Hi, I'm Lee! I'm 30 years old and live in Connecticut with my husband, Pete, our dog, Gamy, and our newest addition to the family - Hannah Banana. Shortly after Hannah was born we found out she has Down syndrome and a heart defect. This blog is about our journey as new parents and navigating the world of special needs.
I needed that quote 2+ years ago when I was f-ing terrified of Hannah’s diagnoses. Down syndrome and a heart defect seemed insurmountable back then. I remember sitting in the hospital’s cafeteria with my dad one day after Hannah was born, telling him I hated when people said that Hannah was lucky to have parents like me and Pete. I was so sure we were going to fail that girl.
I had extreme anxiety leading up to Hannah’s heart surgery in the form of horrifying nightmares and struggling to breathe at the thought of the impending procedure. The anxiety subsided once her surgery was over but I still went into every doctor’s appointment with overwhelming fear. Fear of another surprise, fear that there would be something else wrong, fear that the 47th chromosome would keep messing with our baby. As Hannah grew and we learned more about our little girl we settled into this beautiful life. We did not fall. We soared.
I’ve become a believer that the Universe sends signs to guide us, warn us, encourage us, etc. Six months ago I was given a rose gold heartbeat necklace shortly before Hannah’s cardiology appointment. It was the appointment where the doctor told us Hannah wouldn’t need surgery if her condition didn’t change. I should have recognized the new sign when I found this braceleta couple weeks ago and just had to have it. I should have known what it meant – surgery is back on. It’s frustrating and really really scary to feel like your daughter’s heart can change as easily as the weather forecast. The doctor can’t give us any timeline but confirmed another surgery is unavoidable.
So here we are again, standing at the edge of the great unknown. Waiting for the cue to jump. Waiting to see if we fall or fly.
If you’ve ever met Hannah Banana, or seen her Instagram pics, then you know she’s a total ham. The girl loves attention. We started using #hannahformayor on IG because Hannah does her version of the whole “shaking hands and kissing babies” thing every time we go out. Watching her connect with people is adorable and nothing short of magical.
Usually Hannah receives a smile, wave, or ‘hi’ in return. Best case scenario – the person tells Hannah she’s so cute and Hannah does the cheesy sign we taught her. In the last four days Hannah mayor’d at Home Depot, Panera, a local restaurant for happy hour, Target, and a burger joint. She said ‘hi’ over 100 times, tried to share a used baby wipe and a half-eaten french fry, and gave hugs to two strangers. We also found out she has a small fan club at Target.
I can happily say that during these encounters no one has ever asked about or hinted to Hannah having Down syndrome or special needs. It’s not a topic I try to avoid and I’d certainly love to spread some Ds acceptance, but I always want the focus to be on Hannah first. She’s a beautiful, happy, funny little girl with a lot of joy and love to share with the world. A diagnosis doesn’t change that.
Unfortunately there are times when people are too preoccupied with their cell phones, too focused on their own microcosm, or too cool to engage with a kid. Hannah stares people down until they react or until she eventually moves on to the next victim new friend. I truly feel bad for the people who miss Hannah’s magic.
There’s a difference between awareness and acceptance when you have a child with special needs. Sometimes it’s a fine, blurred line and other times it’s a chasm.
There are times when awareness seems limited, and those moments are a mother’s worst nightmare. Awareness is an asterisk next to Hannah’s name. It’s a reminder that she’s included but different. It means there will be a day we argue with her school and compromise on her needs. Or that people will over-accommodate, anticipating that Hannah ‘can’t’ or ‘won’t.’ It means there will be people who don’t take her seriously or try to take advantage of her delays.
Yesterday was not one of those days. Yesterday was a day of tear-inducing, heart-melting acceptance.
Acceptance is your daughter’s daycare happily celebrating World Down Syndrome Day. Not just her room – the entire facility. It’s seeing the halls decorated with mismatched socks that the kids decorated. It’s seeing the teachers and children, most who don’t even know Hannah, rocking their colorful socks. It’s a message on Facebook thanking us for sharing the day when all the gratitude should be directed towards them.
