Yo soy La Lay

adventures in family, faith, and Down syndrome

DSAM17 – Day 27 – We have fun.

We have the best friends.

Also, can I post-date this back today about 40 minutes ago??!

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DSAM17 – Day 26 – Resources for other kids

I will be 100% honest – work is pretty crazy right now and my energy to write is fading quickly down to nothing this evening.  However, I came across a link this evening that explains Down syndrome and is appropriate for children.  I like to pass these things on to my family because while Tessa is very alike in a lot of ways, there are noticeable differences that the other kids sometimes notice.  So here…. if you have kids with questions, check this out:

Brains On – What is Down syndrome?

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DSAM – Day 25 – The List

Here’s a list of 50 51 things (that are mine to share) that I worry about on a daily basis:

  1. Ellie.
  2. Do I have clean underwear this morning?
  3. Do I have dishwasher detergent?
  4. Are there too many calories in this breakfast bar?
  5. If I don’t eat this breakfast bar, what will I eat?
  6. There are starving children in the world!
  7. How do I raise my children to care that there are starving children in the world?
  8. Should I really have bought this Dunkin coffee when I could have donated to a fund for starving children in the world?
  9. Is this coffee that I just bought decaf?  Or will I be wired in 15 minutes and not sleep for 3 days?
  10. Speaking of sleep, did I get enough last night?
  11. Is that a gray hair?  Or a blond one?
  12. Did John get out of bed this morning?
  13. Did John have clean underwear this morning?
  14. When did Ellie last brush her teeth?
  15. My God, what is she going to wear to school today?
  16. Are kids being nice to Ellie on the bus?
  17. Is Tessa being nice to her bus driver?
  18. Did I sign their folders for school last night?
  19. Does Ellie’s teacher believe that she read for 30 minutes?  Or does she know that I’m guessing?
  20. Is it bad that I’m guessing?
  21. Do other parents actually keep track of how many minutes their children read?
  22. Do other children read?
  23. Did my students do their homework?
  24. Do I need to call home if my students didn’t do their homework?
  25. Am I fostering responsible humans in my classroom who can be independent young adults if I call their parents and tell them that their child didn’t do their homework?
  26. Did Ellie do her homework?
  27. Why does she hate math homework so much?
  28. Will Tessa hate math?
  29. Will Lauren hate math?
  30. How will I help them with math if I can’t figure out the math problem?
  31. Speaking of math… how much money is left in my grocery budget for the month?
  32. Did I take chicken out of the freezer for dinner?
  33. Can we afford to go out to eat instead?
  34. Are there too many calories in a restaurant meal?
  35. Are there too many calories in a glass of wine?
  36. Is it bad that I have a glass of wine on Tuesday night?
  37. Speaking of wine… when did John and I go on our last date?
  38. Do we go out enough?
  39. Are we missing out on quality time with our kids if we go out again?
  40. Does my mom like watching them on the weekend after doing it all week?
  41. Does she just say yes because she feels bad?
  42. Do my children behave with her?
  43. Do my children behave at school?
  44. What if Lauren is naughty at school?
  45. What if I get cancer and die and can’t teach Lauren to be good in school?
  46. When did I last cut my children’s fingernails?
  47. Does Ellie need to learn to cut her own fingernails now?
  48. Am I holding her responsible enough for her own care?
  49. Am I raising a strong, independent young lady if I don’t make her learn to be responsible for her own care in first grade?
  50. Can she tie her shoes?
  51. Am I a bad mother because I have no idea if she can tie her own shoes?

Anyone notice what is missing from that list? (Which, by the way, I came up with in approximately 12 minutes and 43 seconds because that’s how fast I can type).  This is what is missing from the list:

Image result for trisomy 21 chromosomes

After almost four years, I am so surprised at how little I worry about that goofy little extra chromosome.  It took a little while to get to this point, but truly, at this point, I am far more concerned about the clean underwear.

Just sayin’

IMG_5866

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DSAM17 – Day 24 – The Cutoff

I’ve been so grateful for social media and the ability to connect with other families.

Sometimes, though, I can’t take it.  I have to walk away for a little while.

This mostly happens when really depressing stories about people’s beliefs about Down syndrome are making the rounds.  Sometimes there’s just a significant amount of drama that I don’t feel like reading.  Sometimes people get mean… sometimes my hormones get in the way of my ability to be patient with mean people.  So I walk.

For all it’s good, there can be some exhaustion in problem-solving all the time.  In those moments, I am thankful for the ability to put the Internet away for awhile.

Today is one of those days.

❤️

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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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