Monday, October 15, 2012

Baby Lea, October 15, 1994

I wrote this post 2 years ago, on Lea's Sweet Sixteen birthday!  Now she is 18!  I am so proud of all that she has accomplished!  She is a Special Olympian, an expert horsewoman, a graduate, a young woman.  Here is the story of her birth.

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!

Tuesday, September 18, 2012

Homeschooling's Deep Dark Secret

No one ever told me, before we started homeschooling, about the dark side of it.  "One on one education" they said.  "Learn at their own pace" they said.  But why didn't anyone ever tell me THIS truth?

"You will love this time spent with your children so much that it will hurt when they move on."

When we started our homeschooling journey in Feb. '07, it was just me and Lea.  She was 13.  We laid on my bed reading "Little House" books.  We went to the library.  We did all kinds of work in workbooks and such.  Then Lainie came home after finishing 4th grade.  The 3 of us would sit cuddled up on the couch in our jammies with blankets on, as I read aloud from some amazing books.  They took classes all over the place with other homeschoolers.  They made some great friends (it's true!  Homeschoolers socialize!)

But now it's all changing.  Lea is almost 18.  She graduated from homeschooling.  She graduated from ME.

She just started her post-high school program yesterday.  I dropped her off in a classroom full of people with special needs, aged 17 to 26.  She will learn life skills, job skills, about money, about independence.  She walked right into that brand new classroom like she owned the place!  She didn't even say goodbye.  Meanwhile I am hanging outside the doorway talking to the teacher.  Trying to come up with some more questions so I can hang out a little longer.  I walked away with tears in my eyes.

Yes, Lea is ready for this step.  We certainly need a break from each other, too!  And yet, I am sad.  She is my firstborn, my lovely, kind, caring, funny child.  I will miss her belly laughs.  I will miss seeing her smile all day.  I will miss her and Lainie sitting at the table together.

Lainie is almost 15 and is growing up and moving on, too.  She seems to be away from home a lot.  She is quite in demand as a babysitter.  And with her daytime availability, she is a SAHM's dream.  So she babysits during the day and many evenings.  She has many friends to hang out with and is off making films with them much of the time.  She has homeschool classes, too, and online classes.  So even when she is home, she is often in her room on her computer doing homework, rehearsing her lines for plays or writing something wonderful.  

Our days will be different now, and will continue to change as my babies get older.  But no one ever told me that these homeschool days spent together, learning everything together, would change ME.  I loved those days of being with each other!  I love my girls and who they are becoming.  And it just hurts all the more to see them moving on.  Sure, I think they have been well-prepared for the world.  

But I miss them.

And forget what I wouldn't have mattered if anyone had told me.  I would not change our journey for the world.

Thursday, June 14, 2012

God Sent Me To The Farmer's Market

There is a small Farmer's Market in Auburn Hills every Thursday afternoon/evening.  My friends have gone for a long time and have always put out an open invitation for people to join them.  Even with all of their good reviews, I had never managed to make it there.  Until today.

Let me back up for a minute to let you know my emotional state of the past week or so.  In a nutshell, I realized Lea is old enough for the post-high school program of special education.  She wants to go.  She had a last minute graduation.  I have been meeting with *gulp* public school staff after homeschooling since Feb. '07.  I left her with the school psychologist for testing for 2 hours while I sat and became increasingly uncomfortable in the office of the high school.  I spent the next 48 hours questioning this decision to send her back to school.  Some of my thoughts: "Is she ready?"  "Will she be safe going off in the community with this group?"  "Will I survive all this worry?"  "Is this program going to meet her needs?"  "Am I sending her because it's a great opportunity for HER, or so I can have a break?"  OK, so that is where I was at.

For some reason, I chose today to go to the market.  My friends were not even there and I almost left!  It's crazy, but I get uncomfortable shopping markets and art fairs.  I feel guilty looking at stuff made/grown by these people who have put themselves out there to sell it, and then not buying.  But I can't buy everything!
I sucked it up and shopped and got some great stuff.  Beautiful tomatoes, jam, salsa, eggs from happy chickens.

