Tap, tap, tap.

Some people have asked me how we knew to even think LP might have Down Syndrome.  I’m sure many of you are curious.  I would be, as well.  I’m not sure when it started.  When I think back on those few weeks, they seem blurry already, but what I do remember are flashes.  Flashes of feeling, thought, memory, perception; I don’t know.  And there was something like a persistent, but unlocatable tapping noise that I only heard when I was alone. With each of those flashes, there was another tap.  Tap…  Tap…  Tap…  each time it was like a marble added to a scale, getting heavier and heavier, to show me something I didn’t want to see.  

I was anxious during my pregnancy.  I wondered if we had pushed our luck with this third.  We had two healthy, amazing, beautiful daughters.  Maybe this was asking for one thing too many.  Maybe we had successfully spun the roulette wheel twice, but that was it.  I worried how I would handle three kids.  I kept thinking about why I’d been so lucky not to ever have had a miscarriage, when so many do.  The entire first trimester, I worried that this time, I would finally experience the heartbreak of losing an unborn baby.  I fixated on how much I hated being pregnant.  I worried about car accidents, Listeria, everything.  Other than overindulging in grumpy pregger lady complaints, I never told anyone how I really felt.  How could I?  What was the point?  I was just being anxious for nothing, obviously.

During labor, there was difference there as well.  I had been through two labors already.  I knew how it would feel.  I expected the pain.  When the time came, however, it was as if being in labor was a one woman show, not an interplay between my body and the little creature inside, wanting to get out.  I know that the phrase “I birthed my baby” is a commonly uttered one, but that had never been how I experienced labor.  Yes, it is a ton of work.  Yes, the hardest work I’ve ever done.  But there is also a feeling of energy.  Someone else’s energy.  The energy of the person inside you who is also working very hard to leave your body and start life on the outside.  I did not feel that.  I felt mostly my energy.  Pushing, encouraging, focusing, so he could be with us.  When the time came to push, I felt like I was tearing myself into pieces to get him out.  I couldn’t help but feel that if I didn’t keep pushing so hard, so intensely, my labor would stop altogether and the vision of holding my baby would fade away.

I remember after he was born, the midwives and I were peering into his little face pondering his resemblance to the family.  I felt a strange pang of discomfort.  I wondered if he would be unattractive.  I chastised myself for being so shallow and put the feeling away, hoping it wouldn’t return.  Now I think that was the first time I saw a flicker of his features.  There was something in his eyes and forehead that made me uncomfortable, and I spent hours staring at it.

So for a while things went along.  Friends and family visited, congratulated us, adored him, held him.  Most commented on what a “good baby” he was, and that he was so different from his sisters.

He was unbelievably sleepy.  At first, I thought this was fabulous.  I finally had hit the sleeping baby jackpot.  I quickly realized that this baby would sleep to the exclusion of all else.  I commented to Latke that if I never woke him up to feed him, he would fade away.  He didn’t gain as quickly as Mouse and Chipmunk had.  His jaundice lasted longer.  Despite all this, he was all in the range of normal.  But it did not feel normal.

Then I saw it.

During one of his rare awake times, I looked into his face, and I saw it.  I saw the faces of children I had seen at the grocery store, walking along the street, on pamphlets at the doctor’s office on disability.  He had the face of a baby with Down Syndrome.

That night I stared at pictures of hundreds of babies with Down Syndrome.  The fact that our children are of half Asian ancestry didn’t help make anything clearer.  I looked up “half Asian Down Syndrome”.  Nothing helpful.  I learned that Down Syndrome came with a set of physical markers.  Low set ears, a single horizontal crease on the hands, different feet, different eyes, the list went on.  In the pitch black of our bedroom, I used the light from my phone to stare at his hands, his ears, trying to figure out if he had the markers for Down Syndrome.  What the hell did “low set ears” mean?  All babies have flattened nose bridges.  If I smooshed his hand one way, it looked like he had the crease.  Smoosh it another way, and the lines on his hand looked like mine.

But the vision of his face kept haunting me.  My baby looked like a kid with Down Syndrome.

The next morning at breakfast, I said something to Latke.  I watched my husband closely.  That moment was a handful of marbles on the scale.  Someone else saw it too.  He made sure to immediately minimize it, but when pressed, he admitted, he saw it too.

That was when the strange tapping noise got much, much louder.  I couldn’t let it go.  Every spare minute I had, I was staring at pictures, trying to rationalize to myself how my baby looked different from those babies.  It just made so little sense.  My baby just could not have Down Syndrome.  I’m 31.  I’m healthy.  Our girls are healthy.  Not in the plan.

