The Dark Side of Down Syndrome

Take my hand and walk with me for a moment. You’re nervous, stressed, anxious, sleep deprived, and everything else that comes with being a mom, but you keep on moving forward. You bring yourself to walk into a room filled with three hundred women, most of whom you’ve never met. As soon as the door opens you instantly relax because you are suddenly struck by the fact that these are YOUR people. This entire room speaks YOUR language. You can talk to every single woman in this room and not a single one of them will get uncomfortable when you talk about your child.  Not a single word of pity will be uttered. You will laugh, you will cry, but more than anything you will be able to be honest about your life without fear that what you say will cause someone else to question whether or not your child’s life is worth living . . . because every single one of them already knows the truth. The truth about Down Sydrome.

This is what it was like for me as a mom to a child with Down syndrome at the Down Syndrome Diagnosis Network’s Rockin’ Mom Retreat this past September.

In the Down syndrome community, we as parents are often chastised for portraying our lives as rainbows and sunshine. I have heard comments more times than I care to admit from people who assume we, as parents of children with Down syndrome, are lying to ourselves about how “amazing” our lives are, and lying to all of them. Here’s the thing, from my perspective anyhow:

You’re right.  It is impossibly hard raising a child with Down syndrome. What you’re wrong about is that despite how hard it is, impossible it is, overwhelming it is, we STILL think it’s the greatest blessing we never knew we wanted.

I’ve had comments made to me multiple times in the past few months about the bruises and scratches I have covering my arms, neck, and face. Benny’s sensory issues have escalated recently and when he’s overstimulated he can get violent with me. He pinches and scratches and bites me whenever he’s frustrated, or scared, or has just had enough of the situation he’s in. He’s four now, and he’s strong so it can get pretty bad at times.

He’s still worth every bruise.

Even though I make a good income, we find ourselves living paycheck to paycheck since Benny. I mean, kids are expensive in general, but doctor and therapy co-pays add up every month. Orthotics need to be replaced. Specialists need to be consulted. Blood needs to be drawn at LEAST every six months. Diapers are still worn. 

He’s worth every penny pinched.

Functions are difficult. Taking Ben to an event with lots of people is always a roll of the dice. It may work, it may not.  We need to leave places and events OFTEN as soon as we get there if Benny gets overstimulated. We often have to deny our typical developing daughter certain functions and outings because Benny can’t handle them. 

He’s worth every disappointing day.

Here’s the thing. We, as parents of children with special needs, don’t want to write about this stuff because the question of whether or not our children are worthy of being BORN is discussed every single day. We don’t want to add fuel to the fire. We don’t want to give ANYONE another reason to question our children’s worth. 

Despite what you may think, we never do. We NEVER question our children’s worth, and neither should you.

Because they ARE worth it.

Yes, I have bruises. I also have moments where I succeed in calming him down in a new way that leads to the most amazing cuddles and kisses EVER.

Yes, we are broke. I also get to live my life knowing that my baby boy and I are blessed enough to provide him with all he needs to be as successful as possible in this life he gets to live. Others who came before us were not so lucky.

Yes, I have had to leave events we were excited about moments after arriving. I also get to ride on cloud nine for days, weeks, months whenever we have a GOOD DAY where he has the time of his life at an event. I get the rare opportunity of never taking that joy for granted. 

We are afraid to admit how hard we struggle at times.  We are afraid to let you know how many times this week we were in a doctor’s office. 

We are afraid to show you our bruises because we are afraid that you won’t be able to look past them and they will beg the question, “Is he worth it?”

The truth is that as hard as it is,  Benny is worth ANYTHING that this life as a special need’s Mama throws at me.

He is worth it all and I wouldn’t change a single chromosome on his body.