Yo soy La Lay

adventures in family, faith, and Down syndrome

Home again, home again.

I’m soaking in the last few minutes of solitude.  Through a series of events, it happened that I ended up checked in for my flight and at the gate about three hours early.  And it’s good.  Good people watching, good decompressing, good reflection.

It was such a great weekend.  I’m tired and ready to come home to my loves, but wow.  This trip was exactly what I needed.

Texas is big and flat and though I barely saw anything while I was here, it’s now officially on my list of places that I actually do want to visit.  I don’t think I met an unkind person while I was here.  I didn’t venture off the hotel property much, but enough to feel welcome and loved on by all the Texans I met.

I didn’t come to this retreat with any burning questions, but I have left with answers to questions I didn’t even know I had.

It’s amazing how quickly the awkward “I know you online but who are you?” faded into easy conversation with what felt like old friends.  Wine helped with that, but so did the feeling that these women, they are my people, my tribe.  There were laughs and wows! and ‘hey, I totally get you’ moments… Kleenex boxes at the tables wiped away good, cleansing tears and we just enjoyed each other for 48 hours.  

I’m excited to come home.  I’m tired, but refreshed.  I’m reflective, but forward-thinking.  I’m ready to put my nose to the ground and do the work.

So, so good.


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Leaving on a jet plane

Texas was never on my short list of “Places I would like to travel,” at least until about 6 months ago.  Too hot, too big, too Red, too many steak houses where they give you a prize for eating a whole cow.

But then the Down Syndrome Diagnosis Network announced that the 2016 conference would be in Dallas.  And I missed the last one and sure as heck wasn’t going to do that again.  So Texas, yay!

(Hopefully they don’t check my voter registration card at the gate… Or they might not let me in!)

I’m going to spend the next 48 hours or so with 120 strangers, sort of.  Actually they are friends.  Stranger friends.  Online stranger friends.

Is the this 21st Century or what??

So I’m sitting an airport, sipping a hot coffee and eating the best muffin I have ever eaten.  I’m so excited.  And I miss my little family.  I’m amazed at the whole world that has opened up through because of a wee little choromosome.  I’m so thankful for this chance to refresh and recharge.

So very thankful.

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Lesson #23: There is an abundance of support

The first few hours days (?) after a diagnosis can be, quite frankly, isolating.  Few really quite know exactly how to respond.  Somehow, your family has become different and you really aren’t sure how.  You feel like the same person and entirely different at the exact same time.

Soon, support comes trickling in.  Or flooding in, as the case may be.  It flooded in our world.  We were blessed with that.

Since Tessa has joined us, I have joined UPS for DownS, NADS, a Down Syndrome Diagnosis Network‘s Rockin’ Moms Facebook group, a local mom group called the MODSSQUAD, another local Facebook group called Gene Rockin’ Moms and a Baby Center group.  There are a mountain of blogs that I read (check out my reading list on the sidebar).  I follow Gigi’s Playhouse on Facebook and get their mail, also.  We haven’t gone yet.  Quite frankly, with all of the support, we’re still not sure where we fit in.

When I first started out on this journey, I felt like an impostor.  I vividly remembered life Before.  Ten months ago, I didn’t even know that advocacy like this existed.  Special needs were not on my radar.  I have no idea what I spent hours online doing.  And I felt like, at any moment, someone who was further along in the journey, someone who doesn’t remember Before, might look at me, the fresh-faced newbie, and think, “Well, where the heck has she been? And does she think she can just come in here and start caring now?  Where was she before?”

I really, really worried about that.  It hasn’t happened.  And it won’t.

Our NICU social worker told me that I don’t have to like all the moms of kids with Down syndrome that I encounter.  Thinking back on that has always made me laugh.  She told me not to feel like I have to befriend everyone with a child with Ds and reminded me that just because we have this diagnosis, doesn’t make our family exactly like any other.  To me, sharing the common experience has helped me forge a bond with some other mommas that I hadn’t met before (I started to list all their names and it got too long, so I stopped).  They are still young friendships.  We are less than a year in, after all.  But my mostly-extroverted self is loving this new opportunity to spread my social circle and connect with moms who can relate.  And I don’t feel much like an impostor at this point.  🙂

Not all support comes from strangers, though.  Tomorrow, a post dedicated to the ones who have been here since Before and are still here.

A completely unrelated Throwback Thursday picture, just because….  

10 month old Ellie

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Lesson #5: There is no “should”

This is part of the 31 for 21 blog challenge!

