Yo soy La Lay

adventures in family, faith, and Down syndrome

Incomprehensible

This morning, with her little button nose smushed up as close to me as she could get, Tessa sang me a song.  I couldn’t understand the words, but her smile told me it was a sweet one.

My day has been filled with moments that I want to freeze in my memory.  Like for many around me, it is hard to digest all that has happened this week.  I find my breath catching in my chest as I soak in the calm breeze in my backyard, or my sweet five-year-old chattering with a robin outside her window.  

We have so much.

I did not wake to the news of Dallas this morning.  Before the national news, another devastating headline about a former student crossed my feed.  He, a troubled child, too adult before he was ready, sat in my study hall not too many years ago and dared me to attempt to control him.

I won him over, quickly, with patience and Jolly Ranchers.

I never found anger to be a useful tool, nor lectures.  I don’t know that either can help a person gain perspective or bring warring sides together.  But a show of love to the unkind, the hurt, the confused – that has seemed to build bridges, at least in my life.

Just a couple months ago, that student crossed my path again, sitting in the office of our building, inquiring about how he might be able to finish his high school degree.  

He had been through so much.  Made so many bad choices.  An adolescent with a brain that did not work like an adult’s, thrown into Big, Heavy situations long before his mind could control his body as he needed it to.

I do not know what chance he will have to finish now.  We could not save him.

Today I have soaked in every little privilege that my life circumstance has afforded me – the pile of books on the playroom floor, which my girls have been raised to love, the box of chocolate from my loving and devoted husband, fresh, clean clothes and our own laundry machine in the basement.  Clean water, clean home, stability, resources, safety, education, love.

We have so much.

I can’t imagine the lives of those who do not live as I do, but I understand that by pure chance, it has been different. And so I learn as much as I can.  I pray and try to be kind and gentle.  I don’t know what else to do.  I don’t know what words to say.  I don’t know how to stop the hurt.

This morning, Tessa sang me a song.  Her sweet words were incomprehensible, but beautiful nonetheless.

We have so much.

Someday I will understand.

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Miss Cranky Pants

Three times I’ve written this and three times, it has been deleted.

Ladies and gentlemen, I am 100% stuck in a rut.  Miss Cranky Pants?  Oh yeah, that’s me.

My hope is that just throwing this out there will somehow help me to snap out of it. I have been told many times that my feelings about developmental delays will ebb and flow… It’s so true. I don’t know if this crabby phase is an “ebb” or a “flow”, but it’s where I am right now.

This all began (kind of) with the planning of Tessa’s first birthday party, which is in a month. I’m thinking a lot about the milestones that are commonly associated with the first year – walking, using a cup, eating table food, first words – and thinking about how hard she is working and how far away these milestones seem to be. She will do them all in her own time. Today, I just wish that one thing would be easy for her. Just one.

I think a lot of this was magnified by the Thanksgiving holiday and time to catch up with family and friends. I found myself talking a lot about what we are working on in therapy and how she is doing. I have an idea in my brain that people have expectations for what an almost-one-year-old should be like. And somehow, I have convinced myself that if people see her and she isn’t that way, the way they are expecting, then they will feel bad for us. Pity is the absolute last thing I want.

She’s so little! Someday, she’ll have her own personality and talents. They are already locked in her little brain somewhere. Because of Down syndrome, the puzzle is a little trickier to figure out, but her strengths will emerge. Rather than frustration, what I really want to feel is cheers for how hard she has worked and how far she has come. She’s army-crawling. She’s holding her own bottle. She’s mostly sitting. She’s babbling like crazy. It’s progress.

In all of this, I would change nothing. Just as I would not change any of the aspects of myself that I struggle with, neither would I in her. All of this serves a purpose. All of the ebbs and flows and smiles and tears and everything else that comes along with an extra chromosome is part of her role in this crazy world. She and all of us are better for it.

There. I’ve said it. I’m in a funk. But I’m feeling better already.

A little cuteness, perhaps? Just one picture today. It’s Tessa, in a restaurant high chair for the first time, while out on a special date with Mommy and Daddy all by herself. Just try not to smile when you see this face…

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On letting go

I shared the following exchange on my Facebook page recently. I was speaking with one of my students. All of the kids are fairly “at risk” (struggling to maintain good grades) and this particular girl has been feeling very overwhelmed and unable to catch up.  She spent awhile telling me that she felt like she just can’t learn.  And then she told me this…

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People really don’t know Down syndrome.

47 chromosomes. Low muscle tone. Ability to exceed expectations. People-first language. Sensitivity to people with different needs. Highly insulting nature of the “r” word. Some people know. Many, maybe even most, do not.

I cannot hold someone accountable for what he has never been taught.

I wrote on Friday about how it drains me to hear the “r” word. In the moment, it’s really crummy. But it’s Sunday now, and I don’t even remember who the kids were that said it. One of my dearest blog friends (who shares her amazing story here) asked me if I had any tips on how to deal with it. My approach comes down to three things:

1. Teach: Remember that people don’t “get it” and we have to teach them. The intention of a person who uses the wrong terminology (like “Down’s baby) is not usually mean-spirited.  Sometimes it is.  Still, we can very simply explain and correct.  When it comes to the “r” words, I usually say something like “hey, so that word kind of bothers me.  Could you use something different?”

2. Don’t preach: Remember that it’s highly personal for us, but not for them.  Ranting and raving doesn’t help. I realize that it should be common sense to avoid the “r” word, but it isn’t. Venting at length does nothing more than make people feel uncomfortable with me. I cannot win all the battles and I win less when I fight with anger.

