Mother’s Day

With one official Mother’s Day under my belt, I can tell you that I very much anticipated today.  Not necessarily to be celebrated as a mother, but for me to celebrate that I am fortunate enough to be a mother.  I will admit that sometimes I take for granted the privilege of being a mother.  So I let Mother’s Day remind me to count my blessings.  Not only was I graced with my beautiful daughters, but I was given the opportunity to become a step-mom–a rare opportunity that I am always thankful for.  Being a step-mom first helped me prepare for my girls.  I am also thankful for Casin’s mom who graciously welcomed me into Casin’s life long ago and trusts me to love and care for him as his step-mom.

Everyday I tend to and care for our children as moms do. I make them breakfast, get them ready for their day and at the very end of the day I tuck them into bed. Oftentimes I forget how lucky I am to be able to do all of these little things that mean so much to them.

When I was younger I remember my mom always going the extra step to make us feel special. For instance, on days I would take my own lunch to school, there would always be a little card or napkin that said “Have a great day! Love, Mom” or “I love you. Mom”. No matter what my day was like, that always put a smile on my face. And as kids do, others would tease me about the notes so I would hide them but I don’t remember seeing notes in any of their lunches…Something as simple as a lunch box note yet it still remains in my heart today.

That’s what mamas do. We just want our babies to feel loved. We want them to know that they are their mother’s world.  No matter how scary and emotional the motherhood roller coaster can be, it is always ALWAYS worth it.  I love that I can look into my child’s eyes and know that they need me.  But what they really don’t know is how much I need them.

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I was honored to spend this beautiful day with both of our families at home.  We celebrated everything that makes motherhood great.  We ate, we laughed and we loved.  Tonight I am snuggling with my three favorite little people.  Perfection.

Happy Mother’s Day to you and yours!  I only hope that every mother was made to feel as special as I felt today.

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I heard this poem on Disney Junior the other day on a commercial break from Mickey Mouse Clubhouse.  Normally I can tune out Disney but this caught my attention and froze me for a moment.  Beautifully spoken, this poem perfectly describes what being a mom means to me.

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Dear Tessa: Big Sister Extraordinaire

Dear Tessa:

You are finally a big sister, and you are a pro.  I will never forget the moment you came into my hospital room wearing your “big sister” t-shirt, not knowing what you were about to be a part of.  You wasted no time loving up on your baby girl.

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I am not going to lie to you, prior to Kendal’s arrival your dad and I worried that you would not adjust well to our new addition.  Much to our surprise, you are really enjoying having a new baby around.  You have lots of kisses and hugs to give and maybe an occasional slap to the face (which Kendal has already gotten used to).  As far as rebelling, you are fighting us just a little bit but we expected it.  You’re a toddler for goodness sakes–it’s what you are supposed to do!

I live for the beautiful moments when you approach Kendal and in the sweetest voice you say, “Ohhhh,” or rarely, “Hi baby,” and kiss her forehead or lay your head on her belly.  I can already tell the two you will be the best of friends and in a year from now, have mommy and daddy running all over the place after both of you in complete craziness.  But I can’t wait!

All of your hard work preparing for Kendal definitely paid off.  I know at times it is hard when Kendal needs me more, but I promise that we really do try to make it up to you.

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As far as development is going, you are blossoming!  Your language skills are getting so strong, and I love to hear you using words!  Over the weekend you started saying, “yeah,” to just about every question we would ask you.  You also say “ow-ee,” and pretend that you are hurt.  ”Da-da” has turned into “daddy” and everyone is greeted with a polite “Hi.”  You love to sit by the front door and say “out” when you want to go outside.  If you could sing the Itsy-Bitsy Spider all day long, you probably would.

