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The support group didn't cover this part. |
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Well, it’s not really a secret. Anybody with half a brain can see that my son has Down syndrome. Of course, anybody with Down syndrome only has half a brain. Ba dum bum. (I can tell those tasteless jokes because believe me, I have earned the right to.) No, the Down syndrome thing is not the secret. Although I did try to keep that a secret for awhile. More about that later. The secret is this: sometimes I wish my kid was somebody else. Or somebody else’s kid. (Did I just say that out loud?) Eric is four. He spends his days this way: 1) Eating and rooting through the cabinets to find more things to eat, 2) Systematically throwing our large collection of lovely wooden Waldorf toys (they make great dents in the walls), 3) Gazing sort of blankly at the television, the one I de-Waldorfed enough to ignore half the day while it plays mindless PBS kid’s shows and endless Scooby-Doo reruns. And please do not ask me the words to the songs on “Big, Big World,” because, sadly, I know them. And I often find myself singing them. Eric got on his bus. My fingernails were bitten stubs. I stood outside the bus, trying to catch a glimpse of his little face through the glare on the window. He was waving. “Baah!” he yelled, smiling. Bye. He probably didn’t know where he was going. When Eric was about six months old, I began having pains in my chest. “My heart hurts,” I told my now ex-husband. I hate doctors. They never find anything wrong. My heart hurt, it hurt for weeks, and there was nothing to see, nothing to detect. It just hurt, and no one could tell me why. I wanted something concrete to point to, a reason to continue ignoring my reality. I knew why my heart hurt. At Eric’s birth, a gentle quiet birth in a huge warm tub of water, the midwife looked at me sort of funny. She glanced at Eric again, looked at his hands, his face, then gave me another intense look. “He has Down syndrome.” From somewhere an anvil dropped on my heart. My brain stopped. The Universe held its breath. Not my baby. He was fine. A little small, but so what? I didn’t eat during the pregnancy, didn’t want to gain weight (didn’t want to be pregnant, but we’ll ignore that a moment). I wore my regular jeans buttoned below my baby-belly and everyone was so admiring. So he was fine. He looked just fine. He was fine. By the time the results of the genetic testing came back, I knew there was something different about him. Sort of. The holistic practitioner I took the other kids to didn’t want to treat him. I heard phrases like “failure to thrive.” Everybody was so interested in weighing him all the time. Five pounds? So what? All my babies were small at birth. He’s fine. The Ex suggested we not tell anyone outside the family, and he meant just himself and me, that Eric had Down syndrome. I couldn’t tell my parents, my friends. I couldn’t even tell Eric’s big brother and sister, 8 and 4. I couldn’t tell myself. So when my heart began hurting I went to the doctor anyway. Even though I knew. Up until a year and a half ago when Eric started riding the short bus and coming back home, more himself every day he was away from me, I thought I had the thing licked. I had won. I loved that boy, his sweet face, his round belly, his eyes. He was mine. I loved all his impossibilities. But sometime since then, something happened. He’s not the same boy. I’m not the same mom. I look at him, as he commands me to turn on Curious George (“T.B”, he yells. “Gah!”). He looks back at me with his empty Down syndrome eyes. Who is in there? I can’t tell anymore. I thought I knew. But he’s not a baby any more, no longer nestled in my arms in a sling next to my broken heart. He’s a boy who digs deep behind him and then smears his own poop on the T.B. while he stands 4 inches away from it watching Curious Gah. He’s a boy whose communication is limited to pointing at the bananas on the counter and then himself, smiling and nodding in encouragement. He’s a boy who has given up. He can’t be more. He can only be Eric. And I wish I knew who Eric was. I think he incised it on my heart once, and sometimes I still feel the scars. | ||
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1. Trish
May 22, 2008 05:30
This is heartbreakingly beautiful. Thank you.2. Kristy Alley
May 22, 2008 10:32
Thank you for your courage and honesty. I'm sure there are so many parents of kids with special needs out there who have been needing to know that they aren't the only ones who have those thoughts and feelings. Hopefully they will find their way to you.3. Kymberly
May 22, 2008 10:46
Honestly and poignantly written.4. RubiaLala
May 22, 2008 11:50
Hugs.5. Jessica
May 22, 2008 12:21
It was difficult for me to hold back the tears while I read this at work.Eric will always be your baby.
You have the right to your feelings and your admission will allow you to continue this journey realistically and compassionately.