As is well documented on this blog (for example, here, here, and here), I often struggle with when Tessa will learn new skills.  Lots of moms whose kiddos have special needs ask those questions.  Impatience is just part of the game sometimes.  When a baby is born with Down syndrome, the milestone charts get thrown out the window.  We all know our kids will get where they are going; it’s just a matter of when.  Waiting for when can be frustrating.  The feeling that she should be able to do something nags a little at the back of my brain.  From time to time, I freak out that I’m not working with her enough.  And yet….

In the ebb and flow of my feelings about Down syndrome, I often find it immensely liberating that Tessa works at her own pace to meet her milestones.  Milestone charts exist for a reason (above and beyond the ability for moms to compare their children 😉 ).  They don’t really apply to Tessa because she has a diagnosed disability and we have known, since birth, that she’s on her own schedule.  She has no should.  However, the knowledge of when things should happen is actually vital to the typical child.  When typical babies are born, milestone charts assist parents and doctors in determining if a child needs extra support or may have special needs.  Unlike with Down syndrome, you cannot see a learning disability, autism, or a sensory disorder by looking at a child.  Milestone charts, or knowledge of typical behaviors and development, help diagnose and support parents.  They ensure that the child can receive interventions at the earliest possible time.  We already have our diagnosis, and while a diagnosis certainly doesn’t make life any easier, the blessing of knowing what the diagnosis is is not lost on me.

For both Ellie and Tessa, at the beginning of each Well-Baby check-up, the nurse asks a series of questions about their development.  When I have to answer about Ellie, I feel pressure.  If she cannot do something, I go home and google when she should have mastered it.  When they ask about Tessa, I just laugh.  Many times, I get to say “yes, she can.”  Sometimes, it’s a “not yet” or “we’re working on it.”  But there’s no pressure.  I have no need to compare what she can do to anyone else,  because there is no should.  And that is empowering.

This post was inspired by some moms in my Rockin’ Moms group on Facebook, organized by the Down Syndrome Diagnosis Network.  Thanks, ladies, for asking great questions and being so supportive.  🙂

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Lesson #3: Amanda really did us a favor

Amanda is the Nurse Practitioner that delivered the preliminary diagnosis of Down syndrome to John and I.  For a long time, I really struggled with her decision on how to tell us about Tessa.  But in celebration of Down Syndrome Awareness month, we’re sending her a letter of thanks.  Here’s the letter:

October 3, 2014

Dear Amanda,

You may not remember my family, but I am writing today to thank you for an experience that we had with you that I will never forget.  In December of 2013, my daughter, Tessa, was born at your hospital.  You might remember her looking like this:

Her birth happened very quickly and as I vaguely recall, you were called to the delivery because her heart rate was dropping.  Within moments after her delivery, while I was still in the process of delivering the placenta, you told my husband, John, that she had strong markers for Down syndrome.  We did not undergo any prenatal testing, so this news completely blindsided us.  I was frozen in that moment for a long time.

I will be very honest with you, at first, I was very angry at the way you shared her suspected diagnosis with my family.  I felt, at the time, that it could have waited until I was at least done with my labor and had had the opportunity to hold my sweet girl.  But with time comes perspective, and I want you to know that the way you shared the news with us was quite possibly the best thing someone has ever done for my family.  I have never felt angry or devastated about my daughter’s genetic make-up and while there are many factors that play into my outlook on Tessa’s life, you were certainly key.

You see, I have joined a lot of communities for families with children with Down syndrome since Tessa’s birth and have consistently heard horror stories of (probably) well-meaning doctors delivering a diagnosis like a death sentence.  However, the way that you treated her extra chromosome… as a passing fact rather than a defining characteristic… set a precedent for the way we have approached Tessa and her life.  She is our daughter, a person first, more alike than different.

Tessa is nine months old now.  She is happy-go-lucky, quick with a smile, laid-back, and is totally thriving.  Her older sister absolutely adores her.  She is the favorite “toy” in her daycare.  We were in tears when we got to experience her first giggles.  She is almost crawling on all fours.  My whole family is smitten with Tessa.  She has truly changed our life in the most amazing way.

The team at CDH who took care of us during Tessa’s time in the NICU was absolutely stellar and we recommend everyone we know to this hospital.  In the spring, when Tessa was admitted to a different hospital in respiratory distress (she had pneumonia), we insisted on being transferred to CDH once she was stable because we knew that the care our family would receive is unmatched.  I sincerely thank you for not defining my daughter by her diagnosis and for not giving us a single reason to feel sorry for our beautiful little girl.

