Yo soy La Lay

adventures in family, faith, and Down syndrome

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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Lesson #1: We ain’t slowin’ down.

I thought a lot about how I wanted to start my Blog 31 for 21 Challenge.  I have a list, you know.  Of course I do.

Instead of my awesome blog start, I got work, work, double work, paperwork, pick up kids, migraine starts, football game, potty break in locker room, drive through dinner, beer.  Pajamas, prayers, teeth brushed, stories read, lights out, Extra Strength Tylenol, crash on couch, Peppermint Patty.

I think it lends itself well to one of my first lessons after Tessa’s birth: life isn’t going to stop just because of this diagnosis.  Sure, we cram in a few therapy sessions, sometimes we get sidetracked by an illness or a doctor’s visit, and Lord knows, we are on a different pace than we may have planned, but the world has not stopped turning because of Down syndrome.

We take the kids to restaurants and ice cream parlors.  We throw them into the car for road trips and family functions.  We still work, they go to daycare.  We have our parties and bonfires and go out on dates without them so that we can complain about how crazy they make us and how much we miss them when they aren’t around.  They have sleepovers at Mimi’s house and we go to church when we can and all of the things that have always happened still happen.

Life doesn’t have to stop when Down syndrome enters.  It may adjust, but it still marches on and we can make of it whatever we choose.

Love this!  Belongs in my classroom somewhere....

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Down syndrome doesn’t suck.

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.

photo (10)

She is so loved. 

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Happy birthday, Bean!

We knew we were in trouble when one of the first words that Ellie learned (after cuckoo) was “beer.”

This kid is nuts! And I can’t believe it, but this kid is now THREE. Good golly, when did that happen??

There has been much fuss over Tessa’s Birth Day. In comparison, Ellie’s was essentially routine. A monumental day for John and I, rookie parents who dutifully painted our nursery, packed our bags weeks in advance, and researched newborns for months in preparation, but blissfully mundane for the others involved.

I was one of those moms who went to the hospital three times and got sent home before it was actually real labor. Three days past-due, I spent the afternoon before her birth buying an obscene amount of antibacterial hand gel from the Bath and Body Works semi-annual sale (which, coincidentally, sits unused in our bathroom cabinet to this day). There, the contractions began.

Labor with Ellie was long, 36 hours from first contraction until her birth. Looking back, I’m certain that she just wanted to make sure that we realized that she was going to be independent from day one.

When our sweet little Bean was born, full head of hair and a healthy cry, I literally sobbed simply because she was a she. It’s ridiculous, really.

Ellie is our go-with-the-flow, fun loving, precocious little comedian. She has the gift of gab and an insane vocabulary that she uses to get a reaction out of anyone who will listen. Everything she says is comical. Her easy-going zest for life is refreshing, but there is a strong-willed streak that makes me pull my hair out in frustration while laughing uncontrollably at the same time. I adore her goofy little laugh, her sweet smile, and the fact that she makes no apologies for liking me better than John. 🙂 Life is never dull for anyone with a three-year-old, but I’ll tell you what… this girl is really, really going to keep us on our toes as she grows older.

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Cruel and Unusual Punishment

Do you know what is the worst experience ever post-baby? I bet you do!

Bathing suit shopping.

Ugh.

You know, I bounced back fairly well after Ellie was born, but pregnancy with Tessa really did a number on me… not to mention the hours spent hunched over a Boppy pillow feeding her in the sidelying position.

Wide hips, huge feet, stretch marks, worse eyesight, terrible posture, hunched shoulders… It’s not even the weight so much as the complete alteration of my entire shape.

OK, I’m done.

I know, I know, 9 months on, at least 9 months off, you grew a human, stretch marks remind us of the miracle of life that grew in our belly, blah blah blah, yadda yadda. I’m not there yet.

But last weekend, the pool looked so inviting and fun. And I want to be the one having fun rather than watching the fun. So bathing suit shopping happened. And now I have to suck it up… and suck it in… and remind myself that she was worth it. They were worth it.

(and so were the control-top bathing suit bottoms that cost double the price of the regular kind. Just sayin’.)

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Flip Flops

One thing that I have noticed now, as the mom of a child with special needs, is the tummy flip-flops.

