From our two little piggies
I tried to finish this post for yesterday but I was just too tired and staring at the computer screen made it even worse.
Our poor Banana was pooped last night too. She had dual Birth to Three appointments again and no afternoon nap. The morning appointment with Anne didn’t seem too bad. Hannah didn’t want to be on her belly, but they did work on reaching to the sides for toys. When Grandma brought Hannah home from daycare I immediately knew it was going to be a tough afternoon session with Maureen. Her eyes were heavy and glassy, and she seemed a little irritated that there wasn’t a pacifier in her mouth (which she only wants when she’s ready to sleep).
Hannah was a trooper, putting up with most of our demands. She powered through a lot of tummy time, only getting a break when I needed to wipe up some spit up. The exasperated cries are always hard to hear. We know Hannah can roll from belly to back but when she’s tired and cranky she doesn’t even want to try. As much as I wanted to rescue her each time I know that doesn’t teach Hannah to problem solve.
These therapy sessions do give Hannah the opportunity to practice her stubbornness and she was happy to show off her progress yesterday. At one point Maureen and I tried everything to get Hannah to roll over to reach a toy, but Hannah only stuck her arm out to the side, keeping the rest of her body firmly planted. When she pulled her arm back in, the look on her face said “That’s cool, I didn’t want that elephant anyway.” I love watching such a tiny human have big opinions. And I love that she’s just like her momma because the desire to sleep will always overrule everything else.
When you have a child with Down syndrome you’re sent home with an imaginary swag bag of extras that you’ll carry with you for life. The bag is heavy at times and can feel like a burden. There are the things you would gladly live without – the doctors and appointments, the therapy and evaluations, the fear and anxiety. You can’t discard of these things though, it’s all or nothing.
As you sort out your bag and take a mental inventory, you realize it has some pretty cool stuff in it. There’s a fierce sense of protection for your child, one that makes you want to fight for her. It becomes your strongest weapon against the world. It turns you into an advocate with Gladiator-like strength. You’ll find an infinite amount of patience, although it may take a while to kick in. It comes in handy when you’re waiting for those doctors to show up.
There’s even some extra stuff you can share with friends and family, the people who want to be part of your tribe. The bag gives you and your child the authority to be teachers. You’ll teach your tribe the extra vocabulary words that you learn from doctors and therapists and the endless amount of books and websites you read. You can show them about empathy, tolerance, and awareness and their lives will become richer.
You didn’t notice it at first but everything is covered in a thick coating of love and joy. It’s everywhere and is highly contagious. Some days it’s excruciating, but don’t let it scare you and don’t fight it. Let the love and joy guide you. Let them balance the bad days. Share them with the world.
Some of you will be familiar with this, but for those who aren’t, Welcome to Holland is a poem written by Emily Perl Kingsley in 1987. Kingsley is a writer for Sesame Street and her son Jason, who has Down syndrome, inspired her to include people with disabilities in the show, and to write the poem.
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After a few months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean, “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I dreamed of going to Italy.”
But there’s been a change in the flight plans. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.
It’s just a different place. It’s slower than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I planned.”
And the pain of that will never, ever, ever ever go away…because the loss of that dream is a very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland. “
I remember reading all the physical characteristics and health concerns in Down Syndrome: A New Parent’s Guide and thinking I gave birth to some sort of Mary Shelley creation. The pages and pages summarizing possible major health concerns that Hannah could face made me beyond afraid of our future. Everything from the top of her head to the tips of her toes, inside and out, have cells that contain that little extra chromosome. In my cloud of grief I would forget that Hannah would only possess varying degrees of the characteristics and some might not be present at all.
As someone who dislikes surprises and loves to plan, I really hated the “wait and see” life we were about to lead. I wanted a doctor to hand me a test result showing me where Hannah landed on a spectrum of health problems, developmental delays, and intellectual disability. I didn’t like the unknown of the varying degrees. I tried to convince myself we could take each day as it came but couldn’t fathom making more mental and emotional space for another problem.
So far we’ve been lucky that Hannah only had the heart defect and that it was repairable. Like I said with Hannah’s eye exam, I approach every appointment with cautious optimism. I hope for the best but plan for the worst. Even when we took her to the pediatrician to check out her lingering cold I was making mental preparations for a night in the hospital. I try to remind myself to be thankful for Hannah’s health because there are children dealing with much worse varying degrees than she is.
