Monday, June 24, 2013

The Woman Who Let Her Son With Down Syndrome Starve

Recently I saw a friend ask a question on Facebook- "When does my child with Down syndrome start to be a blessing? This is hard. This is not what I signed up for. When does the blessing part start?"

And without judgment, I understood exactly what she was saying.

There is this movement going around selling the image of children with Down syndrome as angels, blessings, gifts, and a sprinkling of fairy dust down onto your life.

In one sense, I totally understand the reason and the need for this advertising. The abortion rate for a child with Down syndrome is extremely high. I'm not going to say 90% because that number has been proven incorrect by recent studies. But let's just say the number is still staggeringly high because of misinformation, outdated ideas about Down syndrome, and fear as to how this will affect their family's life in the long term.

Therefore: the campaign to sell Down syndrome as a rockin' accessory that everyone should want!

And the world smiles and feels all warm and happy inside that the disability that used to be perceived as a death sentence is now something totally awesome!

But then, stories come out about a mother who so badly neglected her 32 year old son with Down syndrome that he died a slow, painful death of starvation and countless other medical issues that were never addressed. Her main concern when the ambulance came for the skin and bones of her son? That she would continue getting his social security check every month.

You can't help but wonder- where was her sprinkling of fairy dust? She had a child with Down syndrome. Why didn't her life transform into magical awesomeness of love?

This story makes me absolutely sick and heartbroken trying to imagine what was going through that mother's head to allow this treatment of her son who so badly needed her and to let it continue for so long. It's inhumane. It's disgusting. It's beyond sickening.

The world then looks back at the information from the campaign about the incredible magic of Down syndrome and wonders which is the true story.  A fountain of awesomeness? Or something that is so horrible that it's OK to treat that person as garbage?

I would venture to say that it is neither. It is exactly the same as parenting any other baby. There will be parents that enjoy the days, grimace at the rough moments, laugh, celebrate, work through each day with sacrifice and love, but relish in the good and find this parenthood thing to be life-changing in a wonderful way.
There will be those who aren't willing to make the sacrifices necessary. There will be those who always want to put themselves first and refuse to acknowledge that their life must change to insure the well-being and happiness of the child in their care. There might be those that just aren't capable of providing the sacrifices and life necessary to insure a happy childhood.

These horrific stories that show up in the news are a direct result of the choices of the parents- NOT the inherent worth of the child.

Whenever I say that having a child with Down syndrome is "exactly the same parenting as any other baby" I always hear well intentioned comments shouting NO IT'S NOT. To that I say- "parenting" won't be the same for any two children. Carter has struggles that frustrate me. Addison has struggles that frustrate me. They are totally different frustrations. It is frustrating to me that Addison will almost be four when this baby is born, but won't be functioning as a four year old to help out with the new baby. It's frustrating that she isn't potty trained yet. It's frustrating that she won't communicate with me. The first year of her life with the surgeries, oxygen, and g-tube days were very, very hard and oftentimes I wonder how we made it through.

But we did. And we continue to. Because parenting is all about sacrifice and loving through every day no matter what that day holds- whether surgeries or a play date. This is required of me for Addison AND Carter. It just means different things from day to day for each of them.

But I guess my point it- I wish that the campaign to fight against the abortion of babies with Down syndrome would stop swinging so far to one side because it's not fair to those parents who wake up with a 12 month old with Down syndrome who isn't even close to walking or talking, and they wonder when the blessing starts. I wish the campaign would describe Down syndrome as exactly what it is- a life. A valuable, important, human life that should be treated with dignity and respect.

Why can't we just say that it will be hard- but well worth it? If we say it will be hard, will people immediately jump to the "therefore that child deserves death"? Tell, me- what child is easy? What child has a guaranteed future? What child doesn't cause frustrations?

My daughter who has Down syndrome is not an angel. (BELIEVE me.) My daughter who has Down syndrome is not a sprinkling of fairy dust down onto my life or any more of a blessing than my son is who does not have Down syndrome. Her personality does include a lot of awesomeness and fabulousness but that's not because she has Down syndrome. It's because she is a little girl who loves to LIVE and experience the small pleasures of life. Every individual with Down syndrome will not have the EXACT SAME PERSONALITY. There will be a wide span of all sorts of temperaments because every individual with Down syndrome is HUMAN and unique.
To my friend who asked "When does the blessing part start" this is what I say:

As you go through each day, putting in the motions of mothering and wondering what the big picture will be, one day you will be surprised by the strong emotion that overwhelms you. This strong emotion will include part love, part disbelief that this is nothing like you imagined it would be (in a good way), and part extreme happiness that this is your life. Not everything will be shiny and amazing- but it will all seem somehow right. And good. And a blessing. I experience this equally with both of my children- at different moments in different ways.

I am not going to pretend that I know what it's like to parent an adult with Down syndrome. I don't. Parenting a 3.5 year old is an entirely different story. I recognize this. But I understand feeling overwhelmed. I understand not being able to handle something or cope. I wish this mom would have sought some help. I wish she would have realized that there is no shame in saying - "for the good of this child, I should not parent him" or "I need more of a break"- and get him the care that he needed. But there is shame in killing that child- day by day, missed meal by missed meal, refusal to care, refusal to love.

If any of you reading this blog ever feel overwhelmed in parenting a child with a disability- there is no shame in seeking help. Please don't take your frustrations out on your child. I get help. I have a PCA (Personal Care Assistant- funded through the state) who comes several times a week to give me a break. When we were overrun with therapy and doctor appointments, I would not have made it through without our PCA (who is wonderful). I do not pretend to be superwoman who can do it all. I am a selfish human who sometimes struggles with the amount of care required from me. A short break and a new perspective upon my return helps me more than I can say.

But even though at times it is overwhelming, even though at times it is hard, even though at times it is frustrating- I can think of no better way for me to spend my life than to nurture the lives of my two children. BOTH of them- equally deserving of life and love. Addison isn't more deserving than Carter because she is "special"...and Carter isn't more deserving because he doesn't have Down syndrome- they are both human, unique, special in their own way. Neither of them have a guaranteed future. Neither of them are guaranteed a tomorrow. But what I can give them is another day of building memories, love, and the care their bodies need to grow and survive. That's all that's required of me. One day at a time.

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