You know how sometimes, people say things or do things that cause a split second, literal gut reaction?  Like when you see a cup of water about to fall over and you get a little flutter?  Well, that happens to me more often now than it used to.  A lot more.  And for the silliest stuff.

Take for example, the palm-reading infographic that I came across on my Pinterest board today.  I was looking through my pins for something related to animals to use with my Spanish 2 kids and found this:

Leer la mano: A fun activity for practicing descriptions! (tiempo presente) (ser) - Activity description in blog post

You don’t have to know Spanish to tell that it’s a “cheat sheet” to reading a palm… which is something I don’t believe in anyway… but that’s beside the point.  So, I’m looking at this infographic and suddenly, I remember Tessa’s straight little palmar crease (the marker that I studied and studied in the NICU) and I get a little flutter that says “Hey!  Her palm is different!  She probably can’t get her palm read!  Can she??”  And it’s not a good or bad or sad reaction, it just is.  

Here are some other flip-flop moments:

-Listening to a mom tell me that her child would never get into college if she wasn’t selected for National Honor Society

-Any time I walk past a Special Ed teacher or the Vocational Ed classrooms

-Checking the “disabled” box for Tessa on our insurance forms

-Hearing kids called each other “dumb” or “stupid”

-Any mention of college savings plans.

Is this crazy??  A part of me thinks that I might be crazy, but the more rational side says that there is no way I’m alone in these sudden changes in perspective.  I’m not bogged down by the feelings, they don’t upset me at all.  They are just… there.  Kind of like Down syndrome.  It just is.

But if anyone else wants to tell me that they deal with the same thing, I’d love to hear about it.  😉

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PICU

The smell first hit me as I was riding in the front seat of the ambulance.

Sterile, yet pleasant, like nurses and latex and clean receiving blankets covered with blue and pink feet.

We are back in the hospital.

As I wrote the other day, Tessa has had a cough and a fever for a couple of days.  We decided to take her to the doctor to have her checked out.  She seemed to be breathing a little faster than normal and had not been able to eat as well as she normally can.

In the doctor’s office, the nurse wanted to get an oxygen level reading on Tessa to make sure her levels were good.  This is a reading that we are very familiar with.  It’s the blue number on the monitor.  We know quite well that it needs to be in the upper 90s-100.

It’s never a good thing when the nurse tells you that she doesn’t think her machine is working right and wants to try a different one.

When she left the room, John peered at the number.  77.  We knew that we were hospital-bound.

The nurse practitioner that we were scheduled to see came in quickly, did another reading on the new machine and said that she was sorry to have to tell us this, but she was going to call 911 and have the paramedics take us to the ER because Tessa was in respiratory distress.  Soon her pediatrician was in the room explaining things to us in more detail.  She was working really hard to breathe; at one point they counted 100 respirations a minute.

Meanwhile, Ellie is sitting next to me playing with my iPod and announced that it was time to dance.

The paramedics loaded me up onto the stretcher, Tessa in my arms, and sent us to the hospital.  It’s kind of odd to be wheeled out through the waiting room holding a teeny baby in an oxygen mask.  People stare.  I totally would stare, too.

Once Tessa and I left, Ellie looked up at John with a little quiver of the lip and he told her that everything would be fine.  She responded, “Yeah, but where are those boys??” She was far more concerned about the paramedics being gone!

In any case, we ended up in a Pediatric ER and once we had her stabilized there, they transferred us over to the hospital where Tessa was born.  We wanted to be where her doctors were, where her records and history were already established.  On the way over, they put her into a little isolette (one of those incubator things) and she was MAD.  Literally and figuratively, Tessa does not like to be put into a box.  She likes to be free to be herself.  🙂

Here is what we know:  Tessa has pneumonia in her left lung.  We have her on an antibiotic to fight any bacterial infection that may be present and are testing for viral infections.  She does not have RSV.  They are doing a full panel to try to find the cause of her illness.  When we were leaving the ER and headed to the PICU, she was on 100% oxygen.  She’s now down to 65%.  They have her on a Bubble CPAP (same type of thing used for sleep apnea).  The goal today is to get her off the CPAP and onto the high flow oxygen.  She has been on an IV for nourishment and they will place an NG feeding tube today so that she can get some food in her tummy.  She has felt very, very hungry and, like her momma, when she’s hungry, everyone suffers.  A full tummy should bring back some smiles!

