Down Syndrome | Yo soy La Lay

Giggles

by Maggie

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:

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:

I 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

by Maggie

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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Down syndrome doesn’t suck.

by Maggie

I don’t prefer to give most people who berate and belittle people with Down syndrome any consideration. But I just need you to understand something very important today.

Down syndrome doesn’t suck.

I’ve watched a lot of really, really crappy things happen to great people recently. Pain beyond my ability to comprehend surges through the hearts of new parents kissing their babies goodbye too soon. Families devastated by poverty, war, hate. There are absolutely horrific events happening all over my community… all over the world.

And apparently, the birth of my baby girl is one of them.

Recently, Richard Dawkins, a famous geneticist and author (among other things… a**hole being one of them) told a mother expecting a baby with Down syndrome that it would be immoral to continue with her pregnancy, given that she knew about the condition. He said that people should try to “reduce suffering” when they can and that bringing a child like Tessa into the world isn’t right because she will suffer and won’t contribute to society.

But, Mr. Dawkins, what you have failed to realize, is that in her eight months of life, she has already contributed to society. Probably in a better way than you ever could.

Tessa’s smiles light up the faces of family and friends who have long been searching for something to smile about. Some of her loved ones glow in a way they never have before when they see her. The very feat of her existence, beating obstacle after obstacle, has inspired people to do more, try harder, go farther. She has changed the way teachers do their jobs, influencing the education and experiences of an incomprehensible number of children. She has helped people forge relationships that haven’t been strong before. She has been in the world for 247 days and she has made an impact.

Tell me that our world doesn’t need more positivity? More love?

I know a lot of people with 46 chromosomes who suffer or who don’t contribute to society. In fact, they sometimes make our world worse. You made it worse. You perpetuated an outdated, unjust stereotype. You devalued the worth of my child. You scared a mom who doesn’t need to be scared.

People who receive a prenatal diagnosis of Down syndrome deserve accurate information about their child’s future. If you can’t give accurate information, please don’t give any. Next time, send them to the Down Syndrome Diagnosis Network.

Rant over. Special Needs Mom Law #3: Let it go.

Done.

She is so loved.

Language and Feelings Uncategorized

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So where’s my magnet?

by Maggie

Oh Ellie Bean, you sure can keep your momma on her toes.

So, we’re working on thank you notes for all of those who donated to our cause when Team Tessa ran in the Rock n’ Roll half back in in July. We decided to order some ridiculously cute magnets with Tessa on them to send our supporters.

Ellie takes a keen interest in helping me do most anything around the house, especially things that she really can’t easily help with. Like writing thank you notes…. There’s no clear way for her to help write letters to our family and friends, but after ~~more whining than I could handle~~ a little consideration, I decided that she could put the magnets into the envelopes.

At first, she was totally enthralled with these little pictures of her baby sister. But, as her interest in envelope-stuffing quickly waned, she decided to spread all fifty out across the table. “Look at all these cute little Tessas!!” she squealed, lining them all up in neat little rows. Until….

Cue dramatic music.

“So, Momma? Where is my magnet?”

Not upset, not mad, not annoyed. Just confused. And my brain just started to race… What to say, what to say?

We have made a decision that there isn’t a need for a sit-down conversation with Ellie about her sister’s genetic makeup. She’s a smart cookie, she hears us talking. We read her 47 Strings, she hears the words “Down syndrome,” and it’s just a part of our life. She doesn’t know what the difference is, or how it will change all of our lives, but she knows. So how do you explain this cause that we’re connected to, without diminishing the value of the child without a cause?

“Well Ellie, do you remember when we all wore our Team Tessa shirts and watched Daddy run a race?”

“Oh, yeah. Well, I choose this one. This one is mine.” (picks up a Tessa magnet and hops down from the chair)

And she walked away.

Oooooooookay. So my freak-out was unwarranted… this time.

I don’t worry about Ellie getting lost in the shuffle of having a sister with extra needs. Believe me, she makes herself the star of her universe with no problem. As we continue on our journey of this kind of “parenting on steroids,” there will be lots of tough conversations. Perhaps Tessa, too, will have “what about me?” questions.

Perhaps? Who am I kidding? Of course she will! I’ve never subscribed to the “equal is fair” philosophy. I know that each kid will require her own special type of parenting, but explaining any of that to the other is… tricky. Good thing I’m going to get lots of practice.

And now, cuteness…. (which is, somewhat ironically, pretty Tessa-heavy this time.)

This is her “if you think I’m done eating my food, you’ve got another thing coming” face:

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In which we begin again

by Maggie

Another school year begins tomorrow. That blissful stretch of open road that lay before me back in May has now reached a dead end. Or maybe one of those intersections where you have to turn left or right into a hectic routine. You can’t continue on the open road of summer forever… not in this house.