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Last night after we colored with sidewalk chalk, you took six forward steps independently in your walker on the patio!  The neighbors probably thought I was crazy because I was screaming and cheering excessively.  Considering how much you despise your walker, this was a huge accomplishment!  Your dad and I have set a goal for you to walk by the time you are two.  But I know I need to remember to be patient and let you come into your own.  (That doesn’t mean I won’t have my fingers, toes and everything crossed hoping that this comes true!)

ResizedImage951367249619843I am curious and anxious to see what this spring and summer will bring to you especially since you are so driven right now.  Watching you learn and grow is rewarding in ways I never considered.  And as a bonus, we are growing together watching you do so.  Keep it up Love Bug!

Love, Mom

Welcome Kendal Donna!

On April 11, 2013 at 2:27 p.m., my husband and I welcomed our second beautiful daughter into the world.  Meet Kendal Donna.

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I told Dan about two months ago that I had a feeling this baby would make a different entrance into the world.  Actually what I believe I said was, “She’s just not going to cooperate…”  And as a mother’s intuition serves, I was right.  Kendal progressed quickly before I had her, but she would not commit to labor.  The day I went into the hospital, I was dilated to a five with over a week’s worth of false labor.  My doctor suggested we just break my water to give her a little kick start.  After active labor had began, we learned that Kendal was positioned in a deep transverse arrest.  This means that instead of the top of her head presenting for birth, the front of her face was with her neck bent back.  Having her in this position prevented labor from starting on it’s own, and in the end made delivery unsafe and not possible.  From there we headed down to OR where she was delivered safely via cesarean section.

Feeling terrified in the operating room with bright lights, numerous people moving quickly and a blue sheet over my lower half, there was Dan reassuring me that everything would be fine.  Moments later I heard her first cry–scream actually!  I melted in tears.  Suddenly all of the fears I had leading up to this delivery left me.  She was here.  I knew she was just fine.

It was only a short while longer until I would hold my girl.  The recovery nurses knew how badly I wanted to be upstairs with her so they let me sneak up just a little early.  They wheeled me into my room and there on the couch was one proud daddy snuggling his newest little.  I could tell by the way his smiling eyes were glued to her just how in love he was.  But it was my turn to get my arms around her.  I stared at her and examined her the way I knew I would–the only way I know.  She was 7 pounds, 6 ounces and 21 inches long!  Her sweet little head was covered in fuzzy black hair.  Her long fingers and toes were conversation pieces when we would unwrap her for each visitor to see.  This time I waited to call or text people.  I wanted her to myself–to enjoy with Dan.  I was in love; deeply in love.

She was nameless for a long while.  I struggled with names this time around, because once again I needed to see her.  Nothing felt perfect prior to her arrival.  I wanted it to fit her the way Tessa fit.

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“Kendal” had been on and off of our name list for months and we didn’t pull it back out until after she was here.  I knew I wanted her middle name to be Donna; after my late Grandma whom I deeply adored.  Once I said “Kendal Donna” a few times, I knew it fit her beautifully.

I forgot just how quickly babies transition from newborn to infant to toddler.  Having Kendal showed me just how much Tessa has changed in what feels like such a short time.  But there is something about the innocence and beauty of a brand new baby that captivates me in the sweetest splendor.  The way they smell, the way they wrap their tiny fingers around yours, the snuggles, the needy cries, the hungry rooting and newborn yawns all take me away to a blissful paradise.

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I was blessed once with a sweet and charming little darling.  How did I get so lucky to have it happen twice?

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Since being home from the hospital, I have had overwhelming feelings of nostalgia especially when I dress Kendal is some of Tessa’s baby clothes or swaddle her in Tessa’s blankets.  I am reminded of a once painful homecoming (that is far less painful these days) and of the once new baby girl that is now a big sister.  I am reminded of my blessings.  Kendal molds in perfectly.  Everything just feels right.

Welcome to the world Kendal Donna Carey.  May you always feel the love that surrounds you.

