Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Nieces and Nephews

To my darling nieces and nephews,

I really love being a mom… and probably equally as much, I love being your aunt!!  It makes me so happy to watch you all play and learn and grow.  This weekend, I got to see all eight of you and boy, it was so much fun!!

You are all so different and that is fun to watch.  You all love to play the things that are most exciting for you… and as I watched this weekend, I saw that you each play in your own special way.  Some of you are bossy, some of you are not.  Maybe you are quiet or silly or sweet or grumbly.  One or two of you like to play one-on-one, where you are alone with an adult or just one cousin.  Some others like to put on a show for everyone.  I know that some of you are starting to notice that Tessa is a little different than everyone, too.  She has some different things that she uses, like her leg braces or her walker.  Sometimes she says a lot of words to you but you can’t understand what she says.  Or she uses her hands for sign language.

All of you are growing fast fast fast, even Tessa.  It’s hard for her to walk or talk like you big kids, so I know you sometimes forget that she is not a baby.  I love when she plays with you!  I hope that when she sees you run, she’ll want to run too!  She learns a lot by watching what you do.  That doesn’t mean that you always have to be on your best behavior when you are around her (but you do have to be on your best behavior because your parents say so).

If you have questions about the things that she does, you can always ask me or Uncle Johnny.  What is most important is that you just keep playing with her like all the other kids.  She is a tough little girl, just like the rest of you, and she just wants to do the things that you do… it just takes her a little longer to learn how.

Love you guys!

Auntie Mags

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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.

 

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Dear Kristina and Sarah

Dear Kristina and Sarah,

Thank you so much for visiting our home, listening to our story, and being part of a project that is open to changing the dialog about disability in the medical community.

(For readers who are “new” to Kristina and Sarah, these two ladies are a part of LEND, the University of Illinois at Chicago’s program for Leadership and Education in Neurodevelopmental and related Disabilities.  They came to our house last weekend to talk with us about how disability has impacted our family.  You can find out more about their project here.)

I’m sure you thought we might be a little crazy.  I’m sorry that my children pretty much force-fed you chips for two hours.  Thank you for patiently listening as Ellie read you 47 Strings.  It’s how she makes sense of Down syndrome right now,  and boy, I’m sure you can tell, she loves to have an audience.

(A reminder that you promised not to write about her offering you wine.  I’m still blushing.)

As I told you that evening, we believe that the type of advocacy that fits our family is telling people about our life – it’s one of the main reasons that I write in an open forum rather than in a personal journal.  I would love to think that we can change minds just by being out and about in the community, but I also know that almost three years ago, when I was sitting in my hospital room alone while my new baby slept down in the NICU, I craved information.  I needed to know what life would be like.  And I found that information by reading the stories that people had shared online.

We are so grateful to know that future medical professionals are willing to listen, learn, and be influenced by the voices of the self-advocates that meet with your group.  I appreciate that you listened to our story, and that you will have the opportunity to hear from so many others who walk parallel paths.  Certainly our story is not the single story that speaks for all those with disability.  But thank you for taking in our perspective, and for already making a difference in the lives of families, just by LENDing an ear.

Maggie

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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.

 

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Dear Kellie

Dear Kellie,

(No, not you, Kelly.  That’s another post for another day. 🙂 )

In an odd coincidence, perhaps foreshadowing what was to come, on the day that my OB called to tell me that my HCG levels were rising nicely and that I could expect this pregnancy to continue, I spent the day with you.  Well before the words “Down syndrome” or “inclusion” or “least restrictive environment” were a part of my every day thoughts, before my life was catapulted in an entirely different direction, my task was to shadow you, an elementary school principal, so that I could learn about your position.

I had chosen your school because you had been highly recommended to me (one of the best, they told me) and because at the time, I knew that someday, Ellie and this little one growing in my belly, would walk the halls of your building as students.

I was nervous, having not stepped foot in an elementary building since I was a child myself.  But you were kind and helpful, welcoming me into your day and talking me through your usual schedule.

On the docket for our day was a family visit.  This new family had just moved into the district, you explained, and while they lived within the boundaries of this building, one of the children had a disability.  You explained to me that while the other two siblings would be able to attend your school, the littlest girl would need to be placed in another building, where children with her type of disability were housed, so that her needs could be met.  You and I would travel to the other building, meet with the parents and the other principal, tour that school, and our goal was to help the parent understand why his daughter could not attend her home school.  Her parents were pushing for her to stay at the home school, and in your words, that isn’t how things are done in your district.

I was floored.

Before I ever had Tessa, before I was as well-versed in the law as I am now, before this fight for inclusion had come the forefront of my mind, I knew this was wrong. I knew it.  I didn’t understand how this child could be separated, segregated, away from her family, away from her neighborhood.  At the time, I didn’t know enough to ask the right questions; I didn’t know to push you to think about this in a different way.  But I knew it was wrong.  And to be honest, I think you did, too.

It is because of this very day, that promptly after Tessa was born, we made a plan to move before she would go to school. My feelings on that day drive so much of what I do now.  I cannot even imagine how different that day could have been if I were to live it today.  Because today, I have a stronger voice, and I use it.  I wish, for that girl, on that day, I would have said something.  I suppose I can be thankful that God put me in that place, on that day, to prepare me to advocate in the future.  I understand that you have moved on from that building and pray that you are in a district that encourages you to promote education in the least restrictive environment for all students, as is required by law.  I pray that you no longer group students based on a diagnosis, and that you have grown in some small way to understand that segregation is wholly inappropriate for children to reach their potential.

All the best,

Maggie

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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.

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The Walker

Ok, let me level with you here.

This is Tessa’s walker.


I hate it.

We have actually had it in our home for quite some time.  It largely sat unused for several weeks, a giant elephant in the corner, taunting us with it’s slick silver bars and fake leather arm support.

Have I mentioned that I hate it?

I hated her orthotics just as much at first, though now that hate has mellowed to a slow burning irritation.  I struggle quite deeply with the fact that her disability is worn on her face.  I know that there are equally as many drawbacks to having a disability that is not visible to any Joe Schmoe, but I wish that I knew that some people, some day, would pass her on the street and not just see Down syndrome.  When there is equipment, well, it just draws attention to her challenges.

In any case, we have the walker now and while I hate it, I have had to slowly come around because it is what she needs right now.  So much of parenting is reminding myself that it’s not about me; it’s about my children and their lives and doing what is best for them to grow strong and independent.  So while I may carry my own insecurities about people having pity on the girl with the walker, the more important cause is helping Tessa get up on her own two feet.

How challenging it is to see our children fight their own battles!!

The milestone of the day for us (me, really) was that we took the walker out of the house for the first time.  When Tessa’s therapists came, they suggested a session in the park a short walk from our house.  So off they went, and Tessa, strapped into her little walker, just raced along the path, shuffling her little feet as fast as she could.

She, the child who cried at the site of her walker just three weeks ago, went about a quarter mile – all the way to the park, actually.  She made it.

It’s not about me.  It’s not about the people who gawk as they drive by us peddling on down the road.  It’s about Tessa, and it’s about getting her wherever it is that she wants to go.

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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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