In two separate and totally unrelated incidences, my mom and father-and-law turned to me as I was playing with Tessa and said the exact same thing: “You’re really going to miss her this year, aren’t you?” This statement has given me pause because it isn’t something that anyone has said to me before in regards to either of my children. Not when I returned after maternity leave, not at the end of any other summer break… not ever. I adore all of my family members, even my husband ;), so I’m trying to put my finger on what exactly it is about this child that makes the separation more intense.

Basically, it’s because I’m a control freak. I mean, there is that sweet smile that sends us all over the moon (especially me), but let’s be honest here. In seven and a half months, I have missed exactly one doctor appointment and 1.5 therapy sessions out of a zillion. This school year, Tessa will have both OT and Speech at daycare without me. I may have to miss a doctor appointment here and there. And I’m not done training John on how to best keep track of information for me! It’s a forced transition into letting go just a little bit. That’s good for me and my child.

To be frank, my brain needs a break from Google. I spend every spare moment networking, researching, reading about Down syndrome. It makes me a little bit insane. It’s unneccesary. It doesn’t do any of us any good. I am determined to provide Tessa with a quality life with many choices. I don’t want to “cure” her or to change her, but instead hope to create an environment in which she can thrive. I can do that best by giving my brain a break and the best way I can do that is to begin the school year again. So off we go!

And now, cuteness:

Tessa helped us get the room clean in the best way she knows how…

I just love this picture that my sister took…

Ellie and Tessa, hanging out as sisters do…

And finally, Tessa’s first toenail polish…

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Reacting Appropriately

by Maggie

And here is the difference that Down syndrome makes:

Belly sleeping must be something genetic. From me to Ellie and now Tessa… we love it. As Ellie has grown, she has embraced more of a “pass out sprawled as awkwardly as possible across the entire bed” approach to sleeping. However, I still remember finding her sweet little diapered butt sticking up sky-high in the crib when she was an infant. There are pictures, gobs of pictures, washed out in the terrible flash of an iPhone camera. It was just darling.

(On a side note: how did we function before digital cameras?)

Tessa, too, loves the comfort of belly-sleeping. But finding her with her knees tucked under her butt, rather than sprawled flat on the mattress, gives me a markedly different reaction.

It’s monumental.

It’s me rejoicing – she can! She can!! She can bring her knees up under her body. She did it!! The practice is working! Miss Kate and Miss Rachel (OT and PT) will be so proud! I’m so proud!!

Every milestone is a rockin’ celebration. I don’t even get pictures of this stuff because I’m too excited to consider a camera. Yesterday, Tessa found herself in the mirror during her bath. I don’t have a clue when Ellie first stumbled upon her reflection, but yesterday, I sat and stared in awe while our little peanut shyly smiled at herself.

Monumental.

This is the challenge now, when there is a child born with obstacles… reacting appropriately to the successes of others. Everything that other kids just kind of figure out takes her so much more. And so commiserating when the momma of a typical child impatiently wonders when her child will be able to XYZ… it’s hard for me, okay? It is. It just is.

And now, cuteness:

Language and Feelings self

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Team Tessa Rocks Chicago

by Maggie

The last week and a half was so busy and went so fast that I’m trying to figure out if it actually really happened or not. I’m looking forward to sharing some pictures from our great vacation in Saugatuck, Michigan. But first, we had the most amazing day on Sunday. Team Tessa absolutely rocked the Chicago Rock n’ Roll Half Marathon and 5k!

We raised over $5,000 for our favorite parent support group, UPS for DownS and were the top fundraising team for our group. When totaled, all of the runners who came out to race raised over $34,000!!! Amazing!!

Team Tessa is ready to race!!

While the day started a LOT earlier than any of us would have liked (especially me, as we were at a wedding the night before…), it was so cool to walk through the city early in the morning, watching the sun rise up over the buildings as 30,000 runners made their way to the starting line. Ellie was very excited to see the skyscrapers and to wear her Team Tessa t-shirt.

Ellie can’t believe that she has her two favorite people, her grandmas, (almost) all to herself!

As we waited for the race to start, Tessa managed to have her own little monumental moment… she held her bottle on her own for two full ounces!! I was able to send this picture to John right before he started running:

But apparently, that milestone really took it out of our little rock star, because she slept for most of the rest of the race…

Ellie had a great day too, despite the fact that she got up at 5:00 in the morning. She managed to be three-year-old-meltdown-free until we didn’t let her take off her shoes in Subway after the race. She loved watching the race with her Papa.

