Thursday, October 2, 2008

Our beginning....

"HE'S NOT BREATHING! He's not breathing!"

I opened the shower and saw my husband, Doug, holding our three-week-old son Sean, who was covered in mucus and milk and turning purple. I jumped out of the shower and began wiping off his face. I had Doug get the nasal aspirator and I used it to suction Sean's mouth and tiny nose. After a minute, he was gasping and crying. I held him close and tried to calm him down. He was breathing, but it was very ragged.

I got dressed and we took him straight to the doctor's office. The receptionist sent us in immediately. The nurse asked me to undress him and when I did, we saw that his hands and feet were purple, his body was mottled and his stomach was very distended. She rushed to get the doctor. He looked briefly at Sean, then picked him up and said, "We are taking him to the Emergency Room."

Ten minutes after we arrived at the hospital, I received the surprise of my life. The ER doctor said, "Has anyone mentioned to you that Sean has physical traits of Down syndrome?" I was stunned. The room spun. I started crying and said, "Down syndrome? What are you talking about? NO! He doesn't have Down syndrome, he just spit up really bad."

The above paragraphs are an excerpt from our essay, Nourishment, in the book
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.

That is the edited version of what happened on September 29, 2004. What happened in the middle is that our family doctor took Sean to our local ER and examined him and admitted him for observation/oxygen monitoring. By the afternoon, our doctor suggested that we need to life-flight Sean to the nearest Children's Hospital (in Denver) so that they could run testing there to determine why Sean aspirated. It wasn't until we arrived in Denver that a doctor diagnosed Sean with Down syndrome. That flight was an important turning point in my relationship with Sean and I was disappointed that it was edited from my original essay.

See, we didn't know much about Sean prenatally. We had declined any testing and only had two sonograms (one at 8 weeks to determine my due date and one at 18 weeks to check for abnormalities.) We didn't know if we were expecting a boy or a girl, although my heart told me it was a boy from the beginning. This was to be our last baby, the one that made us a family of four. I selfishly hoped for a girl, to make the 'perfect' family.

When he was born, I admit that I was disappointed not to have a daughter. I had a hard time bonding with him. How could I love another boy? Aidan was so wonderful and filled my heart so full. I didn't see how I could love another son as much as Aidan. I remember feeling like I was just going through the motions of mothering my new son. Nursing him, diapering him, bathing him, sharing him with family and friends. I bought craft supplies to make his birth announcements, but only made one before our emergency trip.

But that day, on that flight, it all changed. I saw my little son laying in an incubator, attached to monitors and oxygen. I panicked when his oxygen stats dropped to 70% because they had told me it needed to stay above 85. I held his tiny arm band from our hospital between my fingers and rubbed my thumb across his name. And I prayed. I prayed and wept. I begged God to make him better, let him live and forgive me for not embracing this beautiful gift sooner. I was so afraid of losing him. So afraid that he would die without feeling love from his mother. I told God that I would never take his gift for granted again and would do my best to give Sean all the love he deserved.

What I learned on that flight, is that love does not need to be divided, it truly does multiply.

In the following months, as we adjusted to the diagnosis, we learned so much about Down syndrome and thanked God that Sean was born so healthy. Sure he has Down syndrome, yes he has a small heart defect, turns out he aspirated due to reflux, yes it was a struggle to breastfed him, but eventually it worked and paid off greatly. Watching Sean grow and take on new challenges, challenges that seem so simple for others, has continued to remind us to be grateful. Grateful for every minute we share with him and every inchstone he makes. He is our blessing and one of the greatest gifts we know.


RK said...

I actually just read your story in Gifts this weekend, I didn't realize how many people in there I "know."

Amazing post. And what a great pic of Sean...that smile!

JennyH said...

CUTE baby pictures! I have read your story in Gifts before. It is so scary to see your liile baby like that!

Melissa @ Banana Migraine said...

What a scary time! Wow!! Those are beautiful pictures - he's an amazing little guy.

My name is Sarah said...

Oh Deborah, Thank you for finding Sarah's blog. This is her mom Joyce. Your story is so touching, and beautifully written. I have never read the book Gifts, I must soon. Our precious Sarah also was rushed to the hospital after I found her in her crib not breathing, so I know that feeling of helplessness, and at the same time the tremendous bond that develops. Your little guy is so adorable. I know Sarah will look forward to seeing more photos.

SunflowerMom said...

RK- yes, the Gifts book is full of bloggers and DownSyn moms! I had such a wonderful time meeting several of the contributors in KC at the NDSC conference. I told DOug that it made me feel like a rock star!

Joyce- thank you for reading and posting! I am loving Sarah's blog, I have a feeling she's about to become very "famous" this month! She was born the same month I graduated from high school.

Aloha! said...

Wow, that is just incredible. I can not imagine the panic and feelings of helplessness you guys muat have felt when he was so sick and being life-flighted. I am so happy this story has a happy ending though! Sean is a cutie!

Hector and Jennifer Varanini Sanchez said...

What a beautiful baby boy and bigger boy now!! I loved the book Gifts and remember your story and how powerful it was, nice to hear more details about it. Gifts was so important in my acceptance of our diagnosis at 3 months old!!!