With my arms full, I approached the last booth on my route.  It was full of handmade items of all kinds.  As I started to look, a young woman asked me, "Did you find what you are going to buy yet?"  I could tell these entrepreneurs had some cognitive challenges and, of course, smiled as my heart swelled.  "Not yet" I said.  I put my prior purchases in the car and came back to shop without distraction.  There were candles made in cute teacups, plaques with nice sayings on them that were very artsy, cement stepping stones decorated with jewels and coasters made from tiles with pictures modge-podged onto them.  "Here, take a flier about our program!"  I read the flier describing the SKILL program of Avondale schools.  This is the post-high program in their district for people with special needs from 18 to 26.  The same program Lea is signed up for in our district.  Hmmm....

With the help of the very chatty young lady, I picked out a coaster that has a picture of a boxer puppy on it.  This sparked a (rather long) conversation about our dogs.  She even asked if I had pictures of them on my phone.  (Which I did.  Is that weird?)  I also showed her a picture of Lea and told her Lea has a disability, too.  "What does she have?" she politely asked.  "She has Down syndrome."  The girl and her friend looked at each other and grinned.  "OH!  Cool!!"  Not a response I have ever gotten in Lea's 17 1/2 years!  "Does she have a lot of friends?"  Wow, that is an unexpected question.  "Well, she does have some friends, but she doesn't have lots."  I said.  "Well, I LOVE making new friends!  Maybe I can meet her!"

Enter the program director.  We had a talk about Lea, about her starting the Rochester program in the fall.  I even told her about my hesitation, about my fears.  Her face just lit up.  She explained how these programs offer our special kids such great opportunities to interact in the community and learn independence and life skills.  She talked about her love of these students.  She told me about a fun dance program they offer during the school year and said Lea could attend.  My new friend behind the table said "Yeah!!!  It's fun!  She should come!!"  I got information on the program, said my goodbyes and left with my tile coaster.

A tile coaster made by a stranger is probably the LAST thing I need in my house.  The clutter is closing in on me and I am trying to get rid of stuff!  But that precious coaster is a reminder to me that God has this in His hands.  He knew it all along.  He sent me to the Farmer's Market to remind me.

Tuesday, June 12, 2012

Ringing the Bell

We had such an exciting week last week!  After a last minute scramble, Lea graduated.  We found a group of homeschoolers who were having a graduation ceremony and we pretty much crashed their party.  There were 6 other kids.

We only met them on Thursday when we went to rehearse.  Lea was great and her usual friendly self.  She received a little graduation cap as a gift with a marker.  It was a souvenir that you can sign.  She brought this along and proceeded to ask the other grads and their friends and siblings that were there to help to sign it for her, even though she didn't know them.  The kids were nice about it and signed it.  But from a distance, where I watched, there were a few kids who saw her approaching, saw she was different, and avoided eye contact.  They pretended not to see her standing there waiting for them to look at her.  She eventually said "Hi, I'm Lea.  Will you sign this?" and they did.  They probably wouldn't have done that little eye roll had they known I was still watching as she walked away.

One family arrived a bit late.  Their graduate, Brittany, was tall and very pretty.  I knew Lea would be drawn to her.  "Here we go again," I thought, waiting for the avoidance.  But wait...what is this?  Brittany is smiling back at Lea.  She is signing the cap!  She is having a conversation with Lea where she is talking, too!!  Lea was excited and really liked Brittany.  She was lucky enough to get to walk and sit next to her for the ceremony.

The next night was the ceremony.  We had to be there early to get ready.  Again, those other 5 kids were not friendly with Lea.  They weren't mean, but they certainly didn't include her in their group pictures or their running around being silly.  But Brittany did.  Brittany talked to Lea, introduced her to her friend and her little sister Hannah.

