I Never Knew I Wanted a Child with Down Syndrome

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What feels like a million years ago, I was on the Baby Center Down Syndrome Board. I was immersing myself in the questions, the comments, the endless threads. The talk, the chatter, the crying, the heartache. The “brag”s. One signature struck me in particular, “I never knew I wanted a child with Down Syndrome until I got one.” I still don’t know who originally came up with that – do you? – but I clearly remember the pang in me that I felt when I first read it.

I never knew I wanted a child with Down syndrome until I got one.

At the time, I wondered over it. Wondered at the love behind it, wondered if I would ever feel the same. Wondered if I would lay claim to those words – not for stringing them first, but rather, lay claim to their meaning. Lay claim not just to my daughter, but to her extra chromosome. Because cognitive disability was hard for me. Very, very hard.

Hard to accept, hard to appreciate, hard to wrap my mind around its presence in my life through my child.

Moxie is three years old now and I can say it with all of my heart, ever fiber that makes me who I am: I never knew I wanted a child with Down Syndrome until I got one. Oh! How we love her.

It’s partly just who she is but it’s also partly the something that the little extra carries with it. Because some of the things that she does and some of the things that we love adore so completely about her are things that we hear from others who are also connected to this tribe.

Like: she can see into my soul. She doesn’t normally cover me in hugs or kisses; she’s usually pretty hands off. But there are moments when I am crippled with sadness – and out of everyone around, with everyone around – she senses it. She comes over, cups my face in her tiny hands, kisses my cheek with matchless tenderness. My child, my heart.

I was terribly cynical for a long time.

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Pregnant with Moxie, I’d read things about how much mothers loved their little ones with Down syndrome and I thought things along the lines of, “that’s great, that’s wonderful, silver linings and all, good for them but I’d rather have a kid without Down syndrome, thanks.” I think in my heart of hearts, I didn’t believe it was possible for someone to truly be accepting of an intellectual disability, or to honestly see something anything desirable about it.

And even now, typing these words, I think of the person I was, I think of old friends of mine and wonder if they are reading this, how they are likely to be thinking I’ve either changed a lot or I’m pulling this out of my ass.

I’ll make it easy for you, my friend, by telling you straight up: I’ve changed.

People might say, ‘oh yeah, you can accept and love Moxie and all because it’s easy with her, she’s ‘high functioning’ or whatever.”

Besides the fact that I hate words like “high functioning” or “low functioning” and I hate how we seem to assign merit to people based on how alike mainstream they are, guess what? Moxie isn’t really “high functioning.” I don’t  know what’s what in all the “functioning” stuff but I do know this: she’s over three years old and maaaayyyyyyyyybe says 5 words. Sure, she understands just about everything we say to her, but she doesn’t talk much.

She’s not some “high functioning” child with Down syndrome. She’s just a little girl. Who has Down syndrome. That extra chromosome contributes to who she is – undeniably so. As I get to know her and by extension, it, I grow to love the whole package so deeply, so completely and…words escape me.

I never knew I wanted a child with Down syndrome until I got one.

I got her.

Related post: 5 Compliments You Need to Stop Giving About Children with Down Syndrome

5 Things Special Needs Parents Don’t Want To Hear

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Being a special needs parent is a difficult task, one that requires patience, time, and thick skin. Of all the difficulties a special needs parent must endure, seemingly well-intentioned yet insensitive comments are near the top of the list.

Many times, such comments, usually directed at parents who have just discovered their child has a disability, are a result of a person’s desire to offer support, reassurance, and well-wishes. Other times, however, such comments are the result of a person’s ignorance. I can’t tell you how many times my grief or worry over Ewing, now 4, and his hemiparesis and cerebral palsy from a stroke in utero were met with comments that were intended to make me feel better (I hope!) but did just the opposite. The life of a special needs parent can be a lonely one, made even more so when it becomes obvious that people would rather pretend nothing was wrong at all than listen to the very real feelings and struggles that moms and dads of kids with special needs endure.

Want to help a parent whose child has special needs? Here are five things you should never say, especially to one who is just beginning the journey.

