From A Parent's Perspective

I want to say a word or two about Down syndrome and living with it everyday by raising two children with the condition.

"He has a face only a mother could love...."

I've heard this statement made in jest all my life about people who are, well...... "not attractive in the classical sense". And it came to me shortly after our son was diagnosed with Down syndrome at birth. I immediately thought about others that I had known with Down syndrome and how they all looked the same to me. They all have the "mask" of DS which enables people to spot them immediately as having a disability, as being retarded, as being less than perfect. Imagine how it would be to wear your "disability" on your face everyday, knowing people are going to judge you by it, whether they mean to or not. I for one, experience this a little bit by being overweight. People automatically assume that because I am fat, I must be lazy, gluttonous, and don't care about my body or my health. They have no way of knowing about any underlying medical conditions which led me to gain weight as I have aged. They don't know what I eat or how much. They just look at me in disgust that I could let myself get that way.

People with DS must experience something similar. Not only are they not beautiful in the eyes of society, they also surely must be stupid and have a low "quality of life". (At least this is the excuse given by so many expectant mothers when they decide to terminate their unborn babies with DS. I guess they're told this by their doctors and why shouldn't they believe them??? They're supposed to be in the know, right?)

But as a parent of two little boys with DS, I know for a fact that they are NOT unlovely. They are NOT stupid. They have a FANTASTIC quality of life. I can see it in their eyes when they light up with joy at new things; a new toy, a swim in the pool, a trip to the park, or even just from listening to music they love. My precious six month old is starting to display his own little distinct personality. He loves to watch me warm his bottle by running it under hot water in the sink. And he loves playing in his baby bathtub. He kicks his chubby legs with delight when I put him in it and immediately reaches for anything that comes near his tiny, adorable hands. He especially loves the Thomas the Train cup I use to rinse his "crazy", curly, dark hair. And, like so many other "typical" (read "normal") babies his age, he's fascinated by ceiling fans, especially those with lights. He will lay on my lap and watch our fan, intently swinging his little arm in a big shoulder circle to mimic the fan blades going round and round.
My six year old is in love with music. And he can sing, sometimes even on key (LOL!).

There are times though, when I look at them and am overcome with grief for the trials they are going to have to face as they get older. They are going to be called names by the other kids in school. They'll be discriminated against simply because of the accident of their birth. They didn't ask for this. They didn't sin before conception. So why should they be punished? Why should they have to live with the mask of DS everyday of their life? Did we do something wrong that caused our biological son to be born with it? I've asked myself that time and again. I've begged God for the reason. I've railed at Him for giving this to my son; giving this to us. He is a smart little boy and he will realize one day that he is different. He will be teased and ridiculed for something he has no control over. I often wonder if he will ever get married or be able to live independently. He is certainly independent now, but he knows he is protected, under the shelter of his mommy's and daddy's love. Will he ever feel confidant enough to live on his own, with a roomie, or even a wife? This is one big reason we chose to adopt a child like him. So that he could always have someone.

But then again, aren't we all dealing with things we have no control over? Don't we all have issues in our lives? Things we are struggling to overcome that are not of our choosing? The difference is, most of us are given the full capacity to handle trials as they arise. People with DS often have intellectual differences that make it harder for them to learn certain things. They also have a harder time with impulse control and they have much lower inhibitions than we 46-chromosome people. That's why they seem to love more easily, judge less harshly (if even at all), and have a much sunnier outlook on life. It's not because they are clueless and have no idea what's going on. They just have the unpopular tendency to see the glass is half-full and the "would you like to share it with me?" mentality. Too bad the world is such a dangerous place for individuals who live their lives in this manner. Adults with DS also often have speech impediments that make them seem slow or even unintelligible. People mistake the fact that they can't put their thoughts into words for stupidity and don't take the time to get to know them. They are not often the slender idea of body perfection since they are likely to have hypothyroidism which leads them to be overweight. And it's also hard, when you live on social security disability (this is for another post altogether!), to afford healthy foods. And how many parents take the time to teach their kids with DS to cook anyway? So by the time they are old enough to make their own decisions about the foods they eat, they have no idea how to prepare a healthy meal, nor really the inclination to do so. It's just easier to pop in a microwave meal or eat some spaghetti-os out of the can.