The ceremony was great, it went off without a hitch.  There was a reception after and the kids were all glowing with happiness.  I overheard one of them say, "Let's go ring the bell!"  Apparently the church we were in has a big bell outside.  So the 5 kids ran off with their friends and sibs.  But before Brittany went, she came to Lea.  "Do you want to come out and ring the bell?"  Lea's "Sure!" was filled with excitement!  So off she went to ring the bell!  Do you have any idea how this made her feel?  Not the bell ringing, of course, but the simple act of being included.  Being wanted.  I shed a few tears of joy (not the first time that evening!)  When they came back in Lea told her, "You are my best friend."

I told Brittany's mother how much this meant to me.  She was very proud, rightfully so!  When we were about to leave, I saw Brittany and her sister.  I told her with tears in my eyes that I noticed what she did for Lea.  That I appreciated her asking Lea to ring the bell.  Brittany looked surprised.  "Well, Lea is a graduate, too!  Why shouldn't she ring the bell?"  It was as if it never even occurred to her to NOT include Lea.  My response was, "Yes, that's true.  But you are the only other grad who even thought to include Lea and it really means a lot."  Brittany explained that there were times she has felt left out and different, and she always tries to include others who are the same way.  Hannah, her sister, was also very sweet.  "Lea is so nice and I like hanging around her!!"

It may seem like a little thing, to talk to someone with a disability, to include them in something you are doing.  But it doesn't happen very often to Lea.  I always make a point to talk to people I meet with special needs, even if only for a minute.  If it is that easy to make someone's day, why not give it a try?

Wednesday, June 6, 2012

Moving on

In 2 days, Lea will walk in her graduation ceremony.  Of course, this milestone causes me to reflect on her life and accomplishments.

Lea has had to work harder than most for everything she does.  Babies without a disability just eat.  Lea had to be taught by therapists and us at home.  Most babies just crawl.  Lea had to be taught by therapists and us at home.  Most babies walk, talk, run, read.....All of this came for Lea, but only after much work on her part.  She started out with a strike against her, but she overcame it.  Not only does she do all of that stuff above, but she does things that many of us, who are physically more capable, do!

She has been in the Special Olympics for several years now.  She has received tons of medals for swimming; bronze, silver and, of course, GOLD!  But for Lea, receiving a 4th or 5th place ribbon is just as exciting as getting the gold.  She knows she has done her best and is SO proud of herself for it!  Oh, she knows the difference between 5th and 1st place.  She just doesn't care which one she wins.  She plays soccer and wins medals and ribbons for that as well.  It has been so inspiring to see her progress in these sports.

She started therapeutic horseback riding 2 1/2 years ago.  At first, she refused to even get on the horse.  Then when she would ride, she would lean way back in the saddle or hunch over forward.  Now her posture is great and she can post, trot and canter!  She has tried jumping and roping, too.  (Although her favorite thing to rope is her therapist, Stacy!)  She even rides bareback.  If you have never ridden, let me just tell you that this no easy task.  Stacy lovingly (?) lets (read MAKES) me try this, so I can see how advanced Lea really is.  With no saddle, you have to use your leg and core muscles and have great balance.  Lea makes it look so easy!  And her muscles don't even work as well as mine do.

Academic learning has been the same as the physical stuff.  It took her much longer to learn to read.  But she kept at it, for years, and now has a love of reading that many people never do.  Her writing is really good, too. Fine motor activities can be very hard for her and physically uncomfortable.  Yet she will sit there with her pencil and write tons of great stuff in her journal.  She also writes songs!

She continues to WOW us with what she can do.  I don't think any of us will have a dry eye as she walks across the stage to receive her diploma.  She tried on her cap and gown and I had to fight back the tears.  I am going to need lots of Kleenex and waterproof mascara!

Great job, Missy Lea!!!

