Wednesday, April 23, 2014

What To Expect If Your Baby Has Down Syndrome

There used to be a time when fear consumed me.  I let the what ifs take over me.  I sobbed on my husbands shoulder.  I envisioned my life to never be the same.  And my biggest fear - how will I survive if my baby doesn't survive her open heart surgery?

I would turn it over to God only to pick that burden back up again.

I put on a mask when I went out in public.  I pretended I was coping just fine.  I acted as if I wasn't scared but faithful in the Lord.

And at times I was OK.  At times I walked cloaked in faith.  But I struggled daily.  Sometimes God's plans are really REALLY hard to understand when you are walking in them.

What I have learned in the last 3 years is what to really expect when having a child with Down Syndrome.  Someone once gave me a book about what to expect, I read a few chapters and threw it away.  I hated it.  Most books and pamphlets are so outdated the material is beyond depressing.

I have learned to turn toward blogs, follow families living out my fear, and in that I found some peace & friendships I still lean upon today!


When Ollie was born I learned to expect everything from her.  I learned that I couldn't set the bar lower for her than my other children, but instead I had to set that bar just as high.  She meets expectations and generally exceeds them - if I give her the opportunity.  The only people limiting her is how we treat her!  I refuse to limit her.

I have learned that I have to paint out my expectations for others.  Some people still don't see the beauty in a child like ours.  It makes them uncomfortable so instead of asking questions they become stand offish BUT if I set the expectation out there & tell them how we feel about our child - their entire mood shifts.  And I know it sounds odd and weird but I've done it many times.  I would be a rich woman for the amount of times people have told me "They are so sorry."  My response has always been, "Why?  I'm not."  It throws them off every time and sparks rich conversations where I have an opportunity to share the truth I now live.

I have learned there is beauty in "imperfections".  I don't believe Ollie is one bit imperfect but in the eyes of many she is.  There is great beauty in all her God given pieces.  Her crooked pinky fingers, the light spots in her eyes, the way she smiles, the way she looks so much like her friends that it connects you to a world of people you now love like your own.  Her tiny little heart beat that doesn't beat quite as it should but it's healthy - oh that heart beat is precious.  The way she smiles with her whole body - I can truly see her smile from the back of her head she wears it so well!

I have learned that God's plans are always best and in time they always make sense.  I have learned that unanswered prayers are often answered - just not as you have requested.  I have learned that having a sibling with Down Syndrome doesn't limit your other children but makes them better, more compassionate, more understanding, more open hearted, more open to the world in general.  My big kids are incredible in their level of understanding differences and embracing everyone for who they are.

I have learned that kids & adults can both learn about Ollie.  I have learned how to be an advocate.  How to be a hard ass and stand my ground when I need to.  I have learned to partner with others, and to realize that sometimes complete strangers want to push my daughter to her capacity too!  Sometimes strangers become your closest friends and fall in love with your child just on how she works so dang hard to do everything she can do.

I have learned that when the cards are stacked against you - some how you come out left handed adding another card to the deck - but you can still draw stinking circles - big deal there folks!  Left handed circles!

I have learned that staying inside my shell is no longer possible.  That by being vulnerable, being real, sharing our daughter, sharing our story, and shoot sharing her photo on public social media avenues opens up a whole big can of worms of what ifs BUT it does a heck of a lot more good.

I have learned that one single post teaching that the R word (retarded) is HATE speech can spread like wild fire on social media.  Why?  Because our daughter was created for a purpose much bigger than me and her ability to breathe joy and life into others is much more than I could ever be capable of by myself.  That by sharing her - others are blessed, others are reached, others are educated.

In 3 years time, I've learned that not every day Down Syndrome is awesome (some medical stuff always sucks) but 99% of the time it rocks our socks & we would never ever dream of life any other way.

Fear is abolished, God has prevailed!  Every day I thank the good Lord for that single extra chromosome that has made all the difference!



Tuesday, April 15, 2014

An Ode To Trudie

12 years sounds like a long time, but in actuality I think 12 years flew by faster than I could keep track of.

I adopted Trudie Claudette from an abusive home when she was 6 months old.  When I got her she was extremely underweight, her collar was so tight her neck had no hair on it when I removed the collar, her back legs were slightly deformed, and she had the most quirky personality.  I'm fairly certain she was in her kennel a majority of the time and teased by little kids constantly.

Trudie Claudette - Mailman Hater, Nap lover, Food Vaccuum, Tiny Friend 2002-2014


I took her home with me to my apartment at SIUC and we became the best of friends.  I had a two hour drive home and she loved sitting on my lap as I drove and she always napped.  She was teeny tiny back then.

When Jade & I got married she moved in and was our first child.  I actually drove her to my Mom's house every morning to be babysat - ridiculous much?  Maybe a little.  She slept in our bed and I spooned her every night!

She welcomed home all 3 of our babies and allowed them to all lay on her and abuse her in their loving kid ways.  She moved from our bed and started sleeping with them - under the blankets of course!

Yesterday we had to say goodbye to her.  She was having some severe pain in her back hips and I just knew it was time.  It was incredibly hard and I did the ugly cry at the vets office then in my car before I left the parking lot.  Putting your pet down sucks - I know there are worst things in the world but none the less it ranked up there with a pretty bad day in my book of bad days.

We buried her under a group of big trees in our yard and the kids said their goodbyes.  It was a hard shitty day.  I took a nap and ate donuts to make myself feel remotely better for a bit - yes even I skip workouts and eat garbage at times - it's my old habits that pop up when I'm emotional.

The only highlight in the day was when we walked out to bury her and right beside her grave Everett Mason was peeing - boys will be boys?!  At least it was a good laugh to get us through her funeral and lay her to rest.

Today I keep looking for her, trying to feed her and put her outside - life is weird without her - but today we are all doing OK.

Wednesday, March 19, 2014

All is Well In Ollie Town


I apologize for a lack of an update but girlfriend saw a hematologist in St. Louis and everything checked out A-OK.  We were blessed with an answer - she does NOT have leukemia - praise Jesus!  She had a virus of some type that messed up her blood work!  She had a routine blood test at her 2 year checkup because leukemia is very common in toddlers with Down Syndrome - they always check it, but fortunately it's not a part of her story.

So we are thrilled, we celebrated, and continue to celebrate!


God is GREAT and he blessed us with an incredible girl that continues to bring abundant joy into our hearts!  


Tuesday, February 25, 2014

Ollie Update

I just got off the phone with STL Children's and feel much better about things.

We moved her blood work up to yesterday (the 24th).  Her numbers were improving but her Dr. wanted to have hematology take a look at it just in case.


Hematology doesn't feel that her numbers are a huge concern but to be cautious we are going to go in to see them and do some more blood work.  

I'm super thankful to live near a major hospital capable of taking care of my sweet girl & that they are proactive enough to take a second look to be sure all is well!

Keep praying but things are looking up!!

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