Joined at the Strands


Sister, you been on my mind.

Sister, we’re two of a kind.

Oh, sister, I’m keepin’ my eye on you.

‘Miss Celie’s Blues’ from TheColor Purple.

My little sister thinks I hung the moon.  Even though I tortured her when we were young—literally—to this day she affords me hero-worship of which I am entirely undeserving.  And when she’s in pain, I still find myself wanting to make everything better though she’s across the country and not in the next room.  2,000 miles separate us now and our visits are too few, too far between. The reunions are bittersweet.  Even still, after a few days together well-worn patterns resurface.  I can be controlling and bossy.  She tends towards flighty and irresponsible. But we have the same nose. And thighs.  We laugh at the same jokes.  We share memories of times both good and not so good.  When we’re together we are children again and neither time nor distance can alter that connection.  Sisters; the love/hate bond of this relationship is like no other, making it one of the most sustaining to span a lifetime.

As a single mom of two kids I wanted a second chance at a happy family. I wanted a man who would love not only me but my children.  I was lucky enough to meet the man of my dreams who didn’t hesitate, not for a moment.  Steve Kent took the package deal I was offering, loving my kids like they were his own.  We also wanted to add to our family and after a few years we started trying for a baby.  Our first attempt ended in miscarriage and we were heart broken.  And I was surprised.  I didn’t realize between 10 and 25% of clinically recognized pregnancies end in the first trimester.  Never having had fertility issues in my 20s, I was now in my mid-30s and it was a different story.  The term advanced maternal age now applied to me.  Lovely.

After some testing we tried again.  Determined to maximize our chances, I took prenatal vitamins and folic acid.  I exercised and cut caffeine and alcohol.  When I conceived I was ecstatic, and though my body felt the difference in years, Steven’s amazement at creating a new life made it absolutely magical.  He brought me books with beautiful pictures and we tracked the stages of development.  He found the coolest, latest baby gear.  We decorated the nursery and bought the most adorable clothes and shoes and hair bows.  Steven bought a monitor for my belly so we could listen to her heartbeat.  We named her.

Sydney was born and took her rightful place at the center of our universe.  Down syndrome was unforeseen, her beautiful spirit was not.  With an incredible presence, everyone from the NICU staff to friends and neighbors to strangers in the grocery store were magnetically drawn to her—and Steven carried hand sanitizer.  He was in love, in a baby coma.  I felt the same way, everyone did.  We just couldn’t get enough. And Sydney enjoyed celebrity status. Her grandparents doted, her aunties and cousins cooed and coddled and older siblings Melissa and Jeremy paraded their baby sister around at football games and other school events in the small southwestern Missouri town where neighbors look out for each other and old Victorian houses line the block. Life was about as “Mayberry” as it gets.  And cherubic Sydney, an integral part of our busy lives, smiled and danced and lit up the world around her.

Daily life accelerated, month rolling into month, unfolding in its beauty and complexity until Sydney was four years old. My biological clock, being what it was—ticking—demanded we face the inevitable decision: should we have more children or not?  Although the odds for DS increased, it wasn’t necessarily the risk that dissuaded me.  I didn’t know if I could even endure another pregnancy.  Steven didn’t think he could endure me not enduring another pregnancy.  Beyond that, what would it mean to start again, to raise another child?  Then again, what about a little brother or sister for Sydney?  While she had her older siblings, it wouldn’t be long before they were out of the house and she’d live, more or less, as an only child.  “Are you sure you don’t want to have another baby?” I’d asked Steven. He assured me he was content and so it was decided.  I went on the pill.  We sold all our baby gear.  And promptly got pregnant.

A blighted ovum, my OB called it, which happens when a fertilized egg attaches itself to the uterine wall, but the embryo does not develop. In ten years he’d never seen this result in a full-term pregnancy and sent me home with pain meds in anticipation of a miscarriage that never happened.  Instead, my hormone levels doubled and a second ultrasound showed the unmistakable flicker of a heartbeat.  I looked at the screen and my eyes flew to Steven’s.  The recognition of our future and its change in trajectory passed between us in an instant.

