THIS IS A GUEST POST about Angelman Syndrome and part of what I hope will be a series here for parents of children with disabilities and special needs. Have an idea for a guest post that might help another parent? Please email firstname.lastname@example.org
I used to think my family was among the less-than-lucky few gifted with big challenges.
We have Anna, a 17-year-old toddler with Angelman Syndrome, who was “disruptive” long before the term became popular.
Special Challenges With a Special Child and How We Survive Them
However, as I listen carefully to everyone around me I find that the semi-perfect families, the normal ones, are the true exceptions to the rule. Almost everyone has a burden they are bearing. Lists are lengthy but can include family members with severe addictions, systemic health problems, gross moral failings, mental illnesses, genetic syndromes, crippling financial problems and more.
Realizing this puts a damper on my pity party because having a special needs child with Angelman Syndrome isn’t the exclusive club I once thought it was. There are some common threads that connect the variety of challenges we moms face though.
Being Alone When I’m Not Alone
My Anna is engaging, interactive and very socially aware. She is a delight. But, being out with Anna is isolating.
At events, parties, dinners, tea with family, close friends, strangers, no matter the occasion or company, my daughter demands my nearly exclusive focus.
The moment I engage in conversation, she stands up and leaves. She must be followed, managed and protected. If I ignore her and let her “do her thing”, she heads for the kitchen of the restaurant, rummages through all the drawers in nearby bedrooms, pulls the fire alarm, steals a hotdog from a small child; her creativity is boundless.
Worry About Escapes
Our house is more secure than most banks. We have keypad locks on the doors to the kitchen. All the doors to bedrooms and bathrooms are kept locked. And that’s just the inside.
Doors to the outside are all locked, the windows are locked and in many cases, screwed closed. This is of course to keep a little one in, not so much to keep others out.
Despite our best efforts and well trained family members and friends, Anna still escapes. One morning at 7:00am we woke to find her missing. So we started searching the neighborhood, made a call to the police, and they said “we may know where she is.”
It turns out she was picked up a mile and a half from our home at 4:30am, barefoot and in her night clothes, on what is a very busy 4-lane street, except maybe at 4:30am? Someone had taken her to the hospital 2 minutes away in an ambulance, at a cost of $1,200 mind you, where they gave her fuzzy socks and a teddy bear.
While we were terrified, she was perfectly unscathed and her smiley self.
After finding out she was safe and healthy, we were seriously afraid someone in the city bureaucracy would falsely accuse us of neglect. Fortunately that didn’t happen, probably because mom, dad and brother all showed up in force to retrieve her, leaving no doubt she was loved and cared for.
For those of you wondering how she escaped, she managed to get a window open that we thought had been rigged to not be open-able.
Keypad locks are on the kitchen doors for a reason. Left to her own devices Anna has emptied literally everything.
This includes full jars of molasses, large tins of flour, sugar, every container of spice in the spice rack, in fact, every container of everything, milk mayonnaise, eggs, butter, cereal.
Over the years we’ve seen the messes evolve. They are less random and more intentional. She’ll pour all the oats, milk and cereal on the same area of the counter or floor, like she is making a cake without a bowl or pan. (When she pours it all in the junk drawer it is slightly more depressing.)
Finding Peace in My Soul
I have come to understand that this is my life. It is much more productive to make the best of this life than to seek another one. In every challenge there are opportunities. Creative messes make hysterical photos to post on Facebook. Being a veteran mom of an Angelman Syndrome child gives me countless opportunities to encourage other moms in similar situations.
Angelman Syndrome is a genetic disorder that mainly affects the nervous system. Symptoms often are noticeable by one. Short attention span, feeding problems in infancy and seizures are common symptoms too. Occurs equally in males and females. Roughly 1 in 12,000 -20,000 people are affected.
Remember how fun it was to laugh at the daily antics of your toddler? Well I get to do that for a lifetime. And I’m not being sarcastic here; Anna makes me laugh and smile every single day. We attend a very large church and there is rarely a week when someone doesn’t stop to tell me how seeing Anna warms their hearts.
Jesus said “Whatever you do for the least of these, you have done for me.” I don’t believe the story is over until we see what happens in the next life. The rewards of having someone who requires more love and sacrifice start in this life but won’t be fully evident until the next one.
Giving Up Dreams and Aspirations
If you are a typical person you are probably thinking:
“But how will I ever have the career I wanted.”
“How am I going to travel?”
“I can’t get anything done that I want to do.”
“What about my social life?”
I’ve had all those thoughts and more. No one’s life is ever exactly what they planned. Life doesn’t work that way. Some dreams fizzle and are replaced with other ones. The biggest blessings are often things you never expected or predicted.
Whether if feels like it or not, it really is better to give than to receive. That’s not to say I can’t want things and be happy to get them, but over time I’ve seen the purest and best gratification has come from helping people around me. So the responsibility of caring for my daughter is a gift. And her gift is bringing joy to other people, which I try to help her do in the best way possible.
I’ve managed to get a lot done that I never would have dreamed was possible when I was a teenager. I lived abroad for years and learned a second language. I became a Certified Public Accountant and I homeschooled all my children from birth until university.
It wasn’t an easy path but it was, and is a good path. There is a good, rich and rewarding path for you too.
Author Bio: Becky is a blessed mother of two boys and two girls, changing diapers and homeschooling for 20 years and counting. That’s why I call myself an Experienced Mommy– the name of my blog. I love to research (I’m a CPA). And I really love to help other moms make wise and thoughtful decisions for their families by reviewing car seats, strollers, and other baby gear.