Yo soy La Lay

adventures in family, faith, and Down syndrome

Feb 3

Oh mama

by Maggie

Oh mama, you’ve been thrown in the deep end now.  You, with that new little baby nestled in your arms, that little button nose popping out from that flat little bridge, you don’t know what just happened to your world.  It feels broken, I know.

You aren’t going to believe a word I tell you now, but that little fact never seems to stop us mommas anyway.  We’re firmly planted in the After.  You will get there.  I swear you will.

You can’t believe this has happened in your life, but it has.

You don’t understand how no one knew before… All those ultrasounds… No one knew.

No one knew.

You don’t feel equipped to do this. You tell yourself that this isn’t the life you wanted and you don’t know how you are going to manage.

You will manage… more than manage!  You already are. And you will look back and believe me someday.

There will be changes, yes.  Detours in the path.  New lingo to learn.  There is time, so much time.  Your life is moving forward, beautifully.  It’s too much now, but I assure you, it is beautiful.

There will be days when you will yearn to be treated like every other mom.  You will shout from the rooftops that you are “more alike than different!!”  You will balk at the notion that you walk a separate journey.  You will be fierce.

There will be days when just looking at families outside of this circle will make you sad.  Maybe even angry.  Your heart will beg for someone, anyone, to acknowledge that this shit is harder than people can possibly understand.  It’s nothing like what any of those ‘normal’ families deal with.  You will be annoyed.

You own these feelings, mama.  They are yours and they are right and you are just perfect.  Your child is perfect.  You have a new journey, and it will be hers and yours together for awhile, but then just hers and you… you will cheer from the sidelines.

You can, mama.  I swear, you can.  You will.  And so will she.

  

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Jan 4

The Church Fiasco 

by Maggie

I will admit that I work too hard to keep it all together when I’m in public with the family.  Some days are just hard.  Whether it’s uncooperative children who don’t have it in them to listen to their mother or a tired and stressed out husband who just wants to be done shopping, I have a ridiculous, visceral reaction to contrary behavior.

I can’t help it, so y’all are going to have to forgive me.

Now, enter Down syndrome.

Let me be very clear – my little sweetheart does not act out because she has Ds.  She acts out because she is two.  And it’s normal.  Some days are pretty rough.

Aren’t they for all of us?

But this is the perception that I find myself fighting, which has now intensified my need to keep it all together.  I know it’s not really about Down syndrome.  I just really want everyone else to believe me.

Church Sunday started off well enough.  Tessa gave her usual hug to Miss Sheila (who is essentially a stranger, but one of her favorite people) and had a nice snuggle with Uncle Don (who she also adores).  Then, it got a little hairy.

We sit in the pew directly in front of our Praise Team.  John was playing, so it was just me in the pew with the girls.  Ellie was, for once, an angel.  But Tessa decided that it was time to be free.

During the sermon, it started with crawling back and forth.  I tried giving her the Z-vibe, which usually does the trick to calm her. The Z-vibe looks kind of like a purple marker and has a rubber end that Tessa likes to chew on.  When it is “on”, it vibrates.  She loves it.  It’s very soothing.

  
She threw it.

She threw the vibrating Z-vibe and it landed two pews ahead of us, where the most lovely little family was sitting with their children.

I about died.

The children picked it up, having no clue where it came from, and started fiddling with it, clearly amused that God had sent this little vibrating toy to entertain them.  Meanwhile, I’m starting to sweat, wondering how I’m going to survive the rest of service without the dang thing and then ask for it back in a not-awkward way.  Meanwhile, Tessa is now rifling through the diaper bag, throwing hundreds of crayons on the floor (ok, like 15)  and then I’m frantically trying pick up all the crayons (in my stupid Mom Kryptonite skinny jeans) while keeping her from falling off the pew that she is now racing up and down and Ellie’s getting involved and John is just strumming his stupid guitar and watching helplessly from three feet away and I’m seriously sweating now and about to lose my mind.

