Yo soy La Lay

adventures in family, faith, and Down syndrome

Sisters

Before Tessa was born, I was often asked how Ellie felt about having a baby. She’s two, so the reality of what a sibling would do to the family dynamic is not something that she had any way of comprehending, but she made one thought very clear: we were to bring home a baby girl, or the baby would not be welcome in our family.

Thank God that we got the right gender!!

Ellie adores our baby…. probably too much at times. To her, Tessa is just the cutest little bean and requires about 47,000 kisses per hour. She talks to her in a ridiculous voice, holds her little hands… May we all remember to treat her as “normally” as Ellie does!!!

I do think often about their future together. It’s probably the one area that actually causes me a substantial amount of anxiety. I never want to parent Ellie less, expect more of her, or put too much on her shoulders. However, I can’t help but pray that this little toddler will grow into a champion for her sister. I’m not naive enough to think that Tessa will never have to deal with teasing or feeling left out… nor do I really expect that Ellie will always be the one to come to her rescue when times are tough. However, when I picked Ellie up from her daycare on Friday, I couldn’t help but smile at the exchange I heard between my eldest and another little girl:

Girl: Hi Autumn!! (The name of another little baby)
Ellie, very upset: No! That is Tessa! Do NOT call her Autumn, that is not her NAME!!! She is Tessa!

You go girl.

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Tummy Time

…. Of course, tummy time can only be mildly successful when you enjoy sleeping on your belly…

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Early Intervention

So Tessa qualifies for something called Early Intervention (EI) because of her diagnosis of Down Syndrome. It covers a variety of therapies from birth to age three that will help her develop at an appropriate pace. At the age of three, when EI is “done,” Tessa will start school. She will not wait until she is five like a “typical” child.

Yesterday, we had our EI evaluation to get a better idea of what Tessa’s strengths and weaknesses are. Based on her evaluation, she will receive services to help her grow. More on that later. For now, here is what we know about our little girl:

1. She is strong and active! Babies with DS tend to have low muscle tone. This doesn’t refer to the strength of the muscle, but rather how much energy it takes to get the muscles moving. In terms of her reflexes and general movement, she scored in the two-month-old range! And as one therapist put it, “wiggly babies seem to do even better.” After hearing that, I flashed back to the constant kicks and rolls in my belly during pregnancy… This girl can move!

2. Tessa’s neck strength needs some work. All babies are born with bobble heads, but Tessa is going to need some extra help here. Tummy time is in order!

3. With modifications, Tessa is a good eater. When eating, she currently lies on her side perpendicular to the person feeding her in what is called a “sidelying” position (creative name, I know). She uses a “preemie” nipple on her bottle. We will continue to work on getting her to eat “normally,” upright, with a standard bottle. We are also supposed to encourage her to use a pacifier and to put her fingers and other objects (toys, teething rings) in her mouth.

4. Socially and emotionally, she is content, a good sleeper, easily calmed, and not easily rattled by things like her older sister shoving an electric toothbrush into her mouth. However, it is tricky for her to do too many “things” at one time, so we have to isolate the skills we want to work on. For example, when we work on vision/eye contact, we hold her limbs still to keep her from using too much energy on the wrong body part. 🙂

We are happy to report that the overall consensus among the therapists is that generally, we aren’t catching Tessa up to her peers, but rather maintaining her progress and moving forward. This is great news! From here, Tessa will have physical therapy once a week, speech (for feeding) twice a month, and she will see the developmental therapist once a month. I can’t believe how much support and help we have gotten with Tessa so far. We have very high hopes for her future and know that there is no limit to what she will be able to do in her life!

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Tessa

We learned at Tessa’s birth that she has Down Syndrome. She was born a little early, at 37 weeks and 3 days. Her birth day was the most life-changing, whirlwind of a day that I’ve lived through in my 28.5 years.

When we tell people that Tessa has Down Syndrome, people are unsure how to react. I mean it in the kindest way possible when I say that it is interesting to watch people search for the right reaction (which is why we prefer to share that information through text or email). If you are ever in that situation, a generally good response is “congratulations!” (following with a “what does that mean?” or “how can I help?” is also appropriate). We celebrate the life entrusted to us to care for and raise every day and we hope our family and friends will do the same.

We are often asked if we knew before she was born. The answer is no. John and I don’t live in hypotheticals when we can avoid it – and for us, the genetic screenings create a lot of hypotheticals that we don’t want to sort through unless necessary. Tessa didn’t show any markers on her ultrasounds, I’m not of “advanced maternal age.” We’ve simply been blessed with a sweet girl to raise who happens to have some extra chromosomes. We have heard that it is common for couples to abort their pregnancies when they learn that their child has Down Syndrome. Hearing that rattles me – this beautiful baby has so much to teach us about life; I can’t imagine not bringing her into our home. And, for the record, if God blesses us with another baby in the future, we still won’t do any tests.

Today Tessa began her Early Intervention. In my next writing, I’ll share information about what DS looks like in Tessa and what is in store for her over the coming months.

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Basics

This is what you should know about my family:

John – Husband. Age at this writing, just shy of 29. Married almost 5 years. Teacher, grad student, coach. Funny, kind, playful. My best friend and favorite person on the planet.

Ellie – Child #1, girl. Age at this writing, 2.5 years. Sassy, sweet, unapologetic, bossy. Doesn’t color WITH you, but rather tells you what to color and expects you to do as you are told.

Tessa – Child #2, girl. Age at this writing, one month. Personality TBD. Likes being cuddled, burping loudly, and 4 AM. Dislikes being moved. Has Down Syndrome.

Me (Maggie) – Age at this writing, 28 (truthfully, I lost track and had to do some math to make sure that I am correct…. I am.) Teacher (high school Spanish). Personality? See Ellie’s description above. She is me, in toddler form. I love ellipses (…) and exclamation points, among other things.

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