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.

 

The Gene My Mother Didn’t Give Me (Now With Video)

(This is the story I read at the recent, amazing Listen to your Mother show)

Today I cooked for my family and nobody died.

It’s always a good day when my cooking doesn’t maim, injure or kill. Because every time I cook, I am convinced that someone will turn pale, clutch his or her belly, foam at the mouth and then sprint for the bathroom. Or just keel right over.

Needless to say, I am not a natural in the kitchen. I try. After all, I’m a Mom. This is part of the job description, right? It’s supposed to be part of my maternal DNA.

I definitely did not inherit the cooking gene from my Mom. She’s the world’s greatest cook. I yearn for her meatloaf and cheesecake. When I’m sick, her chicken soup is the only medicine that heals. Her trifle is legendary in England. I have fond memories of helping her measure and stir, as she’d prep and bake. Osmosis, however, failed me.

Like me, she wasn’t actually a natural-born cook. But once married, my Mom experienced a culinary metamorphosis, blossoming into this competent, fearless creator of deliciousness. Hoping to nurture similar qualities in me, my parents sent me to an all-girls school. Alas, while I did well academically, my grades for “domestic science” were well below average.

Fast-forward to my 30’s. One evening, I invited my soon-to-be-fiancé over to my place, intent on making a romantic meal. I prepared the only dish I really knew. He wanted to hang with me in the kitchen, sizing up my qualifications for future wifedom, motherhood and domesticity. But he quickly recoiled when he saw that every ingredient was either from a can, a carton or the freezer. Mortified, I banished him from the kitchen.

Did I mention he’s a professionally trained chef? No pressure, right? Well, despite his horror at my pasta mush, he still married me. Maybe he thought my culinary skills might emerge, like they had for my mom? Fortunately, our relationship is based on many other qualities, like good humor and forgiveness.

These days, I can be inspired by a recipe, game to give it a go and expose my family to something new. I’m all about Pinterest. My “recipes to try” board has more than one thousand pins of culinary delights. I’ve attempted about three of them. My success rate is, well, low. Usually the end result looks nothing like the picture. It might taste good but my kids usually turn their noses up when served something that looks, smells and tastes suspiciously different from chicken tenders or mac and cheese. My husband, bless him, praises my efforts, chews his meal with enthusiasm and makes all the right “mmmm” noises. He coaxes the kids to try at least a bite. The silver lining? Plenty of leftovers.

It wasn’t always this way. When they were infants, they ate everything I cooked. Yes, cooked. I was really really good at making purées. Because, boiling and mushing stuff, that I can do – like a pro. And, since I wasn’t able to nurse my kids when they were infants, preparing food this way made me feel like mother of the year, all wholesome and nurturing. I was an over-achiever in the purée department; my fridge filled with baggies of green, yellow, even purple frozen cubes of homemade nutrition. My kids willingly consumed vegetables that today are considered devil spawn. Beets. Parsnips. Spinach. Even black beans. It was good while it lasted.

I’m happy to tell you that one of my cooking adventures has in fact become the stuff of legend on social networks. Allow me to introduce you to the Hippo Cake.

It was Rosh Hashanah and like all Jewish festivals, it’s celebrated with food. A few days before, I called my mother and asked for her wonderful honey cake recipe, thinking it was my maternal duty to bake one for my family at this auspicious time of the year.

I’ll never know what really went wrong. Did I confuse the measurements? Maybe I omitted the baking soda? Perhaps the oven was the wrong temperature (after all, British recipes are in Celsius not Fahrenheit)?

Never has a photo posted on Facebook received so much attention. “What is that?” was the most frequent comment. “Um, it’s a honey cake,” I’d respond. “It looks like a hippo,” quipped someone and everyone resoundingly agreed. And so the notorious Hippo Cake was born. Every year now, friends and family clamor for me to re-post the Hippo Cake photo on Facebook, claiming that the holiday cannot properly commence until I do.

So this is what it comes down to. I can bake cakes that look like animals and purée like a champ. Evidently, as a mother, cooking is not my strongest suit. But at least I haven’t killed anyone. They say genes can skip a generation, so I’m hoping my kids will inherit their quick wits, good looks and self-deprecating humor from me – and their cooking skills from their grandmother.

The infamous Hippo Cake

The infamous Hippo Cake

LTYM cast

The wonderful cast of #LTYM Boston – May 9, 2015

 

The Listen to your Mother Show: A Preview

What’s the one thing we all have in common other than, you know, breathing?

It’s mothers.

We all have – or had – mothers. Be they birth mothers, adoptive mothers, foster mothers, step mothers, grandmothers. Some families have two mothers. Some families have two fathers.

Many of us are, or were, mothers. Dealing with all the highs and lows that come with the title.

Some of you aspire to be mothers. Some of you became accidental mothers. Some of you really don’t want to be a mother. Some of you did, but life took a different course. Some of us are working mothers; some of us are stay at home mothers. Some of us are married; some of you aren’t. Some of us are divorced or separated from our partners. Some of us have infants. Some of us have toddlers. Some of us have teens. Some of our kids have grown up and become parents themselves. Some of our kids are healthy; some have disabilities.

We are all sons and daughters. We all have or had relationships with our mothers. Good, bad or otherwise. Some of us aspire to be like our mothers. Some run in the opposite direction.

Motherhood is a universal reality – wherever you fit in this spectrum.

On Saturday May 9 at 2pm, 12 women from in and around Boston will step up to the microphone at Boston’s Old South Church to share their stories of motherhood. These remarkable, talented writers are daring. They are strong. They are eloquent. They are nervous. They are entertaining. They are emotional.

I’m one of these women. And I can’t wait to share my story with you.

I hope you’ll attend this amazing event. I guarantee you’ll be riveted. I fully expect you to shed a tear. I’m hoping you’ll laugh. You may even learn something. I know that you’ll see reflections of your own story in every shade of the rainbow of motherhood and you’ll be grateful that you came.

Buy your tickets here or at the door.

See you there!

Giving motherhood a microphone

Boston’s Listen to your Mother show is on May 9

 

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