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1. God only gives special children to special parents. While this comment may appear reassuring, suggesting somehow the parents’ character is admirable and they will surely succeed in taking care of their child, it only serves to further the parents’ already desperate state. No parent wants to hear that God intentionally harmed their child or saw fit to make them, of all people, the bearers of this burden.

2. You can barely tell anything is wrong with him. Not only does this reaffirm that something is “wrong” with the child, but it also suggests that “normal” is the only acceptable way to appear. “You can barely tell” implies the child doesn’t quite measure up, but he’s close, and that should be some sort of compensation.

3. What do those doctors know, anyway? Quite a bit given their education and training, one would think. Refusing to accept a child’s diagnosis only serves to make the parents feel even more alone. Parents need someone to problem-solve with them, to brainstorm treatment options and best child-rearing practices, not someone to deny the child’s needs and the difficulty raising the child might present.

4. I’d sue the doctors and hospital if I were you. No one can assume to know what he or she would do if faced with the same circumstances as the parents of a special needs child. Even if the child’s disability were the result of doctor or hospital malpractice, suing them is not going to miraculously cure the child of his ailments. Sometimes, parents want to cope by thinking about what they can do for their child now, not what they couldn’t prevent in the past.

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5. I know just how you feel. Unless you’ve been through the exact situation as the parents, there is no way to know just how they feel. Such a statement does not make the parents feel as though they’re surrounded by people who understand; it reinforces that few people, if any, truly get it.

Knowing what to say in certain circumstances can be difficult. The best thing you can do is listen and try to understand. Affirming the parents’ feelings and offering to be a shoulder to cry on is quite possibly the best support you can provide. And they’ll thank you for it. Believe me, they’ll thank you for it.

Related post: Dear Newly Inducted Special Needs Parent

Living With Lissencephaly

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MomandBoys

Ultrasounds are one of the pregnancy highlights. Whether you are learning the gender, seeing that precious heart beat, or confirming size or position as the day draws near, there is a lot of excitement in peeking through and getting a glimpse of your future.

One would think that hearing “twins” would be the most life changing moment of an ultrasound. But in our case you would be wrong. Our lives were forever changed, not only by the word “twins”, but also by a gut binding moment that no mom wants to experience. That moment when the ultrasound tech is a bit too quiet. When the wand lingers too long on one spot, and comes back for a second look. When time stands still.

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The coming weeks were a blur. Something was wrong, therefore everything was wrong. Their brains. Their tiny precious brains were not what they should be. The diagnosis was a rare neurological disorder, Lissencephaly. And the outlook was grim.

We were warned. We were told of low tone, delayed development, seizures, infantile spasms, vision issues, feeding issues, pneumonia, aspiration, and failure to thrive. We heard life expectancy was two years. We hoped it was wrong, but knew it probably wasn’t. And we moved forward.

I am often saddened that I can’t change things. Disappointed that they weren’t wrong. Heartbroken that I can’t fix it. But I am not deterred. I am not shaken. I didn’t have the boys because I thought the doctors were wrong. Because I thought we would be the first to change the face of this disease. Because I thought we could beat it in a way no others could. I had them because I loved them. No matter what. Unconditionally. Even if it’s hard.

So far, my twin one year old boys are textbook Lissencephaly cases. Early seizures, infantile spasms beginning around 4-6 months of age, cortical vision impairment, very low tone, not developing beyond that of a 2 month old, and working their tails off to survive until 2. As I type this, Landon is in the children’s hospital, working hard to beat pneumonia (and winning).

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And I’m working my tail off, too. This is hard. Not just sometimes, but most of the time. And when I get that obligatory “I don’t know how you do it”, I smile. Because I don’t know either. I don’t know HOW anyone does this. How any mom watches their child endure. Watches their child lose a battle, only to lose the war. Watches the text-book come true right before their eyes. But I know WHY someone does it. Because every kick, every smile, every good day, even if followed by 100 bad ones, every moment, every memory, every single cell of their being is loved, appreciated, and treasured.

Because endless love and immeasurable hope, are both part of being a textbook mom.

Related post: Disciplining Your Child, When Your Child Might Not Grow Up

I Thought We Had More Time

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I sad because my legs no work so good.  I no run fast like Parker. My legs no work.

