Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Unsuspecting Mall Walkers

Dear Unsuspecting Mall Walkers,

I’m sure you enjoy your mall walks on Saturday mornings.  You go early enough in the day that you can avoid the crowds of strollers, the throngs of people out to see the Craft Fair in the center of the mall or the raucous teenagers causing disturbances as they navigate their awkward relationships and newfound freedom to explore.

We headed to the mall early this morning, too.  The early rain foiled our plans to head out to a local pumpkin farm but by 9:00, the children just needed to be out of the house.  Hoping to avoid spending money to do anything, we made the decision to get Tessa some practice in her walker at the local mall.

Looking back, this was a terrible decision.

I should have known this when one of the following things happened before we left:

  1. Ellie started complaining of a headache, which always means that she is about to get some sort of illness.
  2. Tessa unrolled an entire roll of toilet paper and threw it into the (running) shower.
  3. I put on skinny jeans.

Normally, we keep a tall bar on the back of the walker that allows us to grab hold of our speed demon when she takes off.  Today, we did not have it.

Today, we should have had it.

So to all of you unsuspecting mall walkers, who got to mix up your workout routine to dodge and weave while she careened around corners and at times, beelined right toward to you as fast as she could so that she wouldn’t miss a chance to say hello… well, I’m sorry.

And to you, shop owners, who were busy setting up for your day when a loud almost-three-year-old showed up in your store and shouted “HI!” to all your unsuspecting customers (actually, #sorrynotsorry for this one).

But especially to you, Man Who She Tried To Follow into the Bathroom.

Yes, that happened.

We stayed for precisely 22 minutes, 14 of which were spent trying to convince Tessa to walk out of the building, ultimately throwing her angry little body over my shoulder while John carried the giant walker and the wilting five-year-old back to the car.  Once we had exited, we paused to reshuffle children and equipment and suddenly there was vomit on my shoes from the now completely wilted Ellie and John and I just laughed because what the hell were we thinking in the first place??

So, sorry.  I can’t promise we won’t be back anytime soon because community integration and stuff, but hey, at least we’ll put the bar on the back of the walker and try to control the chaos just a little bit.

Most sincerely,

A Tired Mom of Two Wild Children.

img_2932

This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

Leave a comment »

Advocacy #21: Inclusion Part 1

The first in a series on inclusion and what that means to us….

Because everyone can add to the richness of community.

Because everyone has value.

Because no one likes to be excluded.

Because no one likes to be told they can’t.

Because it’s good for everyone.

EVERYONE.

Because there is always a way.

Leave a comment »

On abandonment

We’ve all seen the latest story that is trending on Facebook… you know the one, the story of the father who is (allegedly) choosing to raise his son, diagnosed with Down syndrome at birth, in spite of the mother’s choice to (allegedly) abandon the child.  You can google the story if you haven’t seen it already.  I honestly can’t decide if any of it is credible enough to merit a link.  What I will say is this:

I will not demonize the mother for the choice that she seems to have made, nor will I canonize the father for taking his son to New Zealand in search of better opportunities.

While the choice to leave my child to be adopted in the face of her diagnosis is clearly not the choice that I would make, understand that I am part of a strong and loving marriage, we aren’t rich, but we are comfortable enough, and we have the support of family and friends.  Sometimes, the most loving thing that a birth parent can do for her child is to recognize that she is not in a place to provide what is needed.  And there are many loving families desperate to welcome a child into their homes.

More importantly, I beg you, do not be naive enough to think that these very scenarios do not play out in hospitals across the United States.  Many doctors (thankfully, not mine) deliver diagnoses like these as if they are devastating, miserable, horrific occasions.  It’s not just Down syndrome – any deviation from the neurotypical path is scary, but it does not have to be a death sentence.  And while the gender of the ‘parent who stayed’ is often reversed, there are relationships that fall apart in the face of all kinds of adversity – including the strain of a child with special needs.

We will commend the father for providing for his son, but have we abandoned our own?  Will we invite the little boy with Down syndrome in our son’s class to his birthday party?  And then truly and genuinely allow ourselves to see him as just another 8-year-old boy?  Will we set up a playdate with the neighbor’s daughter who has autism?  Will we accept a child with a severe learning disability into our classrooms and do everything we can to support his desire to learn?  Do we refuse to abandon the children who live in our own community?  Without patronizing, without any air of superiority or feeling of having done a good deed… if you want to make a difference in this world, this is your chance.

Pray for the families that struggle under the strain of a world that has not yet found a way to embrace their child.

Encourage inclusion, acceptance, kindness, and compassion.

Let your actions serve as example to others.

Choose love.

IMG_7558

3 Comments »

My new friends

I have spent my afternoon trying to infiltrate the Down syndrome community.  There is no secret password, no special knock.  It’s not a closed community, nor is it unfriendly or unwelcoming.  But it is foreign to me.  The vocabulary is new, the discussions, different.  It’s full of love, laughter, frustration, hope, and it is somewhere that I now belong.  I’m just not sure how. 

We have previously been contacted by Ann, one of the family support coordinators from NADS (National Association of Down Syndrome… go ahead, chuckle at the acronym.  We always do!).  She has called me a few times and each time, I told her I was still processing and not sure what to talk to her about or what we would need as a family.  A few days ago, I had decided that I was ready, that it was time to reach out to other people who are navigating through this experience as we are.  So I put “email Ann” on my list of things to do… at the bottom… and then I never got around to it.  Putting it off?  Still not sure what to say?  Just very busy?  I’m not sure.

Today, out of the blue, she called me!  Thank you, God!  She sent me lots of information about parent groups and other activities to consider.  We have lots of support from family and friends… but sometimes it can feel like I’m on an island, trying to navigate the challenges of Tessa’s world!  The ball is in our court now.

Sometimes, I feel a little “late to the party” when it comes to Down syndrome, or maybe just like an outsider still.  I have been looking through and following blogs started by families with little boys and girls like Tessa… families who are farther on their journey than we are, or who had a prenatal diagnosis and “know more” before their babies are born than we know two months into Tessa’s life.  I have shied away from online communities because of the drama and weird “trolls”, but I’ve found a home reading the stories of those few that I have encountered in the blogging world.  And soon, we will venture out to a Bowl-A-Thon or a conference or a playgroup and I’ll start to feel more like I am a part of our new community.  Soon.

 

1 Comment »