Somewhere between miles 4 and 5, we saw some of the racers. Clearly, they weren’t too worried about their time, because they took a second to say hello!

Waiting for the finish, the Team Tessa supporters who were able to come to the race on Sunday gathered for a cute picture.

While I hoped to catch all of our runners out on the course, three of them were just too fast for me. But here’s a picture of John and Uncle Mike crossing the finish line:

It was such an awesome, inspiring day. We met some great people, enjoyed the great city of Chicago, were blown away by the supporters of our group… and were amazed at the outpouring of love and support from our family and friends. We can’t wait for next year’s event!!

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The State of Our Union: July, 2014

by Maggie

Midway through 2014…

What?

Seriously, when did that happen? Our lazy days of summer have been very, very good to us. With the Fourth of July holiday now over, I can already feel the itch to get back to school. Crazy as I know it is, I do miss the routine of our school year.

But not enough to rush back in already. 🙂

Here’s an update on how we’re all doing… skip to the end if you’re only interested in our most-interesting family members (meaning: the kids. I’m not offended if you don’t care much about John and I. 🙂 )

John and I

We’re coming up on our five-year wedding anniversary (this Friday!). As we have spent every one of our anniversaries in the car and this year will be no different, on kind of a whim, we went out to celebrate last week. Hiking in a forest preserve, beers at a local brewery, Buffalo Wild Wings for dinner (because it’s within walking distance from our house), and then walking home in the pouring rain… it wasn’t exactly a romantic celebration of our love, but I think it fit our couple personality well enough. Maybe not the hiking… no part of me is a hiker. But we did it.

Why buy a card when you can just show one to your husband in CVS for free??? 🙂

John is loving every minute that he gets to play with his girls. Grad school is in a lull right now before his final push to the end and Lord knows that no one is ready for that to be over more than we are. He’s also training for the Chicago Rock n’ Roll Half Marathon (donate here), which means a lot of late-night and early-morning runs. I’m so proud of him! And, our team is in first place for the amount of money raised. I can’t wait for the race!! Team Tessa will be out in full force!

I’m settling into a new position at work this summer, which has been a (good) whirlwind. I have also made some good connections with mommas in the Down syndrome community and I, like John, have really enjoyed time with the kids. My travel bug bites are sufficiently calmed for a little bit from all of our mini-excursions, though my recently-renewed passport is just dying to be used…. someday….

Ellie

Can I tell you again how much I despise potty training?

The child is a nutcase and I adore her. She’s smart as a whip and fiercely in love with all things Frozen. We have seriously watched the movie at least 5 times a week for the last month. Now if we could just get her to take a break from her imaginary universes and start listening to her bladder, we could move all move forward. Ellie loves her sister to pieces and we haven’t had a single issue with jealousy or regressing to baby behaviors. What a blessing! 🙂

There is no filter on this picture. Those eyes are going to break hearts someday….

Tessa

We had Tessa’s six-month IFSP review yesterday (her IFSP is the document that outlines her goals for development). She is almost seven months old! Her occupational therapy evaluation was yesterday as well. On the positive side, she rolls like a champion and is actually “advanced” for her age at that skill!! However, she is struggling to use her hands to do more than swat at toys or put things in her mouth. When she was evaluated today, we learned that developmentally, her fine motor skills with her hands are around the two-month range. So, going forward, we’re going to add in occupational therapy once a week. We have to work on her core strength. It’s difficult for her to do much of anything until that tummy strength improves. It will help her move, play, eat, breathe, interact… it’s a huge focus for us right now! As our developmental therapist (DT) explained to us, she’s going to keep developing cognitively and if her body won’t do what her mind really wants to, we have to worry more about her behaviors (which, by the way, happens in classrooms all across the world all. the. time.). In true Tessa form, as soon as she heard her DT say this, she started to improve. I swear to you that as soon as this child hears that she isn’t doing what she should be and we’re going to add more therapy, she hurries up and “gets” the new skill…

This month, we also started solids with Tessa. She seems to be indifferent to it really. Can I also mention how much easier it is to do things like start solids when you just have one child? I don’t know why, but we have been really inconsistent in feeding Tessa at the table. Weird. Anyway… right now, she doesn’t eat a whole lot by spoon and she’s slow as molasses, but she doesn’t spit it out! While we can’t always tell if she is interested in more or not, she will let us know when she is done. With great joy, she spits it all in our faces by buzzing her lips. The joys of parenting… I have started using a few signs with her (“more,” “all done,” and “eat”) and I’m sure that once John reads this update, he will, too. 😉

Tessa’s emerging personality is sweet and easygoing but has a flair for the dramatic, she loves people and being held, adores her sister and daddy (and most other people)… She sleeps well, is now eating well and provides great balance for us and her goofy sister. She is such a great addition to our family!