And all I can think is, “please, Lord, if the people see this, let them see poor parenting and not a poor mom with her disabled child.”

Because it’s not about the Down syndrome.  It’s just my kid, being naughty, as kids do.  I just want people to see that.

 

In case you wondered, we got the Z Vibe back after church ended.  The mother is a special Ed teacher and knew immediately what it was (and therefore, thankfully, what it was not) and who it belonged to.  Thank God for that.

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Dec 29

These boots are made for… crawling.

by Maggie

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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Dec 18

Two

by Maggie

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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Nov 26

A broken musical tradition

by Maggie

So, confession:  I 100% broke my annual tradition of waiting for Christmas music until after Thanksgiving.

Sorry, Mom!

It’s tradition in our family (like in many families) to wait until after the turkey.  Blame it on the two-sick-kids-mom-with-pink-eye-chaos-at-work-foot-of-snow-storm, but the little voice in my head said, “Girl, you need Mariah Carey, stat.”

And so it began.

For the record, there are some Thanksgivingish songs on my rockin’ playlist.  So, I think that excuses my bad behavior.  😉  This morning, this Thanksgiving morning, I’m here…  it’s loosely Thanksgiving.  Loosely.

I don’t care if the house is packed
Or the strings of light are broken
I don’t care if the gifts are wrapped
Or there’s nothing here to open

Love is not a toy, and no paper will conceal it
Love is simply joy that I’m home

I don’t care if the carpet’s stained we’ve got food upon our table
I don’t care if it’s gonna rain, our little room is warm and stable

Love is who we are, and no season can contain it
Love would never fall for that

We sing Oooo oo oo oo oo oo oooo

Let love lead us, love is Christmas

Why so scared that you’ll mess it up? When perfection keeps you haunted
All we need is your best my love, that’s all anyone ever wanted

Love is how we do, let no judgment overrule it
Love I look to you, and I sing

Let love lead us, love is Christmas
Let love lead us, love is Christmas

Love is Christmas and Thanksgiving, too.

Gobble Gobble!

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Nov 25

A day to catch up on life

by Maggie

We really put Girlfriend through the wringer today.  We have had a few days like that lately.  She’s a trooper, Miss Tessa.  She really is.

Two working educator parents means days like this – when we have a scheduled day off during the week, it means we have to jam pack it with all the appointments and phone calls and chores that cannot be done otherwise.  I’m sure that others outside of education must work this way too, maybe.  

Actually, I’m not sure.  I just know that sub plans are a pain in the rear, so for us, everything that can wait, does until we get a weekday off for some random holiday or break.

In any case, with Thanksgiving tomorrow, we double-booked therapies for today (yes, we know that’s not very nice) and then threw in a follow-up visit with her ENT (now that’s just mean).  I don’t know if we mentioned that we had a second set of tubes places in Tessa’s ears about a month ago… It was in the middle of our month-long advocacy-themed Down syndrome Awareness Month, so that little tidbit probably got lost in the shuffle.

(If you want my unsolicited, non-medical advice, I will tell you this: when an ENT tells you to get ear tubes, get them.)

I don’t know what Tessa’s hearing was like before the tubes, but I will say that almost immediately, we have experienced tremendous growth in her speech and general ability to react/interact.  There are some minor trade-offs (the whole crying-when-we-laugh issue is back), but she speaks to us nowand other people outside of the family can understand some of the things that she says!

(For example, no.  We can all clearly hear no.)

There are other words… a whole bunch of animal sounds, the number 2, hi and bye, please and thank you, papa, shh, up, and down.

For this, we are thankful.

But golly, it was a long day.  And even with the tubes, the hearing test was not completely clear.  A follow-up in a few months will hopefully give a better result.  Today, she passed “behaviorally”, which means that when they put her in the soundproof box, she showed behaviors that suggested she was hearing.  However, with the other test that somehow measures the function of her ear (note to self: look this up), she did not pass.  And so we wait three months and try again.