Wednesday, May 23, 2012

A Giving Spirit

Being the Mom of a kid with special needs can be challenging at times.  With Lea I always have to take extra things into consideration.  The walk is too far, the noise is too loud, the touch is too soft, the dark is too....dark.  But days like today remind me of the blessings Lea brings to our family.  Heck, to our WORLD!

Lea is a very giving person.  There are so many examples that I had to narrow it down to just a few to tell you about.

A couple of years ago, Lea attended an art day camp for a week at a local church.  Each day she created some really cool things.  I think.  I only saw one project!  I would pick her up and ask her what she made that day.  She would describe it, I would see the other kids' work.  "Where is yours?" I would ask.  "I gave it to (insert name here)."  It was always someone different.  She gave her artwork to other kids in the class, teachers, volunteers.  The one and only thing I saw from this camp was a really cool birdhouse she painted and decorated with jewels and glitter.  It was huge and not just decorative.  An actual bird could live in there!  It was still wet, but I had plans to spray it with urethane to protect it and put it outdoors.  We brought it home and I put it on the table as a centerpiece.  Later that day, we had a visit from a very special woman.  She was Lea's first teacher when she was in the Early Intervention program.  Hamida visited our home once or twice a week for years giving Lea therapy from ages 3 months to 3 years!  We hadn't seen her in years and it was great to catch up.  As soon as she walked in the door, Lea told her, "I made you something!"  She was all smiles as she ran to the table, grabbed the still-wet birdhouse and gave it to Hamida.  Hamida was overjoyed!  I would have never told her, "No, that is a mistake.  That is MY birdhouse!"  I never even got a picture because then the secret would be out that I had planned on keeping this treasure.

Lea now attends a farm day camp weekly.  She makes a craft almost every time.  I have almost none of these crafts.  Today is a good example.  One of the volunteers at camp handed me a strange but intriguing item.  An empty water bottle with straw glued all over it, a string attached, and holes cut in the sides.  Inside was black sheep's wool.  They sheared the sheep last week and they filled the bottles with the wool.  You hang this outside and watch as the birds come by and take bits of wool from it to use in their nests.  Just about the coolest thing I have seen lately!  Lea said "No, Mommy, that one is not mine."  "How can you tell?"  "Because I gave mine to Suzie."  Suzie (name changed to protect the innocent, LOL) is another camper who recently had a really bad day.  She yelled at Lea, got in her face, and snatched the glasses off Lea's face, breaking them.  Lea was quite upset about this (rightfully so!).  I explained what the camp director told me...Suzie had been feeling ill and off due to a change in her medication.  Obviously Lea has forgiven Suzie as she was the recipient of the bird's nest maker!  Still, I wanted this thing.  Suzie made her own, after all.  What about me?

Lea also gives us all candy. She has a weekly therapy appointment at which she receives little candies.  She purposely chooses candy that she can't eat (food allergies) so she can give it to me.  Or Grandma and Granddad.  And sometimes even her sister Lainie!

Lea is truly a giving spirit.  And I DO get to keep a few things she gives!  My favorites are her smiles and her hugs.  Given most freely of all!

Friday, April 13, 2012

The Ketchup Meltdown

Lea has been milk free for about 2 years now.  Eliminating milk has changed her life!  Her stomach problems disappeared.  Her nose is less stuffy.  She rarely gets the eczema that was always plaguing her.  Even her crabbiness that we attributed to being a teenage girl went away!  (Well, almost.)  These changes are why I am a Food Nazi, checking everything she eats.  Asking people we visit if I can read their packages and see their recipes.  You would, too, if it kept your kid safe.

She recently began having some more tummy aches.  Since people with Down syndrome have a 10% chance of getting Celiac disease in their life, I wanted to check it out.  Celiac is an inability to process the protein gluten which is found in wheat, barley and rye.  She has tested negative in the past, but the tests aren't always accurate, she tests negative for milk, too!  The doctor recommended going gluten free to see if her tummy gets better.

