Yo soy La Lay

adventures in family, faith, and Down syndrome

DSAM17 – Day 23 – $$$

Let me start with this: I am not asking you to make a donation.  Just FYI.

One of the things that really has surprised me is the number of Down syndrome advocacy groups that exist.  I think it is pretty great that most families can find some way to connect with others and be a part of the larger Down syndrome community.  Groups exist to inform, inspire, educate, advocate… whatever your passion is within this world, you can likely find a group that will fit your beliefs.

We are thankful to have the means to support some of these organizations with our time or our money.  But, it has created a bit of a conundrum for us – how do we decide which organizations to support? 

Each and every family has to decide their priorities for giving.  Here are ours:

1.  We look for groups that align with our vision for Tessa – living an independent life in her community, included in her school, career, and within social circles of her choosing.  What we have sought for help in providing this life for her is information from those who have walked before us.  Our family connects most closely with groups that support our child through inclusion with typical peers, not exclusion in separate spaces.

2. We look for groups with minimal overhead costs.  It is our preference that dollars donated be used directly in support of programming for individuals with Down syndrome and their families.  We are not as likely to support groups with CEOs or directors who make large sums of money.  Our favorite kinds of groups to support are those that are run by volunteers.

3.  Finally, we try to support groups that include individuals with Down syndrome in leadership positions (like on their Boards or other committees).  We believe that in order to best support individuals with Down syndrome, we have to listen to their voices, their needs and concerns.  Very early in Tessa’s life, I heard the phrase “nothing for us without us.”  It has stuck with me for all this time.  It is really vital to hear those voices in the decision-making process for organizations that support life with Down syndrome.

There are three groups that we most often support (either with time or with resources).  Those groups are UPS for DownS (our local group dedicated to the inclusion of individuals with Ds in their communities), the Down Syndrome Diagnosis Network (supporting families birth to three as they navigate the diagnosis experience), and Ruby’s Rainbow (providing scholarships for individuals with Ds as they enter post-secondary schooling).

I couldn’t possibly list out all of the other groups that exist that are worthy of attention, but those are our favorites! ❤️

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DSAM17 – Day 22 – Quiet

I thought life would always be chaotic.

Let’s be honest – with three (fairly) small children, it is chaotic.  There is always crying, or singing, or both, somewhere in my home.  Frazzled is pretty much how we roll.

My mom just texted me about prepping for Christmas and I don’t even have a Halloween costume planned for Tessa yet, so yeah.  What’s she going to be?  No clue.

But for the past 23 minutes, I have had blissful silence.  Ellie is down in the basement watching old episodes of Mr. Rogers.  Tessa has finally fallen asleep, as has Lauren.  John is out and about.  And I am just enjoying my bay window, listening to the rain, and making a list of long-term home goals.  

Moments to recharge can be really hard to come by.  It is so vital that we find them.  At our last DSDN retreat, we learned about compassion fatigue and the desperate need for self-care.  That need is precisely why I’m not doing laundry or dishes right now.  I’m just quiet.

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DSAM17 – Day 21 – A typical life

People with Down syndrome do really “normal” things.  I don’t know why this surprised me, but here are some things that I didn’t realize people with Down syndrome do…

  • Go to college
  • Get married
  • Wear contact lenses
  • Participate in Jury Duty
  • Graduate high school with a real diploma, not just a certificate
  • Drive
  • Swim
  • Give the best hugs ever
  • Drink alcohol
  • Vote
  • Do volunteer work
  • Live into their sixties 
  • Write books
  • Be a model
  • Do anything they want to, really

Things may take a little more time… but people with Down syndrome can live long, productive lives.  Part of the reason why I like to share on a blog is because I know that I am not alone in the things that I didn’t know.  I have learned so much from the stories people have shared – and I feel like the ability to see the lives of people with Down syndrome is one of ways we can change the diagnosis experience for so many families.  Because truly, this girl can!

Tessa, just participating in a regular karate class.  Like a boss.

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DSAM17 – Day 20 – Fort Night

This is not surprising… it’s just what we do.  When Dad is away, the girls will play….

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DSAM17 – Day 19 – Internal Conflict, Part 2

I didn’t realize what a broad range of emotions could come from the birth of a sweet little baby with Down syndrome.  One of the biggest mistakes that I made in those first weeks was holding the expectation that all of our loved ones should process this diagnosis in the same way that I did.  As much as this is a journey that she is on, and I am on, so it is for everyone, really.

In those early days, sadness from others made me mad.  I equated it with people thinking that she was somehow a burden, or just less.  I didn’t understand that for everyone, there is a process, and likely, it is different than mine.  And while I am her mother, and I get to dictate a lot of the things about her life right now, I am not the sole proprietor of the emotions caused by that extra chromosome.  