It’s the heavy silence that follows the bomb dropping, where all you can hear is the sound of your own heartbeat pounding out its instantly accelerated rhythm in your ears, followed by the air slowly leaving your body – the breath you’ve been holding since he said it.

Someone should say something. Someone should tell him it’s okay, that he’s perfect, that we knew things would be tough and that they likely always will be but that we will get by. Together.

Isn’t someone going to say something?  Because I am doing all that I can just to hold back from letting out this sob that is building up in the back of my throat in the seconds since those words came out of his beautiful rosebud mouth just dripping with sadness.

But it is only me in the car with him.  And Parker.  And I am supposed to be the one to soothe him, to tell him…what on Earth am I supposed to tell him?  That it will be fine? That it sucks? That I’m sorry?

I thought we had more time.

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I thought that we would’t be here yet, that at four years old, this boy – my beautiful boy that finally definitively learned last week that he is a boy, that can remember that my name is “Jamie” but still can’t consistently recall his father’s name, that thinks that the thing he poops out of is called his “tushie” and the thing he pees out of is also called his “tushie” – well, I thought we had more time.

I thought he had more time.

More time to walk through this world oblivious to having Cerebral Palsy, more time before he was aware of the cruelty that the cocktail of fate or genetics or bad luck or me not taking my prenatal vitamins regularly enough served up to him.

That was another of our “silver linings” – of the platitudes we told ourselves about his cognitive deficits, about how, At least he doesn’t realize it.  At least he’s not aware of all of this – that he’s different – that most kids don’t have to work so hard just to get through each day and that it is not normal to have eight hours of therapy every week.  At least he doesn’t realize that he’s different, we told ourselves and each other. Thank God for that.

But he knows now.  Something that revealed itself on our drive to school this morning when Parker told me that Owen doesn’t look so good.  I peered at him through the rearview mirror half-expecting him to be some horrendous shade of green, but his coloring was fine.  I assumed it was likely because he was still upset that Scott told him he couldn’t wear his Oscar the Grouch watch to school today.  Seeing this as an opportunity for good communication between them and a chance to have Owen talk about his feelings, I suggested to Parker that she ask him what was wrong.

Owey, What’s wrong? She asked sweetly.

I sad. He replied.

Why are you sad? She pursued.

I sad because my legs no work so good. I no run fast like Parker. My legs no work.  He responded.

I think I gasped. Quietly, but it happened.

And then Parker saved me.  This five year old who knows – my God does she know more than she ever should have to, than any of us should – she saved me. She just jumped right in and she gave him the best pep talk I’ve ever heard.

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“No Owey, you’re going to be really fast one day.  You can grow into my sneakers soon and I’ll give them to you – even though they’re pink – because they light up and that makes people really fast.  And you should ask Daddy to help you with your running skills.  Daddy’s really good at stuff like that.  I bet you’ll even beat me one day!”  She told him.

Telling her little brother that one day he would beat her in a race was the very height of generosity for my girl.  For this little thing that has problems of her own – arthritis and sensory issues plaguing both her strength and her self confidence – her speed is the one physical trait she treasures and takes pride in.

And she gave it to him.  With absolutely no hesitation, no reservations.  She gave him that.

I thought she had more time.

Before she needed to start giving him pep talks and worrying about standing up for him and explaining things to him and for him.  She’s only five.  She’s not even in Kindergarten and somehow she just knew that he needed this.

And then we pulled up to his school, and I dropped him off, letting his therapist know that he was feeling a little sad today.  He kissed me goodbye and looked at me with those clear blue-green eyes of his, the ones that always make people comment simply Those eyes!, and they were cast down a bit – no smile crinkles at the corners, no usual sparkle.  Something in him had made the connection and he was feeling it.

It’s when you know that thing that you can’t un-know.

It’s when you see that look in your child’s eyes that you can’t un-see, or you hear that profound sadness in his voice that you can’t un-hear.

It’s unbearable.  I ache for him – for his little heart that knows now.

And I dropped Parker off a few minutes later at her school, having turned to her at the first red light to tell her how incredibly proud I was of her.  How she showed such generosity, and grace, and love towards her brother in those moments.