There’s a longstanding stereotype out there that people with Down syndrome are unable to learn, or can learn to a point and then plateau. It’s true that in people with Down syndrome about 40% are in the mild intellectual disability range with an IQ of 50-70 and 1% are in the functional range of 70-80. For reference, the average IQ of the general population is 70-130. Children with Down syndrome are often behind in basic number skills and struggle with short term memory when provided with information verbally which can slow their intellectual development.
That does not mean people with Down syndrome are unable to learn or max out on their learning potential.
Even at 8 months old I can see that Hannah is fully capable, and extremely willing, to learn. I’ve watched her study a toy, trying to figure out where to grab it or how it made a crinkle noise. I’ve seen her stare blankly at the book Fuzzy Bee & Friends, unimpressed with the colors, textures, and flapping insect wings, then reach for it the very next day and flip through the pages. WIth each exposure to something new, you can clearly see her progression in recollection and understanding. As she grows up, we’ll learn the best ways to help Hannah learn, and will hope that her teachers join are on our side. Honestly, it doesn’t bother me if Hannah never understands Calculus or doesn’t know all the former Presidents. I don’t either.
Unfortunately, there’s one thing that Hannah has learned too quickly – open mouth kissing the dog. At first, she’d open her mouth more out of shock in response to Gamy’s kisses. Then, it turned into intentionally opening her mouth. Now, the mouth is wide open and tongue is out. I swear yesterday she even tried to lick Gamy back. Gamy loves it. Pete and I do not.
Pretty damn cute, though.
At Hannah’s 4 month well visit, her pediatrician, Dr. Loomis, suggested that we get Hannah’s first eye exam done sooner rather than later. She recommended a practice very close to where I work; however, they don’t accept my insurance unless there’s a medical reason for the visit. I held off on making an appointment and talked to Dr. Loomis again at the 6 month well visit. She said she really likes that practice but understood if we wanted to go somewhere else, but to make sure they have a panel of patients with Down syndrome.
I called my insurance company to see if they would cover the appointment because Hannah could be predisposed to eye issues but the answer was a quick no. I went ahead and made an appointment and was surprised that they were able to fit us in immediately. I approached the appointment with cautious optimism because Hannah shows no signs of lazy or crossed eyes, vision issues, or congenital cataracts.
The visit itself was actually fun. It was one of the few appointments that ran smoothly and on schedule. We were promptly called back by a tech, who did some quick tests to make sure Hannah was tracking movements and her eyes were responding to the bright light. Then she dilated Hannah’s eyes with drops (only a few resulting tears) and I finished the paperwork while we waited for the drops to activate.
Within 15-20 minutes we were called back to another exam room where we waited no more than 5 minutes for the ophthalmologist. She used a retinoscope and several lens to check Hannah’s “red reflex,” which allowed her to measure the eyes to check for nearsightedness, farsightedness, and astigmatism. Then, the doctor used an indirect ophthalmoscope and condensing lens to check the health of Hannah’s eyes. Hannah didn’t hate the exam but she seemed a little annoyed with the light and changing lens. The doctor employed a light-up, spinning Cinderella and quite a few sound effects to keep Hannah entertained. Of course, I had to hold Hannah’s hands down because anything put in front of her is free game for grabbing.
I’m happy to report that Hannah’s baby blues are healthy. She is very slightly nearsighted, which shouldn’t be a concern for the next eight to ten years. For now, we can continue with yearly exams and keep our fingers crossed that the eyes stay healthy.
Hannah is a lucky little girl to have grandparents who love to her pieces, and Pete and I are lucky to have parents who support us no matter what. This journey would be impossible without their help and love. They were our rocks when Pete and I were agonizing over our unexpected future. They cleaned, cooked, dog-sat, shoveled snow, and tried to keep us sane while we worked through the darkest days of our lives. They kept us moving forward when we were desperate to go back in time.