I have researched a gluten free diet in the past when we thought she may have Celiac. I have many, many friends who either have it, or have a sensitivity to gluten and don't eat it.  Since I already read every package, and eating at a restaurant or even a relative's house is already a nightmare, I figured I could handle being GF.  I know where gluten hides, so I can do it.  There are so many GF products available these days, it won't be too hard.  I am confident this will be easy.

Then I went shopping.  Lea rarely eats bread or toast, so that is no problem.  But what about snacks?  Especially those run out the door in a hurry ones?  I stood in Trader Joe's, staring.  The funny thing is, I was staring at the cheese!  I was so overwhelmed and starting to feel bad about taking away more of her favorite foods that I stood in the cheese section, eyes glazed over.  I snapped out of it.  Come on, Super Mom.  You CAN do this!  Lea isn't picky and is even excited to try some new foods!  Step away from the cheese.

I got her some dried fruit like strawberries.  She doesn't like most dried fruit.  But I bought it because I didn't know what else to buy.  I found some rice crackers that looked good.  Ok, confidence returning.  These are salt and pepper flavored, she will love these!  I stepped into the condiment section and saw some ketchup.  Mini panic attack.  Ketchup has vinegar which is made from grain, right?  Is that right?  OMGluten!  Lea LOVES ketchup.  Barbecue sauce is next to the ketchup.  Lea LOVES barbecue sauce!  No more ketchup or barbecue sauce?  She may as well never come out of her room.

I sat in the parking lot contemplating this.  All the things she can't have.  She is already so different without any food allergies!  It isn't fair.  It's hard to manage a food allergy, but for someone with special needs, it can be even harder.  She just wants to be like everyone else.  She does feel special when someone says "here, I made this just for you!" but watching everyone else eat birthday cake while she has something different is not fun for her.

By the time I got across the street to the Whole Foods parking lot, I was starting to tear up.  It's not fair, why Lea, why not me instead, how will we do family holiday stuff now?  My heart started pounding, my palms were sweaty.  I really didn't want to have a breakdown in the parking lot, so I called my friend Kim.  Celiac and gluten free for her and her kids for many years, Kim never cheats with gluten.  Never.  She is my expert.  Thank God she answered her phone.  "OMGosh, Kim, doesn't vinegar contain gluten?  Lea loves ketchup and I can't imagine taking it away from her!" I gushed.  She calmed me down and explained that most experts agree vinegar is gluten free.  They don't have a problem eating it.  Whew.  Ok, she talked me down some more and told me "You can do this.  It's hard at first but you'll be fine."  Whew again.

Only one more contact with Kim while in the store, and I was on my way.  Both Whole Foods and Trader Joe's gave me big huge lists of GF foods they carry.  I found many different granola bar type things and some pizza crust.  Pizza is what Lea is most worried about missing.  The GF pizza we have had in the past has been fine, but no wheat AND no cheese....well, we will see.

The thing I had to realize, right there in the parking lot, is that yes, this sucks.  But it's our reality now and it's time to move on and deal with it.  It will be worth it when Lea is pain-free!  Now I gotta go find a spot on the counter for Lea's GF toaster.

Thursday, April 12, 2012

Too Social?

There is so much talk about social media.  With Lent just passed, there were many of my Facebook friends who gave up Facebook for Lent.  There are always people saying they need to get off FB, they spend too much time on there.  If you are one of those people, I'm sorry to be using you as an example here.

Facebook is called SOCIAL media for a reason: it's supposed to be social.  Being on FB and just lurking is like being at a party with tons of your friends, and you are just hiding in the corner, never joining in the conversation.  People have said to me "you are on there soooo much!"  "you are so bad!"  (I find it very funny that they say this....if you know I'm on there a lot, doesn't that mean YOU are on there a lot?  If not, how do you even know I'm on there a lot?)

So let's clear this up.  First off, for those of you who still have a dumb phone, let me explain.  I can look at FB, post on FB, take a picture and upload it to FB all in about 30 seconds.  Even if I do this 10 times a day, I have spent only 5 minutes, see?

