Yo soy La Lay

adventures in family, faith, and Down syndrome

Ready…. Set…….

Tonight, we’re gearing up for October. ¬†ūüôā Throughout the next month, I am participating in the 8th Annual 31 for 21 Blog Challenge. ¬†It is a call for bloggers (like me!) to write every day in October to promote Down syndrome awareness. ¬†31 days in October and Down syndrome is 3 copies of the 21st chromosome… make sense?? ¬†Each day in October, I plan to share something that I have learned since Tessa was born nine months ago. ¬†I hope you’ll continue to join us on our journey.

Happy Down Syndrome Awareness Month!

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The Halloween Debate

About a week ago, Ellie announced to all of us that her costume of choice for Halloween is “a potty.”

Digest that for a moment please.

I’ll be honest, I am totally frantic about this. John is not. As a matter of fact, I would say that he’s practically giddy about her choice. That’s what happens when you teach eighth graders all day long.

I have attempted to change her mind, offering amazing costume after amazing costume to entice her interests. Frozen? We can do Frozen! Dora? Doc McStuffins? I’m desperate enough to let her be a princess!! I am failing. For a brief moment last week, she decided that her costume would be “Ellie,” but after only a few hours, we were back on the toilet train.

At what point do I put my foot down and force a reasonable choice? Or should I just swallow my pride and let Ellie deal with the embarrassing pictures when she’s 18 and creating a slideshow of pictures for her high school graduation?

My strategy, for now, is compromise. Yes, you can dress like a potty at our Halloween party, where our family and friends know us and won’t think we are nutcases. No, you can’t wear it for Trick-or-Treating. I think that’s fair. Maybe even reasonable.

Why do I feel like this is foreshadowing my life when she’s an adolescent?

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Nine Months

Well, the car seat carrier is getting heavy. ¬†I’m not sure how much longer I will be able to cart my sack of potatoes around in it without enrolling in a gym to build up some muscles. ¬†One of my most favorite things about Tessa is the fact that she literally melts into your shoulder when you hold her. ¬†It’s a product of her low muscle tone (meaning: it takes her more energy to get the muscles going than is typical) and I adore it. ¬†However, when it comes to her being carried in a car seat or otherwise, she gets heavy fast. ¬†With little to no assistance from her own muscles, mine are tired.

I bring this up only because we had a nine-month visit with Tessa’s pediatrician today and she is tipping the scales ūüėČ at almost 17 pounds and 26 inches these days. ¬†She’s essentially not on the growth charts for height or head circumference, though not surprisingly, her weight was on the percentile charts. ¬†On the old, no-longer-in-use Down syndrome growth charts, she’s at a solid 50th percentile in all areas and continues to grow. ¬†And, as John so correctly noted, she’s in the 100th percentile for cuteness. ¬†For comparison’s sake, she’s about the size that Ellie was at 5 months.

(Yes, I did run home and check Ellie’s¬†baby book for that comparison. ¬†But, for the record, I was only trying to determine how much longer I might be able to¬†keep Tessa in the six month clothes, based on what Ellie was wearing. ¬†I think we’ll get through the fall and maybe part of the winter…. yippee!)

With good reports from cardiology, her ENT, and her¬†eye doctor, we are thankful to have a little break from appointments until the end of the year. ¬†We don’t have to go back to cardiology until she is about 2 and a half. ¬†They are still monitoring the very, very small hole that Tessa has between the top two chambers of her heart. ¬†It is causing no issues and we fully expect that the hole will close on its own in the next couple of years. ¬†If not, she may have surgery at around 3-5 years of age. ¬†No ear infections recently, tubes are still in, eyesight is normal, clogged tear duct resolved months ago… we’re in good shape! ¬†For once, when the doctor asked for any changes to her medical history, I had nothing to add!! ¬†Tessa did get her flu shot today as well and took it like a total champ. ¬†She puffed out her lower lip a bit, but there was no horrific, blood-curdling scream as her sister tends to do. ¬†We had originally thought that Tessa might be our drama queen, but I have to tell ya, she is not showing any signs of being dramatic at this time. ¬†Let’s keep it going.

I’ve been oddly reflective over the past couple of weeks, but am saving my posts up for the 31 for 21 Blog Challenge that I will take part in during the month of October (which happens to be Down Syndrome Awareness Month). ¬†More details coming soon…. And since my crazy schedule is keeping me from taking a tremendous number of pictures these days, I leave you only with Tessa’s new sleeping position… and solid evidence as to why I pick out the girls’ clothes every day (not John):

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At least they are just pajamas, but poor Tessa… ūüôāphoto (12)

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The longest yard

Ok, so not a yard… more like six inches… but still. ¬†I’m not going to take two minutes of your time to talk your ear off today. ¬†Instead, I’m going to share two minutes of Tessa that literally has me floating right now.

