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One of my callings in life is that of "grief counselor". Ever since the loss of my precious and beautiful son, Gaven (pictured here), in 2002, I've gravitated towards others who live with grief. In the time following this loss, I joined and then began facilitating an infant-loss support group.
Then, in February 2007, the same day that I had by first OB appointment for my pregnancy with Lauren, I began a course of study that would lead me to a masters degree in counseling.
In the past few months, the grief agency for whom I was leading the infant-loss group,Gabby's Ladder, wanted to employ me as one of their professional grief counselors. I was both thrilled and nervous to take on such an endeavor.
Today brought me face to face with a dilemma that I could not have predicted or asked for. I was asked to call a mom who had lost a baby last month. We made an appointment for today.
After she filled out her initial intake I asked her to tell me about her baby and her loss. It is then that she told me that she had terminated her pregnancy because an AFP revealed that her baby might have Down syndrome.
It took me a moment to process this information. Did she really just say that after she found out she was pregnant with someone like Lauren she decided it wasn't worth it? It's hard not to take this personally, though I know that it wasn't and that as a professional, I need to stay on task; she is a grieving Mom who came to me for support.
As our hour and a half session progressed we explored her feelings and how she has dealt with this very difficult decision. I understand that this was hard for her. She delivered a tiny 20-week gestation baby and held her lifeless body for 7 hours. She has pictures, foot & hand prints, clothes and other mementos of her pregnancy and her preparation for this baby. But, she does not have her daughter.
I am not angry at her but I am angry at a World that diminishes a precious human life because it is not the thing that was expected. And, I'm angry that doctors still don't know how to tell an expectant Mom and Dad that having a baby with Ds is going to be a good thing. I'm also angry that this woman was tested for "abnormalities" like Ds and that in the name of making an "informed choice" she/we/everyone has to decide who is worth having and who is not.
What makes this issue even more compelling is the debate as to whether or not children with Ds are in fact a blessing or a "burden". An OB, who shall remain unnamed because I think she's stirred up enough bad will for herself to last a lifetime, posted something recently that due to the 'advances' in prenatal testing, there is the possibility of Ds being eliminated, or at least reduced. Alot of people think that would be okay.
Alot of the moms on my Ds board went toe to toe with this woman and asked her to justify her stance and her attitude that doctors don't need to tell expectant parents that having a baby with Ds can be a blessing. Instead, she believes it is only necessary to tell them what a struggle it will be.
When parents wrote in to tell her that "hey, we're doing this and it's great so please tell parents both sides of the story" she argued that we can only speak for ourselves and that we were biased and were basically fooling ourselves.
Am I fooling myself that continuing my pregnancy with Lauren was the best choice for her and my family?
Do I ever wonder what my life would have been like, never knowing Lauren?
Have we really been rewarded for choosing Lauren?
Was this a pro-life issue or was this just a matter of avoiding guilt and heartache?
Is the absence of guilt and heartache associated with a termination balanced by a feeling of peace and happiness?
All I can say is this: Lauren has blessed us in a way that I cannot really explain. She has brought new and wonderful people into our lives, she has forced me to reexamine my values and opinions, she has shown me how a simple gesture such as a smile or kiss can transform my mood and give me hope. She has a 'can do' attitude that I wish my other children would adopt and a determination that makes me want to fight so hard for her happiness.
Yes, Lauren is different than most children but that is such a good thing. I thank her for the joy she has brought to my other children and don't want to imagine their lives without her in it. They get such pleasure from being around her.
I realize that not everyone will get it: not everyone is cut out to say "yes" to a baby with Down syndrome. But, we did and I am oh, so happy about it.
Ada at Special Olympics, 2008
Ever since my first child, Ada, was a little girl I've wondered what the world looks like through her eyes. We are all unique and have our own vantage point, but some people 'stand out' a bit more because of their differences.