At 40, my oldest would be graduating from high school while my youngest would be making her entrance into the world.  Acceptance of this fact didn’t arrive until halfway through my pregnancy.  I felt older and more tired than I ever thought possible, but there was just no time to focus on it.  The tide of daily life swept us forward.  Haley’s birth was the opposite of Sydney’s: scheduled, without panic and without pain (the epidural might be the greatest medical advance to date).   From conception to birth, I felt my conscious participation was not needed.  Everything happened as if she showed up of her own volition.

After two days of sleepy perfection, Haley started crying and didn’t stop for a year.  Sydney’s jealousy was palpable.  We’d read The New Baby by Mercer Mayer and other books, but no amount of preparation could have quelled her confusion about this noisy little creature that would not go away.  Haley stole her spotlight and left Sydney without undivided attention, hell without much attention at all.  As she saw it, she had two recourses; 1) act out, and/or 2) off her baby sister.  Trust me when I say that Sydney had no malice when she pushed her baby sister over the edge of the bed, or down the stairs (Me: “What is that sound? Thump, thump, thump, Waaaah!! Ach!! My baby!” ).   She simply viewed Haley as an interloper.  I quickly learned not to leave them alone in the same room.  Sydney would place books on the baby’s face, and add her body weight.  Innocently walking by, she’d suddenly give the swing a good heave-ho.   Impulsively and without provocation, she’d shove a seated Haley to the floor, knocking her down like a Bobo doll.  “Soft hands! Soft touch!” we’d say.  “She’s just a baby.  You’re a big girl.”  Haley hit her head so many times on the tile floor that Steven nick-named her Iron Skull.  Honestly, I was worried sick about it and the solution that emerged was to carry the baby incessantly, balancing her on one hip while performing all my domestic duties, including caring for Sydney, with the other arm.  Thus setting the stage for the balancing act that persists today in mothering the two extremes of their personalities.

As Sydney adjusted to the permanence of her sister and Haley developed a thick skin, the tables turned.  It became evident early on that Haley was energetic and, um, boisterous.  Her assault was on the ears and on the nerves; overstimulation her weapon of choice.   Sydney, easy-going and quiet, was driven to search in vain for relief from Haley’s barrage of sensory input. Sydney can still be found with her hands to the sides of her head moaning, “Too loud!  Too loud!”

They’re now twelve and eight years old and know nothing other than being sisters.  Haley is the Ramona to Sydney’s Beezus.  Haley takes Sydney’s things without asking and Sydney relents.  She lets her little sister boss her around and make the rules.  She’s patient and generous—most of the time.  After a game of Candy Land, Haley comes running out yelling, “I won, I won!”  Sydney runs after her saying, “And I’m a good loser!”  They share clothes and shoes and hair bows.  At night Haley says, “I love you, Sydney” and later climbs in bed to wrap herself around her big sister after a bad dream.  Like any siblings, they annoy and pester each other when they’ve had too much time together and miss each other after too much time apart.

For Christmas this year Haley gave Sydney and herself BFF necklaces; one is a heart with a lock and the other is the key to that lock.  I like to think of them 20, 30, 40 years from now.  Close as any sisters are—disability aside.  They will always have a unique relationship. Haley will have the intimate experience of knowing Sydney as her sister firstly and as someone who has DS, secondly.  And Sydney will have a sister who gets her, who loves her purely and unconditionally.

As parents of our special kiddo, Steven and I can find ourselves consumed with advocating for her education, creating opportunities for social interaction and staying on top of cutting edge research.  Frequently our efforts feel inadequate.  But then sometimes I wonder if the best therapy of all isn’t being part of a family.  Sharing the same DNA.  Having a sister.

As Sydney was reading one night, she came to the line, “Zac said, ‘Dad!  Look at the duck in the pond,’” except she said, “Dad! Look at the Haley in the pond.”  Everyone chuckled and Haley said, “Yeah, that’s me when I was a duck.”


Leave a Comment

Filed under Babies, Childbirth, Down syndrome, Family, Parenting, Siblings, Sisterhood, Special Needs

Leave a Reply