If you’ve been following Tessa for quite some time… or if you read my post about my defective child, what happens at 1:47 might just get you, too. ¬†I watched the video about 4 times before I saw it…

To set this up, we’ve been struggling a bit to find things that motivate Tessa to move. ¬†Today, I set up my iPhone camera to record her looking at herself. ¬†This is what we got:

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Presenting: My Defective Child

I did something really dumb.

Well, not really that dumb, I guess. ¬†That’s kind of melodramatic. ¬†But still.

Last week, I was invited to talk to our Child Development classes about Tessa and her Down syndrome. ¬†They were starting a unit on birth defects (which isn’t how I, personally, would categorize her extra chromosome, but whatever) and the teacher thought I could provide an interesting perspective.

I was totally thrilled to do it. ¬†I feel really excited to share my girls with people. ¬†I think it helps to make Down syndrome less odd for those who don’t have contact with it. ¬†Anything we can do to stop making Ds so stigmatized, I’m on board. ¬†And then I got kind of gung-ho about the whole thing and made a PowerPoint with pictures and diagrams. ¬†At the last minute, I decided that I would include a video of Ellie at nine¬†months and Tessa now (almost nine months) to show the difference. That’s kind of where I got myself in trouble.

We are making SO MUCH progress with little Miss Tessa!  Listen to her talk:

Forgive the awkward camera angles, please. ¬†She won’t talk if she knows the camera is on her.

And here, she’s getting a little early-morning ab workout:

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She’s so close to sitting and she’s pulling up into a crawling-like position and she’s eating like a champ. ¬†I didn’t need the video reminder of her delays, but there is was. ¬†Ellie, so so so cute at nine months, clapping, sitting, babbling. ¬†I got a little teary. ¬†(For the record, I’m really not a crier.) ¬†I’m not sure if it was seeing my threenager so cute and cuddly and small or seeing the progress that Tessa still has to make, but I can tell you that those videos did not make it into the PowerPoint.

Someday, I’ll be really ready to love and embrace watching all my old videos of Ellie. ¬†I’m just delayed in that area right now.

The presentation, as a whole, was actually pretty good and very well received. ¬†I let them ask me questions about Tessa and got some good ones. ¬†The vast majority of them were very concerned about how she will wear glasses if she needs them (since she has no nasal bridge) and wondered if she could wear contacts. ¬†They asked how it felt to get the diagnosis (that’s complex), wondered if I wanted more kids (yes), asked if she could do things like drive and live on her own (probably), and were very respectful. ¬†One girl asked about why we didn’t do any prenatal tests (that was an awkward thing to explain…carefully… in a public school).

I’m so glad that I went to talk to these kids! ¬†I had the opportunity to tell them¬†about how she is actually much more alike than different and¬†that is what really matters. ¬†One student asked me how my day-to-day is different with Tessa than it was with Ellie. ¬†And I was happy to report that, besides the therapy, it isn’t.

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Mad vocabulary skillz

Today I took Tessa to the doctor. She has a cold and since her last cold put her in the hospital for a week, we are being more vigilant.

Yay, copays! :p

In any case, the doctor we saw was new to the practice, so I had the joy of filling her in on Tessa’s medical history. As we got to the end of the appointment, she said to me, “So, you must be in the medical field. What do you do?”

I wasn’t quite sure how she came to that conclusion. What I do is virtually the exact opposite of medicine. Do schools make people healthy?? No, no, no. Schools breed yucky little diseases and keep these doctors working! I just laughed and responded that I’m actually a teacher, then asked how she got that idea.

“Wow,” she said, “you use medical terminology very well!”

Umm, yes. I suppose that at this point, the jargon is more natural to me than the average Joe Schmoe on the street. I feel a little irked, but also a little proud, that she was impressed by my vocabulary. I don’t necessarily want any opportunities to improve it, but at least I know that if I’m ever at a cocktail party with some doctors, I can blend right in.

Who am I kidding? Me? At a cocktail party?? Not unless they are serving margaritas and Bud Light…

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Giggles

Okay, okay, okay. ¬†For heaven’s sake, enough with the Debbie Downer posts.

I mean, seriously.

Can I share some good?

First, this kid is potty trained:

photo (11)Why she wouldn’t smile, I’m not quite sure. ¬†I just decided to join in with her. ¬†And the cat face? ¬†We went to a “Fall Festival” fundraiser for Down syndrome awareness,,, we aren’t really cat people, but Ellie likes to be different.