I fully intend to give my sons the tools they need to be able to live an independent life. That's one purpose of being a parent, isn't it? To teach your kids to be self-sufficient? Why not kids with disabilities as well? I know them (or at least am getting to know them) and am constantly surprised by their intelligence, their senses of humor (yes, even the baby does funny things and then grins broadly when he's made us laugh), and their sheer.....normality. Is that a word? It is now, I guess. I also intend to help arm them with the highest sense of self-esteem so that when kids are cruel, when girls they like scoff at them, when they are picked on by older boys in the locker room, and are even disdained by elitist adults, they'll know that it's not their problem. It's those who are afraid of their differences, don't like the way they look, walk, speak, or even begrudge them their very existence.

I didn't intend for this post to go this way. I had wanted to talk about the joy of raising my sons. I guess my subconscious had other ideas. I'll write about the fun we have later.

It's Been A Long, Lonely Road

And it's not over yet. The last 18 months of our lives (and possibly longer) have certainly been the most trying we've ever experienced. For the sake of brevity, I'll only outline the details. My husband and I adopted a child from another country. The child had multiple special needs. After having custody of the child for four months, we realized that we could not give the child what was necessary and our once peaceful home had been completely turned upside down. Our biological son was acting out badly at school, we were not bonding with this new child nor the child with us, and we were constantly battling some sort of odd or even destructive and self-mutilating behaviors. So we disrupted and the child is now in the perfect family. I can't give any details other than that.

The purpose of this blog is to leave all of that painful ordeal behind and to move on with our life as a family. Also, I really, really need the creative outlet of a journal. I know myself well enough to know that I just won't keep up with a hand-written journal. I don't have the patience, nor the endurance to sit down and write out my thoughts in long-hand. I always find my handwriting gets worse the more I write so.....I made the difficult decision to get back up on the horse after I fell off and was nearly killed. I was crushed, but have picked myself up, brushed off my clothes and got back on the keyboard, much to my husband's chagrin. It's been a few months and I finally feel like I can get a fresh start.

I had a blog (two, actually) that I kept through the whole adoption process, right from the very beginning. I lost friends because of the feelings I spilled onto the screen. I held nothing back and that was my downfall. I was completely and painfully honest about everything we went through. Some that I thought were friends just could not (would not?) understand. I have to wonder if they were ever really our friends in the first place. Perhaps they had some hidden issues with us from the beginning and the ill will they harbored came out when they should have been offering support.

Another reason we've lost friends is because they didn't like that we adopted again so quickly after disrupting. First of all, it is no one's business how many children we adopt or the timeline in which we choose to adopt them. For the record, we are done, but if we wanted to adopt another and another, that is our business. Secondly, we did not seek out this baby. A physician of ours knew the difficulty we were having with the first adoption, so he sent us an email from a list he is a member of, that stated there was a baby born three weeks previously who had lost his adoptive family due to unforeseen special needs and the agency was desperate for a family for him. He was about to be discharged from the hospital where he had spent his entire life so far and they had nowhere for him to go. We called this agency, gave them our information, faxed them an updated homestudy (which incidentally had been approved for two children) and out of 20 families, they chose us. Two days later I was on a plane to another state and he was placed into my arms. Four and a half months later, he is a most important part of our family. Our biological son adores him, he is flourishing, and we couldn't be happier. Now, imagine my heartbreak when I wanted to share this blessed event with those who had been privy to our nightmare, and all we got from them was.......nothing. Emails that I sent got no response. When I tried to find out why, all I received were hateful accusations. And we were told in no uncertain terms that we were not welcome at our local special needs support group events. You find out who your friends are when you go through trials beyond your capacity to bare which reveal your limitations. People who you have given your friendship and support to often turn a cold shoulder when you need it in return.

Anyway, I will speak no more of the events that have nearly caused me to have a nervous breakdown. The purpose of this blog is to share what happens when the clouds roll away and the sun begins to shine on you again. I just hope that I can bring some joy to the lives of you who read my ramblings. My children are such precious gifts as all children should be to their families. In spite of their disabilities, I want to share their accomplishments with you. I want the world to know that even though they started life at a disadvantage, they can still have significant acheivements; that they still have worth in the eyes of the community. And that God DOESN'T make mistakes.

God bless and please feel free to leave any comments that you think will add to the content of these writings. If you have a problem with anything I have written, please be conscientious with the words you choose to use. I won't brook any disrespect. God knows, I have had enough of that.