My birthday boy

Happy Birthday, my sweet Titusaurus!

My mind was swirling last night. So many memories playing like a roll of film from your first birthday to today. Titus, my heart aches. I remember you and I smile and even laugh, but then I cry. It’s complicated, this grieving and joy partnership.

Your first birthday

I remember your first birthday so well. We had two celebrations that year. One just before your actual birthday so we could celebrate with the family in town visiting and the other was just you, me and your daddy. I slaved over these legit rubber ducky cupcakes. Man, they turned out awesome. (By my standards anyway… Ok, let’s just be real. That was actually the best “cake” I pulled off your entire life. It was downhill from there!)

With a candle in the cupcake and all, your eyes lit up as you watched the rubber ducky cupcake in my hand sway closer and closer to your tray as we sang. You reached out for the cupcake and it promptly crumbled in your hands. Confused at first, you looked troubled at your hands, at the cupcake, at me. And then you started to cry. We are pretty sure you thought your favorite toy was broken. There was no going back from there. You refused to try the cake and I had to clean you up and get you down. Sorry buddy! We did get a good laugh out of it all!

On the actual day of your first birthday, I decided you MUST try your birthday cake or it just wouldn’t really be your birthday. I took a few crumbs, yes crumbs, and set them onto the front of your tongue to give you taste. I was sure you’d be back for more as soon as you figured out chocolate was REALLY good! (It’s in your genes to love chocolate after all.) In true Titus fashion, you delivered the unexpected. As you started to move it around in your mouth, you began to choke. Not because you couldn’t handle the few crumbs in your mouth, but because the texture of the cake really threw you off. I watched you smack your mouth trying to process the texture and then it happened. All my slaving in the kitchen making those homemade rubber ducky cupcakes was rewarded with a tray of vomit. Awesome. But you got those crumbs out! Mission accomplished. Titus, those are the kind of memories that keep me laughing for years to come.

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Your second year celebration

On your second birthday, you discovered the joy of singing birthday cards. You had family surrounding you on this birthday too, everyone taking in your joy and wonder of the Mickey Mouse Hot Dog song coming out of a piece of paper. We laughed and laughed and laughed and you thought that was pretty cool too. And did you want any of your cake? Nope.

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The year you finally tried cake

Your third and fourth birthdays were low key, but fun. We had friends over and played for each of them. Getting together with your friends was your absolute favorite thing ever. Finally, *FINALLY*, on your third birthday, you tried one of your birthday cupcakes. And you found that you do actually like chocolate cake. Whew! (Your brother still isn’t convinced.)

Looking back on those simple birthdays, I know I was never great at planning a big party. Most of the time, any plans that were executed were made last minute. It was a good thing we had friends who were willing to fly by the seat of their pants and jump on those last minute invitations. I always had Pinterest-level intentions for your birthdays, but let’s face it… that is just not my gift. But fun was always had.

A birthday milestone – the year of your first bike

For your 4th birthday, you got your first bike! You could’ve cared less about the actually biking activity, but you loved sitting on that bike and pushing the button making your Thomas the Train bike “choo-choo”. I still remember standing out on the driveway as we surprised you with that bike. I can’t believe we only had two more birthdays with you after that.

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Birthdays after a fatal diagnosis

Your fifth birthday was complicated. It was following your diagnosis of Batten disease. You had lost so many abilities you once had. But that morning you woke up happy and energetic. You loved birthdays and found joy in calling your friends and family to sing happy birthday to them over the phone on their special days. I told you it was your birthday and you lit up. You couldn’t see much anymore, nor could you walk or speak any words. But you felt the love. Once again, in true Titus fashion, you were wild and crazy that day. You somersaulted. You flipped around in our arms screeching and laughing. You begged for us to blow raspberries on you. That day, my soul held so much conflict. My heart ached that as you got one day older, it was one day closer to when I would no longer hold you in my arms. And son, the empty arms do ache with pain. Your smile that day gave us the gift of being right there in that moment with you. While the heart hurt, we were given beauty right then and there. Thank you for teaching us to see beyond what our circumstances were yelling at us.

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Another “last”

Birthday number 6 held the same emotions. We had watched your body decline so much. Your birthday always falls on or near memorial day weekend. That day our church was holding a big picnic at the park. We knew it was going to be hard to take you out for too long, but wanted to give you two things you absolutely loved: being outside and being around people. When we arrived, there was an adorable cake decorated just for you buddy. Dinosaur and all. We laid out on the grass for a good part of the afternoon and enjoyed the company, the fresh air and the snuggles with you. You were so content and looked so peaceful. It was nothing extravagant, but it was good.

As we did every year for your class at school, we brought yellow balloons for you to share and found an awesome singing balloon for you! Your brother took it upon himself to learn how to hit that balloon just right so it would sing for you over and over and over again. You boys always had each other’s backs.

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Every year when this day approaches, I struggle. I think of how this birthday would’ve been if we still had you here. I know you’d never be able to celebrate your life here like you are in Heaven. I’m relieved, thankful and filled with hope that you are fully healed. But my mind wonders at what it would’ve been like to have had you without Batten Disease stealing you away. To have celebrated your 9th birthday as a typical 9 year old. I wonder at what your interests would’ve been, what you would’ve requested for your favorite meal, who your friends could’ve been. It hurts to not be able to wake you up singing a goofy version of happy birthday and kissing your cheeks and tickling you. So many emotions run through me in a single space of time; anger, joy, sadness, confusion, hope, and so much love.

Each year, we start the day with your favorite things. On your 7th birthday, the movie Land Before Time was the first thing to go on. I needed some dinosaur noises in the background. I drank tea out of my Lion King mug remembering how much you loved that movie even after losing your ability to communicate. You’d laugh so hard when you heard the opening note of Circle of Life.

This year we celebrate your birthday with the family. Being together was your favorite. And so, for your 9th birthday, my son, together is what we’ll be. With some chocolate cake, a spattering of yellow – your favorite color, and spreading joy just as you would!

You find a way to be on my mind all the time. And I miss you, all the time. I know, without a doubt, your adventures are great in Heaven. And each day that passes is one day closer to getting to feel one of your big giant-sized hugs once again.

Happy Birthday, Titus.

Love,

Your momma

Friends, this year for Titus’s birthday, we are doing a big book cover reveal of my debut book, our story. Titus taught us the true meaning of joy. We want to shout from the rooftops about the hope and joy we have found in Christ throughout this journey. Please join us for the cover reveal on May 28, 2019 and for updates on the book as we get closer to our publishing date the fall of 2019! Click here to sign up for the newsletter. Get the first glimpse at the cover, helps us share it, and stay up to date on the book!