Ada has a small pixie-face, an open, trusting smile and long, beautiful fingers, all wrapped up in a body the size of a 10 year old child. She is 24 years old and has been this size since she was about 10! She has a rare from of dwarfism called Russell-silver syndrome, as well as autism. She is truly unique!
It took me a long time to forget how different she looked from other people because people just love to stare at her. She smiles, I try to.
My mantra was always this:
she is just as different from you as you are from her.
And, I believed it..and still do. Not everyone comes in the same, general size or shape and as human-beings, we have to accept this.
But, it's not easy for others to accept that my child doesn't fit their image of what a child should look like. Oh well.
I have spent countless hours worrying about Ada, crying about her challenges and trying not to take all of the comments and stares so personally.
Now, I have another little girl, Lauren, and again I wonder what information she is receiving from the world. In her mind she is charming, charismatic, cute as all get out, funny, interesting, curious, intelligent and loving. She can climb mountains, knock down mountains and conquer the world.
I know that not everyone is going to see that in her, just as not everyone recognizes Ada for the peaceful, accepting and fun-loving young woman she is.
When people see Lauren, some see the traits of Down syndrome...the almond eyes, the awkward walking style, the signing in place of speaking....and, they think about it what they will, based on their individual makeup.
I imagine that they place some sort of value on what they perceive as her most obvious attributes: Is she as cute as a typical child? How well is she doing for a child with Ds? How much time does her tongue spend outside of her mouth? How hard must it be for her Mom to raise her? Is it worth all of the trouble?
the answers:
Certainly!
Well!
Not much!
As hard as it is raising any child.
So much.
I have spent almost half of my life working as a mother and trying to get inside the heads of my children, especially my two daughters with special needs. I want to know what they know and see what they see. And, I want others to see in them what I see, though I know that will only happen occasionally and with people who make an effort.
I don't know how I got so lucky to be blessed with these amazing children; I just hope that I can someday be worthy of their praise.
Now, Lauren and Ada have one another to love and accept. They get this love and acceptance from others, but it seems right that they can enjoy it from their own unique perspective, without the weight and judgment that the world puts on them.
Growing up in the beautiful Park Hill neighborhood of Denver, I often felt and was viewed by neighbors as practically on orphan. At 6, my mother left me and my 3 siblings to pursue a life that did not include young, demanding children. I often came home to an empty house and all 4 of us young Gould's, more often than not, had to fend for ourselves between the hours of 3 and about 6:30 when my father returned from work. If it weren't for some amazing and watchful neighbors, I know that at least one of us would have gotten into some serious trouble.
When daddy Hal did come home, the day's punishments were doled out as he surmised the damage done on our ramshackle 5-bedroom home. Eventually, the wooden slats that made up the balcony porch were exhausted, either on our behinds or because we slid them into a hole that was created when a beam was removed in the space between the living and dining rooms. What was once a peaceful setting for reading Judy Blume eventually became a death-defying foray out of the back bedroom door.
But, then we (or most likely, I,) would go to the King Soopers' store with my dad. This was a welcome retreat as the store held 1: Food! 2: Time alone with my papa. My dad was and is an incredible cook. He learned to cook after my Mom left by studying books by James Beard and Julia Child. No ordinary slop would do for his children. Pizza ?- uh uh. Macaroni and cheese ? Hell to the Nah.
My father's journey through kid-friendly food was almost non existent. Instead we enjoyed meals that would make most modern-day parents balk. The food was both interesting and scary and while it was great to have a home-cooked meal every night (as in we almost never ate out), those meals often came at 9:00 p.m.- after hours of chopping, sauteing, carmelizing and waiting.
Some of my Dad's great recipes were: Green Chile (for which I can now admit to skimming from the crock pot from the time I got home from school until my dad returned from work - it was incredibly good), Chicken Cacciatore, Pasta Carbonara, Beef Stroganoff, these special eggs on toast, beef stew and cherry coffee-cake which would bake while he developed film in our basement darkroom . Really there were so many wonderful, delicious and incredibly time consuming dishes.