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Dear Tessa: My mover

Dear Tessa,

I don’t know if it’s my ninth month of pregnancy catching up with me or if trying to keep up with you these days is really just that demanding, but either way you have me exhausted  (which I guess I can use as an excuse for this late letter post that should have happened last month).  Even though you are not walking just yet, you have really blossomed in gross motor development over the last month or better.  Little lady, you are pulling yourself up to things and cruising pretty good around the furniture–all independently!  And every single time you successfully complete one of your stunts not only do you stop and take time to cheer for yourself, but you make sure whoever else is in the room best be giving you a standing “o” for your performance.  Rock on girlfriend.

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Unfortunately not all of your excitement lately has been, well, “exciting.”  Recently, your daddy and I discovered that you were beginning to bruise easily…way too easily.  So we requested to have some blood work done just to make sure everything was fine.  What first came back shook us to the core.  Your first result came back and we were told around 4 p.m. on a Thursday afternoon that we needed to go to the Children’s Hospital right away for additional testing to rule out the possibility of the “L” word or worse.  Well that’s what your dad and I call it because I can hardly say it–Leukemia.  I knew not what fear was until that word was mentioned.  It was a fear so real that it made me physically ill.  Knowing that this would not be uncommon, it paralyzed us.  On what had to have been one of the longest rides to Madison in our lives, we spent a large portion of the ride collapsed in the unknown while hopelessly maintaining optimism.

Your white blood cell count had climbed back into normal range, but your platelet count dropped.  Overall, this was news we could be pleased with.  Instead of checking in at the Children’s Hospital, we were able to go home.  Blood was drawn four times within the next week.  Your platelets kept dropping.  The hematologist told us she believed this would go away on it’s own.  We were told this was a case of Acute ITP and that your numbers would (hopefully) return to normal soon.  One last draw before you would have started an IV treatment and your platelets were climbing again!  Relief of the highest kind, I can assure you!  Now we are monitoring you.  You dipped slightly again last week so we have to wait and see what will be next, but I know it will phase you little.  You are far too busy to be slowed down right now.  Remember?

We just keep reminding ourselves that no matter what happens with all of your blood work that this too shall pass.  

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As your mama, let me just take a moment to apologize for the last couple of weeks.  I have been wrapped up so much in accomplishing minuscule tasks at home and with work in preparation for your little sister, oftentimes forgetting to spend that extra five minutes or so with you.  I have also spent far too much time complaining about things that hardly warrant reasons for such grievances.  And the only excuse is that I am just tired and cranky.  But then you scoot over to me, pull yourself up and giggle hysterically and everything feels fine again.  Maybe I don’t listen to your dad enough when he tells me to slow down, but you seem to catch my attention just when I need it most.

By the time I write you your next letter, you will be a big sister.  I wish I could tell you when that would be.  I know undoubtedly that you will be a wondrous sister.

You won’t be my baby for much longer, but you will always be my first.

Love, Mom

37 weeks

World Down Syndrome Day 2013

Today is World Down Syndrome Day!  The 8th Annual, in fact.  It is a day to celebrate the lives of those born with a third copy of their 21st chromosome, which is why it falls on this day (3/21).  More importantly, it is a day to commemorate the achievements–big and small–of those born with Down syndrome and to show the world that our loved ones are people first…diagnosis later.

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For example…

Over the weekend I was at a book signing event when a woman approached me.  She told me a story about how she knew a physician years ago that had fourteen children, the oldest had Down syndrome.  She proceeded to tell me that she could never understand why the physician and his wife would want to continue to have children over and over after “what happened to them” the first time.  She then noticed that I am very pregnant and told me it takes a lot of courage to want another child…

Courage?  Why?  Because my heart will swell twice it’s size with never ending love for my next child?  Because I will be blessed with the gift of another beautiful daughter?  It took me more courage to stand there and face her (while maintaining control of my hormones) with class and tact than it ever took for me to “decide” to have more children.  I told her that we are thrilled to continue to have more children.  With that, she walked away.

