Friday, November 14, 2008

My funny girl

Dakotah loves it when I tell her things about when she was little. I was telling her some yesterday, and we had a good laugh.

Dakotah, age 2, in her car seat on the way to the store: "Man, I gotta shave these legs."
Dakotah, age 5, writing a story for school (Catholic school, btw) about what she did that summer, "Hey, Mom, how do you spell lesbian?"
Me: "What?!"
Dakotah: "How do you spell lesbian?"
Me: "Why do you need to spell that?"
Dakotah: "Because I'm writing about when I visited my family in Lesbian, NH"
Me: "OOOOhhhhh, you mean LISBON, NH!"
Dakotah, age 3, as I'm getting ready to go to a baby shower, "You look pretty, Mom, just like MiMi on the Drew Carey show."
Dakotah, age 4, after discovering she had eaten all the heads off the animal crackers in her box, "I was saving the bodies for later."
Dakotah, age 2, attending Mass, "Hey, who's that guy up there on the letter T?"

Friday, November 07, 2008

Paige always wows her audience!

Yesterday we had a follow up appointment at CHEO - Paige now had a big bar between the legs of her cast for stability. Now, I have to come up with some creative ways to get pants on her!

Anyway, in the afternoon, Wayne's mom came to visit us. She is in her mid-70's. She was so excited when Dakotah was born - the baby girl she never had. She doted on her, and spoiled her and was so proud of her she about burst at the seams.

When Paige came along, there was a bit of adjustment that she needed to do. She was older, had never really known anyone with Down syndrome, and came from a time when families didn't really talk about such things.

She never loved her less, or fussed over her less than she did Dakotah, but there has always been an air of ...sadness, I guess. A little tug of pity in her heart when she thinks about Paige, and mulls over what she thinks "could have been."

And, I'm sure she has had a hard time with lots of her relatives - trying to figure out what to say and how to approach the fact that her granddaughter has T21. To be honest, she isn't very well educated on it, and still probably holds out many myths and theories about why Paige has T21.

When she got here yesterday afternoon, I was sitting on the floor with Paige, working on her alphabet, some letters, and a few words.

You could have blown Wayne's mother over with a feather. Time and time again, Paige identified letters and words, put the right letter combinations together to form words, and answered most of the questions I asked her successfully. Not too shabby considering Paige's spoken vocabulary is probably less than 10 words.

She beamed with such pride at Paige, and fawned over her, telling her over and over again how smart she was.

I'm pretty sure she doesn't know that most children with T21 read. In fact, I'm pretty sure she left our house thinking Paige was the ONLY child EVER with T21 to read, lol - you know, because it IS her granddaughter after all.

It was a very cute, funny moment to see -

Tuesday, November 04, 2008

Most People Can't Tell

So, I made a major blunder today.

While waiting in line at the Post Office to pick up a package, I see a totally adorable tiny little boy with bright red hair, and big blues eyes who has Down syndrome. He is a sweet as can be, and is waving at people over his Mom's shoulder. My heart melted like butter!

After I picked up my package I went into the lobby of the Post Office, and there he was - sitting on the table while his mom was writing a note. I went over to her, and said, "I have to tell you how very gorgeous your son is - he is just adorable." She looked up and smiled and said "Thank you."

Then, I said, "I have a daughter with Down syndrome too." Her whole faced changed, and she says, "Most people can't tell he has Down syndrome."

So, what does one say to that? I floundered through, and just told her he had caught my eye because he was so cute and so sweet the way he waved at everyone. He was adorable, perfect, sweet...and he had Down syndrome - all very positive and happy qualities to me.

I asked his name, and spoke to him, he was very lively and very interested in catching my attention. Then she asked my daughter's name and when I told her, she relaxed a bit - she recognized me from the Parent Pak she got when her son was born.

We chatted a bit about his birth; he spent a bit of time in the hospital with duodenal atresia (I told her Paige had esophageal atresia, and she replied "oh, they all do." - strange...)

The timing of meeting this little boy was perfect for my blog post today, as I have been composing a post inspired by one of the moms on one of the Trisomy boards I visited, where she asked for "bits of advice" from parents of older children with T21.

I will write more on these nuggets, but here is one suggestion from an "old pro," lol.

Its so important to take away the "stigma" of Down syndrome, if you will. There is absolutely nothing wrong with your child looking like he or she has T21, and the truth is, if he or she does have it, most people will recognize some of the physical traits on your little one. These traits are no more important than hair color or eye color or any other physical feature your child may have.

My advice, for what it's worth, is to make talking about Down syndrome as easy as talking about what's for dinner - that means talking to other siblings about it, bringing it up appropriately in conversation, getting your child with T21 used to the term Down syndrome, etc. No sibling is too young to understand - Dakotah was just 3 when I was prenatally diagnosed - and we played the "same & different" game with her - she had the same color eyes as her dad, but different than me, the same hair as me, but different than dad, the baby had Down syndrome, she did not.

People will approach you and ask, and you may feel offended or caught off guard, but having had a child with Ds for 11 years, I can tell you that 99% of the interaction I have had from strangers has been very positive - lots of people have shared stories about people they know with T21 with me, many, many people have stopped me just to admire Paige.

There is nothing wrong with having Down syndrome, and trying to tuck it away makes it taboo - and it shouldn't be.

And if my advice doesn't matter, learn from Dave Hingsburger, who says, "If your child has Down syndrome, you better tell them and their siblings - or someone else will."

Sunday, November 02, 2008

We are home!

Paige had her surgery on Tuesday. It went smoothly, although it took a bit longer than the last one - she was in the OR for nearly 8 hours. Last time, we had a really, really hard time with pain control after the operation - they just could not get ahead of it, and she was really out of her mind with it those first 8-10 hours afterward. I was very worried about that.

This time, the anesthesiologist did an epidural before they even began the surgery and what a HUGE difference it made. She woke up comfortable, and not so frightened. We were able to go into a regular room and it was just so much less panic.

Her surgeon is amazing, and I'm very grateful to him, but I gotta say - those anesthesiologists rank right up there - they are the ones who hand out all the good drugs, lol. I was also able to have a good chat with the head of the anethesiology department the next day - and told her how different the experience was this time, so maybe they will keep that in mind if any other little ones need this surgery.

So, the cast is back, of course - from ankles to armpits. She feels soooo heavy this time - I really cannot lift her by myself anymore. I think they coated her with lead before they casted her, lol.

She is doing o.k. - just getting back to eating and drinking a bit, and complaining a lot!

We got a freak snowstorm the night of her surgery - high winds, 6-8" of snow, crazy weather that Wayne had to drive home in late that night. We had just cancelled our appointment for snow tires, because her surgery date got changed.

We are snuggled up at home until she gets better, probably 8-12 weeks or so. She very much wants someone right beside her all the time - there was so much activity in the hospital and so many people poking and prodding her, that I think she wants someone standing guard for her. Poor kid, she'd hear a cart coming down the hallway, and she'd say, "all done, all done" - afraid they were coming for her.

She had a sweet little roommate named Jenna, that had a very unusual life story - I'll write more about her, but I have to wrap my brain around all of it - its one of those stories that make you rethink so many things.

Thank you everyone for all of your thoughts and prayers - we felt them all. Big hugs to those of you who have had really tough weeks - especially Tara Marie - I'm thinking about you, and know you will love Greta through the hurt.