Yo soy La Lay

adventures in family, faith, and Down syndrome

Oct 5

Lesson #5: There is no “should”

by Maggie

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.  🙂

Tessa

2 Comments »
Oct 3

Lesson #3: Amanda really did us a favor

by Maggie

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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Oct 1

Lesson #1: We ain’t slowin’ down.

by Maggie

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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Sep 19

The longest yard

by Maggie

Ok, so not a yard… more like six inches… but still.  I’m not going to take two minutes of your time to talk your ear off today.  Instead, I’m going to share two minutes of Tessa that literally has me floating right now.

If you’ve been following Tessa for quite some time… or if you read my post about my defective child, what happens at 1:47 might just get you, too.  I watched the video about 4 times before I saw it…

To set this up, we’ve been struggling a bit to find things that motivate Tessa to move.  Today, I set up my iPhone camera to record her looking at herself.  This is what we got:

family Tessa

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Sep 3

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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family Language and Feelings

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Jul 31

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:

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Language and Feelings self

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Jun 26

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.

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family

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May 27

5 months

by Maggie

Tessa has been five months for a little over a week.  I have not been putting off this update, I’ve have just been waiting for some calm so that I could get all the information in one post.

And then I realized that there is no calm and decided to write it anyway.

At four months, we decided to schedule her ear tube surgery and bronchoscopy.  Then, as is well documented on this blog, we had the pneumonia hospital visit and subsequent recovery.  Now, we wait.  Surgery is scheduled for June 5th, which puts it after school gets out (no time without pay, yay) and during the time that I was originally scheduled to travel to Costa Rica.  Clearly, God was keeping me back for a reason.

Here is where we are at in terms of therapy:

Physical Therapy

Tessa is a rock star on her tummy.  She is right at her age with her “tummy skills.”  She is still wearing kinesio tape to help activate her muscles.  I still think the idea of tape on the belly is kind of bizarre, but we’re going with it.  She’s slightly more delayed with her sitting skills (about a month).  We have had the chance to break out the Bumbo seat and while she can’t last it in for a long period of time, she does kind of like to see the world from a new perspective.

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The therapist has recommended using cabinet liner to help stabilize her when she sits in the Bumbo or when we do “couch sitting,” which is when she sits using the corner of a couch for support.  Creative, cheap, useful… It works.

Tessa’s new strange habit is this loud groaning sound that she makes regularly while tensing up all of her muscles.  We’re glad that she’s practicing using the “right” muscles (the ones that flex), but the groan kind of freaks people out.  My theory is that she just likes to hear her own voice (just like her mother).

Speech Therapy

Upright feeding is going great, hurray!!  We are at a point where anyone who wants to can give her a bottle and that makes me a very happy momma.  The next step is building up her core and mouth muscles to prep for solids.  We hope to start with some cereals this summer, but need to make sure that her body is ready for the different textures.  We do mouth stretches with her and use a little tool that looks like of like a solid straw with ridges on it to massage her gums and tongue.  I’m happy with her progress here, but curious to see if the bronchoscopy will reveal anything interesting going on inside her throat.

Here, you can see how happy Tessa is to have to sit at the dinner table, but not get any cupcakes:

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Developmental Therapy

So we’re seeing some more pronounced delays here, but the victory is that progress is happening.  Tessa loves people.  All people.  All faces.  All toys with faces.  But things without faces?  Not so much.  She is reaching, which is good, but we need to get her hands to open up a little more.  She can’t interact until she gets motivated to grab at things and explore, so the new development in developmental therapy is that it’s time to call in occupational therapy.

Sorry, that was a lot of terms.

Basically, Tessa’s occupation is to play, so we need to make sure she can do that effectively.  We are going to get her started with some occupational therapy to help this progress… because while Ellie is a great example for Tessa, she does a lot more toy-swiping than toy-giving.

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(this is the best of my failed attempt at a cute picture of these three)

Overall, we are joyful at the growth in both of our girls, prayerfully optimistic that surgery will go well, and ecstatic that our summer is finally here.  Just three more days of class for me, another week for John and we will have lots of this…

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and this…

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and hopefully not so much of this… but I had to send some love to my husband (and dad) for fixing my car…

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Welcome back summer, we’ve missed you.

family

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Apr 30

PICU

by Maggie

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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Apr 15

Belly Sleeper

by Maggie

I just went in to check on the girls and found Tessa asleep on her belly.

We did not put her down this way.

We knew that she could roll from back to belly, but she hasn’t ventured into the world of tummy sleeping until tonight.

Sweet Jesus, how am I going to get any sleep?!

I realize that all you moms with kids around my age are chuckling at me right now. My own mother always tells me “all YOU kids slept on your bellies and here you are today!” Yeah, yeah, yeah. But modern advances in medicine have changed a LOT of our ideas about infant safety. Take car seats for example. Have you ever seen a car seat circa 1985?? Yeesh.

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It seems to me that now, medical professionals subscribe to the idea that if you put your baby flat on her tummy and do not watch her every breath, she will die. And being a mother who wants the best for my child, I believe them… which is why this whole evening is so agonizing for me.

I did the same amount of agonizing with Ellie, but still feel like Tessa is different. Because she is less interested in rolling the other way. Because her breathing is loud still. Because dang it, I’m not ready for her to make this decision for herself! Ha. Leave it to my daughter to ignore her mother and do as she pleases at the ripe old age of not-quite-four months. Karma.

Parenthood is not for the weak-hearted.

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