First and foremost, I do what I do for my daughter.  I advocate and I love.  Second, I do what I do for people like the women at the book signing because there are times when this world needs it.

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At the beginning of the month, we attending the IDSC Kick Off to World Down Syndrome Day Meet Up at the Great Wolf Lodge in Wisconsin Dells.  Surrounded by families with similar circumstances, we celebrated everything that makes our loves ones who they are! We embraced the characteristics that might separate them from everyone else.  And this little lady loved every minute of it!

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A BIG thanks to IDSC for all of their hard work to put this amazing weekend together!  An even bigger thanks for their continued efforts in speaking out for Down syndrome and bringing awareness to the rest of the world!

Check out their 2013 World Down Syndrome Day: Who I Am video here…

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Today, especially today, please know what this day means to millions.  We are a strong community moving mountains.  We will celebrate that all life is precious and valuable.  We all want the same for our loved ones who carry an extra 21st…unlimited opportunity and the chance to show what they are capable of–a life without boundaries where they are encouraged to dream big and flourish, one where a chromosome does not define a being.

To honor World Down Syndrome Day, the colors blue and yellow can be worn as symbols of awareness and respect for those with Down syndrome.

I asked this last year and I will ask every year:  

If you could tell the world one thing about someone you know that has Down syndrome, what would it be?  

My answer will always be the same.

Tessa Jo Carey is a truly remarkable being, not because she has Down syndrome, but because she just is.

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Live and let live.

Happy World Down Syndrome Day!  

To learn more about World Down Syndrome day, please visit:

www.worlddownsyndromeday.org

To learn more about the International Down Syndrome Coalition, please visit:

www.idsforlife.org

To my girlfriends and mamas in waiting…

As I draw near the end of my pregnancy, I find myself thinking a lot about my dear girlfriends.  Some are expecting, some are trying, some may not ever have children, but right now to me they are all mamas in waiting.  And all I can think to do is tell them a few things that are likely headed their way in the weeks, months, and years to come.

Congratulations ladies!  You’re prepping to become a mom–a title that will take some time to get used to, especially when you say things like, “Do you want mommy?”, or “Mommy’s tired!”, or when you are called “Mama” for the first time.  Which leads me to jump the track for a second…if you are reading this and thinking “momma or mama?”  Who cares.  Seriously.

Where was I?  Oh yes, I was about the get sentimental.  I lost that now.  While having a baby is truly a blessing, I want you to know that there will come a time where you will be staring at that baby months after they are born, and it will be in the middle of the night after a scream-a-thon and it will hit you.  Everything you knew about your life prior to this baby will seem to have disappeared.  It may or may not return down the road, but there will be a time when it’s gone.  If someone tells you differently, I promise you they are lying.  Trust me.

You will soon trade sixty minutes for getting ready for twenty, and you will be a pro at it.  You’ll trade cute and snug comfy clothes at home for sweat pants and 99% cotton t-shirts…that’s right, your old high school basketball t-shirt or your partner’s XL pit-stained shirts and you won’t care.  You’ll trade long nights out downtown for some long nights crib-side, and when your nights out happen, you will recover slowly and more painfully than you have ever remembered.  Here are a few others:

  1. Lunch dates for afternoon naps 
  2. An empty tub/shower for a tub full of baby shampoo and water spraying animals
  3. Grey’s Anatomy for Mickey Mouse Clubhouse
  4. Laundry day for laundry week
  5. An hour of privacy for a trip alone to the bathroom
  6. Cute designer handbag for an over-sized diaper bag full of every essential your baby will need for an end-of-the-world apocalypse, plus your wallet, sunglasses, tampons, cell phone and tylenol…and you will rock it like it’s a Coach.

