So far, I’ve only been asked one ridiculous question about Hannah. It came from a phlebotomist at the children’s hospital during Hannah’s third thyroid check. I sat in a high chair made for children, holding onto a squirmy baby being prodded in every vein to find a decent one. The woman didn’t look up when she asked:
“Is she only half Down syndrome? She doesn’t have any health problems?”
My response was silence for a solid 15 seconds. Seem like a short amount of time? I promise you it felt like eternity. Finally, I said “Well, she already had heart surgery…so…no, I guess there aren’t any more health problems.”
Then she went on to tell me about her granddaughter who’s “half Down syndrome” but quite a hellion. Hannah’s cries interrupted the continuous stream of “what the f*ck” running through my head.
The rest of the day my mind was full of the responses I wish I gave her…
No, she isn’t half Down syndrome, all Down syndrome, or any amount of Down syndrome. She’s a little girl.
Technically, her 47th chromosome makes up 2.13% of her DNA. So no, she’s not even half Down syndrome.
Health problems? You tell me. I drove 45 minutes for you to search for a vein that produces more than a drop of blood to find out.
A heart defect isn’t enough of a health problem for you? It certainly met my lifetime quota.
The rest aren’t appropriate for sharing. By day’s end my internal venting was over and the irritation was gone. I know this woman didn’t mean to offend me. I think she was telling me that Down syndrome wasn’t going to keep Hannah from being a rowdy, mischievous, or troublemaking child (aka hellion).
Our journey is on a road paved with good intentions. Next time I have an odd interaction like that I’ll try to find the positive before jumping all over the negative.
People first language is a new concept to me. It’s not a hard one to understand since the definition is in the name. It’s when you speak about someone’s differences in a way that puts the person first. For example, Hannah is a child with Down syndrome, not a Down syndrome child.
In August, our local NBC affiliate station posted a story on their FaceBook page that immediately received a slew of nasty comments thanks to the headline they used. I can’t remember the exact wording but it was something like “Blind and Autistic 14 year-old has voice of an angel. Within 30 minutes the headline was changed to “14-year-old Christopher is blind and has autism – but he also has the voice of an angel” and the comments bashing the station were deleted.
I doubt whoever posted the story on the FaceBook page planned to offend the boy. I think the majority of the population is unintentionally ignorant to people first language. I know I was. With our new invitation to the World of Special Needs I realized I’ve said a lot of things wrong, like saying someone is autistic when I should have said that he or she has autism/ASD or is on the spectrum.
I’m sure the FaceBook commentators meant well, but their approach was all wrong. If I’m speaking to someone and they don’t use the preferred language, I do my best not to attack them about it. I want to fight ignorance with awareness, not attitude.
We have two sick kids in the house this weekend. Hannah has a new cold and it hit her hard Friday. She was a little booger factory and daycare said she had trouble with her bottles and didn’t want to lay down. Pete and I had plans for another flag football game and debated whether or not Hannah should go. I think the fresh air helped clear her out because she’s much less congested this morning. She also seemed to like watching everyone running around and had her first ride on a playground swing.
While we were at the game, Gamy was resting comfortably with Grandma and Grandpa. At some point Thursday night Gamy’s body flipped a switch on her. She went from her goofy, silly normal self to lethargic, sad, and barely interested in her doggy ice cream. Friday morning she was even worse. She put her head in my lap and when I got down on the floor with her she put it up against mine, almost like she was trying to telepathically tell me she was hurting. Thankfully Grandma was able to take Gamy to the vet for us, where she got a shot of amoxicillin and a 4 week course of antibiotics. The vet said it’s most likely some sort of tick-borne illness and will show up on her routine blood work. The amoxicillin made a big difference and Gamy is almost back to normal.
Pete’s fishing tomorrow and my plan is to relax with the girls. Hannah’s pretty excited about rockin’ her new Patriots onesie. I’ll be sure to post a picture.
Every morning I receive Google alert emails with news stories that mention Down syndrome, Trisomy 21, and special needs. For a couple weeks, there was always a story about Ohio’s attempt at a law that would prohibit abortions motivated by a Down syndrome diagnosis.
