Monthly Archives: May 2015

So there’s a lovely, little anecdote called, “Welcome to Holland” written by Emily Pearl Kingsley.  It is an analogy of sorts. It compares: welcoming a wee-one with a disability to a trip to Holland.  If you haven’t read it, you should… You can find it here….It’s pretty amazing stuff….UNLESS…. you’re still grieving, you bleed Italian blood, or someone tells you this tale and botches it completely.   Imagine my disdain when all three happened concurrently.


See, I was in the hospital after Judah was born, doing what I did.  Crying huge, puddle making tears.  My face was crimson and splotchy, my breath was hard to catch, my brain was blurry with suffering and my eyes were puffy and tired.  In this state I would have preferred to be seen by no one.   However, when you are in the hospital, nurses must make their pesky, frequent visits.  Every time a nurse arrived, I felt the need to preface my crying; in case they didn’t know. Their facial expressions were all similar.  They were nervous to be around me and annoyingly much less afflicted than I was.  They held sympathetic eyes but didn’t quite get my condition. I still felt the need to purge my pain.  I shared, sobbed and longed for them to say something along the lines of “oh, this situation is clearly upsetting you.  Let’s put that baby right back, do it again, and everything will be perfectly okay.”  Anything less than that statement invoked more tears and inner anger.


There was one nurse that we knew.  She was lovely and what seems like forever ago, she prepared us for Calvin’s birth with “thee classes.”  A great teacher, she was.  A successful storyteller, she was not. When she coincidentally arrived in room 1410 she carefully reviewed my fragile state.  Satisfied that she could solve my suffering, she cleared a comfy space for herself at the foot of my bed.  She then attempted to launch into the story of “Holland”…..except, she couldn’t remember the name of the place. “What’s that place with the tulips?'” she asked Bobby and I.  “The one with the windmills?” “Not, Switzerland, what is it?”  THIS was our introduction to the story.

I am now convinced I had her flustered.  When I say I was in a state, words do not do it justice.  This kind, blessed, sweetheart of a woman was grasping for words that my position made her forget..  The pressure that radiated from my sad swollen eyes, told her “please! make this all okay.”  I know now that I was a lot to take….so much in fact, that I made her  forget the name of the place that a story was named after.

The nurse nevertheless continued the story with the same amount of stammering.  She knew some parts.  She remembered that “we” were supposed to be heading to Italy and that the place we were headed to was not “disgusting or famine filled.”   When even more details escaped her she ended with, “well, anyway, basically, the story is supposed to show you that you are just somewhere different, not Italy but not bad….and that if you keep thinking of Italy then you will miss out on the tulips, and windmills in this other place.”  I hugged her as Bobby and I doled out thank you’s.  Then, when she turned to leave, she put a finger to her lip and calmy rejoiced “I remember now, it was Holland.”   Not a minute later, when she finally retreated, my first words were: “Bobby, F#*&  Holland!!!!”…and that’s how I came to hate the story “Welcome to Holland.”  It was that place with a forgotten name,  told with careless disregard, by a Holland loving nurse. It was compared to the native land of my ancestors and told when my body was an anvil of grief.


Others (and really, thank you all, it was not you, it was timing and it was ME) sent me this story via facebook in private messages.  I kindly thanked them all and NEVER once re-read it.  In fact,  here is a quote  from my first blog entry when I renamed it “Finding The Joy” : ….”I have chosen to rename and remake my life.   I choose to not rename my life with a trip to Holland , but rather to include the “Italy”  in all my obstacles.”  WHOA!!  That’s the stuff that denial quilts are sewn from.  But, I wasn’t ready, and you can’t punch your airline ticket to Holland until you’ve felt what you needed to feel ……Oddly, close to Mother’s Day,with no real acknowledgement, I was finally ready.

Now, an attendant didn’t announce  “Beth, you may board your flight to Holland now” and no one pulled my arm toward the gate.  It was subtle, eerie, fated. I just happened to be scrolling through my Insta-friends, many that hold a passport to this different destination. Littlest Warrior (who I bought my “Be Kind” t-shirt from) was explaining another top-selling, toddler t-shirt that boasted “Holland Tour Guide.”  She shared the story for her followers that didn’t know.  For some reason, I decided to finally give the story another try.  It’s like I read it with a new set of  eyes.  I bursted with pride at every line, screaming “YES” YES, YES… that’s us!!”  I did imaginary victory leaps, with jazz hands singing in the air.  I cried tears for being understood and how the analogy nailed it  just perfectly. I was so excited that I had to shout it to someone and so I shared the tome, via Instagram , with my sister-in-law….( or as I like to call her, my dearest friend.)  Being the busy women that we are, we never actually discussed what transpired.  Then, the very next day ,a Mother’s Day card arrived, addressed to me from her mother.  Inside, folded in fate,  in my hot little hands, landed the story “Welcome to Holland.”  I couldn’t call my sister-in-bestie fast enough. When we spoke, we could not believe the timing.  It was too wild that I shared the story with her, just hours before the mailman delivered her mom’s card…. she revealed to me “my mom has been wanting to give that to you, and she knew she had to wait”  The perfect amount of time had passed.  The story was plastered firmly in Judah’s book, my layover had expired, my journey was embarking,  and I couldn’t wait to tip-toe through the tulips.