You will find yourself leaving your little one to play alone because you will be too tired.  It happens.  What you do with that time is your choice, but you will get creative.  Your living room will be taken over by more toys than decorative Pier 1 pieces.  You’ll buy more AA, AAA, D and C batteries than you ever anticipated because every freaking toy around requires four of every different kind.  There will be times when you think you still “got it”  and sadly you’ll secretly question “I’m still pretty cool, I think?”  Like when you are alone in your car driving to the grocery store like it’s a vacation and you are rocking out to 90′s on 9 on XM.  Impressed that you still remember the lyrics to that Dr. Dre song, at the same time you’ll want to call him out for being inappropriate.  Sigh.

But I also promise that it will be okay.  Just put down that parenting book that has taken you five months to get half way through because in the end, you will use next to none of it.  You will rely on your own instincts and phone calls to your mother.  You’ll call your doctor way too many times.  You’ll overreact, but you will certainly adapt.   And yet these changes won’t end you.  You’ll laugh at it all because when you really think about how much you have changed, it will be funny.

So hang in there love.  Don’t take yourself so seriously.  And remember when you need or even get a wine break and you have no clean glasses:  Anything that is concave is capable of holding that Pinot!

Spread The Word To End The Word: The R-Word

This Wednesday, March 6, 2013, marks the annual activation day for the Spread The Word To End The Word campaign.  Not sure what I’m talking about?  Then please, pretty please, come here!

Last year was the first time in my life I had ever really dissected the word “retard” (my heart just hurt a little bit having to type that) and all its variables when I wrote my post called “The R-word.”  I never acknowledged a reason to analyze the word ever before.

As many know, it is used as a form of slang.  Sometimes, it’s used with the intention to harm someone’s feelings.  Other times, it’s just used without the thought of how it might offend someone.

Plenty of times, people have said it around me since Tessa was born.  And almost every time that someone realizes what they said, I get, “Oh I’m sorry…I didn’t mean…”  Let’s face it, then the scenario is just awkward.  Usually I will just smile and say it’s fine.  Sometimes I ask that they choose better words.  A small percentage of the time, I try to determine if I am more offended that the person thinks I should be offended by their use of the word…because I certainly do not believe that Tessa is “retarded” by any means.  All in all, it hurts the same.  And I fear that some day she will come home with tears in her eyes and tell me that someone said it to her.  And I will have to explain to her that she is much bigger than the pain that word will bring.

There are people that have gladly labeled parents like me as “over sensitive.”  Some people say we should chill the F out because it is just a word.  As much as I have wanted to label them as insensitive, I just call it thoughtless.  To them, it is only a word.  To me, to my daughter, and to the many, many others who love someone with special needs or who have special needs it is so much more.  So if it is simply “just a word,” then I encourage everyone to please just choose another one.

Because I know what it implies when it is used.  It devalues everything that makes my daughter who she is.  Let me say that I can sum up the last eighteen months of my daughter’s life like this:  There are few who can appreciate the shakiness in her knees as she stands along the couch, the determination in her eyes as she tries to pull herself up, the frustration in her cry when I cannot figure out what she needs, the beauty in her differences.  Few can understand how hard the smallest of tasks can be, how huge it is when she learns a new sign or says a word, the tears and the questions of her parents, the doctors appointments, and every terrifying moment, or the overwhelming feeling of joy she brings us every single day.  Only a few know, understand, and fully appreciate the struggles that she endures and how hard she works to overcome them.  Because they know and I know what it means to watch our loved ones work incredibly hard to adapt and overcome their circumstances.

Yet a word like “retard” is rooted back to someone who is differently-abled?  People with special needs, like Tessa, have been pushed harder than almost all of their typical peers.  So I ask that people use words that won’t shatter how hard my daughter–and countless others–strives to have a normal life.

This Wednesday, March 6, 2013, take the pledge and stand by it.  Help Spread The Word.  I cannot tell anyone what to do or what to say.  I certainly cannot abolish the word’s existence.  I can only ask that people consider a more positive choice of words.  By doing so, we can celebrate the achievements of those who are differently-abled, instead of demeaning their potential.

www.R-word.org Stand up for Tessa or for someone you love.