I started to read online forums, and blogs of parents who had children with Down Syndrome.  Each message I read gave me a knot in my stomach.  Even though he had no discernible heart problem, or any other major health issue for that matter, the picture they created in their descriptions sounded exactly like LP.  Harder time nursing, slow weight gain, dry skin, sleepy, smaller airways, large soft spot, the list went on.

The next morning seemed better.  Obviously I’d worked myself up over nothing.  My baby was fine.  But by afternoon, the mental tapping got louder.  I couldn’t take it.  I called our midwife, Judy.  I tried to explain my feeling and ended up breaking down in tears, blubbering on the phone.  I couldn’t understand what was happening to me, why was I thinking such a crazy thing? But even then, I felt the panic of someone watching a storm on the horizon, with no place to hide.

She came over, looked at LP, we talked about Down Syndrome.  I bawled.  She said she was unsure.  I held my baby and cried.  And cried.  Then our midwife held LP.  Then I cried some more.  Then Judy started asking me, What would you feel if he does have Down Syndrome?  How would you feel?  What would it mean to you?  That was another handful of marbles.  She was preparing me to deal with the possibility of my child having Down Syndrome.  I knew then that she thought it was likely as well.

The night after Judy visited, I went back and read LP’s birth story.  Truth be told, I wrote it in 10 minutes on my phone.  Just figured I had to write something so he couldn’t accuse me of neglecting him as the third child.  This was the first paragraph:

I think the significance of the fact that you were born in caul shouldn’t be lost when I write about your birth.  In fact, I wonder if you’re destined to float in life with a different attitude and perspective than those around you. We will have to see.

I had found the tapping noise.  All those marbles gathered their weight and tipped the scale; I saw what had been there the entire time.  It was my baby.  He was telling me that he had Down Syndrome.

Now, with hindsight, I can’t believe no one saw it.  He doesn’t have all the markers.  No extra skin on the back of his neck.  His ears aren’t particularly low set.  He only has the palmar crease on one hand.  His muscle tone is actually pretty decent, but uneven.  Even still, when I look into his face, it is there.

I’m writing this now with those days behind me.  I cried so much that my cheeks got chapped.  Every time I thought about it, I cried.  I cried every time I saw another baby, thinking of what my baby might never have the chance to be.  I played imaginary conversations in my head, trying to tell our friends and family.  I imagined their pained faces, consoling me, perhaps saying the wrong thing, or uttering some sort of empty platitude, and I cried again.  It wasn’t that I thought anyone close to us would do the wrong thing, but the fear of those potential pains gripped me.  I could not bear the idea of a future of awkward moments, small and large slights, disappointments.  Then the guilt over being upset at all was overwhelming.  Even while I couldn’t stop crying, I wondered if LP could somehow sense my grief and would feel unloved.

But what is the point of living in fear of possibilities?  I’d been spending so much time thinking about different, imaginary futures that I stopped living in my own, current, reality.  Latke and I laughed the other day while we reminisced about our college days.  If someone had told us then that we would get married, buy a house in East Oakland, I would be a stay-at-home mom, and we would have three kids, one with Down Syndrome, what would have happened?  Nothing.  Because it wasn’t our reality.  We spent our time then falling in love, oblivious to the fact that the love we created would ferry us through the trials of later life.  So now, would it make any difference if I could know the future?  Could I somehow carefully thread my way through life avoiding life’s potential pains?  Obviously not, and it doesn’t matter.back wrap LP

I am where I am.  I can’t choose all of the events in my life, but I can choose my perceptions and experience.  I have to choose my happiness.  The choice is actually not very difficult; I don’t have much to be unhappy about.  I have three beautiful children.  An amazing husband.  Wonderful family and friends.  I have a kid with an extra chromosome.  I know, as a mother, I must choose happiness for him.

18 Comments on “Tap, tap, tap.”

  1. You write a hell of a story
    LP got himself a pretty wonderful family. He’s a very lucky young man.
    Also- I love the family nicknames- I’ve given all my nicknames to myself. Want to hook a brotha up? I like your style.

    • ji says:

      I might have used up all my creativity on those names. I’ll think about it though. Something about a fox, avocado… conservative news outlet salad? See? No good. Love you guys. :-) xo

  2. Lisa says:

    Your words bring back so many memories of my own experience – even the way you so eloquently describe the energy of giving birth. And seeing it in his face before anyone else ever said anything to me about Down syndrome – that was my experience, too. I still remember seeing it in his face and feeling this heavy, panicky rock settle in my stomach. I look back on it now, though, and feel so grateful that Finn told me himself that he has Down syndrome, in his own way.