What I found most interesting when reading these articles was how many women are steered by their doctors to terminate a pregnancy following a Ds diagnosis. That would certainly help explain the 2007 statistics that 90% of Down syndrome pregnancies end in abortion.
These articles made me wonder what my OB would have done had our genetic tests had a different result. Based on how she reacted to every other less than ideal situation, I think I have my answer. Second trimester bleeding? Go see a high risk specialist. Third trimester cramping? Go to the hospital. Down syndrome diagnosis? Take care of that.
As a naive young woman I probably would have made the hypothetical choice not to birth a baby that wasn’t “perfect.” It would have been a decision motivated by fear. Then I became pregnant and the choice was taken away from me, my body and Mother Nature making the decision instead. Whether you’re pro-life or pro-choice, it hurts you to the core when the decision is not your own.
I honestly don’t know what I would have done if we did receive a prenatal diagnosis. My heart would have wanted to keep the baby, but my mind would have been flooded with misconceptions and stereotypes. As much as I hated the surprise, there are times I’m thankful we didn’t know. No one could have prepared me for the joy we’d miss out on because of one little girl.
The name Hannah was on the top of our list for a year or so before we even got pregnant. We liked it because the nickname Hannah Banana was adorable. Once we found out we were having a girl, we had a tough time not calling her Banana when talking to friends and family.
We officially named her Hannah Elizabeth when she lay crying on my chest. We wanted to make sure the name matched the face and we knew at that moment that she was Hannah. She was the little girl we imagined since my 17 week ultrasound. We still didn’t know she had Down syndrome.
There was a brief period after she was born that I was mad we named her Hannah. The Hannah I dreamed of didn’t have Down syndrome. It didn’t seem right. I pulled myself back to the morning she was born and asked myself what other name would we have chosen. Who was this girl who made a quick entrance into the world, and pooped on my chest, and made her Daddy smile like I’ve never seen him smile? Never mind…Hannah fit perfectly.
Now when I look at Hannah I can’t imagine her as anyone else. Hannah is Hebrew for grace, making it a fitting name for someone that acted like a heart defect and open heart surgery was no big deal. Elizabeth is after Elizabeth Bennet, the intelligent and quick-witted character from Pride and Prejudice. It’s a character Hannah will learn to know well thanks to story times with her Jeep, and a beautiful literary role model for my little girl.
One of the most common physical signs of Down syndrome is low muscle tone, or floppy baby syndrome. The hospital pediatrician mentioned it after Hannah’s birth, the children’s hospital doctors mentioned it, the visiting nurses and pediatrician mentioned it. I had no idea what they meant. Aren’t all newborns floppy? I finally asked one of Hannah’s nurses and she demonstrated, maneuvering Hannah’s arms and legs up and down with zero resistance from Hannah.
Low muscle tone means Hannah will take longer and need to work harder to do just about everything a little kid learns to do; however, there is a major advantage for this momma.
When Hannah’s tired or cranky her body is like jello and it makes for the sweetest snuggles. She melts into me. It’s like there’s nowhere else in the world she’d rather be than in my arms. Lately she’s been wrapping one arm around my neck, which has significantly increased the cuddle factor.
1929 – Life expectancy of someone who is “mongoloid” is only 9 years.
1946 – Life expectancy of someone who is “mongoloid” is only 12 years.
1983 – Life expectancy of a person with Down syndrome is 25 years.
1997 – Life expectancy of a person with Down syndrome is 49 years.
2006 through 2015 – Life expectancy of a person with Down syndrome is 60 years.
Dates from Down Syndrome Research and Medical Care
In 60 years, Hannah will have a lifetime of experiences…
High school graduation
Nieces and Nephews
Dr. Paul Kirshbom was the lead surgeon for Hannah’s open heart surgery. When I first met him he explained the surgery, the possible consequences, and answered my questions. He was very straightforward and businesslike, not too friendly. I remember being turned off by the cold bedside manner, assuming he didn’t get much practice since his patients were usually asleep while he tended to them. My opinion about him immediately changed after a quick Google search, where I learned he’s the chair of Pediatric Cardiothoracic Surgery at the University of Connecticut School of Medicine and Yale School of Medicine.