As our summer dwindles (but not too quickly!), I can’t help but feel so blessed for all that we have right now. Our family, friends, and coworkers have been overwhelmingly positive, supportive, loving, helpful… I could go on and on. For now, I just want to say thanks. If you are reading this, you have been a part of this… of us and we can’t thank you enough.

family self Sisters

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Spotted

by Maggie

I don’t usually see Down syndrome when I look at Tessa, but I do catch a glimpse here and there of her almond eyes or flat nasal bridge. I’m always curious to know if people can see it in her. Not fearful or frustrated, just curious.

I mention this now because we were spotted this weekend by a fellow member of our Ds community and it kind of jolted me a little bit into our reality. It’s something that I have been thinking about and planning for (as if I have control over it) for a long time. I always wondered what it would be like to meet other moms in our Ds community at random. It hadn’t happened yet, up until now.

Really, I spotted the little boy first. And froze. We were visiting a children’s museum in Kentucky with some family over the weekend. As I walked into the open parlor, he had his back to me, but his stance gave him away. I maneuvered my stroller to get a better view and knew immediately that he was one of our community. Watching him play with his typical brother and another little boy with Down syndrome was refreshing. They played and explored as all children do. They caused the same mischief as Ellie does. They laughed and enjoyed the exhibits right alongside their typical peers.

I’m sure his mother saw me looking at him, so, silly as this may be, I tried to keep Tessa turned so that she could see our baby girl’s sweet face. I wanted her to know that I wasn’t one of the people who stare… that I was a momma looking for better understanding of who my child might be.

She approached me, asked how old Tessa was and I shared. I stumbled around looking for something to say back and settled on asking her boy’s age (four). He ran by us at that moment and she grabbed him and showed him the baby. He took absolutely no interest in Tessa and squirmed away and that was that.

I wish I had been more engaging, that I had better articulated how watching her son run and play made me genuinely happy. I was too overwhelmed in that instance that someone knew. I’m just grateful that she was kind enough to approach me, to tell me that Tessa is a doll, and that she wasn’t upset by my awkward glances toward her family.

Kentucky Mom, wherever you are, you totally made my day.

And now, cuteness:

Fish lips

A Princess Anna dress for the birthday girl

Silly faces with Mimi (my mom)

John loves a good Children’s Museum visit…

Hanging out on the moon with Papa (my dad)

family Language and Feelings

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The Six Month Settle

by Maggie

Whew.

That’s how I’ve been feeling for a couple of days now. I can’t tell you if I have been neglecting my blog because I’ve been too busy to write or if life is so mundane these days that I don’t have much to say. Summer is filled with peanut butter and jelly, Frozen, frolicking in the backyard, rinse and repeat. It’s been lovely, really.

It is hard to believe that Tessa is six months now. It feels like she has been with our family for as long as I can remember. While I know it existed, life before her… I can’t remember. I can’t remember a day when we haven’t enjoyed her sweet smile or tried to find a new way to tame her wild mop of hair. It’s like she has always been here.

Down syndrome, too, has settled into our life and become routine. I hear the comfort with Ds ebbs and flows… We have a six-month evaluation coming up shortly and while there is some anxiety about where Tessa is compared to her typical peers, I look forward to the reminder of how far she has come.

(On a side note, John tells me that we know she’s delayed and I should just forget about the whole thing. And I am. Slowly.)

These days, Tessa can roll, roll, roll! She’s finally taking interest in other things besides faces and will roll herself toward things that catch her eye. She isn’t quite sure what to do when she gets there, but it’s a start. She finally has some really good head control, which has made sitting exercises more enjoyable. She has lots more noises now that tubes are in, my favorite of which is a pursed-lipped “bbbbbbbbb.” She has been a real great traveler on our road trips this summer, as long as we have done a good job of feeding her when she was ready. We we haven’t…. Let’s just say that Tessa is very good about expressing her ~~anger~~ feelings.

If you are a newly-diagnosed Down syndrome family, can I say something to you? Life. Will. Settle. The mad rush of figuring things out and understanding a new way of life will be calm again. And someday, you might breathe in the comfort and try to remember Life Before. I’ll tell you, though, that from my side of settled, Before is not a place where I would return. This life is too sweet.

family

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Yo soy La Lay

adventures in family, faith, and Down syndrome

Giggles

When you can’t hold all the babies you want

Down syndrome doesn’t suck.

So where’s my magnet?

In which we begin again

Reacting Appropriately

Team Tessa Rocks Chicago

The State of Our Union: July, 2014

Spotted

The Six Month Settle

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