Spread the Word to End the Word 2013

I'm embarrassed to admit that the word "retarded" was a part of my every day vocabulary prior to having Bear. I think most of us find ourselves using it when in reality we mean, "ridiculous." Today and every day, make a conscious effort to use ridiculous or some other more appropriate word in its place. Help Spread the Word to End the Word! 

The Lucky Ones

When Bear was a little over a year old, his physical therapist mentioned that she was working with a family w/ a newborn with Down syndrome and that the mom was wanting to connect with other mommas.  I was thrilled to meet someone in the area who was on the same journey, so I agreed to exchange contact info.  That mom and I met and closed down Starbucks that night.  And time went on and both of us became more connected to the Down syndrome community in our area.  Before we knew it, there were about 15 of us in the Indy/north Indy area, so we started a Facebook group to be able to connect regularly.  Last summer, we had our first official girls' night out and since then our group has nearly tripled in size to almost 50. 

We've gained a lot of new mommas to the group over the past few months, and when meeting a new momma, it's so hard to remember that she is probably still reeling and coping with some grief, because on the other side of that grief is such joy and deep love.  Those first months after the diagnosis is a really hard place to revisit because they were awfully lonely and dark days filled with fear of the unknown.  So at our girls' night out this fall, I was telling some moms from our group (called Moms of Kids with Down syndrome) that at first it's so scary and that we have to grieve the loss of the child we thought we would have.  But as time progresses and we get to love our wonderful children, we realize we're the lucky ones for having a child with special needs.  And so our group became, "The Lucky Ones."

I can't begin to describe what this group of women has meant to me.  Our daily Facebook posts of questions, concern, encouragement, and inspiration get me through those times of discouragement when Bear isn't progressing like his typical peers.  I've made some dear, dear friends through this group...girls who upon meeting for the first time become instant sisters (because when you share something like Down syndrome, you forget all the small talk and get right to the core of the issue: did your child have open heart surgery when he/she was a few months old?  Did you have to have a G tube?  Is your 3-year-old walking yet?  4-year-old talking?  5-year-old potty trained?  What have you done about Medicaid Waiver? Social Security? and so on and so forth.  Oh how your topics of conversation change when you have a little one with special needs.)

What doesn't change is our fierce love for our children.  Like any mom, we would give our lives for our kids; we just get to experience the raw, unbridled love that comes with a child with special needs.  And if you didn't read my post On Love the other day, now would be a good time to do so.  Love does not mean it's all warm fuzzies all the time.  Love defined is seeking to know and intentionally meet the legitimate needs of another.  I can't think of a more appropriate definition of how "lucky" we are to LOVE our special kids!

Check Your Ego at the Door

I've always been a high achiever, whether it be in academics, athletics, or my profession (I think it comes with being a people pleaser). I expect excellence of myself and of those around me and am disappointed when one or the other fails. So, tell me, how does a high achiever expect excellence of a child with special needs?

One of the greatest lessons I've learned from Bear thus far is that having a child with special needs is the ultimate ego check. All those things that we as parents hope for (I hope my child gets my brains, his daddy's brawn, my sense of humor, etc.) suddenly evaporate. Instead of searching for the ways my child is like me, I find myself searching for signs of development. Will he smile soon? Is his muscle tone developing? Can he hold up his head and look to both sides? And I know I'll continue to look for those things as the years progress. When will he walk? How long will he sign before he can speak? Will he potty train before starting school?

Ultimately, having a child with special needs is the greatest lesson in humility. We all pray for it--God make me a more humble person--but aren't truly prepared for the way he answers that prayer. Who would pray, "God, please give me a child with speical needs so that I may become more like you?" Our children typically serve as such a source of pride, and not to say that I'm not one proud mama because I am, but I've already experienced discrimation against him because of his DS and he's only 2 months old. Talk about being humbled. I can only imagine the ways he will be discrimated against all of his life, but learning how to handle that with grace and dignity and strength instead of indignation and anger will mold me and teach me humility beyond what I could have ever learned on my own.

Because He is Loved

"Kids with Down's are so loving," has been a constant refrain from friends and family as they address Bear's diagnosis. Funny, because 6 weeks ago, I would have said the same thing. Now, however, I realize that too often we take for granted that love is not something that is just assumed or granted simply because of a condition. Down Syndrome does not guarantee lovingness. Bear is no more likely to be loving than any other baby. He will be loving because he is first loved. (This sounds oddly familiar.) How would Bear possibly know what it is to be loving if we first didn't love him? He wouldn't. What we do know about children with DS is that they are more accepting of people and situations because they are not hindered by or burdened with the trivial and petty things that bog us down or keep us from reaching out to others. All it takes for a child with DS is to know that someone or something is good and they embrace that with joy.

The other refrain we keep getting is, "God only gives his 'special' gifts to 'special' people." Now, I've been raised in a Christian home, have gone to church all my life, and still recognize this as Christianese. This makes it sound as though God sits in Heaven and has a quota of babies with Down Syndrome that he must give away each year, so he seeks out only the most deserving couples to give them to (must give credit to Dan for these words). If God only gives his special gifts to special people, then why at Walmart the other day did I see a girl with DS who was obviously unkempt and probably had not been afforded all of the services possible for her? Would society say that her mother was a special person to receive such a special gift? I think not. If my first instinct was to judge that mother, I can only imagine what someone who has not been affected by DS would think.

Isn't it possible that sometimes God just lets life happen?? Dan and I are no more special than my sister and her husband who are expecting and will probably have a "normal" little boy. Why would we assume that we're set apart because God's given us Bear? Isn't it possible that we simply have to arise to whatever life gives us and be faithful in those things? I think God receives more glory in that response than if we say that God's given a special gift to a special couple. That steals the glory from God and places it on Dan and me.