There are so many other tidbits to share about life lately.  So much is rushing around in our brains and on our calendar these days.  Those tidbits are for another time… for a day when I didn’t run through the maze of life responsibility that we did today.  For now, gobble gobble.  I wish you a restful Thanksgiving… and a day to check things off your list too.  May your children cooperate better than mine did. 😉 

On an unrelated note, who is this young woman and what did she do with my four-year-old??!  

 

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Nov 10

A Typical Two-Year-Old 

by Maggie

A few weeks ago, I had the rare opportunity to sit in on one of Tessa’s therapy sessions.  Since we moved, her new therapists come while I am at work and I rely on my mom and the therapy notes to learn about what she is working on.  So, when situations arise where I can be a part of the sessions, it is a treat. 

I was sharing with her DT and OT some of the newer behaviors that she has that are making me bonkers.  All kids do goofy stuff, but sometimes the approach to existing with those behaviors is different when a child has some kind of cognitive delay.  In any case, after my little laundry list of items, her DT laughed and said, “well, she is certainly displaying some typical two-year-old behavior now!”  

This was music to my ears!  For as content as I am with whatever level of development either of my kiddos reaches, it’s fun to see them enter a new stage.  And while typical two-year-old behavior is often “boundary exploring” at best (let’s be honest.  “Naughty” is a better word.), it is impossible not to feel equally overjoyed and overwhelmed that she can now stand up at the refrigerator and pull down every single picture, magnet, calendar, and momento that was unreachable, or uninteresting, two days ago.

Bring on the Terrible Twos…

  

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Oct 31

Advocacy #31: Imagine what if….

by Maggie

For 31 days, we have shared a lot about what advocacy means to our family in our little corner of the world.  On this last day, I invite you to image what if with us.

IMG_9574What if we stopped equating smart with successful?

What if we believed that those who are not “smart” still have something to contribute?

Imagine a mom getting a diagnosis of Down syndrome in a world where it didn’t matter if her child would be smart.  What if she knew that the child would be accepted, taught, cared for, and loved regardless?

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What if we presumed competence in all?  And when someone doesn’t understand, what if, instead of being frustrated, we reacted with patience and love?

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What if we stopped believing that a classroom of learners who struggle is a “dumping ground”?

What if we stopped encouraging families touched by disability to band together in separate places and in separate communities and just embraced everyone?

Imagine parents learning that their child has Down syndrome in a world where they knew that their schools and communities wouldn’t bar them from participating in classrooms and activities.  Imagine never questioning whether your child would be allowed to participate in birthday parties, field trips, assemblies, or just in plain old school.

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What if we stopped believing that the brightest are the best and instead believed that those who are joyful, humble, caring, and kind are what we need most?

What if we stopped seeing advocacy as a way of “helping the less fortunate” and instead just saw it as being a human being?

What if we stopped seeing the disabled as less-fortunate altogether?

What if we always, always chose kind?

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What if we could see beauty in the differences that make each of us unique?

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What if we respected people’s feelings and beliefs and didn’t walk through life with the attitude that a different perspective makes someone a bad person or less worthy of kindness and love?

What if we could stop seeing another perspective as an attack on our own thoughts and feelings?

What if we just chose love?  Always.

YOU can make the difference.  YOU can be the Hands and Feet.  YOU can advocate in small ways, big ways, in thoughts, in actions, with money, with words, or with nothing but kindness.

I have a playlist on my iPhone called “Fight Song.”  It is made up of a series of songs that I find motivational and I listen to it on my way to work every single day.  It’s not that I need motivation to go to work everyday. I actually really love my job.  And it’s not that I’m fighting anything or anyone in particular at all.  These songs just tend to fill me up with the energy and positive feelings that I think are so important. They remind me to be brave, to be kind, and to do good.

The first song, the song I start each and every day with, is below.  As a last thought, before we go back to our regularly scheduled program of family antics and less-relevant rambling, I encourage you to watch the video, listen to the words and imagine if this song could drive what you do every day.

