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.

 

20 Ways To Not Piss Off Your Parenting Partner

Being a parent is hard work. Being married to/living with a parent is also hard work. So here are a few handy tips based on my personal experience (and some from my friends) to help navigate the tough/busy/emotional times, balance out the domestic to-dos, and avoid frustrations, snark and general spousal pissed-off-ness. Note the below applies not just to husbands, but also to wives (like me). Read on, for marital and domestic bliss awaits you.

  1. Don’t make assumptions. About anything.
  2. When opening the fridge, take note of what’s not there, and add those items to a shopping list (physical or mental).
  3. When popping into the store, think about what’s on the physical/mental shopping list, and buy them. Heck, buy two.
  4. Do not question money or time spent at the hair or beauty salon. Budget for it in the family financial plan and tell her/him she/he looks lovely.
  5. Check with your partner before making purchases over a certain amount. Pre-agree what that amount should be.
  6. Don’t just talk about scheduling items; go ahead and put things on the family schedule. Physically or digitally. Just do it.
  7. Participate in meal planning (see items 1 & 2).
  8. Share homework checking and backpack management duties.
  9. Schedule regular alone time or time out with girl/man friends. Then do item 6.
  10. Don’t contribute to the general messiness and disorder of the house. Or at least try not to. And if/when you do, pick up after yourself. See item 16.
  11. Always be thinking/doing laundry. It’ll avoid those “I have no underpants” situations. It might even get you laid.
  12. Have assigned duties/roles (e.g. he handles finances/bill paying, she ensures kids has an adequate supply of clothes/shoes that fit even when they are growing like weeds which is like always.)
  13. Be united in your kid disciplining approaches. Kids can see through any weaknesses in a nanosecond and will use all and any leverage they can.
  14. Don’t make assumptions. I know, I know I said that before but, boy, it is everything.
  15. Tune in to each other’s work/stress load and proactively offer to take the kids out or handle a chore you don’t usually handle. Even better, take the initiative: book a babysitter, make a ressie and take him/her out for the evening.
  16. Just do it. Don’t wait to be asked. Like, if you see a mess.
  17. Listen. Put down your smartphone and listen.
  18. Watch/listen for unspoken cues. Like sighing, eye rolling or, you know, door slamming.
  19. Quash the temptation to snark about each other in public forums; instead celebrate each other on Facebook. (Snark about your kids instead. At least until they are old enough to read or use FB themselves. Cos then you are in trouble.)
  20. Never EVER assume (or state the words out loud) that time spent alone at the grocery store is the equivalent of real alone time.

(Am printing this off and putting on my bedside table to review on a regular basis.)

(Actually, am printing another one off and putting it on his bedside table too!)

 

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

 

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