Our biggest milestone. A day we didn’t think was attainable. When the neurologist told us in the NICU that most babies “expire” within the first 12 months with these clinical findings, we were in complete devastation; there are no words to describe it. It was the first time we truly experienced not knowing our next steps; How do we navigate through this? How’d this happen?
Dax was supposed to be next to me in our hospital room, but instead I spent my first night as a mom away from our baby (he was on a different floor in the NICU) and I was sobbing to my own mom on FaceTIme. I was telling her: How could God do this to me? Everything on Google says rocker bottom feet are associated with neurological problems. There’s no way this can be happening… This kind of stuff just doesn’t happen to me. If God is there for me, it can’t get any worse. It has to be okay…
Then the next morning, it got worse. “Dax” and “terminal” were used in the same sentence. I wouldn’t wish our NICU experience on anyone. I’ve grieved, A LOT. It’s taken a lot longer than the 15 days we spent in the hospital to process.
When your child has a terminal diagnosis and you’re given a time-frame, it’s a continuous thought in your mind for quite some time (at least for me it was). I remember in the beginning I couldn’t understand why God would give me a baby and then eventually take him away from me. I thought If God took him sooner, it’d all be easier. — Wrong, you’re never, ever prepared. I couldn’t handle this level of unknown; At one point I wished that God would tell me the day and time that he’d need Dax. — Wrong again, that’s not how life is lived; every day is unknown, for everyone.
On top of processing all of that, people asked questions… lots of questions (and still do – as if the blog doesn’t give enough information); they ask about his life expectancy, and ask questions about his diagnosis, I’ve even gotten: “Do you think a miscarriage would’ve been easier?” “I heard your son is dying, how are you dealing with that?” Really? I never felt depression until we got our baby home. While understanding Pontocerebellar Hypoplasia Type 8, learning Dax’s cues and understanding his needs, we had numerous appointments with specialists and had to process the new information that was given to us; I hated going to ALL of the appointments; it was instant anxiety, like PTSD. At every new appointment, we had to rehash and talk about the diagnosis and repeat everything the previous specialists told us. Dax’s physical therapist said at one of our sessions “We’ll get him to preschool!” How dare she say that? I exploded… “Did you not read his chart?” An F bomb may have been dropped too.
I feel the need to share all of this because I’m so proud of the progress we’ve made and where we are today; all 3 of us (Okay, 4 – Ozzie’s been through it too). I can’t believe our baby is one. We’ve had 365 days with Dax!!! I look back and wonder how we got through some of the days we’ve had.
Somehow with a slower day-to-day lifestyle, and slowing down to soak in the littlest moments, the days have still managed to fly by. Some days I cry that it’s already 11 pm, another day went by. Tyson and I reflected on 2021 and even through all of the difficult days, we experienced SO MUCH JOY. All of the good outweighs the bad; every single time. And with a perspective like that, we’ll get through anything. ALL of the days since February 8, 2021 have been worth it. We’ve learned so much about ourselves and life since becoming parents to our less than one in a million son. I am SO grateful that God has let me keep Dax in my arms for as long as he has. I was able to get through the dark and heavy days and feel that special bond between us. Even though I doubted God in the hospital, His plan is greater than what we can ever imagine. He knew that we needed all of this time with Dax to fully process and accept the diagnosis and learn that He is in control. And you know what? There is so much peace knowing that God is in control. I’m no longer fixated on a life-expectancy, it messes with my head every once in a while, I’m only human. As long as Dax is having good days that’s all that matters, his quality of life has been and always will be top priority.
I”m also grateful that I was able to experience pregnancy and we’ve experienced becoming a mom and dad. Not all couples are able to become parents – 25% of pregnancies end in grief. Dax has brought so much light and happiness into our lives; he’s fought every single day to be on this Earth – needing meds at 6 am, 12 pm, 2 pm, 6 pm, 10 pm, and 12 am just to be comfortable. He’s one strong-willed little boy. And we love him more than anything.
I’ve had a lot of conversations with Dax; I’ve cried while explaining to him how I’ve had to process, and in my heart I know that he understands. He may not ever be able to walk, talk, have control over his head, or have enough coordination to grab on to anything, and he may not fully engage with us – but he knows love and I am damn proud to be his Mom, and I know Tyson can say the exact same about being his Dad. His life has value and no one has an expiration date stamped on the bottom of their foot. Life’s a lot easier when you live in the moment, all of the other worries tend to slip away.
We’ve picked up on a trend that on all of our special days it’s warm outside; Hell was literally freezing over when Dax was born, pipes were bursting in the hospital, we had tons of snow and frigid temps; it was warm enough on our first day home from the NICU for all of us to go on a walk, Dax was able to breathe in fresh air. It was in the 70s on Christmas and around 60 on his birthday. Dax loves being outside and it’s just a reminder that God is present at all times. Dax received many messages, phone calls, and sweet videos on his special day. He also received FaceTime calls from his cousins. He is loved by many and he’s leaving his footprint on this world. Today and every day, we celebrate Dax.
Trust in the Lord with all your heart, and do not rely on your own understanding. Acknowledge him in all your ways, and he will make your paths straight.
Proverbs 3:5-6
The Story of Dax Wilder 