    You’re a beautiful writer. Keep it up – it will serve you well on this path. I feel honored to witness it.

  3. Melissa says:

    This is really lovely. Thank you for sharing your experience. Looking forward to hearing more!

    Just be gentle with yourself as time goes on. Lots of emotions on this ride with Down syndrome, but there is a huge, wonderful network of families out there to be a listening ear should you need it.

  4. Amy says:

    Beautifully written. Milo was revealing himself to me the entire pregnancy, but I was too afraid to acknowledge my feelings. This brings back so many memories. Thank you for sharing.

  5. ji says:

    Thanks to all of you. Motherhood teaches us some amazing lessons, right?

  6. Leah says:

    Beautiful. I can relate to so much of it, as my own girlie was also born at home with a surprise Ds diagnosis. Since she is my only I can’t really compare birth experiences, but hers was very different from what most of my friends have described. I never felt like pushing and it took 6 hours to push her out. I knew the second I laid eyes on her. I have a friend who also had a home birth and whose son wasn’t diagnosed until about 8 months old. In hindsight they felt that his half Asian ancestry made his other features less recognizable. Thank you for sharing. Your son is gorgeous.

  7. Kim says:

    I saw this posted by a friend of FB. He’s beautiful. Our son who has Down Syndrome is now 7. We found out when he was 2 months old. I just had to comment, after reading your story and re-living so much of those early days, the devastation over who-knows-what, the accepting. The loving and the choosing of happiness. Now when I contemplate him–because I still look at him sometimes and think “I have a kid with Down Syndrome! How crazy is that?”–I think to myself Thank God, Thank God, Thank God. What would we do without him. It is an amazing thing. Hard, but really good. Congratulations.

  8. Diane says:

    You are a beautiful writer. I sometimes wish I could put my thoughts into more eloquent sentences. It’s amazing how each story is different, but all so relatable. I am looking forward to following your journey!

  9. ajummama says:

    got chills. you told the story so well that when the post came to an end, i was bummed. the “tap-tap” still gives me chills. just curious – since you birthed all three at home, did you opt not to do the screenings? my neighbor said her screening revealed that she had 1 in 11 chance that her baby would have Downs. he is blessed to have her as a mama as her job was to train Special Ed teachers and had planned to adopt a Downs baby eventually. thank you for sharing your raw emotions. i’m sure it was a big surrise. blown away. he is a blessing.

    • ajummama says:

      surprise. typing carelessly with a Band-Aid on to boot.

    • jisun says:

      Thanks. :) I’ve been thinking about writing a follow up to this post every few months because I find that my thinking keeps changing.

      No we never had screenings and we always told ourselves we didn’t want them. I’d always been skeptical about screenings and we had made the decision that we wouldn’t have an abortion at 20 weeks, so the quad screen seemed moot. But I know lots of people do the screenings and the reasons are complicated, this was just what we did.

      • Every parenting couple should have the privacy and information and support to make this awesome decision for themselves. Additionally, that decision should be supported whatever it is. Faced with this unwanted and unwelcome aspect of parenting, we must soul-search and make our own decision, when there are decisions to make. And no one who decides that bringing this fetus to life is not the best decision FOR THEM should not have to hide their choice from shame and judgment. It’s not for everyone. It’s tough and sad. There have been many times I felt a terrible sense of responsibility for bringing my now-26 year old child to a life with limitations and closed doors and prejudice. Many times I thought that I had brought him into a world that was, for him, unnavigable and sad. There were of course many other times and feelings – but there have been returns to the sad place throughout the past quarter-century.

        Now the battle is economic and political; having worked with goals of inclusion, access, and a full life in the community with supports, I’ve raised a son who wants these things but may be forced into a group home because of budget cuts. I’m an older mom, still parenting on a day-to-day basis, still believing in my child and working for his best life possible. It is a long road.

  10. Katie Bock says:

    I just read your post on Freshly Pressed and it led me here, to reading your blog. I am so happy to find a writer on WP with your beautiful and thoughtful mind.

    I’m also glad children and parents with DS have an advocate like you.

  11. Galit says:

    Hey, you got picked up on DSDN! Congratulations! (btw, we need a new post with baby pics!)

  12. […] Little Pirate is 2 years old.  He’s added some surprises to our lives.  Surprise pregnancy.  Surprise Down Syndrome.  Currently, he’s devoting himself fully to being a toddler.  And, if it weren’t enough to […]

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