I decided to go. Emily & Aidan went with me. There were about 10 moms there with their babies. I was welcomed with open arms. I shared my story with some moms & they shared theirs. Many had no idea their baby had Down syndrome until their baby was born. I could relate to the shock. We talked about many different topics: Heart defects, Cardiologists,
Early Intervention, Developmental Pediatrician, Sign Language, Speech Therapy, Physical Therapy, Special Education.....The list goes on & on. My vocabulary is growing. Can I learn a different vocabulary please?
All of the babies were beautiful!!!!! Many looked like Emily with the typical Down syndrome characteristics. A few did not look like Emily at all. It was heartbreaking to look at the babies & think about what challenges they may have in life. It was heartbreaking to look at my Emmie & realize that she is now a part of this group. She is going to have challenges in her life. This is not what I dreamed about while I was pregnant. I never thought I would be a part of this "club". Sigh....
I enjoyed the company of the other moms & I appreicated their stories, their strength & positive attitude. I left the playdate with mixed feelings. I felt so grateful to have a place to go where everyone understands. On the other hand, I felt so sad. I don't want to go on this journey. It breaks my heart sometimes. Why can't my child be normal? Why does she have to look that way? Why does she have to have challenges? We already have a child with special needs. Why another one? It makes me angry!!!!! Why did God give us Emily this way? I know, I know....We are the perfect family to care for her. We are strong & we can help her. She will make a difference in our lives & the people around us. People with Down syndrome are so happy & so special. Emily will make you a better person. You are strong, Lacey. Your can handle it. Blah, blah, blah...I've heard it all. Yes, I believe those things, but sometimes it's just not what I want to hear. The people saying those things have their normal/typical kids. It's easy for them to say those things because they don't have to live this life. I know everyone means well & sometimes people just don't know what else to say. Thanks, but no thanks. Let me have my pity party please, at least for today.
I spent the rest of the day feeling mostly sad. I felt sad for Emily & the challenges she will face. I felt sad for her because people will probably make fun of her & the way she looks & acts. I felt sad because life shouldn't be so hard for her. I felt sad for us as a family & that we have to take this path in life. I felt sad for Aidan because his only sibling has Down syndrome & he will never know what it's like to have a normal sibling. I just felt sad.
Sometimes I just need to feel sad. I need to feel sad & mad in order to feel happy again. I need to let myself feel those dark feelings. It makes me feel better later on. Some of what I am writing may seem harsh, but it's real. I can't pretend like those thoughts don't exist. My daughter Emily has Down syndrome. It's not what I wanted for my beautiful daughter. I am scared, angry, disappointed. I didn't ask for this. If I could, I would take the Down syndrome away from her,. Would I, really? If I did, then Emily would not be Emily. I love Emily. Another sigh.....We'll get through this. It's just another part of the rollercoaster ride. Tomorrow is another day & we will take it one step at a time.
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Down Syndrome Creed
My face may be different but my feelings the same.
I laugh and I cry. I take pride in my gains.
I was sent here among you to teach you to love
as God in the Heavens looks down from above.
To Him I’m no different; His love knows no bounds.
It’s those here among you in cities and towns
that judge me by standards that man has imparted.
But the family he’s chosen will help me get started.
For I’m one of His children so special and few
that came here to learn the same lessons as you.
That love is acceptance; it must come from the heart.
We all have the same purpose though not the same start.
The Lord gave me life to live and embrace.
And I’ll do it as you do - just at my own pace.
I love your honesty! We went on vacation last week with our little 3 month old Max and his oxygen tanks. Yep, we were the only ones on the beach with tubes and oxygen tanks. It's taking a little getting use to for sure. I needed to go to the grocery store today, but just didn't want to lug the oxygen tank along, so we didn't go. There's always tomorrow. I hear ya on that one :)
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