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2003 Journal Links

Oct 26th - Archie is born
Oct 31st - Today, Archie is five days old
Nov 1st - We called the NICU at 3 a.m.
Nov 3rd - Archie's billirubin is down
Nov 4th - Today was Archie's due date
Nov 6th - Yesterday was the most trying day of our lives
Nov 9th - I think we knew that something
Nov 11th - Good day, bad day
Nov 13th - Archie looked great this morning
Nov 16th - If prayers were audible...
Nov 18th - I got to hold my son today
Nov 19th - John is back working again
Nov 20th - Archie slept all day
Nov 22th - I think I know what it’s like to be deaf
Nov 24th - Archie decided to stop fighting the ventilator
Nov 27th - Thanksgiving At the NICU
Nov 28th - John held Archie tonight
Nov 30th - If Archie doesn’t like something, he let’s you know
Dec 3rd - Archie will go for his first plane ride
Dec 5th - Tomorrow Archie will travel to Charleston, to the city where his father was born
Dec 8th - We got up extra early
Dec 10th - Although I spent the entire day at the hospital...
Dec 14th - The doctors attempted to extubate Archie twice
Dec 15th - We’re going to buff ‘em and shine ‘em up
Dec 17th - Santa Claus introduced himself to Archie today
Dec 18th - Archie is doing well
Dec 19th - Archie is continues to do well
Dec 23rd - It is Tuesday morning
Dec 26th - “Are you sure you’re Archie Moore?”

2004 Journal Entries

Jan 4th - John is holding Archie and feeding him his bottle
Jan 11th - We dressed him in a light blue sleeper
Jan 14th - Oh, how I've missed Days of Our Lives
Jan 18th - Patient & Family Satisfaction Improvement Survey
Jan 20th - Archie discovered his hands last weekend
Jan 15th - Babies like this
Jan 29th - Archie Moore is a flirt
Feb 11th - I'm watching Archie study his fist
Feb 23rd - Guess who gained eleven ounces his first week off Portagen?
Mar 2nd - My throat began feeling raw yesterday afternoon
Mar 10th - Tummy Time
Mar 15th - I hate those machines!
Mar 31st - Archie was not interested in his early intervention therapies today
Apr 13th - Well-baby check-up
Apr 21st - Today Archie's world got a little bit bigger
May 7th - It's difficult to write
May 30th - I took Archie to the CDS yesterday
Jun 20th - I know I don't update my journal as frequently as I once did
Jun 29th - We Achie to Budka's
Aug 26th - Archie fights sleep with a fierce tenacity
Sep 12th - Yeah, I know. I need to post more
Oct 26th - Today you are one

 

We took Archie to Budka's
by Anne Moore
06/29/2004

On Saturday morning John and I took Archie to Budka's, a bagel shop we visited nearly every weekend before Archie was born. Now that Archie's pulmonary hypertension is gone, now that he's off oxygen for good, John and I feel as if it's appropriate to venture back into the world again, back into our old habits, with baby in tow. We are liberated now from our fear of germs, at least until the weather turns cold again and we are forced back into hiding for one winter more. Liberated from one fear, but captivated now from another.

I love Archie unconditionally. When I look at my son, I see a sweet and precious boy whose smile sets firecrackers off in my heart. When I look at my son, I feel my chest well with pride. To me, Archie is an angel corporeal. Being a part of Archie's life has changed me, changed his family. An infant who couldn't talk, or move, or breath without a machine's help taught those people who care for him a handful of enduring truths. To me, each of Archie's accomplishments, however small, are cause for celebration. So when I look at my son, I see an exceptional and determined boy worthy of adulation. But I know that when other people look at my son, they probably see Down syndrome before they see anything else.

I don't blame anyone for that. Down syndrome is just a label, really, an explanation of why someone may look a little different, or act a little different than other people do. Labels help us make sense of our world. But what I don't want to happen is for people to pre-judge Archie based on that label. I know of course that some people will, but I know, too, that many people won't, and that several people already haven't. What I worried about Saturday morning as I carried Archie into the bagel shop, what I've worried about since John and I found out that Archie has Down syndrome, is how I would react if anyone made an insensitive remark regarding Archie's extra twenty-first chromosome.

In my head, I've been having conversations with ignorant people unkind enough to comment negatively about Archie's Down syndrome for about a year now. I've imagined countless encounters with faceless buffoons. I like to imagine I'll keep my cool and handle the situation with grace, but I know myself, and my temper, well enough to predict that I won't. I imagine those encounters, too, and watch myself on the stage of the theater of my mind as I lash out at these people who will be foolish enough to insult my child, my little piece of heaven.

At the bagel shop, though, no one raised an eyebrow at Archie. A couple with a baby in a car seat carrier sat in a corner booth and smiled at me as I sat down with my son. I could feel them looking at us, Archie and me, as John paid for our order at the front of the store. "They're comparing their baby to Archie," I thought. My thoughts raced around inside my head. I started to hate this couple and their baby, too.

John and I ate our bagels and drank our coffee. Archie sat in his carrier on the table top, hands upon his knees, looking around the shop. We talked to Archie and Archie answered us. The father from the table in the corner got up to empty his tray in the garbage can next to John's seat.

"How old is he?" the father asked, smiling.

I smiled back. "Eight months." I forced myself not to add, "But his adjusted age is six months. See, he had heart surgery, and leukemia, and bunch of other things so although he's been around for eight months it really isn't fair, I think, to say he's that old because he never really started to live until late December." I've offered this explanation to complete strangers once or twice, but John told me I had to stop because doing so just served to freak people out.

The father remarked, "He's big!"

Bless him.

When the father touched Archie's arm and said hello, Archie smiled in return. The mother and the baby came over to our table then, too.

"How old is your son?" I asked.

"Four months," the mother answered. She turned her attention to Archie then, telling him how cute he is.

When she finished, the mother and I talked about baby socks and the tricks our boys can do with their tongues. We talked about car seats, too, and how neither boy really liked sitting in one. Before they left, I wished the mother and father a good day and they wished us the same.

Saturday night John remarked to me, out of the blue, "That mother was really sizing Archie up."

I thought awhile before I responded. "Yeah, but she never said anything."

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