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Thank you :)

Dear Tessa: Preparing Big Sister

Dear Tessa,

Seven weeks until your debuting role as “big sister.”  I’ve thought a lot about what that will mean for you and for me.  How becoming a big sister means you will no longer be my “baby” baby.  How I will help you make the transition.  In the coming weeks, all I can think to do is soak up all of the time I have with you as my first little.  Because soon there will be another leaf budding on our tree.

I’ve relished so much in your successes lately because I am so very proud of you.  Slowly but surely you are becoming a toddler.  My big girl.  I have reminisced the last eighteen months of you growing.  For most babies, milestones come naturally.  For you they did, too, but with assistance.  We had the pleasure of teaching and guiding each one of your milestones.  The little set backs made us pay attention and kept our focus.  So when your big moments happened, they were monumental and bittersweet–even if sometimes they only lasted for a few days and disappeared only to return a short while later.

Like last night when started pulling yourself up and cruising around the furniture.

Like last night when you started pulling yourself up and cruising around the furniture.

And for that I am thankful.  Because I know this is a gift I will pass on with your little sister; the habit of always watching closely and focusing so I do not miss a minute of her growing, of course with you helping her.  And if I ever get distracted, I will have you to remind me.

I know it will be tough at times.  We will have two littles under the age of two.  It will challenge your Dad and I.  It will challenge you as well.  Now and again, it will frustrate Casin.  But I promise in all of that, I won’t leave you behind…ever.  I will still take your picture–probably even more, your Dad will still rock you to sleep at night, your brother will still read you books and we will always celebrate your victories.

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People tell me to watch out and that toddlers struggle with new babies.  I am not expecting a lot of perfection.  I am aware that you will need me more.  But I don’t seem to mind, otherwise we would have waited longer.  I know that it means my alone time with you post-baby will be even more fulfilling than it is now.

My head is filling up with forthcoming memories like the two of you coloring with sidewalk chalk and helping mommy bake and playing house and eventually fighting over clothes and sacred privacy that big sisters long for…just like what I had with Aunt Erika.

I cannot wait to introduce you to your sister and new best friend.  I have envisioned the picturesque moment when you come through the hospital room door and sit on my lap with your baby sister.  Mostly, I cannot wait to refer to you both as my girls.

Until then I am hanging on tight to my girl.

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Love, Mom

What my second pregnancy has taught me…

I’ve gone back and forth for weeks deciding whether or not to share this post with readers.  I have been known to be honest and frank about opening our lives up and why anyone would care.  The point is, it doesn’t matter to me if I am being too honest and sharing too much.  I have learned that somewhere in the world someone is sitting in similar shoes as me sitting in the fear of the unknown, and I just might be able to give a little insight.  So once again I ask that readers keep an open mind.  I am also not a medical professional; therefore, any medical related information should not be considered professional advice.

In October I published a post called Prenatal Testing where I talked about the choice Dan and I made to have non-invasive prenatal testing done with our second pregnancy.  I also talked a lot about how this pregnancy, at the time, was as scary as it was exciting for me.  Shortly after my second trimester had started, I found myself relaxing more and really starting to enjoy being pregnant again.

The weeks that followed well into our second trimester would soon become another reality check in parenting that we certainly were not ready for…again.  Going into our 20 week ultrasound, Dan and I were confident that everything would go great and that everything would be “normal.”  Our only uncertainty fell on whether or not we would find out what we were having.  We enjoyed all of the scan watching our next little kick and suck her thumb and turn toward us.  We left knowing we would soon again be having a healthy baby girl.  The ultrasound technician said, “everything looked perfect,” as she handed us our pictures to take home.