This gets really difficult when negative emotions about disability are thrown at us.

And in those instances, it’s really easy for me to get angry again.

Anger doesn’t work.

What I really try to work on is compassion, patience, and the ability to show love to those who don’t get how grateful we are.  I’m not always particularly good at that.  As a matter of fact, some days I downright suck at being kind to the well-meaning-but-totally-ridiculous commentators… but I’m trying.  And if there is one thing that I have learned in this regard, it is that if I let them, other people will try too. ❤️

Completely unrelated photo of a really freakin’ cute bath baby:

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DSAM17 – Day 18 – The Huddle

I didn’t know how much support we would have.

I expected the world to go running.  I don’t mean any offense to our friends and family, but a lot of crazy shit goes through your brain in the first moments.  In one desperate nightmare, I pictured a lonely Christmas.  I wondered how many people would be willing to spend time with us, would laugh with us, would understand that our life was sort of the same, but kind of different too.  

The (not so) strange thing was that in the days and weeks as we settled into life, there was so much love surrounding us.  Certainly everyone else needed to process the diagnosis (more on that to come), but our support huddle was intact…

and growing.

We are so thankful to live in an area where we have our choice of organizations and groups to be a part of.  Through our favorite, UPS for DownS, we have made some deep and lasting connections with other families who walk our path.  

In sharing our stories through writing, I’ve also been able to connect with people in our life… colleagues, extended family, long-lost friends, random internet bloggers and moms…. who love Tessa as much as we do.

I am so grateful for the families that hold us up when we are tired, who fill in the little cracks that pop up when we are worn out or run down.  This journey would not be what it is without you. ❤️

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DSAM17 – Day 17 – Internal Conflict, Part One

I never expected to feel conflicted about expectations.

In the early days, I clearly recall clinging to every “normal” occurance in her life.  I remember being laser-focused on how she would break down barriers or beat the odds.  When she rolled from belly to back at 3 weeks old, I was certain that she wouldn’t be a late walker.  She would not be like those other kids!  She would be a rock star!

And then there was the 12 month slump.  At the age of one, when I could no longer ignore that there were some parts of development that were lagging, panic set in.  What if she never walks?  How much more therapy can we add?  What other resources can we provide?

In time, I started to feel bad about these thoughts.  What kind of pressure was I putting on my child if her worth was in how quickly she was able to check off the boxes on the list of milestones?  Suddenly, my internal conflict about the need to be normal was really uncomfortable.  

Here’s the thing: Tessa is amazing… and it has nothing to do with her speech or her movement.  Nothing about meeting milestones makes her a rockstar.  Whether she gets married someday or not, attends college or not, decides to live on her own or with me, she is wonderful and she is worthy.

And so is Ellie.  And so is Lauren.

There is a peace in our home that comes from understanding that whatever her path may be, she is important.  This is not the conclusion that I expected to arrive at on that late December day, but it has made all the difference. ❤️

Vintage Tessa… sitting in a high chair at a restaurant for the first time.  Age unknown.

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DSAM17 – Day 16 – Not the hardest

I will spare my children the embarrassment of laying out the facts here, but the truth of the matter is this:  I was certain that Tessa would be very difficult to parent… the most challenging by far.  I was SURE.  And I was wrong.

I mean, not totally, but yeah.

The fact of the matter is that Ellie at three was WAY worse than Tessa.  And sometimes Lauren is the worst. Sometimes it actually IS Tessa.  There is an ebb and flow to the amount of energy it takes to keep up with their antics.  But Tessa is not the worst.

Most of the time. 😜

(also just sayin’ – I have zero pictures of Lauren crying… what does that say about her?!)

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DSAM17 – Day 15 – The Look

A surprise explained in just a picture.  She is my mini-me. ❤️

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DSAM17 – Day 14 – We get away

I absolutely love to travel.  John is more of a homebody, which, for the sake of balance, is probably good.  I could live out of a suitcase for months at a time… he is more of the weekend away type.

In any case, I thought having a child with Down syndrome would mean that my vagabond tendencies would have to be reigned in.  At the very least, I wondered if we would ever be able to get away without the kids again.  

Spoiler alert: We do.

Truth be told, we are totally blessed with an amazing support system that makes this possible (more on that to come).  Right now, as I relax in a hotel room after a full day of bumming around with my husband, I don’t recall why I thought this might not happen again.  Maybe it was a fear that no one would be able to “handle” her, or would be willing to try, but that couldn’t be farther from the truth.  

And, we also take the kids places.  Pretty much from the get-go, we have been carting Tessa all around God’s green earth to show her the wonderful things around us.  She does pretty well with it (the Dollywood fireworks every night were a little much, but we managed) and while we have yet to make it outside of the Midwest, we have some big travel plans for our future that I can’t wait to get moving on!!

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