I do not now nor have I ever thought FB was bad.  Sometimes bad things happen on FB, yes.  Admittedly, I get in FB fights from time to time.  This, I will admit, is not a good idea.  I must try to stop this.  Yes.

FB has brought me so many good things!  Here are just a few; some of you will recognize yourselves here!  I have been able to keep in touch with people I probably never would have spoken to after high school.  In fact, before FB, I had not spoken to them.  But now I see pictures of their kids, their vacations, their lives.  It's just like seeing someone in person: "What do you do?  Where do you live now?  Can I see pics of your kids?"  I have FB friends I can count on to be excited for me when I post good news.  And I am truly excited for theirs.  I have FB friends who I don't know if I ever even hung out with in high school that crack me up daily.  I have many friends who will send up prayers if I ask, just as I will when they ask.  And I really do, I don't just click "like."

When my niece was brutally attacked, the outpouring of love from my FB friends was amazing.  I had friends and their friends praying for her and our family, around here and all over the world!  How awesome is it that I hadn't spoken to my friend from high school in 20 some years, and she had her church in Japan praying for my niece?  How awesome is it that I "met" a wonderful woman through someone else's FB page as we were making fun of our mutual friend, and she has become my Sister in Christ and prayed for my niece with her church in Mexico?

I have been able to find out what my old college roomies have been doing.  And it was wonderful to see them last weekend, one local, one from California and one from Prague!  To see them and what they have become.  I would have missed out on this if it wasn't for FB!  Oh sure, we could keep in touch via email, phone, letters. But we don't.

I have been able to let others know about Down syndrome and how wonderful Lea is!  I have always had a feeling it's my job as her parent to let others know about it.  FB is a great way to do that.  I have talked a lot about homeschooling my girls and "met" some inspiring homeschool moms via FB that I never would have met in person.  (Still haven't met some of them in person!)  But we share ideas.  People have contacted me, knowing through FB that I homeschool, and have sent others my way with their questions in starting out.

So I stand by my Facebooking with no apologies.  I love my FB friends and they love me!  (And if you don't, you can just hide me.  I'll never know.)

Tuesday, February 14, 2012

My God

My God.  No, not OMG.  Literally, my God.  Do you know Him?  Due to a recent online "run in" with one of my Sisters In Christ, I was inspired to tell you about Him.

I barely know this woman who sent me an email stating that we as Christians should be more judgmental.  Now, I don't know if whoever is reading this is a Christian or not.  But either way, you are probably aware that we Christians have a reputation for being very judgmental.  The article she sent said, "We are told to tolerate the religious thinking of non-Christians, because every religion has an element of truth to it, and because salvation is not exclusively for Christians. We must also tolerate in our churches the sinful actions of others. It is not our business if an unmarried couple lives together! It is none of our business if a member of our congregation practices homosexuality! We must not judge them." The whole article is about how wrong this is...society tells us these things and we, as Christians, must stand up and judge those that would do such things. It also says, "We must cater to the whims and wishes of the feminists" as one of those bad things society is telling us. I replied asking her to please not send me these emails anymore and that it was offensive. Her response back? "The Bible says a lot of things that men find difficult to swallow." Implying, if not saying outright, that I just can't handle the truth.

Riled up, I started to rant on Facebook, as did some of my friends, also Christian. But I decided that wasn't a good venue for such a thing. Plus I have too much to say and it just won't fit on Facebook!

So here I am to tell you about my God. My Jesus. I am not going to throw scriptures at you. You have heard them all before. Taken out of context, you can find one to support any point of view. I am going to tell you about who He is to ME.

First, here is where I find Him, what He looks like:

I saw Him in the places above: Mexico, Hatteras Island, Smoky Mountains.  I see Him in my children and the rest of my family.  I see Him in the pictures of the faces of people Brad and Lainie met in Haiti.  I see Him in the face of a sweet, tiny baby in the church nursery who was born addicted to drugs.