Imagine if this is how we lived.

What if?

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Oct 29

Advocacy #29: Support Early Intervention

by Maggie

Early Intervention is not a new topic here.  The number of posts tagged “Early Intervention” takes up three full pages on this site.  Right now, funding for EI is on the chopping block in Illinois.  We have a budget problem for a lot of reasons and every cranky person in the state has an explanation (some real, some not) and a solution (some constitutional and some not) and while the rest of the world has the benefit of just being able to complain about it without having their worlds turned upside down, my family does not have that luxury.  More on that tomorrow.  Today, some background on EI.

Early Intervention started in 1986.  It provides therapy services for children ages birth to three that show some developmental delays, be they physical, social, emotional, or cognitive.

EI is partially funded by the state, partially through federal funds, and families pay a monthly fee on a sliding scale based on income.

States can decide how to set up their EI programs within some federal guidelines.  Right now in Illinois, a child has to display a 30% delay to qualify.  It is estimated that about about 13% of children qualify for services, but only 20,000 kids are getting services right now (about 3.5%).

Each child develops an Individual Family Service Plan (IFSP) and goals to help the child function in their environment.  Goals are reviewed every six months.  Services (therapies) are scheduled based on what the goals for each child are.  Therapists come to the home to provide these services.

It is estimated that about 50% of children who enter EI as children are able to be remediated in their skills to the point where they do not need Special Education services when they enter the public school system.  Those who are not completely remediated still make significant gains.  And the earlier we start, the farther they go.

Early Intervention is crucial.

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Oct 28

Advocacy #28: RUN

by Maggie

John takes over tonight for one of the kinds of advocacy that I have stayed away from… running.

When Tessa was about a month old, Maggie signed us up for a seminar on inclusion.  If you haven’t figured this out already, Maggie is a bit of a planner (this is also known around the world as a diagnosis of “Type A”).  Anyway, my planning wife was planning for our daughter’s future school three years in advance, while I was just trying to get through a Saturday.

While Mag walked into the seminar with a plan for our future… I walked into the seminar (begrudgingly, I might add, as I am still aiming for personal growth in the advocacy department) with no plan and no idea what I was in for.  When I sat down, I noticed a brochure to be part of the Ups for DownS Charity Running Team.  I looked through the information and here’s what it boiled down to:

  • Run the Chicago Rock n’ Roll Half
  • Raise money for Ups for DownS
  • Raise awareness for Down syndrome

I took home the brochure and told Mag that I felt compelled to run and she told me I had her whole support.  She was tired of me doing races just for “fun” because she always said I could just do that on the street for free.  Being a charity runner made much more sense to her.  Her support was really important because in training, I can be gone on these runs for 2 or 3 hours sometimes.  And while I’m gone enjoying my music and shuffling along, she is there taking care of every burning need of my children.  To those of you who say it’s only a couple hours…clearly you haven’t met my children.  Sorry…back on topic.

When I signed up I thought:  Well, it’s for a good cause, it will be fun to run a race in Chicago, why not?   I mean, the worst case scenario was that I would end up paying most of my commitment to fundraise $250, but it would still be for a good cause and I didn’t really care if that happened.  Two years later, Team Tessa has collectively raced over 100 miles, raised over $8,000 and had 8 people join our team in support of a great cause.

Here’s the point I would like to make about running and advocacy… just like running, sometimes advocacy is difficult.  At times it’s hard to keep advocacy in mind.  At times advocacy asks us to step our of our comfort zone and step up for the people we care about.  And at times running for a cause seems as substantial or more so than those other challenges.  But here’s the thing:  People in our life continue to step up to support her and people like her.  You see, advocacy doesn’t have to be grand and with pomp and circumstance.  Sometimes it can be as simple as shuffling one mile after another to run for a little girl who deserves our love and acceptance just the way she is.  Thanks to all of you that do that…and a shameless plug here: There’s always room on Team Tessa for more runners!

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