To those who wonder, who are scanning for inside meaning, or wish they could strike it rich, extracting deep thoughts from my cerebellum. No need. My pages are here for you, crisp, open, waiting to be read….I pledge honesty to all of you…to every one of you…

To those with a fresh prenatal diagnosis .  To those surprised while cradling their new one, just learning, averting the stare of precious almond eyes. To the old school ones, who knew only of institutionalization and premature parting.  To those who feel I’m putting on airs or masking deeper despair.  To those who fear or are ignorant (like I was) and to those who I wish I was 6 months ago; allowing, accepting, and adoring…

I am proud to announce that I am elated to be in Holland.  There is no sadness, regrets, jealousy, or projection here.  It is all a glorious revelation.  I am Dorothy in Oz but with everyone I love.  I know, I know,… those of you with the “fresh diagnosis” hate my positivity right now; my magical mentality.  You can.  You can want to stomp on tulips and detest windmills.  In fact, you should.  For when it is all over, and  the grief is gone….you will think,  jeez why did I ever hate Holland so much?  Holland never came to kidnap me.  It never took me captive there.  It never made me love it.  It just was… with it’s beauty and differences.  All along it had sublime souvenirs, tour guides to teach me, and  brilliant brochures.  Most importantly, it had glorious natives like my very own Ju-Ju…They were right there, all along,  to change my perspective of Mona Lisa beauty.  Tales of tenacity, compassion, inclusion and prosperity run rampant in Holland.   They easily sway me from rich red wines and crusty bread.  I love you Holland. I have arrived.  I am putting down roots here… And, I may still take that trip to Italy one day.  But it will be to share all the fascinating artistry that Holland proudly holds.


Sidebar:  As I was about to publish this, it occurred to me that Bobby and I chose tulips for our wedding.  I have to wonder: was all this funny foreshadowing getting us ready?  Our coincidences are too far frequent and magical to be anything else but divine!!!!!  Thank you Jesus for our little blessing.  Happy 6th months Bubba.

It was easy for me to decide what to share on Judah’s 5 month birthday………why, the 5 senses of course.  People with Down Syndrome all have some degree of impairment with their senses and so this  choice was the most sensible one. (quick, duck, it’s a pun.)


The sense of touch is probably the least impacted sense.  In essence, touch isn’t really affected at all.  However, remember that pesky low muscle tone I mentioned in a past post? Yes, well, there is that.  When muscles aren’t toned you can’t feel them working as well.  The lower the tone the less you feel.  I mentioned Judah’s absolutely adorable, squishy cheeks and how they are a result of low tone?  Well, when his speech teacher comes (yes, he has speech already)  we work on squeezing those babies and making circles around his mouth to give his muscles a warm up.  Judah’s tone around his mouth is actually pretty solid.  This will be important to remember as I brush you up on the sense of taste…..Before we head to taste though, I want to mention something else pretty special.  Not so much about touch, but more about the hands and feet. One marker that shows up in 45% of babies with Down Syndrome is  a single, transverse palmar crease.  It looks like a really long life line that travels across the center of the palm instead of a heart and head line.  Not every person who has it also has DS and Judah’s is debatable.  When the nurses and doctors surrounded our son in the hospital and everyone was trying to hypothesize, this was something that was deliberated.  Some consultants saw the crease and some didn’t.  It was a thing that I overly inspected in the early days.  I was looking for signs of hope, staring,  willing Judah to be Down Syndrome free.   The truth is now I don’t care if he has it or not.  It affects nothing.  It does not hinder growth in any way.  It’s cause has been linked to that  hyptonia or low tone.  Some say it is because the low tone did not allow the infant to make a tight fist in the womb, but  who knows?  All I know is it’s unique, divergent and therefore, pretty darn cool.


So, the feet.  They can be divergent and uniquely cool as well.  There is another marker for Down Syndrome called sandal gap.  This ALSO is present in 45% of people with Down Syndrome and impedes nothing.  It is, as its name suggests: a gap in between the first and second toe… sparking jealousy amongst all the flip-flop wearers of the world..  Again, people without Down Syndrome also have this gap and again Judah’s is apparent but not prominent.  These markers can be seen on ultrasounds and I feel so fortunate that they were not spotted on mine.  I would’ve fretted, sniveled, regretted.  But now, these markers are more like medals.  They say I’m here, I’m different ; like everyone else……so in fact, I am the same.