It wasn’t until the following week at my routine OB appointment that I learned of a small “hiccup” that was detected in the scan.  I asked if everything looked good in the ultrasound.  I recall my doctor’s words going a lot like, “Everything looked great, except…” And I froze.  Except what?  The tech said everything was perfect, so there should be no “excepts” here.  A choroid plexus cyst was developing on our tiny baby girl’s brain.  I stayed as calm as I could so she could explain what this was, but I was shattered inside.  Like a sponge, I soaked up every last word she spoke.  She must have known how this would hit me because she reassured me over and over that this can be a normal process in the development of a baby.  She also said that they can dissolve on their own by 24-28 weeks, and in most cases do just that.  ”I don’t even want to have to tell you this,” she said.  She was confident that this was an isolated cyst because everything else looked perfect on the ultrasound.  Choroid plexus cysts have had a debatable history of whether or not they are soft markers for chromosome problems.  Since Tessa has Down syndrome, the choroid plexus cyst was a red flag on this ultrasound.  All I knew was that a cyst was growing on my baby’s brain, and I was nervous.

She knew when I left her office that I would be speeding home to Google.  Like I did when Tessa was first born, I gathered up as much information as I could get my hands on.  Because if there is one thing I have gotten real good at, it’s researching.

So here is mostly what I have learned.  Almost everything I found said the exact same thing.  However, I felt that this site said it best.  Sourced from the Greater Baltimore Medical Center:

“The second trimester ultrasound examination (sonogram) will sometimes identify a cyst or cysts in the choroid plexus.  The choroid plexus is a tissue in the brain that produces cerebrospinal fluid.  Fluid-filled cysts, called choroid plexus cysts or CPCs, are identified by ultrasound in approximately 1-3% of all pregnancies scanned between 16 and 24 weeks gestation.  In the majority of cases, CPCs disappear by the 28th week of pregnancy with no effect on the baby.  However, a fetal CPC is considered a “marker”, indicating that the baby may have an increased risk for a chromosome abnormality.”  

The cysts themselves cause absolutely no harm to the baby or its development during or after pregnancy.  It is when other “flags” appear in an ultrasound paired with the cyst, that raises questions.  My doctor told me in most cases, these cause more stress to the parents than anything else.  Why?  Because it sounds terrifying–a cyst on your unborn child’s brain.  And the uncertainty that comes along with it.  We decided to do a follow-up ultrasound to check on the cyst.

The five to six weeks we waited for the follow-up were worrisome and stressful, but we made it through.  I learned fast to put my big girl pants on and be strong for myself, my husband and my baby.  At the time, we decided it was best to stay private about all of this.  We also knew that we would be fine no matter what the scan said.  We knew our daughter would be perfect even if a piece of paper might suggest otherwise.  We knew she would be loved deeply alongside her big brother and sister.  It was an agonizing wait…similar to waiting for Tessa’s karyotype results after she was born.  They read the ultrasound while we were at the hospital because I wouldn’t wait another day.

The cyst had dissolved on its own and everything had once again looked great.  Of course we were relieved to hear, but it opened my eyes even more than they already were.  These hurdles are placed in front of us so that we figure out how to jump over them.  In hindsight it was a pleasant reminder of how strong my family really is, knowing that we can make it over these hurdles.

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What can you do if you are told your baby has a choroid plexus cyst(s) on its brain?

  1. First and foremost–talk with your doctor and ask questions.
  2. Decide what options are best–whether it be additional testing or another ultrasound
  3. Research–read up as much as you can, but always keep an open mind to what you may read.  Check out the message board at http://choroidplexuscyst.org/
  4. If you aren’t satisfied with information you have received, ask for another opinion.

A phone call.

Toward the end of last week, I had planned a girls date with my niece Kylie to go get pedicures and dinner before she went on a trip to Florida.  Since I barely get to spend any one on one time with that little beauty, I was really looking forward to a few hours of “girl-time.”  I had to go and pick up Tessa from daycare before Kylie got there.  I was opening the front door and the phone rang.