One of my dad's proudest moments which turned into one of his sourest (which surely makes for good stories later on) is the Great Salmon Aspic Debacle of '79. Aspic, in case you don't know is a food that is congealed in gelatin. This took days to make, preserve, set, whatever. My dad had us all sit at the table for the grand unveiling of this dish. We usually were pretty okay with what he made (despite my vegetarian leanings and my brother's vegetable-hating ways. So, he brings this dish to the table - a large 18" x 24" inch pan of indescribable gourmetness. As he mindfully cut fair-sized servings for each of his hungry children, we held our forks: ready but reluctant. I don't remember which of us started the lament on this particular dinner but it soon became a cacophony of anguish and complaint. Not a one of us could quite swallow this particular delicacy and I understand now that it was just "too good for children". Still, it upset my dad....
Anyway, back to the title of this blog post. I am a Mom to 5 children and sometimes I think I do a pretty good job of it. My kids know I love them and I can feel it in my gut when I need to spend more time with them or listen to them or comfort them. Not so, the little guy next door: one of Gabe's best friends. This little dude, whom I will call Isaac is a dear, intelligent boy who does not know what it means to have someone looking out for him at all times. His mother has a lot on her plate but she also leaves an awful lot up to chance. It is not unusual for Isaac to spend 8-9 hours a day at our house with nary an inquiry from Mom.
So, tonight, while Gabe and Isaac splashed and laughed in our little backyard pool, I talked to him about his life and he (at 6 years of age) confessed that his mom is gone alot and he doesn't understand why. Gabe mentioned that it's "a good thing he was us". Gabe is a very secure kid, sometimes extremely cocky, but with a soft-heart. He loves to welcome you into his world and surround you with his inclusivness (even if it is on his terms).
I know what it's like to be that child and I know that as that child you don't always know what is missing, or how to ask for what you want or what it felt like to be completly loved. Life is uncertain and you become accumstomed to that uncertainty. I don't do that to my kids and hope that I never will. Sometimes I resent the fact that I spend so much time with Isaac but on the other hand I know that it's important and not that more effort to have one more to feed, listen to or play with. I hope that someday he will return the favor to another child who may be slightly lost and alone.
As Isaac finally returns home and I finally get my own children into bed, I feel less smug and more relieved: both that we have made it through another day and that we showed others that we cared.
At times, having a child like Lauren - one with Down syndrome - is confusing. There is so much information 'out there' and I usually don't feel alone on this journey, but still, there is so much to consider, sort through and try to understand.
As with so many other things, there is such a wide range of developmental ability when it comes to a child with Down syndrome (or any child, for that matter). But, i'm asked on a regular basis questions to the effect of "how smart is she going to be"?
No one actually asks that but that is what they want to know - as if I know. I don't know how smart Lauren is going to be any more than I know how tall she is going to be, what her favorite song is going to be 6 months from now or whether she'll prefer flip-flops over closed-toe shoes.
I do kind of wish i knew though...I find myself torn between this feeling of believing that the more we work with her, the more therapy she receives, the more we challenge her, the more capable she will become and another train of thought that tells me that she is going to become who she is meant to be just by being with us.
I read about other kids with Ds who seem to be doing so well and I am both ecstatic and jealous. There are many people with Ds out there doing exciting and remarkable things and I could not be happier about that. Sometimes, Lauren is that child doing so well and other times she isn't. I know that she is not going to be the brightest child with Ds that there ever was, and I also know that she is not going to fail. I wish I could just be all right with whatever is to be..perhaps the fact that it is such an unknown is what confuses me.
What do I want for Lauren? I want her to know that she is accepted by her family and friends and that she does not have a bunch of limitations placed on her by others. I also want her to know that she is okay just the way she is: she doesn't have to have the biggest vocabularly or the fastest backstroke....she just has to be the best that she can be.
Tonight at Wendy's we met a father raising a teen with Ds and he told me "don't let others decide how well she will do". That's good advice...I hope I can follow it!