Acceptance is your employer initiating a company-wide celebration, asking employees to wear wacky socks, and creating an interactive game out of it. It’s handing out stickers to people you rarely work with and being met with huge smiles. It’s a rush of coworkers coming over to see Hannah when she arrived for a special visit and talking about it the next day.
Acceptance is inspiring and humbling. It left me wondering, once again, how we ended up with the best family, friends, and coworkers. So thank you, everyone. You knocked our socks off by rockin’ yours!
At night Hannah and I lay on the recliner, she watches the stars on the ceiling and I watch her. The light from the Twilight Ladybug reflects on her porcelain skin…red…green…blue… Her eyelashes flutter with each slow blink and her wispy, baby-hair bangs sweep across her forehead. The look in her eyes is a mixture of comfort, contentment, and wonder. She’s absolutely gorgeous.
I keep staring, amazed by how much her face has changed since she was an infant. And how pretty much everything about her has changed since she moved to the toddler room at daycare in November. There are times at home when Hannah refuses to let me be out of her sight. She will hunt me down, then insist on being on my hip or in my lap. Knowing where I am just isn’t enough. Mixed in will be moments of the fiercest independence, the most sincere amazement, and the sweetest self-praise. She’s a full-fledged toddler now and she kicks ass at it.
I’m actually stunned by how calm Hannah is when her life must be so confusing. Her family, teachers, and therapists trying to teach her to take care of herself and make decisions. Then those same adults saying variations of ‘no’ all day. Sit at the table but don’t put your feet on it. You can throw a ball but not your cup. Eat this food but don’t put that in your mouth. Be a big girl but don’t be too big too fast. It’s no wonder toddlers throw tantrums.
I don’t consider myself a patient person but I give Hannah every ounce I can. She’s navigating a world that I’m a stranger to as well. I slowly gave up on idealistic plans like no television, vegetables at every meal, Pinterest-level crafts and games every night. Now we have Sesame Street or nursery rhyme videos on almost every night, she ate vanilla pudding for dinner last Friday, and sometimes we play for an hour with just a baby wipe. It can’t be that bad when she’s learned dance moves from Sesame Street, self-feeds the pudding with a spoon, and likes to clean our floors with the wipes.
One morning Hannah and I were chilling in the den before it was time to get ready for daycare/work. Perpendicular to the entrance of the den is the kitchen pantry, which is Hannah’s new favorite place. I was drinking my coffee and Hannah was playing in her kid-sized armchair when she suddenly realized the pantry door was open. She slithered off her chair, crawled into the pantry, giggled and giggled, then crawled back to the den with a package of Baby Mum-Mums in her hand. She gave me the package to be opened, wriggled back into her chair, and waited for me to hand over the [completely smashed] rice cakes.
2. She solved a problem by herself.
That same morning Hannah was sitting on our bed, playing with her Twilight Ladybug, and waiting to get dressed for school. It was too bright in the room for the stars to shine on the ceiling and Hannah seemed annoyed and frustrated. I could tell she was trying to figure out where the stars went. First, she watched her hand as she hovered it over the ladybug. Then, she held the ladybug in front of her and looked down at her jammies. Finally, she put the ladybug on its side and propped it on a pillow so the stars projected on the wall.
3. She sassed me in sign language.
Our Birth to Three home visit last week was Developmental Therapy and Speech Therapy. Hannah wanted me to play her animatronic cow that sings ‘Old MacDonald’ but I wanted her to practice saying ‘moo.’ Here’s how the exchange went:
Hannah: [signs more to the cow]
Me: Tell me what the cow says and then we can listen to the music.
Hannah: [signs more to the cow]
Me: The cow doesn’t know sign language. Tell mama what the cow says.
Hannah: [looks me straight in the eyes and slowly signs more]
After we all stopped laughing Hannah gave us a quick ‘moo’ and directed her attention back to the cow.
4. She wanted to help & do things herself.
Lately I noticed that Hannah wants to be the one to turn lights on/off, open/close doors, and put things in shopping baskets. She wants to pick out her own snacks and serve herself meals at home. Hannah’s also been trying to put her own clothes on, which I think is a huge undertaking for such a little kid. She loves playing with her pants, getting one leg in, then taking them off and doing it again. Shoes, socks, and her hat get pulled off as soon as we’re in the car and she spends most of the trip trying to put them back on. And of course, everything she does results in clapping and the cheesiest smile.
