Details to Follow....

Woody One Boot

Today we are at the Buddy Walk, so I'm setting up this post of Sean playing with his buddy to run today.

"Momma! Momma! CHEESE!"


"AHHGGGH! Oh no, where's Woody's foot?"


"Look down here, Woody."


"Oh, here it is!"


Hours and hours and hours of fun.

This is actually Woody the Second. The first Woody doll was given to Aidan when he was 2 1/2 and had his tonsils & adenoids removed. He loved that doll like crazy, took him everywhere and played with him every day. I gleefully remember taking Aidan to the post office one day and he told the post man in his sweet-little-boy-voice, "I have a big Woody!"

Eventually, Sean took over Woody I and played hard with him. Woody lost a hand. Woody took way too many swims in the potty. Woody got coated in mud. Paint was worn off of his face. He had teeth marks on limbs, his nose. Then one day Sean did a little diaper digging with Woody and mom had enough of that. Woody I was buried in the dumpster.

Nana gifted Sean with Woody II for his birthday and Sean's face lite up with joy. Mind you, his birthday was Sept 4, so we haven't had this new doll long. Already he has had his foot amputated and has had a mud bath or two. He's been dubbed "Woody One Boot."

He sure makes a little boy a great buddy.

On Being a Big Brother

Since Ella's birth, we often get asked "How do the boys like having a little sister?" "How is Sean liking the baby?"

Sean has always been a gentle little boy. He never needed to be taught to be gentle with our cats, it just came naturally to him. They are leery of most kids, but really love on Sean. They snuggle up to him for petting, they even let him lay his head on them to use as a pillow. Amazing!

So along comes baby. We had been telling him for months that baby Ella was in mommy's tummy & he'd pat my belly, give it kisses or raspberries. When she was born, he continued to be very tender and gentle to her. When he wakes up in the morning he pitter pats into my room and snuggles with mommy and Ella every morning. When he sees someone holding her, he holds his arms out and says "Me? ME?" Meaning, he wants to hold her. He gives her the sweetest little kisses on her head or cheeks. He hasn't been jealous of her at all.

A couple of days ago, I was standing by the dryer pulling clothes out & folding them. Ella was laying on the couch, just chilling. Sean was alternating between helping me and saying "Hi Baby!" to Ella. She started to fuss a bit, so I said "Let's sing Twinkle, Twinkle Little Star to her." I started singing & reached in the dryer again. Sean had walked over to her, I thought he was showing her how to make the signs with the song. Suddenly I heard her cry out & I turned around. Sean had her in his arms (barely) and then he tipped over on his butt, she landed on top of him. I think she bumped her head on his mouth, because he had his hand covering it. I scooped her up and settled her down & reminded Sean that only Mommy and Daddy pick up baby. He was very startled by the whole thing and visibly upset that he had hurt her. I told him she was okay. Phew! Hopefully she grows faster and sturdier than he grows strong enough to carry her.

Speaking of growing, that reminds me of a conversation I had with Doug. He was looking at Ella's long fingers and said to her, "Are you going to be a tall like Daddy or short like Mom?" I said, "I just hope she isn't too much taller than Sean. I think he'd prefer that she remains his little sister." Doug thought that it was unlikely that Sean would be taller than Ella. We both hope that the tall male genes in our families help Sean defy the vertically challenged trait of Down syndrome. Not that it really matters, I suppose. I guess we are just used to tall men in our family. Doug is 6'4", his brother is 6'10", his dad is 6'4" also I think. On my side, the men are 6' or slightly over.

I wonder how tall the tallest man with Down syndrome is?

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.

Welcome to October, Down Syndrome Awareness Month!

Today begins the 31 for 21 Challenge so I thought I'd give my blog a fresh new look. Hopefully the blue is easier on your eyes than the pink and green, because I want you to stop in and read often! I also hope to see more comments and open dialog with my readers.

I decided the best way to start the month is to start with the basics. After the nomination of Sarah Palin, the National Down Syndrome Congress and the National Down Syndrome Society put together this press release to encourage accurate information in the media regarding Palin's son with Down syndrome. I thought they did a great job of keeping the info brief, yet touched on significant aspects and common misconceptions.

If you have a question about Down syndrome in general, Sean in particular, or parenting a child with Down syndrome; I invite you to leave a question in the comments so that I can respond on my blog. I have the comments set up to take anonymous comments, so if you are too shy to ask you can leave a question without outing yourself.

I have a tendency to forget sometimes that everyone that knows me doesn't necessary know as much about Down syndrome as I do. It's amazing how much your world changes when you are exposed to something new! When Sean was born, I knew very little about Down syndrome so I had no frame of reference to help me understand his diagnosis. I'm happy that I have been able to do as much as I can in spreading awareness in the past 4 years, but I still realize that everyday a new family is getting the diagnosis of Down syndrome and they do not know anything or anyone who has had this experience. So let's do our best this month to reach new people! You never know who is going to need to know next.

Who Da Man?

Doug's da man! This weekend marked the completion of his deck re-haul project! Yay! We now have a completely finished, sturdy, beautiful Trex deck lovingly built by Doug. This was such a huge undertaking, I am so impressed with what he accomplished. Of course, he will nit pick and tell you about the flaws he sees in his work, but I think it's fantastic.

Here's the before:



And now the after:



The boys hauling out the scraps to go to the dump.




Of course, no sooner then he had it finished something happened to it. Aidan sat underneath the table on the deck and WROTE on the floor with an ink pen! Yes, Aidan, not Sean. Doug was so stunned when he saw him that he froze. He looked like he was going to throw up, or possibly throw Aidan. I ushered Aidan inside and asked him why in the world he did that. He said "I dunno." I sighed and realized this was payback for shit I pulled as a child (I got busted twice for writing on walls at other people's property.) I told Aidan that sometimes our brains just don't get turned on and we do naughty things we shouldn't. I sat him down with a pad of writing paper and had him write, "I'm sorry Dad" several times. I Goggled "removing ink pen" and found how to get it off the deck. Doug was able to get it off, but it left a faded area. I hope it serves as a life lesson and reminder to Aidan.

One More Photo....

My handsome boys on their way to school today.