Yo soy La Lay

adventures in family, faith, and Down syndrome

These boots are made for… crawling.

In case you were wondering, no, Tessa is still not walking.  I don’t expect her to in the near future.  In fact, I’m not sure that a human being exists on this planet that is less motivated to walk than she is.

No, really.

She can stand.  I’ve seen her do it. And she can travel across the room on her feet with very minimal support from an adult.  When she wants.

If she wants.

I’m not fretting about this at all, actually.  Quite the contrary.  Cool as a cucumber over here.  No, this is not sarcasm.  I know, I know, this is not what one might typically expect, given my attitude in previous posts.  One year ago, I was impatient.  I will still working on being “ok” with our own pace.

(In this moment, the fact that I was working on it is almost laughable.  I can’t figure out why, but right now, not being “ok” with a slower pace seems silly.)

In any case, we have put all the supports in place that she might benefit from.  Weekly therapy (which again, is not to speed progress, but to ensure that skills are developed correctly), Spio compression suit and pants, orthotic braces for her legs/feet, the most expensive pair of shoes I have ever purchased (they were 50 bucks… I’m cheap)…. Getting Tessa dressed in the morning burns as many calories as a session with Jillian Michaels.

But I digress.

She will walk, I am sure.  She just needs to find the right motivation.

As a side note, we met with our new pediatrician for the first time yesterday.  The appointment was great… Except when she asked about Tessa walking.  I literally had to bite my lip to keep from laughing when she suggested we try “putting some things in higher places so she has to work to get them.”  No shit.

The good thing is that Little Miss is indeed quite little, still under 22 pounds.  And, she is also quite cute.  Just look at how she charms her way out of walking with her Mimi today:

  

Girlfriend will get there when she gets there.  For now, I’ll just be thankful for the extra arm workout I get from hauling her around. After all, if she walks even half as fast as she crawls, we are in trouble.

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Balance

I want both of my girls to reach their full potential.

I want them to have choices.

I see my job as a parent to raise them to be kind, to be compassionate and loving and hopeful.  To push limits, yes.  To take risks, yes.  (Appropriate risks.   Let’s not get carried away here.)  They should contribute.  They should leave their mark.

I want them to soar.

We do not know what either child’s potential may be.  We don’t yet know their hopes and dreams.  We only know that our work right now is to raise them with the tools that they will need to be all of their wonderful dreams.

There is no harm in feeling that there are no limits on Tessa’s potential.  There is no reason not to think that with the right supports, she can do whatever she sets her mind to.

However, there is harm in feeling like anything less than “typical” is not successful and not worthy of praise.  There is harm in the notion that if my child does not live a life that is mainstream or typical, that she, and I, have failed.

Right now, I’m seeking perspective and balance.  I’m looking for someone to tell me that when she is 27, no matter if she works in a grocery store and lives with me or if she is a high-powered, politically connected self-advocate out changing the laws of the land, she is of value. 

know that both of these paths are worthy.

I’m wholly wrapped up in the mindset that success for her should not be measured by how typical her life is.  I know that the only ends that matter are a life filled with love and kindness and humbleness and service.  I want her to have all the tools that she needs for whichever path unfolds.  I’m content just to love my daughter, however she grows.  

I don’t feel the need to justify her existence or prove that she is worthy of life because of how normal she is.

I will push her, yes, and expect that she push herself.  We pursue inclusion for Tessa because she has a right to equal access.  She has the right to forge her own path and to have choices.  She should, just like her sister, be exposed to people with all kinds of abilities and viewpoints and backgrounds.  Inclusion is best for all, not just for people with disabilities.  I will not hold her back, nor will I let society.  I will not tell her she can’t do it, whatever it may be. 

I love her, no matter what.

In reality, either child may soar.  Either child may flounder.  Either child may achieve her highest potential.  Either child may not.  We can only do our best.  I just want to feel that whatever our best may be will be valued and revered by those around us.

Our journey matters.

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Two

Two is such a sweet little word.  Two.  Just say it out loud.  Come on, do it.  Seriously.

It makes me smile, and so does this beautiful face:

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And so, now she is two and we are smiling.

This isn’t an entry about a path to acceptance or how far we have come.  It’s not meant to tell you all the wonderful things that she has accomplished this year.  I don’t feel like celebrating all the hard work and the progress, I just want to celebrate her and who she is and what she means to our family.

At two, she’s fun and feisty.  She loves to say hello to strangers in the store.  She throws her arms out when she wants to be held and is crazy persistent with her demands.

Her favorite food is vanilla Oreos, which she daintily holds between thumb and index finger and slowly nibbles away at each night after dinner.  One cookie is never enough.

She doesn’t much feel like walking.  Crawling suits her well enough for now.  She has a great stink-eye when she’s not into whatever you are requesting that she do.  The therapists get it often.  So do I.

Her enthusiastic “Hiiieeeeeeeee” when I walk in the door makes me grin every time.

She’s upset by laughter still, but calmed by big hugs.  She loves to read books and make animal sounds.  She gets angry at bedtime.  Bright and early in the morning, she pops up and chatters Ellie’s ear off until she gets a response.

She cracks herself up.

She sings.  It is the sweetest little sound.

She’s been worth every stretch mark and extra pound that I haven’t lost.  Every chaotic mealtime with two small children instead of just one.  Every frantic dash to clean up before therapy.  She’s worth all of the everything.

And really, all of the everything is nothing compared to our love for her and our gratefulness to be raising her.

Two has come quickly.  The other years, I am sure, will be no different.  I am just so thankful to have her to say hi! when I walk in the door, to give hugs in the morning, to steal hearts and change minds and to teach her sister (and maybe some others) a little something about kindness and sharing and love.

Happy birthday, Tessa!

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