Imperfect Model

by Kerri Ames

(The following was written and performed by Kerri for the recent Listen to your Mother Boston show. It is republished here with Kerri’s permission. You can – and should – read more on her blog (Un)Diagnosed and Still Okay.)

Photo credit: Amy/Emily Photography

Photo credit: Amy/Emily Photography

I used to pity parents whose child had a disability. I would see them in a restaurant, a movie theater or other public outing and think to myself: “Thank God that is not my child”.

I used to say the word, retard. A lot. As in “I’m so retAHded”, “stop being retahded”, the list goes on.

I would think to myself, God how awful for them. The parent’s whose child was in a wheelchair, had a feeding tube or a breathing tube. Wondering what made them decide to let the child live.

I would see a child having a temper tantrum in the grocery store and whisper to my husband, why don’t they just smack that kid.

I had my first, perfect child and became the paragon of how to be a working mother. I knew the answers to putting the baby to sleep at exactly 7pm. I let her cry it out and slept through the night. I had a schedule. I was that model working mom. The one you read about in magazines. The one who “does it all”, showers daily and who kept a clean house. Abby was well behaved, well-traveled and the child you could take to any event.  I could leave her with anyone for any amount of time. The girl, who sat quietly in restaurants, did her school work and reinforced my thoughts that “those other” children were just a result of poor parenting.

Five years later, my second daughter was born.

At just four days old I found myself in the NICU as I begged the doctors to do anything to save her life. I didn’t question brain function. I didn’t wonder if we were taking extreme measures. I saw my baby and feared she wouldn’t come home.

I bargained with God.

I offered my soul. I told him I could handle a retarded child. Just please, God, let my child live.

We came home with a beautiful little girl. One who vomited every 20 minutes, one who would only sleep if she was snuggled on your chest and who cried. A lot. If she was awake, she was crying, unless she was being held.

So I held her.

Bridget wasn’t achieving her milestones and the doctor ordered testing of her brain. We knew she was different. That she wasn’t the perfect child you dream. They performed genetic testing and told us she had a genetic mutation that had never been discovered. The testing revealed a slow brain pattern.

I asked, “Is my daughter retarded?” and I was gently told, “We don’t use that word anymore. But essentially, yes.”

The best advice I received that day was to never put limits on Bridget. Do not limit her with labels or assume she would not achieve greatness. That perfection has a new meaning.

One of the greatest things Bridget has achieved is changing the world view most of us have. We have more empathy for that mother in the grocery store. We have a smile for the parent who is pushing their child in a wheelchair. We buy a glass of wine for that mom in the restaurant. We look at our disabled child and think, “Thank God this IS our child”.

We have banned the “R” word in our house and in our lives.

Bridget has changed the lives of not just her parents, but her community. She is the mayor of her school. She is hugged in the grocery store. She has allowed friends to be comfortable asking questions. Hard and difficult questions just six years ago I would have been embarrassed to ask.

When I was told my daughter would be developmentally disabled, the world I knew was destroyed and recreated. I resolved that this would not change the way I would nurture my daughter, that she would be provided the same experiences and opportunities as her sister. By not placing limits, Bridget has created an advocate in her sister.  She has given an 11 year-old a purpose and a drive. One who includes her sister in everything because, in Abby’s words, “that is what sisters do”.

I have grown in so many ways since that first day in the NICU. I will educate when someone says retard.  I have become knowledgeable in any treatment, medication, therapy or doctor who can positively impact Bridget. It was through motherhood I learned the value of friendship, and which of those friends to leave behind.  Being Bridget’s mother has allowed me to find my voice.  We have created a village of support that includes therapists, friends and families who understand that life with a child who has special needs is still a fantastic life.  A life where the smallest accomplishments are celebrated.  A life where we cry and laugh with equal measure.

I am no longer that perfect model of the working mother who can do it all. Motherhood trumps meetings.  I frequently go a day without a shower, happy that I managed to brush my teeth. My house is rarely clean, but it is full of life.

Six years ago I bargained with God to let my daughter live.

It took being Bridget’s mom to show me what living was.

Kerri Ames is a working mom from Cape Cod with her husband, two daughters, untrainable dog and a bunny who was supposed to live outside. Kerri writes about raising two children, one whom has a rare genetic disorder, with humor and honesty at (Un)Diagnosed but Still Okay. Kerri possesses many titles: mom, wife, advocate, business manager, writer, trail runner and lover of wine. Her passion is advocacy for all children to be accepted for who they are regardless of ability. Kerri believes you can conquer any challenge in this world with good friends, family and a bonfire on the beach. She acknowledges that without her village of support her life would be infinitely more difficult.  You can follow Kerri on Facebook and Twitter at @undiagnosedbut.

 

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