On surgery day, Dr. Kirshbom stopped by pre-op to meet Pete and ask if we had any additional questions. Five or six hours later he retrieved us from the main waiting room, assured us that the surgery went very well, and brought us into a smaller waiting room while Hannah was being moved into her ICU room. He disappeared, probably off to his next surgery. I figured his job with us was done and we wouldn’t see him again. Imagine my surprise when he stopped by the next day and each day that Hannah was in the ICU.
We owe him a lifetime of gratitude for the successful surgery and the amazing suture job that left the faintest scar. That being said, I would be happy to never have Hannah be his patient again.
Thanks again, Dr. Kirshbom!
Oh, what a beautiful, grandparent-filled weekend we had here in CT!
We had a visit from Juju and Jeep (my parents) on the books for a while and it had been a good month since they got to play with Hannah (since she was asleep for most of the Buddy Walk). They were on Hannah duty Saturday so Pete and I could see The Martian with Matt Damon. It was entertaining, maybe a little too long, but the suspense kept me from getting antsy. My parents stayed for a couple more hours to chat and admire Hannah before heading back to NJ. Hannah and Gamy were both tuckered out at the end of the day from the extra attention.
Hannah decided she’s allergic to sleeping in on weekends so she was wide awake and ready to play at 5:30 both mornings. She was plenty happy under the activity gym while I worked on some blog stuff. Finally, we woke Pete up to go on a family trip to the grocery store.
Later in the morning Pete dropped her off with his parents and I was able to get a ton of stuff done around the house in just 3 hours. Hannah returned hungry and ready for a nap. The rest of the afternoon was spent playing, reading, desperately trying to get her to eat Gerber pears or smashed avocados, and lots of puppy kisses.
This might sound crazy, and a little biased, but Hannah is the cutest kid to ever live. It’s something about that little pink face, big blue eyes, wide smile, all topped off with a mop of wispy hair. The chubby arms and legs. The miniature feet. The face she makes when she gets too many puppy kisses. The arms that reach out when she seems me. The happy vibe she exudes.
OK, so I’m mildly obsessed with the kid. But I’m not the only one. You should see the reactions she gets from her Daddy, her grandparents, her cousin Charlotte.
Last weekend Hannah and I stopped at Starbucks before a grocery store adventure. The woman behind us started giggling and said “I’m sorry, your daughter is just too cute.” As we walked through the produce section of Stop & Shop, Hannah’s look of wonder and amazement received quite a few smiles. It’s hard not to say “aww” when you see someone so excited by the colors of vegetables. When we left the store I heard someone call out “Oh my God that’s the cutest baby I’ve ever seen!” The funny thing is Hannah was completely concealed by the Ergo carrier, except for her little Pebbles ponytail popping out.
Hannah spreads joy like it’s her job. Her happiness is contagious. I picture it like little pixie dust floating through the air. You can’t escape it, and honestly, you wouldn’t want to. And no, having Down syndrome does not mean she’s always happy. She’s happy because that’s who she is.
the action or state of including or of being included within a group or structure
Another word that we’ve added to our vocabulary in the last seven months. Right now inclusion is easy because there’s nothing to exclude Hannah from. She’s in a daycare class with three other non-mobile infants, she goes on the same walks, naps in one of the four matching cribs, plays with the same toys, gets the same care and attention.
Thinking about inclusion can turn daydreams of Hannah’s future into nightmares. Will she be in the same classroom as her peers, but stuck in the back with an aide? Will she be invited to birthday parties out of pity and then ignored by the other kids? Will we sign her up for recreational sports and watch her sit on the sidelines? Will she walk the halls of her high school seemingly invisible to her classmates?
As Kidstogether.org says, “Inclusion is part of a much larger picture then just placement in the regular class within school. It is being included in life and participating using one’s abilities in day to day activities as a member of the community. It is being a part of what everyone else is, and being welcomed and embraced as a member who belongs.”
Isn’t that what all parents want for their children?