Yo soy La Lay

adventures in family, faith, and Down syndrome

In appreciation of just showing up

In my own process of navigating our Down syndrome diagnosis, I have kind of, for better or worse, made it all about me.

From the moment I learned that there were people who cried when they learned the news about Tessa, I essentially said to hell with their feelings, they don’t get to feel that way, she’s my kid.  I’m content and they had better damn well be content too.

And away we went.

I could go on for a long time about whether this was the right choice or not.  The reality is that we all get to have feelings.  And, perhaps more importantly, our feelings are our reality.  Accepting, living with, even enjoying a world with Down syndrome is challenging for some people.  It may still be a challenge for some of my closest family and friends.

This is a note of appreciation, from me to all of you.  Thank you.  Regardless of your feelings or your place in the acceptance process, you show up.  Every time.

I remember that for a couple of months, it was very jolting for me to interact with older teens and adults with Down syndrome.  I’m sure there are a lot of reasons for this… but mostly, I was afraid of acting the wrong way, of trying to be normal, but maybe coming across as not normal… Afraid of saying the wrong thing or looking the wrong way or God knows what else.

I am sure that this is a challenge that my family sometimes faces.  But it doesn’t stop them from showing up.

I had this moment of clarity and deep gratitude last Saturday morning… One Friday per month, our local group puts on a Family Friday event where kids and their siblings get to run free in a daycare facility while the parents chat.  It’s the highlight of our month. ūüėÄ  This month, John’s sister and her family were in town and we asked them to join us for Family Friday.  Without hesitation, brand new baby in tow, they were in.

There are a million great excuses that they could have used to duck out.  Instead, they ventured into our community and got a little more cozy with Down syndrome.

I cannot tell you how much it means to us when friends and family just jump on board.

There are so many other examples of this.  Team Tessa and our amazing friends who raise money for our group.  The friends and family who come and hang out in our UPS for DownS tent on race day.  The willingness to be a part of things that help us connect to a community… The acceptance of Tessa as just plain Tessa, with or without an extra chromosome.

There is no greater gift that can be given to our family than to just show up.  Thank you all for doing that, time and time again.

  

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Lesson #24: She’s just another leaf

I have had very few negative thoughts regarding Down syndrome. ¬†But I’ll let you in on a little secret: for several hours after she joined our family, I was terrified about family pictures. ¬†Somehow, in my brain, I had decided that family and friends would no longer want to take pictures with us because they would not want to have a picture of Tessa hanging on their living room wall.

This is, without a doubt, the most ridiculous thought that I have ever had, bar none.

(Except for maybe the night in college that I thought a bottle of Jack Daniels and some Dixie Cups would make for a good night. ¬†But that’s a whole other story.)

Since she arrived, Tessa has been just another leaf on the family tree. ¬†She’s different, but we all are. ¬†And not one person in our family has taken her as anything less than that.

Being a part of the community of families with children with Down syndrome, I hear a lot of stories. ¬†Most are positive. ¬†Sometimes, however, a mom comes looking for advice on how to deal with family/friends who are struggling to accept her child. ¬†There are families who refuse to acknowledge the baby, or who won’t hold it, or those who treat the child differently through words and actions. ¬†My heart really aches for those families. ¬†It also overflows with love and gratitude for my own.

(Just to clarify – when I say “my family,” I am talking about the whole dang thing, from both John’s side and mine.)

When Tessa was born, I did a really poor job of allowing other people to process our new situation in their own way. ¬†No grieving was allowed on my watch. ¬†Whether I should have let go of that control is a question for a different day, but in reality,¬†I don’t think anyone would have grieved anyway. ¬†Because this is how life really is:

Tessa has four doting grandparents, who love her fiercely and in completely different ways.  They are teachers, snugglers, cheerleaders, and many times, the glue that keeps John and I running smoothly when life is exceptionally busy.

She has aunts and uncles who hold her and play with her as they would any other child. ¬†She adores them. ¬†If there is one thing that we have learned about Tessa’s personality, it’s that once she has attached herself to you, her eyes will look so deep into your eyes that you’ll swear she’s looking right at your soul. ¬†All of her aunts and uncles get those looks.

Tessa’s cousins make her giggle. They poke and prod her, motivating her to get moving. ¬†They give her kisses and pull her hair and sit on her and take her toys just like they would with any other child.

I could not ask for more.

(this pic was taken by my fabulous cousin, Jessica. ¬†It’s blurry now for lots of reasons. ūüėČ )wdowiarz pic

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