Moving on.  The sense of taste, one of my favorites, is not EXACTLY what is affected here, but for all intensive purposes of staying with a theme, lets go with it.  What is afflicted is the ability to eat.  Oh, low tonie, you never stray too far do you?  When a baby has low tone, it exists with varied activity.  Some babies, are just a little more “floppy” while some will walk, talk, and, yes, eat much later than other kiddos their age.  See, that low tone is part of the reason for a protruding tongue.  Back to human anatomy here, the tongue is indeed just one big muscle….so, you can see how things would go awry if the tone was less than stellar.  One may be unable to push their food around or successfully swallow a drink. At a very tiny age breast or bottle feeding can be near impossible.  In fact, many babies with DS have contentions with their GI tract and a G-tube to keep them nourished. This requires surgery, constant monitoring, and a steel set of nerves from mommy and daddy.   So far Judah has done poor with breast feeding, well with a bottle and the jury is still out on solid foods just yet.  He’s tried whipped cream, frosting and cereal.  Loved the whipped cream, sucked the icing down but the cereal he just pushes back out of his mouth.  Plain rice cereal with formula? Not sure that I blame him here.  It could be his age or his low tone??  Like most things with the littles (especially the ones with that little something extra) only time will tell.


The eyes and ears.  All the better to see and hear you with….and the most troublesome for all those who have their hand in the Down Syndrome game.  Almost all players must overcome the obstacle of vision and hearing; the very two senses that pillow our days.  With vision, there is a backpack of goodies one with DS may carry.  There’s cataracts, nearsightedness, its counterpart, farsightedness, astigmatism, weak accommodation, tear duct abnormalities and eye misalignment.  One or more of these will probably be present and eyeglass cleaner is a bankable investment. These cherubs should see an optometrist at the ripe ol’ age of 6 months and that’s next month for us. Crazy!!!  Since eye issues are popular in our family and I’m a betting woman, I would put a whole stack of cash on Judah wearing glasses.  Have you seen baby glasses though? Adorable.


Also, who could ignore the beautiful upward slanted, or preferably, almond eye that is a clear marker of Down Syndrome?  It is the trait that I noticed first on Judah, the one that was like a beacon, and admittedly, the one that made me most uncomfortable during the shame days. I’m sure you know that people with DS used to be call mongoloids (insert severe stomach knot here) but did you know that it’s because they had the almond eyes like those from Mongolia?  I found that interesting and oddly calming.  It took  the creepy, monster-like presence away from the name .  The eye shape of my baby does not bisect the chain of the connection I feel when I stare into them…it enhances it.


One more thing about the eyes.  There are sometimes little speckles called Brushfield spots that are sprinkled around the iris.  This is another peculiar feature and not everyone with Down Syndrome has them.  Also, some people without DS do have them.  Judah has them.  They alter nothing………unless you count the magic you feel when you stare deep and see twinkling stars, glistening in his baby blues.


