Everything is overwhelming

“Everything is overwhelming. Everything you’ve been through up to this point with Hannah has been overwhelming.”

My dad said that the other night as we discussed Hannah’s upcoming move to public preschool. I explained the transition meeting wasn’t bad. The team seemed impressed by Hannah, who was incredibly well-behaved. The Developmental Therapist from Birth 2 Three helped me and Pete communicate Hannah’s progress and needs. We agreed on a play-based evaluation in January. I was only slightly annoyed with two things said by the school’s team. Overall it was a good start; however, I left feeling emotionally drained.

Hannah started Birth 2 Three at six months old and we’ve been slowly working up to this handoff. Hannah seems too young and little to go to such a big school and take a bus to daycare in the afternoon. She’s never even been on a bus!

We have four more months to prepare her, and ourselves, to leave the safety and comfort of daycare. Four months to prepare for a 15 year relationship with the school district. It’s a little exciting and a lot of terrifying. My day dreams about Hannah’s future go from a beautiful, intelligent, prospering little girl to nightmares about fighting with the school for inclusion and services. The parent advocacy class I’m taking has me feeling prepared for the next era but also anticipating a fight.

I’ve always said my life as a special needs mom is not hard. It’s not sad. It can be lonely and frightening. And the very next day it can be empowering and magical. Overwhelming is the best word to describe it.

But… 

Hannah’s birth diagnosis was overwhelming.

The first three months of her life with a heart defect, the surgery, and recovery were overwhelming. 

The transition to daycare and building a relationship with the staff was overwhelming.  

The attempt to give your child a “normal” routine around doctors appointments and therapy sessions is overwhelming.

The transition to toddler life, verging on “threenager” life is overwhelming.

My Dad’s right. Life with Hannah Banana is overwhelming, and every time we come out stronger, smarter, and ready for the next challenge.

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Second Christmas with Hannah

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…

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Hannah vs. Santa

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!

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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.

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And finally, we saw him at a “Slices with Santa” fundraiser. Hannah was not interested in Santa, or pretty much anything, that night.

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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!

My Second Mother’s Day

Holidays, whether legitimate or of the Hallmark variety, always make me reflect on the last few years and Mother’s Day is one that has changed tremendously. Mother’s Day 2014 was the day we originally planned to tell the future grandparents that we were expecting. Instead I spent the day in an emotional fog, haunted by our recent loss. On Mother’s Day 2015, my Dad watched Hannah while Pete and I went to a movie. I must have checked my phone a dozen times to make sure there were no missed calls from him. At that point Hannah’s health was started to deteriorate and I found it difficult to celebrate motherhood in a state of uncertainty.

Mother’s Day this year, my goodness, it was great. I eagerly went to yoga in the morning, leaving Hannah with Pete and his family, and arrived home to an empty house which allowed for an extra long shower. Then Hannah took a three hour nap so I could do laundry and dishes without feeling guilty that I wasn’t giving her my full attention. Pete gave me flowers. We spoiled our dinners with late afternoon milkshakes from McDonalds. Most importantly, Hannah was healthy.

I found myself wanting to celebrate Hannah and Gamy more than myself. After all, they’re the ones who made my lifelong dream of motherhood come true. Because of them I can ask “what’s in your mouth” and “what’s that smell” at least once a day. Because of them I laugh like I never have before. Because of them I love like I never knew I could. Because of them I can feel every muscle fiber in my heart straining to find a little more room for the smiles, the cuddles, and the look in their eyes that tell me they feel it too.

Our Baby is Almost 1

I’ve been thinking a lot lately thanks to Hannah’s rapidly approaching first birthday and the thinking is stirring up those crazy emotions from last year. It’s all stuff that I don’t want to talk about because when I talk about it I cry and I don’t want to shed any more tears for 2015.

This time last year we had no idea what was coming. While we were busy folding tiny clothes and anticipating more snow, Hannah was resting up to make her debut and change our lives forever. Some days it feels like the year flew by. I grasp on to the details of those first weeks with Hannah, trying to hold on to them like a kite being sucked into a tornado. I try to remember the faces she’d make when nursing, the warmth of her tiny hand on my chest when she napped in my arms, and the adorable sigh she’d make after sneezing. Other days the details are remarkably clear. I can still hear Hannah’s cries when we drove her home from the hospital and the sound of her heavy breathing during tummy time. I can see the look in her eyes the first time she made real eye contact with me.