I feel Him, too.  In the hugs from Brad and the girls.  In the kisses from my doggies.  At times I have felt Him so strongly, it was like a physical presence.  Like when tons of people in the church I grew up in laid their hands on my Mom in prayer before her breast cancer surgery.  Like when our then-minister prayed for me before some surgery of my own.  When a group of wonderful people surrounded my niece and prayed before removing her life support, letting her go.  I feel Him at almost every church service I attend at Kensington.  Enough that I cry there on a regular basis.  His presence overwhelms me!

This God of mine is full of grace, forgiveness, understanding.  He doesn't judge me and I don't believe He wants me to judge others.  People might make choices that I wouldn't make.  But that doesn't make me better than they are.  God forgives everyone, that is the best part!  My God is all about the LOVE.  He wouldn't want me to use my faith as a weapon against others.  He doesn't want me to preach hate, no matter the circumstances.  

I will pray for this woman, pray that maybe someday she can know MY God.

Sunday, February 5, 2012

The Face Behind Your Jokes

This is a tough one for me to write.  There is so much pain, it is a physical thing for me.  My heart literally hurts.  When I hear or see someone use any version of the "R" word.  Retarded.  Retard.  Even the more politically correct terms like mentally challenged or cognitively impaired are being used in jokes.  I know you are trying to be funny when you say these things.  I know you think these terms are funny to hear, and you laugh.  I just want to put a face to your jokes.
Lea is 17 and has Down syndrome, as most of you know.  I have seen several awesome YouTube videos of people in their own campaigns against the "R" word.  You know the ones, where there is a good song playing, and the person holds up a series of index cards with messages on them.  They often say about their loved ones, "she is not retarded."  I know where they are coming from.  They have the same knife-in-the-heart feeling that I have when I hear the jokes.

But the truth is, Lea IS retarded.  Mental retardation just means it takes Lea longer to learn things.  And it means there are some things she probably will never learn.  There are things we have worked on for years, like math.  One day she can do quite well.  She can add and subtract 2 digit numbers.  The next day, she can't add 2 + 2.  This is not funny, this is not something to make fun of.  She does the very best she can and her brain just can't keep certain things in it.  It does NOT mean Lea is stupid.  I know what you are thinking.  "Of course Lea isn't stupid!  I never said she is stupid, or anyone with a disability!"  But when you tell the jokes, when you forward them along in an email, when you post it on Facebook or when you refer to someone or something that IS stupid as retarded, you are calling Lea stupid.  By using the word retarded in a negative fashion, you bring Lea down.

I stand up for Lea all the time.  I have even scolded, if you will, a Kroger employee who was putting chips on a shelf because he called down the aisle to the other employee that the chips looked so retarded the way he was doing it.  I spoke to the owner of a Hallmark store when her employee yelled across the store about something that looked so retarded.  I have asked friends (hopefully without scolding!) to please not use that term, at least around our family.  I know it would be asking a lot for people to start doing the same.  To tell someone who jokingly calls someone a retard that it hurts.  "I love someone who is mentally challenged.  That term is hurtful."  But I wonder, will anyone reading this at least change their own views of how funny this word is?  Will anyone at the very least not laugh at the jokes?  Will anyone choose to never use these terms in a negative way?  Will anyone not joke about "the short bus?"  Will anyone look at Lea's beautiful, laughing face above and remember her when the term is used?  Will anyone at all share this blog with others?  I hope so, with all of my heart!

Lea may be mentally challenged.  But I tell you one thing: she would never purposely hurt your feelings by making fun of you!  That is one of the amazing things about Lea, and all of the people I have met over the years with challenges.  They are so full of love!  Lea has been made fun of by other kids.  She may get sad for about a minute, but then she is full of forgiveness.  "I still like her, Mommy.  It's ok."  SHE has to comfort ME in these situations!  I wish I could blow it off like she does.  But I can't, so I do what I can as her Mommy to try to make people understand.

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 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!!