I want to share with you the story of my daughter Andria.
Andria entered this world just over 14 years ago, after a wrenching 49 hours of labour. She was 6lbs 15oz and I was just 23 years old at the time. I remember looking at her in my arms and thinking about the amazing life we were going to have together: her learning to crawl, walk, talk, read, ride a bike, go to school, graduate, get a job, get married and have children of her own. I think that’s what all mothers do, in some form, don’t they?
As many of you may know, it’s likely that Andria’s life isn’t quite going to turn out that way, and I want to share some of the realities that I’ve been presented with over the course of her life. I want to be raw, open and honest. In return, please don’t get your self-righteous fingers on your keyboard and think it’s OK to type something into the comment box that you would never in a million years say to me in person. Just don’t. It will make you look horrible, trust me.
And I want to clarify a few points:
Point #1 – I love Andria. Beyond what I can even describe in words. I think it’s a pretty normal mommy-daughter love – we have periods of frustration, arguments and tough, messy parts. But I have not for one moment ever stopped loving her.
Point #2 – I am fully aware that, despite the challenges we have been through, it’s not a far look to find parents that have things much, much worse. This is not about comparing my life to theirs, or complaining about my life, or anything like that. This is just a look into my reality.
When she was 11 months old she suffered what was later told to me to be a ‘harmless’ febrile seizure after a pretty nasty flu. Doctors and paediatricians assured me repeatedly that there would be no long term, permanent effects, but I didn’t believe them. I didn’t believe them because I’m The Mom, and sometimes The Mom just knows.
About a year later, she ate a peanut butter cup, and we had the scare of our lives. That scare where doctors and nurses shove you out of the way and say “Get the mother out of here” and speak in that scary code language that we normally only see on the most intense of television drama shows.
So, I had on my hands a mentally disabled toddler with a life threatening allergy to peanuts.
Which back in 2004 were-friggen-everywhere. There were nuts in my bath soap, most of my food, even the wax that was in the garage to wash the car. Everywhere. While she laid in her hospital bed under constant observation, I was at home bringing garbage bags of food out of my house because now, life was very, very different.
The doctors told me that she wouldn’t have any further cognitive issues because of the peanut allergy, but again, I didn’t believe them. Because I’m The Mom.
Three months after that, she couldn’t walk. My life became a wild ride of appointments, medications, specialists and therapy that goes along with a Juvenile Rheumatoid Arthritis diagnosis. So now, I had a mentally disabled toddler who I was scared to take anywhere where there was food because of the peanuts. That couldn’t walk because of arthritis. And couldn’t tell me what was going on because she is mentally disabled. Say that 10 times fast.
And then, I just yelled. I said “I’m The Mom and I just KNOW so stop telling me she will be completely normal!” And they did. Finally.
If I had a few sentences to describe Andria…
I would tell you that she is kinder and more compassionate than most people. That she is a 6 year old trapped in a 14 year old body, and has the communication skills of about a 4 year old. That she has a contagious laugh, and a great heart and a big desire to please. She teaches me how to be more easy going, to see the joy in simplicity, and to let things go. Like water off a duck’s back.
She really is one of my favorite humans.
But, here are a few tough things about my life with this kid:
- She will likely never leave home and live independently. Most moms are sad when their kids move out, but really, that is the natural progression of things. You raise them, they start their own families, then they care for you as you age. That’s how it’s supposed to go, right? Do other moms lay awake in their beds wondering what’s going to happen to their child when they die? Stressing that she will need regular care for the daily things of life (and that I really don’t think it’s fair for that responsibility to fall on her sister). Most of you probably don’t visualize yourselves in your 70s still trying to find childcare for your daughter.
- A kid like her makes relationships tough. The person you marry has to be fully aware that there might never be a “the kids are out of the house let’s travel the world for 6 months” phase. They have to be ok with not parenting like a regular parent. They have to be ok when sometimes you just let things slide because you just can’t handle one more correction.
- She has vulnerabilities that other kids don’t. She’s 14, and developing like a 14 year old. Except, just about every day as she leaves the house I pray that there isn’t a 16 year old boy with not-so-great intentions because that could be just a crappy situation.
- She doesn’t fully understand how she is different. It’s so hard to answer her when she says “Mom, when can I have kids?” every time someone in our circle of friends or family has a baby. Or “Mom, will I get married?” because I can’t exactly picture that right now.
- Like most moms, I have thoughts that I instantly regret. Like “I didn’t sign up to have a 5 year old for the rest of my life” and “I don’t want to do this anymore” and “This isn’t fair!” I’ve learned over the last while that a good sleep solves most things.
- No one exactly gets it. The thing about mental disabilities, is that there is no template. No road map. No regular course. And no cure. No one – not one single human on this planet – can speak with confidence about what the general future of her life will shape out to be. Most of us can assume that our children will grow and develop into adults. I can’t say that for certain about Andria. Some days she acts like a normal 14 year old – she can make a meal and clean her room and do her laundry. The moment I start thinking “Hmm. Maybe she can live independently” I discover that she has left the water running, the stove on, or not flushed the toilet and I’m slammed back into my reality.
- There aren’t many fantastic resources available for kids like her. Our standard government programming like ODSP (Ontario Disability Support Program) and the RDSP (Registered Disability Savings Plan) programs are definitely added bonuses, but ultimately, I need to figure out now what she will need after I’m no longer around. It overwhelms me sometimes, trying to make sure I have enough money saved away so she isn’t a financial burden on her siblings after we pass away.
The blessings she has brought into my life and what I have learned from her have far outweighed the challenges and the future unknowns. Some days I get excited at what potential she has and it makes my heart burst to see the joy she brings to everyone around her.
For now, we’re taking it one step at a time.