Anyway…. the potty training… it’s done. ¬†They do it when they are ready, ya’ll.

Also, this kid laughs:

IMG_6178I cannot even begin to tell you what joy filled us to hear her laugh for the first time. ¬†It caught us totally off-guard and it was AHmazing. ¬†I have replayed the moment in my head a thousand times, hoping that the sound and the feeling¬†never leaves my memory. ¬†In the following video, you can kind of hear it. ¬†Unfortunately, pretty much¬†the only thing that makes her giggle (for now) is an obnoxious, fake laugh from John. ¬†It’s a little tricky to hear her, but still worth the view, because her smile alone is rockin’:

Tessa is still rolling all over, pushing up on her arms and now gets to her knees pretty often, too. ¬†She can’t really pull her belly up off the floor, but she is engaging her hands a lot more. ¬†We have set a very loose goal of sitting by Columbus Day, crawling by Christmas, remembering, though, that she will do it all in her own time. ¬†She is loving food of all kinds. We have yet to find a puree that she doesn’t like (of course, we haven’t ventured into the meat variety yet… eew). ¬†She is “talking” up a storm, finally mastering a “buh” sound and sometimes a “duh.” ¬†As her core gets stronger, she will be able to laugh more and make louder sounds. ¬†She spends a lot of time folded in half, chewing on her toes, like lots of kids do. ¬†She is infamous for getting stuck underneath the furniture. ¬†We think teeth may be¬†coming soon, as she is drooling up a storm and chewing on everything that she can get into her mouth. ¬†Still, she is an awesome, easygoing, happy little baby.

And now, cuteness:

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When you can’t hold all the babies you want

In the moments following Tessa’s birth, after the doctors and nurses left and it was just John, my mom, and I, we processed.

I write to you today having just had a “conversation” with another blogger whose daughter also has special needs. I want to explain to her – and you – why my reaction to a life-altering diagnosis was fairly mundane. While there are many, many life reasons that are a part of it, two stick out most prominently.

My mom hadn’t been in the room when Tessa was born and diagnosed. She had just shown up to the hospital to bring John some lunch and to keep me company while we waited for the baby. While I believe that she knew the baby had arrived before she entered, she essentially walked into our strange post-birth vortex on accident. I don’t remember telling her about Tessa or Down syndrome or anything else when she arrived. Maybe she remembers those moments, and maybe someday I’ll get her to share them with all of us, but having her there was one of the catalysts for just moving forward. Soon there would be other family arriving to meet our girl and I sure as hell wasn’t going to have a pity party after I had just given birth.

Besides (and probably more importantly), the road to Tessa was not smooth. When couples set out to have a family, nobody tells them how hard it can be to get the family that they expect. It’s hard for me to not feel envious that for some people, the “having a baby” part is so easy… especially when they take it for granted. For us, it has not been so.

Our first baby was not planned. We were set to head off on a three week road trip and while packing, it dawned on me that I hadn’t had a period in… awhile. I took a test, it was positive, and we freaked out. We told our families. We bought a little AC/DC onesie. We had an ultrasound and saw its little heartbeat. A week later, after another ultrasound, we learned that the baby did not survive. Nine weeks in the womb. My body did not naturally miscarry, so a D&C followed soon after.

Next was Ellie. We know how that turned out. She is wild. (And, currently involved in quite the love triangle at daycare. Good Lord.)

We planned the next baby for a time that was going to be convenient for us (or so we thought). It took a couple months, but soon there was another positive test. In an attempt to calm my nerves, my doctor let me have blood draws to check my hormone levels. They didn’t behave as they should. It was not looking good. I carried that wee one for 10 weeks before we had official confirmation that she would never be born.

Genetic tests following both of my D&Cs found no abnormalities in either child.

I carry those babies around in my heart and think of them most days. Mostly, I imagine that a woman who died before having children might be holding them in Heaven. Maybe that’s crazy, but it helps.

John’s reaction to Down syndrome was more typical. He mourned the baby that we had planned to get but didn’t come. He worried from the moment she was diagnosed. He wondered what kind of life we would all have. I’m certain that my own attitude made him feel badly about his reaction.

If you are struggling with your child’s diagnosis, please know that you are not alone. His reaction wasn’t wrong and neither is yours.

In a moment of sheer panic, John turned to me and asked how I could possibly be fine with “all of this.” My response was simply that when you don’t get to hold all of your babies, the ones that do make it just feel even more miraculous.

That is why I can take this in stride. Tessa’s very existence on this planet is something that not all babies will get to experience. I am so desperately thankful that I have been able to hold and tickle and kiss this little being. That is all. Because we don’t always get to hold all the babies that we want to.

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