't have many friends.  There are a lot of people who would consider her their friend, for sure, but not sleepover-type friends.  Many of the kids she hangs out with are younger, because she really is younger cognitively than 17.  Other 17 year old girls wouldn't be caught dead playing Barbie's.  She used to look forward to sleepovers with Grandma Karen, but Grandma and Granddad live with us now.  So she gets to spend lots of great time with them, but sleepovers don't really work in your own house!  On the up side, she was just asked tonight to sleep over at her "friends'" house.  I put "friend" in quotations because Claudine is close to my age!  She has a sister out of state with DS and fell in love with Lea at first sight.  So even if she isn't a teenage girl, Lea has a blast over there and Claudine and her family treat Lea like a princess!  Her face lit up tonight as Claudine was leaving.  "See you Friday!!!!!!!!!!!!!" she said.  Last time she slept good and it all went well.  Before that, she kept Claudine and her son Dawson up almost all night!

She also has had a great bond with our friend Denise.  They hit it off right off the bat.  Denise has even had Lea come over to hang out.  Lea doesn't think of Denise as someone's Grandma.  To Lea, she is just a friend!  And to Lea, friends can come in all shapes and sizes and ages.  You don't have to be 17 to be her BFF.

So we got home and had lunch and then she read her Wimpy Kid book to me.  She likes to read her favorite books over and over.  She also will look at photos until the cows come home.  Honestly, I get so bored sitting hearing the same books and looking at the same photos over and over.  My Mom, Grandma Karen, will do this with Lea for sooooo long.  I need some of that patience!

We went to her riding therapy.  This is often a crap shoot.  She usually does pretty well, but sometimes she gets freaked out and cries.  While Miss Stacy got the horse ready, Lea straightened up the arena.  Someone had been using cones and poles while riding.  Lea could easily ride around this stuff, it isn't in the way of where she rides.  But she can not leave it there.  She drags all the stuff over to the side because it just doesn't go there.  She got her usual horse, Mike, whom she loves.  He is slow and listens to her very well.  She walked him around, talking to him as usual.  I can't always hear what she tells him, but I always hear her praising him.  "That's good, Baby!  Good job" in a high pitched voice.  She walked, then trotted while posting, all while building up her core muscles.  She then did lots of cantering.  At one point, her hand was in the air as she was cracking up and saying "WEEEEEEEEE!"  My heart fills with pride and joy watching her do this.

She talks about dinner on the way home.  Her first question every morning is "what's for dinner?"  Last night was a Trader Joe's Chinese food meal that we had a sample of.  She was really looking forward to that one.  We again had a food discussion because she wanted to eat more than necessary.  We have had the same discussion 2 other times today, plus for the last 15 years.  Every day, every meal.  Every snack.  *sigh*

She cleans up after dinner, one of her jobs around the house.  She puts the dishes in the dishwasher and doesn't want any help.  She likes to put them in a certain way.  She will, however, accept help with the hand washables.  She will get ready for bed as soon as humanly possible after dinner.  Sometimes she calls her jammies her "lounge clothes."  But we all know they are jammies!  She gets her water, her DVD player and her popcorn.  I make homemade popcorn and she will get her bowl ready and next to her DVD player an hour early.  She will watch her episodes of favorite TV shows that she has seen at least 50 times each.  She has the lines memorized, yet still cracks up soooo loudly at the funny parts!

Bedtime, and another routine that can not be messed up begins.  Getting her bed just right with certain pillows and blankets in certain spots.  Medicine, teeth, read a book.  If I don't close her door all the way, she will get up and slam it saying "all the way!"

This is just one day, but most days are similar.  That is how Lea needs it to be.  There are many things about raising a kid with DS that are hard, tedious even, and that make me weary.  But the ups far outweigh the downs!  That losing-all-control laugh gets us all going!  And she is the sweetest, most sensitive soul around.  She is always the first to give out hugs.  Her challenges can be hard to work around, but I wouldn't change her for the world.

Wednesday, January 11, 2012

Danny Cox Day

Many of you who are my Facebook friends know of our family's love of Danny Cox.  Especially Lea!  Danny works for Kensington Community Church, something in arts and music.  I don't know his official title.  But I know he has a lot to do with planning the services that we love so much.  He also has a CD called In All Things that is one of our favorites Of All Time.

But let me set the record straight: I do not like Christian music.  Sure, in church, wrapped up in the moment.  A good rockin' version of Mighty To Save can bring tears to my eyes.  But when I try to listen to the Christian radio station or a CD, I don't know what happens.  My thoughts wander, instead of focusing on the words I find myself thinking, "this sounds second rate."  So I flip on some REAL music.

But a little while back, Kensington was promoting a new CD released by Danny Cox, all original music.  We had heard him and knew he was good, but to be honest, my intention with buying the CD was to be supportive of a fellow KCC member.  As I listened to it, something strange happened.  I could feel God around me, I could feel His presence.  We ended up listening to it in the car quite a bit and the kids liked it, too.  After some time, Lea started requesting it when we were driving.  She loves to sing and soon had learned most of his words and was able to sing along.  Loudly.