I’ve never known four people to be so amazingly generous with their time. My parents, Juju and Jeep to Hannah, visit nearly every two weeks and are happy to watch Hannah for a few hours so Pete and/or I can get out of the house. Usually my mom will run errands and shop with me and allow me to prattle on about work and life, while Jeep stays home with Hannah. Pete’s parents, Grandma and Grandpa, watched Hannah full time before and after the heart surgery when germ-infested daycare was not an option. Grandma is Hannah’s chauffeur for doctor’s appointments so I don’t have to miss as much work. We know how fortunate we are to have both sets of grandparents eager to assist us.
One thing that really sticks out to me is that I’ve never heard our parents put limitations on Hannah. They’ve known from the start that Hannah is strong enough to overcome life’s obstacles and they’ve never doubted that Pete and I are strong enough to help her along the way. We’ve received nothing but positivity from them, and for that I am forever grateful.
Today I was reminded that Hannah is one strong little girl, physically and intellectually.
This morning Maureen from Birth to Three visited Hannah at daycare, and according to the report card it was a busy hour. They worked on rolling, sitting, prop sitting, and eating. Maureen even got Hannah on her hands and knees for a minute! There was no mention of Hannah being too fussy or tired to finish the appointment. I was so proud of her and showered her with (even more) kisses.
We also had an afternoon appointment with Anne on the books. Anne read Maureen’s report and worked on the same skills, but focused on reaching for toys while sitting and on her belly. The best part was watching Hannah’s eyes. I could see the thought process running through her head. She’d see the toy, then look at her hand, as if she was calculating the distance between the two. Slowly, she’d reach out her hand, hook the ring of the toy with a finger or two, then quickly pull it back and stuff it in her mouth.
Anne also put Hannah on her hands and knees for a few seconds. It was quite possibly one of the top five cutest Hannah moments. I laid down so I could see her face, and the more Anne pulled her knees under her, the wider Hannah’s eyes got. I half expected her to yell “I’m flying!” based on the look in her eyes.
As I fed Hannah her bedtime bottle and we rocked in the darkness, I reflected on how far she’s come in eight short months, or even the three months that we’ve been working with Bto3. Each week her body gets stronger. The back muscles that were once made of wet noodles now allow Hannah to sit unassisted for a second or two before falling over (I almost cried from excitement). Her hands no longer flail about as if controlled by two opposing forces. Now, those arms move with intention, they have purpose.
Then I started laughing because Hannah essentially had two hours with personal trainers today, meaning she exercised more than I have all month. Plus, she didn’t complain or try to quit. Looks like I could learn I think or two from my little one.
I interrupt our regularly scheduled alphabetical post to bring you a cardiology update!
It was a loooong morning but I loved every extra second with my little Banana. She was in a great mood, despite the early wake up call, and super photogenic.
Before her appointment we met with a researcher in the Cardiology department to complete Part 2 of a research study I participated in. Part 1 was completing a half dozen questionnaires and answering 5 questions on video prior to Hannah’s surgery and Part 2 was answering the same questionnaires and interview questions after the surgery. Although the questions were the same, my sidekick’s energy level was way different this time. When Hannah wasn’t throwing her toys just out of reach, she was trying to help me flip the pages.
Right after that we hopped over to the newly remodeled Cardiology department. Hannah had a quick EKG, then an echo. I was worried the echo would be a pain the the butt because Hannah tends to kick the tech’s arm and she’s grabbier now. Luckily, it was feeding time so the bottle kept Hannah occupied. At one point, she reached out and held the tech’s finger. Of course I didn’t have my phone to capture the adorableness.
Up next was our visit with the lovely Dr. Salazar. This woman is awesome. She always looks impeccable, has a beautiful accent, and takes time to explain everything thoroughly to us. Today’s visit was quick because everything looks as good as it did during the last appointment in July. There’s still a tiny residual VSD that couldn’t be seen on the echo but the murmur could be heard. It’s small enough that we don’t need to be concerned. More importantly, the mitral valve is looking strong and not leaking. Since Hannah’s doing so well we won’t need to go back for 6 months!
After the appointment, we headed to work to meet Grandma, who then drove Hannah to daycare. Since I was there a little early I took Hannah in for a surprise visit. She loves the attention the ladies give her and tried to help me do some work.
Hannah’s still not loving the texture of baby food purees so I bought a Munchkin mesh feeder to trick her into trying new flavors. Today I stuck a banana chunk in it and she loved it. I had to take a video of her chomping and playing in her new big girl chair. It sure was messy but she seemed to like having control of the feeder.