Sunday afternoon I was hoping nap time would consist of Hannah and I snuggling until we both fell asleep. Instead she climbed on my stomach, covered my face with a blanket, and tried to dive over the arm of the chair to grab my phone off the floor. She was obviously caught in the act but smiled, giggled, and signed Ernie. Her cries and protests didn’t last too long and she finally took her last nap as a one year old.
I spent the rest of the afternoon slowly cleaning up from Hannah’s Princess birthday party. I sorted the clothes she was gifted by size and season and was shocked by how a pair of hot pink leggings could look so small and so big. I can’t believe she’s already two. Every day Hannah impresses me with her intelligence, sense of humor, and beauty. She’s stubborn and determined. She’s intentionally funny and can go from silly to serious in the blink of an eye. She has big opinions on clothing and food. Her little cartoon voice makes me swoon. I never, in my wildest dreams, could have imagined how incredible this girl would be.
When I was younger, my friends and I used to shout “make a wish” when the clock hit 11:11. I never knew or cared what it meant but I recently read a book that explained the repetition of the number 1 has to do with angels, miracles, and new beginnings. I immediately thought of Hannah. She’s all three wrapped up in one little being. It’s no surprise that she was born at 11:10 – the Universe couldn’t wait to give her to us.
I often struggle to accurately express myself when it comes to Hannah. I find myself thinking/writing/saying “words can’t really express…” and I’m in the same predicament now.
Christmas with Hannah was nothing short of spectacular. On Christmas Eve I posted a picture on Instagram with a comment that Christmas was going to be unbelievable. It truly was. I knew Hannah would have fun, and smile, and be her usual happy self. What I couldn’t have imagined was that she’d give each gift a moment of adoration, cherishing it with an enormous smile or a tight hug. I couldn’t have guessed that she’d party from 7 am until after 7 pm with only a 20 minute nap in between celebrations. And I totally underestimated how much fun it would be watching her experience Christmas.
As I settled in to bed Christmas night my mind was working furiously, cementing each moment of the day to memory…
We’ve been fortunate to skip the mall Santa adventure for the second year. We will try it out at some point but for now I’m glad we can skip waiting in line for hours for overpriced pictures of Hannah crying on a stranger’s lap.
Last year Hannah met Santa at daycare but wanted nothing to do with him…or she didn’t want to be photographed in that outfit. Look at those cheeks though!
This year we bumped into Saint Nick at Cabelas and couldn’t pass up the opportunity for free pictures and no line to wait in. Everything was fine until he “booped” Hannah’s nose.
A couple weeks later Santa visited the kids at daycare. Hannah dressed the part this year and the staff snapped this great picture.
And finally, we saw him at a “Slices with Santa” fundraiser. Hannah was not interested in Santa, or pretty much anything, that night.
Our little Banana woke up with a bit of a fever and a crazy runny nose so she spent the daycare at Grandma and Grandpa’s house. Hopefully the extra TLC will fight off those germs by the weekend!
There was a time after Hannah was born that I thought we wouldn’t have the typical experiences with her. My dreams of moms’ groups, play dates, and story time at the library vanished. I thought we wouldn’t be welcomed. I thought we wouldn’t be wanted. I thought people would stare and whisper and judge. I thought we wouldn’t get to be an ordinary family and I was too embarrassed to try to be “normal.”
In most ways I was wrong…
Not only are we welcomed and wanted, we are loved beyond belief.
Plenty of people stare…how could you resist staring at this face?
The only whispers I pay attention to are those saying “oh my goodness how cute.”
Pete and I are ordinary parents but we have an extraordinary child.
There’s nothing embarrassing about not being “normal.”
A few months ago I came across Whippersnappers Play Gym in a town about thirty minutes from us. I saw a Saturday morning class for kids ages 1-3 on their website and immediately called to sign Hannah up. I was fully aware that Hannah would be at a different skill level then her peers but it didn’t phase me one bit. All those fears from a year and a half ago were gone. In that moment, all that mattered was that our little girl had the opportunity to have fun.