I’ve been thinking about the day, shortly after the miscarriage, that I sat in my car sobbing and praying. I begged God for a healthy baby and in exchange I would gladly suffer through a miserable pregnancy. I would have gone through Hell for another chance to be a mom. I’ve been thinking about when people asked me if we wanted a boy or girl I’d say “It doesn’t matter as long as he or she is healthy.” Now I cringe at the term “healthy baby,” I know that real Hell is watching your child suffer, and I know better than to barter with God.

I’ve been thinking about Hannah’s perfect, beautiful birth. How “trying to push” turned into real pushing and twenty minutes later I had our daughter on my chest. And twenty minutes after that our world was shaken. I wish I could go back to that day with the knowledge and peace that I have now. I wish I could go back and enjoy every second, give my whole self to Hannah, instead of being scared. I wish I could relive those moments of doubt without wondering if she was or wasn’t doing something because of Down syndrome.

A year ago I never thought we’d end up here. I never thought having a child would change our lives quite like this. Hannah’s extra chromosome has added more to our lives. More doctors and appointments. More uncertainty and unfamiliarity. More awareness and compassion. More amazement and beauty. Hannah introduced us to a whole new life, a new community, and taught our family more than we ever anticipated learning in a year.

Hannah made me a mother that I did not expect to be. She made me tougher, yet more empathetic. She showed me that we can do hard things. I wish she knew what a strong girl she is and how amazing her little body is. I wish she knew how proud we are of her. I wish Hannah knew how extraordinary she is.

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Friday Favorite I – Jumping Jack Apparel

A few months ago, thanks to Instagram,  I came across an awesome Etsy shop called Jumping Jack Apparel. The shop features graphic tees, headbands, and prints for moms and kids. Unfortunately, or fortunately for our bank account, headbands and Hannah’s noggin don’t cooperate quite yet so I haven’t had to make the painfully difficult decision of which ones to purchase.

I wanted to buy one of everything but finally settled on the “I Believe” tee and the gray “Favorite Reason” tee. The shirts are super soft and the screen printing has handled multiple washes without fading or cracking. I’ve received a bunch of compliments on both shirts, one young woman telling me “you are my favorite reason to never give up” would make a great tattoo.

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The more important reason why this is a favorite is due to the story behind the shop.  It’s heartbreaking but a beautiful to tribute to their son…

My name is Sarah and I created Jumping Jack Apparel in honor of our son Jack. He was diagnosed with SMA or Spinal Muscular Atrophy, at just 6 weeks. My husband and I (unknowing at the time) carry the gene responsible for SMA. SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Jack became weaker each day. He never held his head up, and eventually lost the ability to cough, swallow, eat and breathe. He never sat up, he never took his first steps. He never said “Mama” or “Dada”. In the beginning we made tag blankets and crinkle toys since Jack was able to hold them with his weak muscles. We sold them on our Easy site as crafting was very therapeutic for me. The first headbands we made were also for Jack to help hold his oxygen and feeding tube in place. Jack took his last breath in my arms at 6 1/2 months old. He is the bravest boy I know.

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Is that not the most beautiful face you’ve ever seen? You can learn more about SMA here. $5 from every “Favorite Reason” tee is donated to the Gwendolyn Strong Foundation, a nonprofit dedicated to raising awareness of SMA, funding research, and providing support to families.

You can find Sarah’s Easy shop here. She’s also on Instagram @shopjumpingjack and on Pinterest.

We’re live in…5…4…3…

It’s 4:30 am. Hannah is sleeping. Gamy is sleeping. Pete left to go fishing. I’m attached to a machine that’s harvesting Hannah’s breakfast. I’m also typing, thanks to a homemade hands-free pumping bra. I have a funny feeling in my stomach that I’ve diagnosed as nerves. Nerves because when I finish typing I plan to click “Publish” for the first time. Nerves because I’m opening our lives up to strangers, strangers who I hope will become friends. Behind the nerves I can feel the excitement brewing for this new adventure.

My hopes for this blog are simple. I hope to guide you, inspire you, and learn from you. I am a student and a teacher in this crazy world.

Let’s toast to first day of my life as a blogger. Welcome to our Life with Hannah Banana!

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