My Sidekick

Banana had some serious big girl pants on Monday night. She helped me unload the dishwasher. She put food in the grocery cart. She dictated which songs to sing while we shopped. She pointed to a picture of a boy so she could show me his facial features. She tried so hard to say ears, nose, teeth, and chin. She took the food out of the cart and put it on the checkout belt. She negotiated bedtime on the drive home. She invented a game of running away from me while I tried to change her clothes. She laughed until she couldn’t stand. She knew why it was funny. I loved every moment. And part of me hated it.

Hannah seems to go through developmental growth spurts, the last one starting a few weeks ago. Suddenly she decided that she wants to walk more or, if she’d being held, she wants to help carry stuff for you. She picks up new signs immediately but also tries to speak the words. She wants to get herself dressed and undressed. She crawls onto the couch with a book and reads to herself. It’s truly amazing to see her put pieces of the world together, to watch her try her darnedest to be solve a problem, to see the recognition in her eyes when she answers a question. Her little voice chirps ‘yeah’ or ‘no’ but is full of certainty. Again, I love it and hate it. We wait patiently for these milestones and then she bangs them all out at once, preventing us from savoring each one individually.

I always had an image in my mind of the relationship with my future daughter – my sidekick and little helper. I lost focus of this picture briefly after Hannah’s birth but each day she showed me that she’s the girl of my dreams. All these big kid skills she’s been learning lately were preparation for the moment my sidekick was officially ready to take her place. As we walked up to our house after a long day of work and daycare, my little blue-eyed, fair-haired darling held her hand out for mine, giggling as she stomped up the steps. And I walked beside her beaming with pride.

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Always on my Mind

As I packed for a weekend at the beach with Hannah and some friends I out-of-nowhere remembered something I read on a blog a while ago: the writer mom forgot her son had Down syndrome. I can’t say that has ever happened to me. Even for a short trip to the beach I’m reminded of the extra help and supervision my child will need. That extra chromosome plays a part in every activity every day, maybe not a leading role, but it’s always on my mind.

Every playdate requires extra planning. Childrens’ museums are usually stroller-free zones and my worst nightmare. I can’t assume Hannah will want to walk and I can’t carry her and the diaper bag all day. Parks and playgrounds are okay if they’re geared toward little kids and we’re the only ones there. At the last playground playdate Hannah was too nervous with the older kids running around so we ended up watching from the stroller.

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There’s a reminder every time I look at the calendar. Another appointment to go to, another appointment to make. Hannah’s schedule is busier than ours and we often require extra help from the grandparents. I can’t imagine doing it all without them. We’re also lucky our employers are so understanding. I feel like I was barely at work last month because Hannah had so many 3 and 6 month follow ups.

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It’s even tough to swap kid stories with friends and coworkers sometimes. I don’t know what it’s like to have a baby that doesn’t sleep all night. They don’t know what it’s like to force your baby to take a bottle in the middle of the night. I don’t know what it’s like to just watch a child develop on their own. They don’t know what it’s like to share small milestones with therapists and specialists. Yes, our kids all throw tantrums. Yes, our kids all have their quirks. Yes, our kids all develop on their on schedule. But you can’t understand what it’s like to be a special needs parent until you’re knee deep in it.

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They’ll also never understand how amazing it is. How excruciatingly beautiful life is with Hannah. Every day she shows us what Down syndrome really is. It’s not just the doctors, the therapy, the delays, the work. It’s patience and perseverance. It’s singing and dancing in the bathtub, the car seat, the grocery store. It’s watching her reaction when we see one of her daycare friends at Target or a summer concert. It’s the twenty minutes she needs to say goodbye and give hugs before we can leave. It’s the pride and self-praise when she busts out a new skill or repeats a good behavior. It’s the magic in her eyes and the joy in every smile.

We All Fall Down

There are days that I fly up and down the wooden stairs in our house. Sometimes I pause and think how awful it would be if I fell and was seriously injured while Hannah was home. How long would it be before someone would find me? Should we install a panic button so Hannah can call for help? Would the dog even care? Even worse is the fear of falling while holding Hannah.

Unfortunately, last night this fear came true. Pete, his brother, and I just finished an awesome evening hike. Pete took the dog home to wash off the swamp water she walked through and I went to his parents’ house to pick up Hannah. I chatted with Grandma for a bit, got Hannah from the crib, and headed down the stairs.

Next thing I know, Hannah and I are bouncing down the steps. When we landed at the bottom Pete’s mom took Hannah so I could stand up and I saw the blood all over my shoulder where I had been holding Hannah. I grabbed my girl and rushed her into the bathroom. It looked like she bit a hole through lip. Grandma grabbed some washcloths, I popped Hannah in the carseat, and we rushed to the hospital. Hannah went between crying, screaming, and sleeping during the longest 6 mile drive of my life.

The women at the registration desk were incredibly efficient, and then everyone else seemed to be a heck of a lot less worried than Grandma and I were. It was obviously a busy night but in my mind nothing was as important as my little girl – who now looked like a victim in a horror movie. Hannah went in and out of sleep, with bouts of screaming whenever a nurse or doctor tried to touch her.  She finally calmed down after a Ketamine injection, had a CT scan (which came back fine), and then the PA stitched her lip up (with help from 2 more doses of Ketamine). The sweetest nurse cleaned all the blood off of Hannah’s face and hair and our little girl was finally recognizable again.

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Throughout this whole ordeal I felt like the world’s worst mother. It was horrifying – way worse than the recovery days after Hannah’s heart surgery. This was my fault. I was furious at myself. If I had left my shoes on after the hike I wouldn’t have slipped. If I hadn’t been in such a rush to get home to eat leftover pizza I wouldn’t have slipped. After everything this kid has been through the last thing she needed was a late night trip to the ER thanks to her clumsy mother.

Then, for some reason, I got irrationally mad at the Universe and Down syndrome. I was mad that I understood every word the doctor was saying to me about Hannah’s treatment plan. I was mad that he asked me if I worked in the medical field – or if I just learned so much from being Hannah’s mom. I was mad that I knew people with Down syndrome burn through sedatives quickly and that I forgot to tell the PA. I was mad that people ever say “everything happens for a reason” because there’s no good reason for this to happen. I was mad that this awful, but normal, childhood accident isn’t Hannah’s first experience with sedatives and heart rate and oxygen monitors. I was mad that, once again, wires were snaking out of my baby’s jammies and we were cuddled up in a small hospital bed.


Hannah woke up this morning like nothing happened. We went to her year end show at daycare, picked up her precautionary antibiotics, then headed to the pediatrician. The doctor said the stitches look great but Hannah needs to take it easy for a few days. We also need to visit the dentist to see if her top teeth were damaged. I’m rockin’ a fractured sacrum and a wicked headache. But, we’ll all be okay.

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What if I fall?

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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.

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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.

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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!

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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.

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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.

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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.

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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.

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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?

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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.

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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.

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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.

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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.