What if I fall?

 b7811df66547bb8080db695b53f7f0b1

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 bracelet a 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.

fullsizeoutput_f94

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.

Don’t Miss the Magic

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.

 

World Down Syndrome Day 2017

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.

IMG_1546

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!

IMG_1542

Being a Big Girl

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.

IMG_2553.JPG

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.

IMG_0245

 

4 Ways Hannah Impressed Me Last week

1. She got her own snack from the pantry.

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.

IMG_0666.JPG

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.

Princess Hannah is 2 Cute

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.

fullsizeoutput_c12.jpeg

 

Whippersnappers Play Gym

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?

IMG_1473.JPG

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.

IMG_0153.JPG

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.

fullsizeoutput_abc.jpeg

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.

img_0879

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.

Life with Hannah Banana Lately: 20 months

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.

IMG_9505.JPG

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.

IMG_0099.jpg

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.

img_9994
This is comfortable sleeping in Hannah’s world

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.

IMG_9508.JPG

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.

IMG_0211.JPG

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.

 

One Year in Daycare

It’s been one year (and a couple weeks) since Hannah has been in daycare and I can say, wholeheartedly, there are no regrets about her being there full-time. The staff loves her and treats her so well, they know when she’s “off” and having a bad day, and they help us work on and reach our Birth to Three goals. The icing on the cake is that the location is incredibly convenient for me, Pete, and Grandma.

A few weeks ago the daycare director called me into her office to discuss whether Hannah should be moved to the next room with the kids her age or kept in her current room with the kids at the same skill level. The director led the discussion with all the disadvantages of Hannah moving to the next room and I walked away from the conversation leaning towards holding her back.

After talking it through with Pete, family, a few friends, and Hannah’s therapist, the “tribe” agreed that Hannah needs to stay with kids her own age. I took all of the ideas and suggestions and had another meeting with the director, and honestly, I was prepared for an argument. Thankfully, she gladly accepted our decision that Hannah should move to the next room. It won’t be until the end of the month when a space opens up, which works out perfectly. Instead of transitioning for a week like the kids usually do, Hannah will have the month to work on a few big girl skills and become acquainted with the toddler room.

Hannah will need to learn to sleep on a cot and give up her pacifier for the big move. We are also trying to get her to use the sippy cup more so that she can give up the afternoon bottle. The facility provides snacks in that room and we’ll need to advise what we feel comfortable giving to Hannah (for example, pretzels are challenging when you only have 5 teeth). Clearly none of these issues are insurmountable or valid reasons to hold Hannah back and the move puts her on the same educational track as the other kids her age.

Immediately after speaking with the director about the big move Hannah was blatantly pushed over by one of the other kids who will also be leaving the room soon. The teachers have all ensured me that Hannah can “hold her own” and developed a death grip to prevent toy theft but I still worry that she’s going to be an easy target and get picked on.

 

Hannah’s Ear Tube Surgery

It’s been a little over two weeks since Hannah’s ear tube surgery and I feel pretty bad for not writing about it yet.

We knew from the sedated echo that Hannah would handle the “nothing after midnight” fast pretty well. I gave her a late bottle the night before and she had no problem skipping her morning one. We were told to check in by 7:10 but arrived about fifteen minutes early and re-lived the morning of her heart surgery. We went up to the same suite to check in, answered the same questions, signed the same forms, and were escorted to the same pre-op area.

At this point I was trying not to let my nerves get to me but it’s so damn hard when you’re waiting for nearly two hours and are asked the same questions by a dozen different people. Of course everyone there is extra nice but the rotation of nurses, residents, and doctors was tiresome and created a long build-up to the main event. Finally we talked to the anesthesiologist, who said she saw Hannah’s latest cardiology report and didn’t expect there to be any heart related issues while Hannah was out. We were given a mask for Hannah to play with so she’d be more comfortable with it. I understand they meant well but thirty minutes of make believe with a gas mask doesn’t do much for an 18 month old.

IMG_9204.JPG

Once everyone was ready for us the next step happened in a blink of an eye. I put on a paper robe and gloves, carried her into the operating, and plopped her on the bed. We were swarmed by people, hands all over Hannah, then the gas mask held to her head. I wish someone would have warned me that I would be watching someone suffocate my child. There was a nurse standing behind me explaining that the eye rolling was “normal,” the desperately trying to pull away was “normal,” and the stranger holding the mask tighter was “normal.” I was escorted from the OR before Hannah’s eyes close but was assured she was asleep. That moment was only slightly less terrifying then when Hannah woke up after her OHS and was still intubated.

The nurse walked Pete and I to the waiting room, where we snacked on free graham crackers and texted the grandparents. Just as I was making a cup of coffee the ENT came out and brought us to one of the little rooms across the hall to update us on the surgery. It was quite a production for good news. Pete and I are fairly certain we were given updates on Hannah during her OHS in the middle of the full waiting room. Anyway, they were able to get the tubes in her teensy ears and suck out the fluid. Audiology was already conducting the hearing test and the anesthesia was weaned back just enough to keep Hannah in a deep sleep.

An hour or so later the audiologist came out, brought us to the same meeting room, and said Hannah’s test was very good but still missing the lowest sound on one side. The results were much better than her last behavioral hearing test, very slightly worse than her last BAER test, but still nothing to be concerned about.

We were finally reunited with a very sad little girl who had to be bounced or patted to stay calm. Once she started to wake up we offered her a bottle of watered down apple juice and were astonished that she chugged a few ounces. Thank goodness because the sleeping gas gave her the foulest breath and the juice helped wash it away. I was surprised how quickly we were discharged but it was clearly a sign that Hannah was recovering well. Pete and I celebrated with lunch at Qdoba while Hannah continued napping. Her recovery at home was similar to that of the sedated echo – small meals, a long nap, and a very late bedtime.

IMG_9215

I haven’t noticed much of a difference in her hearing. She still hates the rare occasions that Gamy barks and cried when I used the hand vacuum. We always knew she could hear soft or distance noises but the issue was more about how muffled the sounds were. Hopefully the world sounds clear to her now…except for my awful singing voice.