The day my son was born with Down Syndrome

The day my son was born with Down Syndrome


My son was born 5 weeks early.  He came out fast.

My now ex-husband said "he looks different.... he has those eyes.  What's that called?"

I said "No, he has eyes like my family. He has almond shaped eyes.  He's so perfect and tiny".  He weighed a mere 5lbs.5 oz.  He was so small his ears were almost see through.  He was beautiful.

But he insisted.  I should have known something was different, I already had two children.  When my son was born, all the nurses and doctors looked at each other after making sure he was breathing and left the room together quickly.

My mom came in and held my son.  She was so happy to have her first grandson.

I said "He thinks he has that condition.... I don't know what it's called"

My mom didn't flinch.  She was staring at my Kiniw with such joy and said "down syndrome.  Yes, he does.  He's so cute."

What?

What?

What did that even mean?

What's wrong with my son?

Is he ok?

What?

Tears filled my eyes.  I didn't understand what was happening.  I was scared, no, petrified. I took him back in my arms to really look at him but the nurses and doctor came back in and insisted they take him to the intensive care unit.  I wanted my baby.  But they knew.  They knew I knew.  And they had to take care of him.

So I laid there still bleeding, waiting for my stitches.  My baby was gone and I had no answers.  My ex-husband was in shock and my mother was standing there calmly.

I asked the nurses if my son had Down Syndrome.  They couldn't tell me. They said, "I'm sorry, you have to wait for the test to come back.  It can take up to two weeks".  They were gentle with me. 

Finally, after what felt like hours, they let me and my ex-husband go to the intensive care unit to see Kiniw.  The doctor was there with a nurse, and they told me all the health issues my son was facing.  He had holes in his heart, low white blood cells, sugar issues, breathing issues and then I fainted in my wheelchair and woke up back in the delivery room.

They assured me he'd be ok but he would have to stay in the intensive care unit until he could breath and on his own.  I was allowed to see him every three hours to try and breastfeed and pump.  I would go in and touch his tiny body through the incubator.  They put me in the room closest to him because I couldn't stop crying.

Everyday, at almost every visit I would ask the nurses, 'does my son have Down Syndrome?'  And they would give me the scripted answer.  "I'm sorry, we can't say until we know for sure". On day three, I asked again.  "Does my son have Down Syndrome?".  She said "I can't say", but then nodded yes.  She looked at me with so much empathy.  I cried, touching my baby through the incubator.    She opened the incubator and handed me my son and said "you can have fifteen minutes".  Tears streamed.

Every three hours the nurses would come get me.  3am, 6am, 9am,12pm, 3pm, 6pm, 9pm, 12am.  Eight days.  The now ex-husband stepped foot in the intensive care two times in total.  I felt so alone.

The test came back within 4-5-five days.  They sent a counsellor to come and talk with me.  They sent a social worker to come and talk to me.  They gave me reading material to deal with the shock.  It was all standard procedure they told me. Nothing stopped the tears.  Nothing dulled the fear.

On day seven, I wasn't crying as much.  The nurse who felt like my only support system came over and said "My shift is ending, and I might not see you when I come back.  I just want to tell you that we see mothers in here who struggle to love their babies born with Down Syndrome at the beginning all the time, and it is very normal.  And they love them very very much once they accept it.  I've never seen someone love and show up for their baby as much as you".  I don't know if she meant that.  Or if she knew I needed to hear that.  But what she said played on repeat in my mind for months, because I felt so seen and so supported by this stranger whose name I don't even remember.  She gave me first glimpse of hope. She hugged me while I sobbed and then she left.  I wish I could tell her thank you.

They gave me so many articles about Down Syndrome, about their shorter life span, about their higher risk of diabetes, their higher risk of cancer, their higher risk of everything really.  None of that helped.  But there was this one essay called "Welcome To Holland", written in 1987 by American author and social activist Emily Perl Kingsley, about having a child with a disability. Boy I wish I could be there for every parent who has a baby born with Down Syndrome, to tell them that this gift they are being given is nothing to be scared of and that it's all going to be ok.  It's going to be better than ok.  This human with an extra chromosome will come in and break your heart wide open and fill it with such innocent and never-ending love.  This human will make you laugh.  And all your worries about 'will they ever read?  will they succeed?  will they speak properly? who will take care of them?', will slowly become background noise.  Because soon enough they are just like any other one of your kids.  And maybe they can't tie their shoe laces like my now 14 year old can't, or maybe they don't communicate like others do, but you'll find ways to understand each other, and your language will become the VIP language that only people who make the time to learn it, obtain the privilege.   

And so I write this, with the hopes of maybe helping one mom laying in a hospital bed or just given birth to baby with Down Syndrome who is crying uncontrollably  and feeling alone.  I'm sending all my love to you, I know right now it's unbelievably hard and you're thinking thoughts that are making you feel guilty and terrible.  But know this, you have just begun your journey into loving yourself and growing your capacity to love others unconditionally more than ever before.  It's a beautiful ride once these tears dry.

I know it doesn't feel like it now, but you will all be alright.

Love,

Kiniw’s Mom (and his three sisters) 

 Years later Kiniw as also diagnosed with Cerebral Palsy, but that's a story for another day.  I'd love to hear and share your stories of motherhood.

 

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