I purposely saved hearing for last.  This is because when Judah was born we were told he could not hear.  He failed his first tests ever within just hours of his life… honestly, I had no idea how to take it.  My mind was already reeling from so much.  I wasn’t extensively distraught, I didn’t cry (about that) and I clearly remember my stream of consciousness , it went a bit like this:  Did Calvin get a hearing test?  Did he pass?  How do I not remember them whisking him away? Why didn’t we celebrate him passing? Why was I so nonchalant with his milestones? Am I being punished? Am I a bad mom? …and so burrowing like a bunny I went.  We were told  that failing a hearing test was common and that Judah could be tested again at 6 weeks.  So, off we went,  without malice or intent,  treating our son like he was deaf.  He was stewn with kisses and huddled with hugs, but we spared the baby talk and declared to others “he can’t hear you.”  When families came wielding welcomes and their children were, you know, being children… parents would considerately scold “shh, the baby’s sleeping.”  In turn, we would classically reply, “don’t worry, he can’t hear you.”  Calvin would scream into the poor kid’s ear….nothin’.  Loud kid toys, extreme television volume, deliberate cymbal playing, still, nothing.  Ironically,  I never believed Judah would stay completely deaf.  I was now fluent in all that was Down Syndrome and aware of skinny ear canals and some hearing impairments that accompanied the disability. I sought sufficiency in bug like hearing aids and my miniature knowledge of American Sign Language.   We armed ourselves with faith that came from little flinches when random “thuds” thudded in our house.  We were stuck in a peculiar place. We were pretty sure this kid could hear something… but, if we put too much conviction into it, and we were wrong, could we bounce back from another blow?  I think Bobby and I (and even those closest to us) couldn’t get off the ride.  It was like a see-saw.  “No, he can hear, he can definitely hear.  Look at him.”  *Cue loud noise* ” nope, he didn’t hear that.  maybe he can’t hear?  I toyed with the idea more out of sport then out of trying to solve the riddle.  After 9 months of deliberating a Down Syndrome diagnosis and two weeks of deciphering an illness, I honestly had no fight  left in me.  I cared, but I couldn’t put my heart into it either way.  I couldn’t bear to.  So, I became the most patient person I had ever been in my life and crossed off calendar days until our visit to Hear to Learn.  We went, just Judah and I, because he needed to be sleeping, and the area quiet.  So far he was cooperating perfectly.  Snug in his car seat and all studied up for his next test. They brought him in a sound proof room and loaded him up with little circles (this was becoming a pattern and one I was not fond of.)  Oh the waiting.  It had to be silent, dark, no magazines, no talking, no whispering, no moving for fifteen WHOLE minutes……..and then it was time for the other ear.  I have never sat so still in my life.  At least the doctor had the decency to give me a thumbs up on ear number 1 before starting ear number 2.  I rode that high almost through all of ear number 2.  When my patience was just about to run thin again, she declared… “well, he can hear.”   Now, I felt she should check my ears.  Did I hear that right? I couldn’t believe it.  I cried the happiest of tears, I smooched those chunker cheeks, I whispered “I love you” in both ears.  My service coordinator came for the big day and her grin and mine were twins. She kept saying “see” “you knew it was only because he was early,” because he was sick.”  She was right. Deep in my belly, those feelings that proved themselves so many times before, had me believing that my baby would hear, at least to some extent…..but now there was a new contender in town.  One that shook my confidence. One that made me tip-toe, stop breathing, research, inquire, pray for the best, mentally prepare for the worst, physically prepare for the tears, tell myself no matter what it will be alright, convince myself it will be alright, know that Bobby and I can do anything, pin the pros on my shirt, throw the cons in an old drawer, thank God, cling to my family, sleep with one eye open and count my blessings.  I am acquainted with possibilities like glaucoma,  G-tubes,  sign language, hearing aids and speech problems and I will not cower….because all that has happened in the past has prepared us for our future….a future denied to many.  Amen.


I think on some level I always wanted to be a mother, though archaic me would deny and deny, even to the firing squad…. It was coveted but never really perceived and all that it would entail.  Patience and selflessness.  A love and worry so deep that it glides through organs and slices into your soul.  A new set of eyes, a second chance to relish, a tired like no other.  To be a mom is so much harder.  My lie detector would be making mountains if I said I never thought “what the hell was I thinking?” on some days.  But on most days… being a mother makes me so much richer; richer with wonder. I wonder how I would breathe if I couldn’t hold my babies everyday.  I wonder if the women I love without kids realize that their mama role just takes another form. I wonder how difficult it is to want a child with every single cell yet be unable to will it true.  I wonder if all the moms I know, realize how proud and judge-free I am of them, simply because they show up everyday.  I wonder if God knows how thankful I am to have this job even though I don’t always act it.  I wonder if there is a way I can reach all the mommy’s to be and tell ’em hold on, you’re in for the ride of a lifetime.  I wonder if my mom knows that I now know.  I know how much she loves me and that she went to battle with me because she went to battle for me.  I wonder how all those who lost their mommies are holding up today and I hope they know, they are in my prayers always.   I wonder how mothers without disposable diapers and the threat of polio made it, back when the going was  really tough .  I wonder if I’ll live up to the mom I want to be and I wonder if all the other mamas out there wonder as much as me.  That richness,  wonder and worry is my journey now… and though sometimes I feel I don’t deserve it or I pinch myself because I can’t believe it,  I want to thank old “let’s just do it” me because I  never knew it could be so grand.


Thanks for capturing this moment Aunt Cindy

Thanks for capturing this moment Aunt Cindy

Happy Mother’s Day to all my mama bears…whether you are relishing, denying or just don’t know yet.   I love what you’re doing and I love your path so very much.

I didn’t know
I needed to grow
But you showed me
What was missing
And you let me
Take it slow

When I look in your eyes
I see forever in time
How you’ll remake me
And reshape me
And make me
Better inside

I feel the shame
In those early days
But when I hug you
And love you
And see the halo above you
It all goes away

You showed me
Your eyes told me
You made me aware
So I’ll hold you
And behold you
And I won’t be scared

That fuzzy head
That gummy grin
And that nose
And those toes
Where do I begin

Who will you be
What will you do
Will you swim miles
Will you sing songs
What will you prove

I’ll never let go
I’ll always hold tight
Never lose sight
Fight the good fight
Darlin, we’ll be alright

‘Cause you showed me
Your eyes told me
You made me aware
So I’ll hold you
And behold you
And I won’t be scared.