3. Move on: Let it goooo, let it go! (Are you singing in your head now??) Sometimes, I have to come home and vent to John, but then I stop dwelling on it. For me, the best way to move forward is by treating it as minor in the first place. My student who thought she had Down syndrome? That situation could be handled in three ways… I could ignore it (and probably get mad when it happens again), I could be angry about it (and make her feel upset and I’d probably end up a crotchety old woman), OR, I can see it as a chance to open someone’s view of the world.

The bottom line is this: just as I wouldn’t expect the average Joe on the street to understand the complexities of my child’s needs, neither can I expect that he would understand the feelings that I carry about this beautiful child. When it comes to interacting with the world, I choose empathy. I choose compassion. I choose love. And while I cannot expect the rest of the world to make that choice, I can choose to lead by example.

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(untitled vent.)

I do a lot of language correcting when hanging out with teenagers all day.  Normally, I don’t hear the word “retarded” on a regular basis. In fact, I could really count the number of times, Before and After, that I had to correct it on one hand. In a high school setting, that was promising. It seemed like maybe, the word was disappearing.

Until today.

3 different kids in four hours. Each kid got a lesson. One poor child even got pulled into my office and shown 47 pictures of Tessa all over my walls.

Every single time, it drains all of my energy.

I wonder if that ever stops?

What the heck, man??

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Lesson #30: Things I’ll never say again

1. “As long as it’s healthy.”

It doesn’t matter.

I said this a lot during both my pregnancies – especially when people would ask what gender we were hoping for. It was an easy response… “Oh, we don’t care, as long as it’s healthy.” I worry a lot about that qualifier and the message it sends to other parents – as if anything less than healthy makes a child unwanted. Nobody wants their child to hurt. However, I really cannot say that I would prefer a child without extra needs. In this family, if a child is not healthy, it will still be loved.

2. Is he (_____)ing yet?

It doesn’t matter.

It’s become a predictable habit of mothers these days to talk at length about what babies are doing. We share their weights and heights like trophies of our success as mothers –
the bigger, the better. It’s silly, really. And to a mom who is worried about her child for any given reason, it can be alarming.

I’ve said this before – it’s very freeing to have a diagnosed child who we know is on her own schedule for pretty much everything. But for those children who have no extra needs and are just a little behind, or those who do have extra needs but aren’t diagnosed yet, the comparisons can be unsettling. Even scary. So I’ll leave the milestone questions to the doctor.

3. Can I hold the baby?

When offered, I will, on occasion, accept. However, I’m not asking for the simple fact that I don’t want a mom to have to feel awkward about telling me no.

When Tessa was a new baby and people asked to hold her, it freaked me out. This really wasn’t about the germs, it was about her floppiness, lack of head control, and preference for hyper-extending her arms. I once (jokingly) asked the PT if I needed to coach every person who held her, fully expecting that she would tell me no, as long as it was a short period of time. And then she said “umm…. Unfortunately, yes.” Oookee dokee. It got really awkward for me, trying to explain to so many people why they couldn’t just hold her like they want. And since you can’t always “see” extra needs, nor do you know if a mom is uncomfortable saying no, I prefer to just avoid the situation altogether.

There is no need to walk on eggshells around other moms, but sometimes, a little empathy… a little consideration for others and their stories… that is what can make all the difference in our interactions with each other.

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This Beautiful Life

I only want to write about this one more time before I put this baby to bed.

I am approached by many people who want to know how or why I’m taking this diagnosis “so well.”

I want it to be abundantly clear that Tessa is my baby first.  Sometimes, she is my baby who slept through the night at six weeks.  Sometimes she is my baby who just loves to snuggle.  Sometimes, she is my baby who came a lot earlier than planned.  And sometimes, she is my baby with Down syndrome.

It is not wrong to feel sad, upset, angry, overwhelmed, disappointed, or hurt when you get life-altering news.  My initial reaction was confusion.  I distinctly remember laying my head against the bed, straining to hear what the nurse was saying to John while I was still delivering the placenta (sorry, male readers), and being completely bewildered.  It became very urgent for me to learn what this meant for our little girl (whom I thought was a boy, which made all of this even more perplexing).  But no one ever told me that she wouldn’t live a happy life, so why should I expect that she won’t?

Here’s the reality of Tessa’s beautiful life as I see it:  in very rare instances, a person with Down syndrome may never speak.  And so what??  Is her life not worth living if she never says a word??  How many times have words gotten me in trouble?  How often have I caused pain, hurt, anger, or frustration with my words?  And who would it really hurt if Tessa never speaks?  Me?  What do my feelings matter if my little girl is happy?  What can I really want for her?  To love and be loved.  That is all.

Sometimes, Tessa might deal with disappointment, frustration, and hurt because of her different abilities.  And so will Ellie.  Believe me, both of my children will have to overcome struggles.  If Ellie comes home and tells me that she wants to be a tennis player, I have to be honest, it will concern me a little bit.  I’ve seen her try to walk quickly across a room…. graceful she is not.  However, there’s no reason that she can’t work at it and accomplish what she wants.  That’s how I feel about Tessa.  If she wants to go to college, get married, fly to the moon, am I going to tell her no?  Hold her back?  Stop believing in her?  I have no reason to believe that she won’t be able to do any of those things.  Worse would be to tell her she can’t… or worse, to never have had her to love at all.

I accidentally stumbled into a support group online for women who had terminated their pregnancies for medical reasons.  I was looking for other mom groups for families like ours and it was literally one of those situations where I scrolled and clicked too fast, ending up clicking the link that I didn’t intend to pick.  I will not stand in judgement of these women and their decisions.  I believe that it is between them and God.  But I mourn for those little babies who will never snuggle on the couch with Daddy, who won’t get way too many kisses from their big sister, who won’t have the chance to love simply because of misunderstanding, misinformation, or a lack of confidence to be able to provide for the child.  It is a beautiful life and I am so glad that Tessa is here to enjoy it.

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