Most sincerely,

John, Maggie, Ellie, and Tessa

PS: For other resources for delivering a Down syndrome diagnosis, I highly recommend the Down Syndrome Diagnosis Network.  They have great resources for physicians and familes alike:  http://www.dsdiagnosisnetwork.org/ 

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The Diagnosis

I follow a group online called the Down Syndrome Diagnosis Network, which exists to support families when they have received a Down syndrome diagnosis.  While I have written extensively about Tessa’s Birth here, it’s worth dissecting the process of the actual diagnosis.  I promise I’ll be totally honest.

When John and I talk about family planning, I’ve always said that I want to “finish early.”  Actually, what I have said is something along the lines of “it’s so risky… waiting until I’m older… that’s why I’d really like to stop having kids before I’m 32.”

Foot. In. Mouth.

I told you I’d be honest.  And where did I get the number 32??

At Tessa’s 20 week ultrasound, our tech told us that the baby was the most wiggly baby she had ever measured.  This was my fourth ultrasound of the pregnancy.  Most of my friends have these sweet ultrasound pictures of their little one lying nicely across their belly, face up, sometimes sucking a thumb or waving hello.  Ours is a face, smushed up against the uterus wall as if to say HEY, DO YOU SEE ME IN HERE??  ‘CAUSE I’M ABOUT TO GIVE YOU THE SURPRISE OF YOUR LIFE!   Perhaps her insane movement is why no markers could be seen?  Or maybe not…

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In any case, I’m telling you about the diagnosis, aren’t I?

I feel like my husband is the best person to tell this story.  After all, he is the one who actually received the news, not I.  That is really how it went.  NICU was called to the delivery because of dropping blood pressure.  As she was delivered, John told me it was a girl and my jaw dropped to the floor.  She cried and it was beautiful.  As NICU examined her across the room and I continued the delivery process, they started talking about strong markers for Down syndrome and did we have prenatal testing?  The silence of the room was thick.  It was cramped with people and yet my husband and child were so far away… My nurse wanted to know if I knew and I was telling myself that this woman was surely mistaken because this would have been seen on my ultrasound.  Wouldn’t it?  People don’t just get a diagnosis like this.  Do they?  I’m not prepared.  Someone should have prepared me.  In any case, she was probably wrong.  My doctor (whom I adore) very quietly said to me “you know, who is to say they aren’t just as happy… even happier than we are?”  And I waited.

When they handed me Tessa,  not exactly sure what I would see, my shell-shocked husband attempted to explain her “strong markers” to me.

I didn’t see them.  It was only Tessa, my sweet girl.  In that moment, Down syndrome was everything and nothing to me at the same time.

Later in the afternoon, once Tessa was off in the NICU and John and I were alone in our room, the geneticist came in to tell me more about my girl.  She was not cold, nor was she discouraging or overwhelmingly positive either.  She took a very brief history.  Intrigued by my past miscarriages, she explained the different types of Down syndrome and asked about the genetic testing on the other babies (both had been “normal”).  She said something along the lines of “look, I’ve seen your baby.  She has it.  I’m as sure as I can be without seeing the test.  But I promise, we’ll call you as soon as we get the official results.”

Later in the NICU, I examined every little bit of my baby.  I didn’t get it.  Something about a line on the hand?  A flat nasal bridge?  Her neck was different?  But she looks just like Ellie!

John and I went back and forth about when and how to tell our families.  I insisted that we wait until we had official results.

You know, in case they were wrong.

And we waited.

Tessa was born on a Wednesday afternoon and the call came on Saturday morning.  I didn’t pick up the phone, though I knew who it was.  The results were in and she was positive for nondisjunction Trisomy 21, the most common (and random) type of Down syndrome.

I just didn’t see it.

I kept waiting to fall apart.  The moment never came for me.  It does for some.  For me, there was a lot of information and tests, then she was home and it was Christmas and New Years and on we went.

I still don’t see the Down syndrome in Tessa most of the time.  I still look at my little girl a lot and try to find what they tell me is true.  I still wonder if our tests got mixed up and they were wrong.  (And if they were wrong, are we going to get in trouble for all the Early Intervention that we have used??)  When I take her in public or show her picture to strangers, I wonder if people know.  I’m not in denial.  I know she has it.  Sometimes, I take her picture and I see it.  But mostly she’s just this beautiful, wiggly little thing.  She’s my girl.

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