And then I called Scott as I pulled out of the driveway of her school, and told him what had just happened and finally set free all of those tears that had been impatiently waiting to be shed.  And I wondered aloud what we were going to do, what we were going to tell our boy, how we were going to explain all of this to him.

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I have cried on and off all morning – thinking about that conversation this morning and the conversations that are inevitably going to follow it.

And I still have absolutely no idea what to tell him.  There are things that a hug and a kiss can’t fix.  That I don’t know is the only response to, and yet still grossly insufficient.  There are I’m sorrys that I want to utter quietly to him, that I want to scream and cry in frustration for him – wanting him to know that I’m sorry this happened to him, that he didn’t deserve it, that I wish it had happened to me instead – all the while making clear to him all the reasons I’m not sorry – not for a single second that he is mine, that I wouldn’t want anyone but him to call my son, that there have been four long years now that he has made me proud each day without ever knowing why.

But he knows now.

I thought we had more time.

Related post: Parenting To The Lowest Common Denominator

Sometimes I Forget That Our Son Has Down Syndrome

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Sometimes I forget that our son has Down syndrome. It’s easy to be distracted by his two year old tantrums, his mischievous smile and go getter attitude. Gabe is stubborn yet kind hearted.  When big sister is having a dramatic, I’m-four-and-the-world-is-OVER, meltdown, he is the first to run and check on her.  He often climbs into your lap and stretches his little fingers up to stroke your cheek, his way of saying “I love you”.

He also destroys things; opens drawers, pulls things out, throws them on floor. When you confront him, he ducks his head and looks up from under his eyebrows with a sort of sorry smirk. He helps pick up, sometimes, or wanders off to destroy something else. He loves music and will start to dance the second he hears it. He absolutely cannot resist participating in a round of Itsy Bitsy, or Twinkle Twinkle, no matter how upset he may have been seconds before. Gabe can make music from anything, even dancing to the fireworks on Fourth of July celebration.

Sometimes I forget, because Gabe is just that; Gabe. When I look at him I don’t see Down syndrome, I see my son, Abi’s brother, a sweet, willful, amazing, determined little boy.

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Sometimes I forget, and that makes it even harder when someone reminds me in a not so kind way….

Like the cashier who gave me the sad eyes and spit poison in a whisper, “I bet you wish you had known before he came out. You know they have a test for that now…”

Shock, horror, hurt and fury coursed through my body. I considered jerking her over the register and beating her senseless. I looked her up and down, I could take her….but orange is not my color.  So I used whit instead.

I smiled a crazy lady smile “I know right?! It’s SO much harder to get rid of them once they come out. Believe ME, I’ve tried…”

Jackpot! Her mouth dropped open and she stared at me in shock. I leaned over the edge of the counter and whispered back at her:

“So what you’re saying is that it’s okay for me to kill him while he’s inside, but not outside my body? For ME there isn’t a difference. For the record, we knew EVERYTHING about him while I was pregnant. There is no way in hell that I would let any harm come to either one of my children, including during the time that they’re so ridiculously considered disposable.”

I sometimes forget. I HAD forgotten that sometimes other people don’t immediately see GABE, they see a “downs kid”. They see poor parents and a burdened sister. They see a child who must be suffering in some way, sickly and incapable.  I sometimes forget, until I glance up and see the pity in their eyes, or hear ignorant comments in not so hushed whispers.

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I sometimes forget, that it’s not their fault, they just DON’T KNOW. They don’t know the sting that their words carry. They don’t know Gabe, they haven’t heard his giggle or been infected by his smile. They haven’t seen the fierceness with which his big sister protects him, despite her insistence that she doesn’t like “boy babies”. They have screamed at the top of their lungs for him as he conquers a new milestone, their parent hearts swelling with pride.

I sometimes forget that, that was me once too. What I knew about Down syndrome before Gabe, was what I’d learned from my nursing text books. It was only enough to leave me sobbing hysterically and envisioning a listless, immobile, incapable child.  I didn’t know.

Sometimes we forget, to us they’re just Gabe, AJ, Max, Gavin or Maddie, and that’s how it should be.

Related post: I Never Knew I Wanted a Child with Down syndrome