In the wake of this very stressful week, I have thought a lot about, not only what it means to be a special needs parent, but a parent in general. I have come to realize that so many parents I have met, whether in person or online, take for granted, the gifts that they have. These parents, and I'm sure they're good parents, love their children, but they fail to acknowledge how good things are with their children.

An example. We all know that Zoe has microcephaly. For some unexplained reason, her body has trouble fighting off infections and illnesses. Gastroenteritis, for example, is an illness that causes vomitting, diarrhea, etc. 9 out of 10 kids who get it will get over it in 3-5 days. Not Zoe. When she was 6 months old, Zoe had this illness. She had diarrhea 17 times a day for 5 days straight. She wouldn't eat anything, drank very little for the first four days, and stopped on the 5th. Then, she vomitted and stopped peeing. We had already taken her to the emergency room 3 times and been sent home on the basis that "her eyes looked moist". Apparently this automatically meant she wasn't dehydrated. So, on the 5th day, when she finally vomitted, I called her dad home. I managed to get her to sleep, and when she woke up, we, creatures of habit, decided to change her bum. Dry. Or so we thought. Seconds later, dark green liquid came rushing out of her back end. We later learned this was bile. We rushed her to emergency a fourth time and demanded to see the pediatridian, rather than the emergency doctor. They called the pediatrician right away, who happened to specialize in pediatric gastroenterology. Turns out, she was the 1 in 10 child who needs medical attention to help fight the infection. She was so severely dehydrated, her veins had collapsed. It took 20 minutes to insert an IV into her foot. She cried the whole time, and didn't shed a single tear. She was back to her normal self the very next morning.

It hasn't stopped there. She continues to be the statistical 1 in 10 child who gets the worst of every illness, and needs medical attention to fight the infections. And each time, I have to be the "bad guy" in her eyes while I hold her down so they can take 8 tubes and 3 syringes of blood, or when I refuse to let her sit in my lap so we catch as much urine in the bag they've taped to her private parts. I feel haunted and guilty by those dark, sad eyes that cry "Mommy, it hurts. Make them stop", while I continue to let the monsters who are helping her, hurt her. Then I turn into a hypocrite when I hug her after it's done and tell her it's okay and for the best. Who am I kidding but myself? She doesn't understand. All she understands is that Mommy is letting someone hurt her.

This is where my frustration with parents of typical kids comes in. Like I said, I have no doubt these parents love their children, but the way these children are treated or not treated, the way they are raised or not raised frustrates me to no end.

Too many parents these days take their healthy children for granted. Yes, these children get sick, but overall, they are healthy and developing normally.

This week, we had friends of ours tell me they are choosing to spank their children when they have them. I, of course, kept my mouth shut, because although I disagree with spanking, it's not my place to tell them what they can and cannot do with their children. Parents also tend to have trouble differentiating between unspanked and undisciplined. I will say this tidbit, spanked children have been proven to have an IQ 5 points lower than unspanked children.

Back to what I'm getting at.

As a special needs parent to parents everywhere, I must say this...

Parents, all too often, yell at their children in frustration. Parents, all to often, hit their kids and call it discipline. Parents, all too often, ignore their children after a long day because they want to relax or they "just don't want to hear it". Parents, all too often, don't eat dinner together with their kids and thus don't know what goes on in their lives. Parents, all too often, don't spend any time with their children, and we turn around and blame it on video games and movies, why our precious babies-turned-teenagers begin smoking and doing drugs and end up in trouble with the law. But what is the real problem? Is it media influence, or is it lack of parenting?

And then there's me, and the groups of thousands of special needs parents. We have our children now, but we don't know how long we have them for. We have 3-year-old minds trapped in 15-year-old bodies, who don't understand why they still pee themselves, because to them, it's still normal. We have these tall, overgrown toddlers having monthly periods, and how can Mom and Dad explain to them how or why? They're the right age, chronologically, but can you explain to a 2-or-3-year-old child why she bleeds each month? When we have to call 911 because our child is having a seizure that is unresponsive, or our child has a fever too high to count that is also unresponsive, we are scared. We hold our children as tightly as we can, because we don't know if that will be our last chance to hold our children in our arms. Each day as a special needs parent is a struggle, but a blessing too. We still thank God or whoever we are faithful to that we have them here. We do what we can for them, because we don't know what else to do.


A plea to parents everywhere...Go hug your children, right now. Tell them how much you love them, and mean it. From one special needs parent to all parents out there, stop taking your children for granted. One day, he might not be here anymore to hit in the name of discipline when he runs into the street by accident, and you're going to wish he would run into the street, just so you could touch him again. One day, she might not be here to yell at when you've had a long and frustrating day and just want to relax or "just don't want to hear it", and you're going to wish she was there, just so you could talk to her again. One day, they might not be here to tell you how their day at school went while you're enjoying a meal around the dinner table, and you're going to wish they were, just so you could hear their voices again. One day, we won't have the media to blame, only our poor or lack of parenting to blame, when we don't have our children to hug and kiss or tell them we love them anymore.

Zoe, I love you so much. No matter the struggles of your condition, no matter the frustration and heartbreak we experience every day, you are still my baby girl. No matter how short or long you are here with me, I will love you until the day I die, and I am so sorry if I have ever taken you for granted. You and your brother and Daddy are my world, and I wouldn't trade this life for anything.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.