One thing Lea never realized is that Danny does go to and work at our church!  One day when I picked her up from her homeschool classes at our Troy campus, this was our conversation:  Me: "Lea, guess who I just saw!!!!"  Lea: "Who?"  Me: "Danny Cox!!!"  Lea: (said like I am a complete lying fool) "Mommy.  Come on."  I had to try to explain that he works there, and while he has a great CD, he isn't really a big worldwide star.

Now for the stalker part of the story.  I attended KCC's women's retreat with my amazing friend Susan.  I was totally freaked out when Danny himself walked out to perform for us all weekend!  I, of course, was singing along as I, of course, know all the lyrics.  The next day, I decided I would just die if I didn't say HI and get a picture of him for Lea.  (And maybe for me, so what?)  So I went up and told him about Lea and that she loves him as an artist and thinks he is a big, huge star.  I asked if I could get a picture with him and Susan took it for us.  Danny said he would love to meet Lea sometime.  OMG.  That would be sooooo great!   (I didn't say that, though.  I played it cool, said "Oh, sure.  That sounds good.  Whatevah.")  Then I proceeded to follow him into the hallway and discuss Christian music.  Which, as I already explained, I don't like.  It was interesting that he said he didn't like much of it either!  I was hoping to see him in our eating area for a meal where I planned to casually sit at his table, but he never showed.

So I showed Lea the picture and told her Danny said he would love to meet her.  She was so excited!  But life goes on and we never ran into him at our campus of KCC.

Jump forward a few months.  Our family had experienced the horrible tragedy of my niece Megan's death.  The circumstances surrounding her untimely death are too horrible to share here, although many of you know the story.  We all had and continue to have a very hard time processing this.  Lea especially.  Again, without lots of details, what I can share is that she has horrible nightmares and is very scared that this could happen to her.  She barely played Barbies anymore and never wanted to be alone.  She started following me to the laundry room, the bathroom, my closet.  She started coming with me on every errand, even when she didn't have to.  She was truly so sad.  I wanted to do anything I could to bring her some happiness.  One day as we were driving and she was having a bad/sad moment, we were listening to Danny's CD.  I remembered (or God reminded me!) of our conversation at the retreat.  I thought, "Oh yes, I've got it!"  So I asked her if she would like to meet any rock stars to make her happy!  "Ooooo, how about Billy Joel!"  Crap, that didn't go as planned.  I explained that I didn't have any way to contact Billy Joel, but I could get a hold of Danny Cox! "Oh yeah!" she said excitedly!

So I began trying to contact Danny.  I started off my email with something like, "Yeah, remember me?  The stalker from the retreat?  My daughter wants to meet you!"  He did remember, and he was so gracious.  He said we could meet for sure!  Time got away again and we never set up a date.  Lea's sadness continued so I did what any loving mother would do and emailed him again!  This time we set it up.  We were going to meet at KCC at his office for about an hour.

Lea prepared in advance by making some crafts for Danny: a painting with his initials on it and a melty bead creation (you know, the kind you run a hot iron over to make it stick to itself?)  She also prepared some interview questions and poems.  She told me "He isn't just a rock star, Mommy.  He is a wisdom guy."  She wanted to talk to him about Megan.  She got all dressed up and got her little pink guitar ready to go.  But she told me, "I am not going to be a crazy fan."  We waited in the lobby:

We eventually found him after some confusion and hung out in his office.  Lea gave him her gifts which he was very fond of.  She started off with the interview questions.  She sat in rapt attention listening to his answers.

Then she read him a poem she wrote about him.  It talks about how he is a star and her light.  I thought I would burst into tears!  But then she read another poem about vampires and blood, so the tears went away.  I didn't even know she ever wrote a poem about vampires.  But it wasn't the good kind like Edward.  She hasn't even seen Twilight!  Anyway, she got to play his guitar:

Then he signed hers!  She was so excited.

Then came the best part.  Our own private concert!  Lainie and I took pictures and videos so we could remember this forever!  Lea requested her favorite song, In All Things.  You can see the joy on her face as she looks at her guitar with his signature at the 2 minute mark!  (Danny later told me he was touched when she started singing along.)  The second song he did for us was one he chose, Father Of Lights.  This was a God moment for me without a doubt.  That was one of the songs that I listened to every single time I went to and from the hospital to see Megs.  I played it over and over again, several times in a row.  "We know our hearts can sometimes feel doubt.  We lose our faith when your face fades out.  Come to us now, Lord, show us your face, 'cause your shine heals all that aches."  I would sing so loudly, alone in my car, but always, ALWAYS teared up thinking about how His shine heals all that aches.  So to hear this song in person made this a Danny Cox day for me as well!  (Maybe I really am a stalker!)


So that was Lea's special day!  She talked about it a lot.  This made her so very happy and I am forever grateful to Danny for allowing us this time with him.  She still has sadness and confusion over Megan's death.  But she also has the memory of this day, one of the most special of her life!!