Also, Ellie has pink eye.

When it rains, it pours.

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One sickie, two sickie, three sickie? Four??

One of the blessings of being a teacher is that we get a good amount of time off with vacations and holidays plus a number of “sick days” to use throughout the year. I was fortunate enough to have enough days to get me through six weeks of my maternity leave before having to take unpaid time off. The problem we have now encountered is that I’m out of days… And suddenly, I’m needed. And also feeling my own aches developing in my throat and ears.

Tessa’s fever has not diminished yet and now John has developed symptoms that we think may be strep. In addition, Tessa has a follow-up visit soon with her doctors from the NICU… and then there is the surgery coming up. The stress that I am carrying around these days is that I am simply unable to be there for my child and family. I can take a day unpaid for her surgery, but more than that is simply not feasible. We’re teachers. We have many student loans and a mortgage and a car payment. Frazzled is pretty much the only way to describe this house right now.

We’re asking for two prayers tonight, if you’re so inclined:

1. That Tessa’s illness be nothing more than a cold or something that can be treated at home… and

2. that Ellie not catch this bug or any other. For the sanity of all of us, that girl must stay healthy.

I’ll be chugging orange juice and other forms of vitamin C until this storm has passed.

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Well that escalated quickly…

I love my Sunday night wind-down. The evening before the work week begins is so sacred to me that I refuse to make Sunday evening plans. Ever.

(So I guess if you have invited me to do something on a Sunday and I have declined, you now know it was for my own selfish reasons.)

Daycare bag packing. Water bottle finding. Sunday night dinner at the table together, usually take-out. Gathering up a few things to come to school with me… are my pants wrinkle free? Nope, better hang them up… Girls in bed, Ellie’s MeReader telling them a story that I can hear on the monitor… Then checking in on Facebook or Pinterest while drifting off to sleep… This is my ritual. It’s my peace before the crazy rush of a Monday. But not tonight.

Tessa has a cold, again. This one is worse than the others have been, complete with her first fever. The cough is kind of brutal, but it’s productive and I’ve had the distinct joy of pulling globs of nastiness out of her mouth for the past couple of days. She’s asleep in her car seat in her little corner of our closet now.

About three hours ago, we were driving home from a day with my family. John was talking about catching up on the DVR and I was telling him that I was looking forward to some quiet time on my long-neglected Pinterest boards. When we walked in the door, suddenly there was a crying, hangry (love that new word!) toddler with no interest in eating anything but milk. Then the other one is crying, but can’t eat without gagging on the bottle. My mom is calling to tell us that she has a fever also and then we’re trying to put the girls to bed and Tessa needs Tylenol, but it’s expired and then I’m at CVS to buy meds, but I’m stuck behind a crazy coupon lady with fourteen boxes of band aids. Back at home, Ellie is screaming about the unfairness of her bedtime and Tessa is throwing up on my shoulder and John and I are wondering how the heck our Sunday has turned into a tornado of chaos.

It is the kind of evening that makes me happy to go to work on Monday… even knowing that all day, I’ll be thinking about my little sickie.

How many days until Summer??

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Tubes

We had a follow-up visit with our Ear Nose Throat (ENT) doctor today. If you recall from my three-month update on Tessa, we were checking to see if the fluid in her ear would go away if treated with Nasonex.  A month has passed since then and the fluid is not gone. Because of this, sometime in the next couple weeks, Tessa will have her first surgery – she is having tubes put into her ears.  While they have her under the general anesthesia, they will also do the camera-down-the-throat check to confirm whether or not Tessa has laryngomalacia (see more here), reflux, or something else. It’s great that she is eating upright, but we are still hearing squeaky noises (called stridor) and she has a recurring cough/congestion that we want to check out. We are thankful to have a proactive doctor… and one who can do the procedure so quickly!  She will have the tubes put in AND the bronchoscopy (not sure how to spell that one!) in a procedure that only takes 10-15 minutes!!

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