Friday, July 18, 2014

Challenges, Connections, and Comfort.

Yet again, I am doubling up on blog hop posts for my friend Meriah's blog hop.

The next two posts focus on the challenges associated with disability, as well as the comfort and connections.

The challenges of raising a child with Down syndrome (specifically, raising my child with Down syndrome):

* Ellie usually is not the best at _____ in her class.  I'm caring less and less, but I know that issue will resurface repeatedly over the years.
* Ellie meets milestones later than her peers.  (Walking, talking, potty training, etc.)
* We have to save for Ellie differently due to the laws that limit social security income for people with over $2,000 in assets.  Therefore, we have to make sure Ellie doesn't have any assets when she turns 18, so she can receive aid if needed.
* Lots of doctors appointments and meetings for school.  Lots.  Lots.  Lots.
* Watching other people treat my three year old like a baby.
* Listening to people use language that hurts people with disabilities, specifically the word "r-tarded."
* Reflux.  It's been acting up again lately.
* Open heart surgery.
* GI surgery.
* Everything is too tall for Ellie.  She needs a boost for almost everything.

But the comforts and the connections:

* Connecting with new parents on Babycenter and providing support for pregnant and newly diagnosed moms.
* Friends with Down syndrome in the neighborhood.
* Having friends wherever we go thanks to the big Down syndrome community.
* Living in a community where Ellie receives 1:1 support to participate in inclusive gymnastics.
* Pride when Ellie meets a milestone she's worked hard to achieve.
* Listening to Ellie talk nonstop.
* Our early childhood special education program.
* Therapists who know and love my daughter exactly as she is, but who work hard with her to allow her to reach her potential.
* Knowing that my daughter is the person God intended, with her own full personality and dreams and hopes and fears and loves.

I've heard special needs parenting described as extreme parenting.  The lows are hard.  The highs are oh-so-great.  I have no idea if this statement is true, because I've only parented in this special needs realm.

I do know that raising Ellie is sometimes hard.  Sometimes, it's pretty simple.  And often, it's full of laughs.

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1 comment:

  1. Megan,

    I recently stumbled on your blog, and I wanted to tell you that Ellie is beautiful and precious and I am positive that she is the absolute BIGGEST blessing!!!

    Thank you for posting your thoughts on your personal challenges. I have worked in a PPCD classroom for the past two years, and it is good to read a parent's perspective. I also could not stand when people talked to my 3-5 year olds like they were babies. That, and mean, hurtful words degrading towards people with special needs are things I struggle with daily, and things I advocate to educate others about. BUT...the minute my kiddos accomplish a goal that they have been working so hard towards is probably one of the best feelings in the world. I usually cry, honestly. Happy tears and proud tears!

    I admire your strength, and your openness. I am sure it can't always be easy to be a special needs mama, but I know it is so worth it. Thank you for sharing your daughter, and your life!

    Have Fabulous Friday!


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