Can't get this off my mind

I guess I need to blog about it so I can get past it! My mom told me about my cousin's friend, very young, in her early 20's, and how she and her husband just had a baby and the baby has Down's Syndrome. My instant reaction was sorrow... I immediately replied with, oh gosh, that's terrible. Then I realized how I reacted, and I felt an even deeper sorrow. How can I still feel like this when I hear about a new baby being diagnosed with Down's Syndrome. I should be over it by now, my baby is 14 months old. Isn't that plenty of time to get over it? And what exactly is "it" that I need to get over? My baby is perfect. She is so funny! She adores her sister, that is already obvious. She follows me or her dad with her eyes until she can't see us anymore, then the waterworks start. She loves and is very much loved, a critical piece of the pie that makes up my family. I can barely remember the days before her, and looking back at old pictures of MK, she just doesn't seem complete without sister in the shot. All of this, yet there is still that teeny tiny piece inside of me that can't bear to think of other kids with Down's Syndrome. I don't really know why. I don't see it in her, but when I'm out with her in public, and the staring starts, that's when that little piece falls to the pit of my stomach. People stare. They stare at her, then they stare at me. Strangers will put their hand on my shoulder and ask, "did you know?" Did I know people really treat people that are different, different?? No. Did I know that people would assume if I knew my Em had DS I would have terminated the pregnancy? No. Did I know that people make it a point to point out that my 14 month old baby doesn't walk like their 10 month old? No. Did I know I would think about the future of my daughter's lives every hour, every second of every day? No. Did I know I would hate when people tell me, "well God knows you better cuz I couldn't handle having a baby with DS." No. I prayed everyday for a normal, healthy baby. God didn't give me a baby with DS because I'm stronger than you, I'm not. I can't take it when anyone is in pain, much less kids. I look at the 8 inch scar on her chest and I cringe. I dread her appointments at Texas Children's Hospital in Houston - I can't bear to see kids suffering, and I really can't look their parents in the eye. It's not easy. And I'm in constant fear of the future. A future where me or Frank do not exist and someone is going to have to care for Em. I'm afraid of the future where Micaela learns by some cruel kid that her sister is different. I don't want any parent to have to fear these things, I guess that is why I was so sorry to hear about the new baby that has it. We shouldn't be made to feel sorry about having a baby with any disability. My Em is perfect to me. Perfect to us. Your idea of perfect and the perfect I live don't have to match. It's ok that we're not the same. My daughter doesn't walk at 14 months, but it's ok that yours walks at 10. Maybe the books and charts don't think so, but we do. Isn't that really all that matters?

I thank God for her everyday. I pray he protects them both from harm or ill will. I pray for patience for myself. I ask God to forgive me every time I question things around me. I pray He forgives me for not knowing him before I truly needed Him. I thank God for loving me. I thank You so much Lord for blessing me immensely and I thank you for the blessings you have in store for me. I thank You for my partner, my husband. I thank You for my growing business and the talent you sharpen everyday. I thank you, thank you, thank you Father. I cannot thank you enough.

aaaaahhhh. That feels better!

2 comments:

  1. I know i don't know you, but I've been scoping out your work and ran across this blog post. I'm so touched. It is terrible that people are so oblivious to the GIFT God has blessed you with. God didn't create some "test" for you by giving you a child with DS. He saw your compassion & mercy for the human heart. I wish your family the best & just wanted to tell you how beautiful BOTH of your daughters are.

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  2. Thank you Bobbie! Emily was 14 months when I shared this, she's 3 now, and she amazes me more and more everyday!

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