6. Amy
May 22, 2008 15:16
It's not easy. I know. If you haven't already, join a support group. Really. It will help.7. Amy
May 22, 2008 15:18
Oh my. Of course I did not read the second line of the title of this post! Gah! I'm sorry a support group isn't helping. I can only offer that kids, no matter what their abilities, go through different phases... and although trite: This Too Will pass.8. Dawn
May 22, 2008 16:18
you rule my friend.9. Allison J
May 22, 2008 21:33
I have a younger sister, Rebecca, who has DS -- she is now 24! She is very high-functioning. She is comical, silly, dramatic, and wonderful.My heart aches for you. Though Rebecca is not my child, the love, concern, worry, and heart break is a daily occurrence for me.
My husband knew from day one that I could not have a child with DS -- knowing and caring for one covets your entire heart, and brings more pain and anguish that many could not imagine.
My parents did not know ahead of time that Rebecca had DS -- it was a devastating shock. They contemplated adoption. Then my mother was presented with a poem that told her everything she needed to know. While we are not a religious family, this poem has served in comforting all of us -- I hope it can help you in any small way.
HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow
“Accomplishment she may not show.
“And she'll require extra care
“From the folks she meets down there.
“She may not run or laugh or play
“Her thoughts may seem quite far away
“So many times she will be labeled
“'different,' 'helpless' and disabled.
“So, let's be careful where she's sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they'll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven's very special child.”
10. MeriNW
May 23, 2008 00:51
Wow, Karen, I understand a little why your heart hurt. Parenting "normal" kids is hard enough. I imagine it doesn't always work some days to tell yourself, "we chose this, he and I." Some days are just hard. Especially imagining who Eric is and what he would tell you, if he could. I know I used to look into my babies' eyes when I was nursing and say, "I wish you could tell me what you are thinking." With Eric, it isn't that easy.11. Cyn
May 23, 2008 18:13
I wish more women felt more comfortable being honest about all the feelings we have as mothers... I wish it was safer to be honest about all the feeings we have.Beautiful piece.
Cyn
12. Special Needs Mama
May 23, 2008 19:41
Beautiful.13. Queen Bee
May 24, 2008 12:58
Hi! I actually just intended to read and run as this post had been recommended to me but I felt the need to reply before I go on with my day.You see, I too have a challenging child. My son doesn't have Down's, although his sister whom I lost between my two boys at five months gestation did have it (and yes if she would have survived I would have kept her without question). My son has ADHD/ODD. It's a different sort of challenge in that during the calm moments I can almost forget his issues, but when they hit it's like finding out all over again. It's frustrating to see other kids that comply with their parents regularly, don't throw shoes or major attacks because they have to cease what they are doing, and those kids that don't do 'weird' things that annoy others (myself included). As I watch him on the soccer field on a good day I'm so proud, but on a bad one I want the ground to swallow me whole. He's one of the mild ones as they would say, but just because it could be worse doesn't mean it isn't hard all the same. I empathize with your struggle, because there are times where I just want him to be normal too. I have to pick through the thorns to find the roses some days, but in the end he is mine and he is beautiful.
14. Whit
May 24, 2008 19:13
Very touching, Karen.15. Kit
Jun 10, 2008 16:23
He will always be your baby Karen, and it WILL get better. They learn, but it takes a lot longer. My brother has a severe case of DS but he still came into his own and has his likes and dislikes. He loves Batman and Country Music, all of it. He'll be 54 next week and does assembly work at a Workshop. Have faith, there is a future.16. ickimum
Jun 12, 2008 05:23
Karen part of me wants to hug you and tell you it will be fine and part of me wants to help you see the miracle you have.I too have a child with DS he is 9, 4 is a bad time in the life of a child with DS IMO, somewhere between baby and toddler really. I know you really do not want to here this right know but IT DOES get better I promise, my son is NOT high functioning in language, or schooling, BUT he has spunk, he is my boy, my miracle, my light. I also have 3 other living children. And wouldn't hesitate to do it all again.
I guess part of the journey is letting go of our dream child, prefection maybe.....and seeing the miracle in little things, sometimes frustrating things, sometimes those moments are fleeting, sometimes they are so small its hard to see them, but hang on, the ride will take you to places you never imagined and if you open up to it, joy and untold happiness............
17. Robin
Jun 26, 2008 11:34
It is what it is, Karen. It's not about you. Now that Eric is not a baby anymore you have started to see differences. Since you have realized that "Eric can only be Eric", not who you wish he could be, maybe now you will look into his eyes and see who IS in there, his true self. My oldest, Sloan, is 15 and has DS. I have always seen more of who she is through those eyes than anyone I have ever met. Take Care.18. Lexie
Mar 13, 2009 06:26
The souls who are brave enough to place themselves in bodies with Downs are just a step away from true angels. They mean no harm to anyone and just want to be loved.Eric loves you. In his heart, deep inside, I know his heart floods with love for you- his mommy.
Take care.
Big Smiles!