Monthly Archives: August 2012

Manic Monday | Down Syndrome

Just another Manic Monday….

Its Monday!  Most people are thinking, yes, Monday why the exclamation point?  For many its more like ” its Monday- blah!”  Whether you trudge to work, drop the kids at school, or whatever your routine- it’s the start for many of  yet another long week- the weekend seeming so far off.   I find myself often falling into this pitfall trap of the Mondays- it’s an easy thing to do.   But not today- today I’m thrilled it’s Monday-I’m thankful for another week, another day, another minute to enjoy this precious gift called life.

Yesterday I spent the day at the new Ann & Robert H. Lurie’s Children’s Hospital.  Although it was my first time in the new hospital I always have a bitter sweet feeling being in any children’s hospital.  I feel happiness that my daughter is home and healthy enjoying her life, sadness for the children currently residing there, and anxiety as past memories of our own struggles come flooding back.

However, this time I was not there for Kelsi, but rather for a plaque dedication for my grandmother.  When my Grammy died last October we set up a fund to raise money for Kelsi’s heart surgeons in her name.  Many other families do this as well and yesterday the hospital honored these people in a heart wrenching ceremony filled with love and many tears.

The pain and heartache in this room was palpable.  As one parent after another stood up and shared memories of their loved ones, mostly children, I was overwhelmed with pain for these people.    One man who touched me the most told of his young pregnant daughter, who was a twin that was taken suddenly near the end of her pregnancy.  Their granddaughter lived 3 days and went to be with her mommy.  It was sad.  It hurt.  What these people wouldn’t do for one more day-for one more Monday with their loved one.  In the midst of the heartache though was a sense of peace, a sense of hope as the leader reminded us that by living each day we carry on the legacy of those left behind because they live in us.  “Life is like an onion; you peel off one layer at a time and sometimes you weep”

So today I urge you to hug your husband or wife, kiss your babies one more time, tell a friend you love them; Embrace this day- this Monday because we’ve been given another day to live- another day to love.

This is the day that the Lord has made – we will rejoice and be glad in it.  Psalm 118

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Eye of the Tiger | Having a Child with Down Syndrome and Health Issues

* This post is dedicate to Elijah Daniel Lautenbach Leimberer .  A child of the Down syndrome community who went to be with the angels 8/1/2012.

Rocky won best picture in 1976 which was the year I was born.  Most would say this is a coincidence but I like to think not as this is my favorite movie of all time.  There is something about the will to fight that inspires me.  The training montages, the underdog rising to the challenge, Apollo, Adrian’s heart- wrenching speeches… I love it all.  I love it because Rocky fights. He fights for what he wants and he doesn’t give up.  I love it even more since I’ve had Kelsi because I see that spirit in her.   I think other parents of children with Down syndrome would agree that the hardest part of raising a child with Down syndrome isn’t the part that people are initially scared of- the possible developmental delays or social concerns- but rather it is the medical concerns.  It’s when they face health challenges and the increased risk of further health complications.  Health concerns are an issue.  To say they are not would not be an honest reflection of raising a child with Down syndrome.

“You don’t throw a whole life away just ’cause it’s banged up a little.”  -Seabiscuit
I haven’t talked about Kelsi’s earlier days much.  They were filled with many doctors visits and numerous hospital stays.   Kelsi was born with an AV Canal Defect which is a serious heart complication and required her to undergo surgery when she 4 ½ months old.  She was in the hospital for around 2 weeks and a few times prior to the surgery.  My husband slept by her bedside, Grandma stayed during the day and I stayed there as much as I could emotionally handle.  I realized in the first few months of her life that I did not handle the hospital very well.  It scared me, reminded me of the situation I was in and even in the best of all hospitals it made me feel lost all over again.  Following surgery she needed a G-tube for feedings.  Most doctors told me to expect her to have this for years to come as she was past the age of learning how to bottle feed or suck on her own.  That was a pivotal moment for me because I was determined that Kelsi would prove them all wrong.  It was time to be Mickey (Rocky’s coach) in Kelsi’s Corner.  Six months later Kelsi no longer needed a G-tube and to this day is a champ at the dinner table! 🙂

“What if I lose?  Then at least you lose with no excuses- with no fear.”  -Rocky III
Looking back now I always say that prenatally I thought Down syndrome was a big deal but it wasn’t the scary part.  Having a child go through open heart surgery- that was the big deal.  Going into the surgery and preparing  your child for it is what is emotionally draining.  I found myself resisting the urge to bond with Kelsi leading up to the surgery for fear of losing my daughter.  But as I sat there often tempted to wallow in self pity I would just look at Kelsi.  If this little girl was fighting this hard, then so must I.  No parent should have to watch a child with or without Down syndrome suffering or in pain, but it happens regardless.

“Life is like a box of chocolates- you never know what you’re going to get”  -Forrest Gump
The strength Kelsi exhibits as medical challenges are thrown at her inspires me to this day.   Each time I get a shot and facing my upcoming knee surgery (I’m a wimp) I remind myself if Kelsi can do what she does then I can do this.  If these kids will fight this hard for their chance to live, don’t they deserve the chance to fight?  And isn’t it our job as parents to be their coaches?

“Faithless is he that says farewell when the road darkens.” ― J.R.R. Tolkien, The Fellowship of the Ring
In many ways I can relate the emotions that Rocky endures to the way it feels going up against the health issues.  You often feel beaten, scared that what you fear is the bigger and stronger opponent and you are left with a decision.  Will I fight?  Yes.  Is it scary?  Yes.  Is it  painful?  Yes.  Is it worth it?  ABSOLUTELY!

To Kelsi, and all of the children with Down syndrome who fight each and every day, THANK YOU for inspiring us and reminding us that “Anything Worth Having Is Worth Fighting For” – J. Johnson  (I think Rocky would also agree :))

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