Yo soy La Lay

adventures in family, faith, and Down syndrome

On abandonment

We’ve all seen the latest story that is trending on Facebook… you know the one, the story of the father who is (allegedly) choosing to raise his son, diagnosed with Down syndrome at birth, in spite of the mother’s choice to (allegedly) abandon the child.  You can google the story if you haven’t seen it already.  I honestly can’t decide if any of it is credible enough to merit a link.  What I will say is this:

I will not demonize the mother for the choice that she seems to have made, nor will I canonize the father for taking his son to New Zealand in search of better opportunities.

While the choice to leave my child to be adopted in the face of her diagnosis is clearly not the choice that I would make, understand that I am part of a strong and loving marriage, we aren’t rich, but we are comfortable enough, and we have the support of family and friends.  Sometimes, the most loving thing that a birth parent can do for her child is to recognize that she is not in a place to provide what is needed.  And there are many loving families desperate to welcome a child into their homes.

More importantly, I beg you, do not be naive enough to think that these very scenarios do not play out in hospitals across the United States.  Many doctors (thankfully, not mine) deliver diagnoses like these as if they are devastating, miserable, horrific occasions.  It’s not just Down syndrome – any deviation from the neurotypical path is scary, but it does not have to be a death sentence.  And while the gender of the ‘parent who stayed’ is often reversed, there are relationships that fall apart in the face of all kinds of adversity – including the strain of a child with special needs.

We will commend the father for providing for his son, but have we abandoned our own?  Will we invite the little boy with Down syndrome in our son’s class to his birthday party?  And then truly and genuinely allow ourselves to see him as just another 8-year-old boy?  Will we set up a playdate with the neighbor’s daughter who has autism?  Will we accept a child with a severe learning disability into our classrooms and do everything we can to support his desire to learn?  Do we refuse to abandon the children who live in our own community?  Without patronizing, without any air of superiority or feeling of having done a good deed… if you want to make a difference in this world, this is your chance.

Pray for the families that struggle under the strain of a world that has not yet found a way to embrace their child.

Encourage inclusion, acceptance, kindness, and compassion.

Let your actions serve as example to others.

Choose love.

IMG_7558

3 Comments »

Reflections from Ellie

More than me, more than John, Tessa adores Ellie.  The bond that these two share is unlike any I have ever seen before. This morning, I stayed at home an extra 10 minutes so that I could see my girls wake up before I left for work.  Ellie is quite the grump in the morning, but John has found that by plopping Tessa next to her in the bed, she wakes up totally happy.

Watching Tessa wake Ellie up this morning was the cutest thing I have ever seen.  (And, I apologize, because I have no video of the event.  Some things are better experienced  when you aren’t looking through an iPhone screen.)

We wanted to share Ellie’s thoughts on Tessa and her birth.  So, we asked her to tell us about the day Tessa was born.  This is what she told us:

5 Comments »

Reflections from Dad (on his daughter’s first birthday)

Today is THE day.  And while I’ve spent the last year telling people the wrong date over and over, I’m sure I have it right this time. Tonight’s reflection comes from John.  As I write this, he is hanging out with Tessa on the couch across from me and she is over-the-moon happy.  She adores this guy (like we all do).  He told me “please don’t write me a big introduction,” so I won’t.   Here’s his side of the story.

– – – – – – – – – – – – – – – – –

Three things to never say to your wife when she tells you she is in labor:

  1. “You can’t be in labor…I have to go to work today…”

(10 minutes later the pain starts to kick in…I nonchalantly utter the following)

2.“I’ll just run into work and set some things up…you’ll be ok here by yourself with Ellie, right?”

(20 minutes later I place a phone call…I have an important question for my laboring wife)

3. “I’m on my way back from work, do I have time to get a coffee?”

Long story short, I was an idiot for putting my work ahead of my wife and unborn child, even if it was only for a brief hour.  I wish I could go back and hit the illusive redo button on that moment in my life and be a caring and compassionate husband.  Live and learn, right?

When Tessa was born there is a moment of her birth forever ingrained in my mind.  Right after she was born she was taken to the table to be inspected by doctors and nurses from the NICU because there were some concerns during labor. I distinctly remember when one nurse from the NICU looked at me and it was at that moment I knew something wasn’t as it should be.  I will never forget her face, one of sincere pity, one of fear; without saying a word, she said it all.

IMG_3908

The nurse practitioner, Amanda, called me over and explained to me they saw many markers for Down syndrome.  She walked me through all the signs and calmly explained to me that there was no way to know until she has genetic testing.  After our discussion I said to her, “Is this something that is certain or is there a chance she doesn’t have this?” My mom had always taught me: In life it is wise to prepare for the worst and hope for the best… but her response didn’t make me hope for the best.

“Again, there is no way to know without testing, but if I would be shocked if she didn’t have it.”

I’m glad she told the truth… and I wasn’t in denial… but I really was sad.  In my arms was a child, who I was supposed to just instantly love, and I couldn’t even see her beauty because I spent all my time examining her trying to make sense of this diagnosis.

IMG_3935

People say you love your kids from the moment they are born.  That instantly you become this whole new person who is filled with a unique parental love.  Yeah… for me, that’s a lie.  I contend loving children is a process.  When Ellie was born, I was surprised that I didn’t feel any different.  I mean, I liked having her around and I could honestly say I loved her, but it wasn’t this transformational moment.  Instead, loving your kids is a process.  They grow on you…like a fungus.  Ok, maybe not like a fungus…but the truth is, you learn to love them as they grow into themselves.

IMG_4225

Loving Tessa was a process.  I think I should clarify that I cared for her, but seeing beyond her diagnosis and seeing my beautiful daughter took time.  But with every smile, every giggle, every milestone, she has just made my life so much richer.  Both of my girls have made my life so much more meaningful and they both have taught me more than I have taught them in the few years I have been working on this parenting gig.

Ellie has taught me how to have fun and to laugh (and honestly she has taught me what it’s like to be on the other end of smart aleck remarks because she’s already dishing sarcasm at age 3).

Tessa has taught me to love unconditionally and that everything I thought that mattered… didn’t.

Together… they remind me everyday to 1) laugh often and 2) focus on what matters.  What else do we need to be taught besides how to cope with terrible sports teams?

IMG_4836

In this end, just like I would hit the reset button on my response to Maggie that morning, I also wish I could hit the reset button on Tessa’s birthday.  If I were to do this over again I would just hold her without fear, or disappointment, or worry… Instead I would hold her and say…

“Tessa, thanks for joining us and thanks for being exactly the way you are… you are what we always prayed for, even if we didn’t know it…”

IMG_5914

“…and by the way Tessa, if it’s not too much trouble, can you talk some sense into your sister?   Because she needs it.”

Her eyes would say it all: “Dad, I’m a miracle…not a miracle worker”

IMG_5394

4 Comments »

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

IMG_1828

2 Comments »

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/ 

2 Comments »

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…

946945_760889589332_1445324929_n

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.

4 Comments »