August 8.

Today was a big day for our little family. Dax turned 6 months old! It’s such milestone for us (especially for Dax), considering we met with hospice on our last day in NICU. Our lives are much like rollercoaster; Dax is up and down, and I’m up and down. Tyson exceeds at every level at keeping my amusement park of emotions level, I lean on him A LOT. We both try to keep Dax’s rollercoaster on cruise control; steady and comfortable. Some weeks that means many doctors appointments, sleepless nights, countless trial and error moments, and between all of that – each day is high alert. Having a baby that’s unable to swallow means that Dax is ALWAYS in our sight so we can make sure he’s not choking.

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Tyson’s reflection on Dax’s {1/2} birthday:

When Dax was around 1 week old we had a neurologist, neonatologist and a remote geneticist come into his room to discuss his medical findings. One thing I couldn’t understand was how he could breathe on his own, regulate his temperature, digest, and do all of the other “baby things”. Aside from eating, he was doing everything else all on his own and I just couldn’t figure out how. I’ll never forget when I asked the neurologist if he was surprised Dax could do all of these things. Without hesitation, he said, “No, the fact that Dax made it into this world is a miracle. The strength he had to make it through birth is extraordinary. It’s a true testament to him and to his mom for providing him with the nutrients and energy he needed to make it into this world.” He’s 6 months old today! How crazy?! One of Dax’s symptoms is being severely hypertonic. Hypertonia is a condition in which there is too much muscle tone. Muscle tone is regulated by signals that travel from the brain to the nerves and tell the muscle to contract. Dax’s hands are always clenched (usually only relaxed when sleeping or if he just gets his meds). We peel his little fingers apart so he can pet Ozzie. His arms and legs are also stiff and difficult to move. The comparison we were given is that Dax is running a marathon EVERY DAY. That’s right, every single day Dax is running a marathon. Can you imagine that? Could you imagine being brought into this world and your only choice to live is to run a marathon each and every day? He’s ran a marathon for 182 days straight!

Tip your cap to Dax, he deserves it.

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Tyson and I always tend to look at the situation God gave us and what we can learn from it, what Dax has taught us, and what motto’s we want to live by. We can easily say that Dax has taught us more about life from February 8th to now, than we’ve ever grasped in the last 25 years.

Today on his {1/2] birthday, I woke up with him around 4 am to feed him and I sang Happy Birthday to him as he gazed into my eyes… We had flowers and a balloon delivered to the house for his special day. Dax was able to see a big colorful balloon for the first time. I put his face up to his little bouquet so he could smell the fresh flowers. We had a day filled with relaxing and snuggling, watching movies, and a bubble bath. As Dax napped off and on we watched everything that Tyson picked out; a documentary, a comedy, and we ended our movie day with a rom-com (my favorite!). Dax and I danced in the living room to No One by Alicia Keys (it was the song playing toward the end of the movie she produced, Resort to Love).

As I spun my happy 6 month old around in the living room, I sang along to Dax and before I knew it, I sang the words “Everything’s gonna be alright”…. and then it clicked – that was the sign of reassurance I needed. Everything’s gonna be alright… no matter how difficult some of our days are.

One of the life lessons that we’ve learned from our sweet Dax is – there’s joy in each day, even if you have to search a little harder to find it. It’s always there. I’ve said it before and I’ll say it again, perspective is everything. We spend a lot of our days searching for those little sparks of joy.

And lately, we’ve found a lot of joy in hearing his little coos when he’s happy.