Normally, I would have just kept walking and let our voicemail pick it up and get to it later because if the house phone rings, it is almost always for Dan’s business.  But I felt compelled to answer it.

“Mrs. Carey?”  The sweetest of elderly voices asked.

“Um, yes.  That’s me.”

“You don’t know me, but I found your phone number and I needed to call you.  You see, I had a son named John.  He had Down syndrome, and he was the love of my life.”

I shut the front door, went to my bedroom, and sat at the edge of my bed.  All the uses of past tense verbs told me I should be alone for this conversation.  As the conversation began, I was right.

She is a little old lady who lives in a small town near the Mississippi River in rural Wisconsin.  She read a newspaper article that featured Tessa, the book and our story in the Telegraph Herald from the week before.  She had a message she wanted needed to share with me.

I hung onto her every word, and I will never forget this phone call.  I didn’t say much.  I just let her talk.

“I didn’t know John was a Down syndrome baby when he was born.”  The generational gap between her rhetoric and mine was humorous to me because I have learned that some of the elderly unintentionally refer to people who have Down syndome as “the Down’s boy,” or “a Down’s person,”  my personal favorite, “…she’s a Down syndrome girl…”  Accidentally defining their being by that extra chromosome instead of just saying that someone has Down syndrome.  But it’s okay, I understand what they mean; even though I really, really want to correct them :)

“I found out two months after he was born when I took him to the doctor in Dubuque, Iowa. They told me he would be nothing.  They told me he wouldn’t do anything or learn anything.  They wanted to take him away from me.  They told me I would need to put him in an institution.  I screamed and yelled that no one would take my boy–my baby.  I ran out of that office with my little boy in my arms, and I never went back to that doctor.  I think I cried the whole way home.”

Tears ran down my face.  Because I knew she needed to be heard.  I knew this was something she had been waiting to tell someone.  And I just let her keep talking.

“Now you listen to me.  Having John back then was tough, but I loved my son.  People weren’t always so accepting.  They had their doubts.  So please love that little girl with everything you have and for all she’s worth.  Because she is the greatest blessing you will ever have in your life.”

She spoke of how she implemented a special needs program in the school where she taught so John could attend school with his friends, how his grandparents adored him.  She talked about how her husband moved south to work and how she did it basically on her own.  She reminisced about taking John on vacations all over the country and how much he loved to travel and how great the people were.  She told me about his work.  She told me that John’s speech was greatly impaired and they formed a method of communication that worked for almost everyone that knew him.  She told me how many lives he touched just by being himself.  She told me about his last birthday shortly after he suffered a stroke during one of his routine throat-stretchings.  Then she cried…a lot.  She said all of the nursing home staff threw John a birthday party.  People made signs and banners.  His friends from town came in to see him.  Two days after his 53rd birthday, John died.

“So don’t let anyone tell you she can’t do anything.  Don’t let anyone break her down.  She is worth a lot.  Love her with all you have.”  While no one has really ever told me Tessa will be incapable of doing things, years ago people told this woman that of her son John.  Times are certainly different now.  While that may be true for today’s kids like Tessa, her message that stems from experience in a harsher world is important:  Never doubt your child’s potential and love them with your whole heart. 

A mother’s love prevails against all odds.

I am grateful to have met the people that I have met and continue to meet because of my daughter.  I adored the phone call that changed my day–my week. The way in which she reminded me of how wonderful having a child with Down syndrome is, and how she didn’t want me to forget it, was endearing.  Her sense of urgency in delivering such specific details about her son stands out like a part of her wondered if I was unsure of what to expect of my daughter’s future.  Mostly, I believe it was her genuine well wishes and thoughtful words that touched me most.  She loved the idea of 47 Strings:  Tessa’s Special Code and only wished she could have shared it with her son.

Today I will be sending her a copy of the book.  I only hope she enjoys it as much as I enjoyed the very special phone call she made to me last week.

mom-tessa

Photo courtesy of Ann Gorgen Photography

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