The first week went better than I expected. Hannah investigated each activity cautiously but made sure I was within arm’s reach the whole time. She played well with the other kids by sharing foam blocks. She practiced going down the slide and spent a few terrifying minutes in the swing. Hannah used her sign language to communicate with me, smiled almost the whole time, and didn’t cry or whine at all. The other parents and children were incredibly friendly and I couldn’t wait for us to go back.
Pete joined us for the second class and it made the experience so much better. Hannah hit the ground “running” and crawled around to different toys, willingly went through tunnels, and LOVED the slide. She even enjoyed herself on the swing! We thought she’d enjoy the ball pit but it seemed to be too much chaos for our little Banana. We even tried again without any other kids but Hannah was unimpressed.
Week after week Hannah continues to impress us, whether she’s cutting the line for the tunnel, refusing to part with a ball when another kid tries to steal it, or destroying every block tower that Pete builds. She loves the swing now and cries when her turn is over. There are some activities that require a set of grown up hands or that Hannah’s not quite ready for but our kid has just as much fun as all the others.
We’ve missed the last couple of classes and a birthday party due to pink eye and then a weather related closure. I don’t know if Hannah misses Whippersnappers but Pete and I sure do. It’s so fun to watch Hannah and the other kids play, learn, and grow.
Every single day with our little toddler is full of laughs, smiles, and sloppy kisses. Hannah is so busy and continues to astound us with how quickly she’s learning and challenging herself to do more.
Eating – Banana goes through phases with eating. On good days she eats almost everything for breakfast, lunch, dinner, and her snacks. On bad days she eats mostly cheerios and Goldfish.
With only six teeth Hannah still struggles with chewing so we’re sticking to foods that can be mushed easily. The current go-to options are turkey or chicken meatballs, fish sticks, veggie burgers, veggie or potato pancakes, breaded broccoli bites, and steamed veggies.
We introduced food pouches a couple months ago when Hannah began to refuse spoon-fed food. At first we had to squeeze the purees into her mouth until one day Hannah started to drink from them herself. Now the girl can down one in thirty seconds! I bought a pouch holder on Amazon to see if it prevents Hannah from squeezing all the contents out.
Birth to Three – We updated Hannah’s plan this week since the previous plan’s goal was for her to crawl. Even though she’s still doing a pirate crawl we’re going to accept it and move on. For the next six months we’ll be focusing on getting Hannah to play with more age appropriate toys like shape sorters and puzzles, “cruise” along furniture when standing, and continue to improve her communication with the addition of a Speech Therapist.
Daycare – The transition to the toddler room has been a slow one but Hannah should be over there full-time as of the beginning of November. Right now she’s in the toddler room for a couple hours, usually during circle time and snack time so she can eat with her peers. She’s still napping in the infant room but sleeping well on the cot.
Sleep – I don’t want to jinx us but Hannah hasn’t woken up in the middle of the night in weeks, maybe months. We pushed bedtime back a little bit, starting the routine at 7 instead of having Hannah in the crib at 7 because, night after night, she was crying in the crib and not falling asleep until after 7:30 anyway. Now we do jammies, a bottle, a song, and she’s snoring within minutes of laying down.
Playtime – This kid is so much fun to play with!! It’s non-stop action, moving from one activity to the next and making a beautiful mess. She loves to play catch and has quite a good wind-up and throw. It’s especially cute when she’s playing by herself, throw the balls a few feet, and pirate crawls after it. Hannah also loves books and will give you one after another and “help” you turn the pages. The current favorite is “Touch and Feel Tractors” and she knows exactly what part of the tractor to touch on each page.
If you follow us on Instagram you’ve seen Ernie make an appearance in a few pictures. He travels with us most days and is a surefire way to keep Hannah happy in a shopping cart. This is the first thing she’s shown a real attachment to. No blanket, lovie, or stuffed animal has received a shred of the attention that Ernie gets.
Medical – Hannah hasn’t been in a doctor’s office since her 18 month checkup! There have been a few weeks of a horribly runny nose and a gross morning cough but otherwise Banana has been very healthy. The only recent appointment was her first visit to the dentist and I can’t believe how well she did. We do have a cardiology appointment in a few weeks so please keep your fingers crossed.