I have been delayed at responding to most and often times I choose to not say much, I am depleted most days and using the energy I have to show up each day for myself, and as a mother, and a wife.
I just want to say thank you for the outpouring love you’ve all shown us; the prayers, the phone calls, the gift cards for meals, the genuine messages, the hand-written letters and cards, the drawings, the flowers, the trees, the keepsakes, and to every single person that walked through those doors on November 7th to honor Dax, it all mean so so much to us. Tyson and I are figuring out this next phase of life one moment at a time. The days are foggy; minutes move slow and somehow the days keep passing by.
The first time I ever left Dax overnight was on July 28, 2023 — The day Bodie was born. Dax was at the hospital with us that day – it was part of my birth plan to have Dax there with us, and hopefully deliver Bodie in the afternoon so Tyson could have Dax home for bedtime. Things went accordingly and Bodie arrived at 3;38 pm. Dax was smiley and cooing like crazy! He could sense he had a baby brother. Bodie always knew that Dax needed extra love and care, he learned patience at a very young age. Bodie was always fascinated by the feeding pump and the suction machine, he loved climbing on Dax’s stander, and took any opportunity he could to be Mommy’s helper. I know Bodie is way too young to know what’s going on, but I know his heart is confused — he grabs photos of Dax off of our built-in shelves and brings them to me regularly. I know he misses Dax, we all do. But our connection and bond with Dax is very strong and it will remain. I’ve done my best at documenting each detail of Dax’s life. Bodie will always know his big brother.
Bodie and I often go sit with Dax, we’ve been taking advantage of the warm sunny days. When Bodie wakes up each morning, we look out of the window and we say good morning to Dax and talk about the sun that he helps put in the sky. And what a gift it is, that Bodie can always talk to his brother as he gets older and I do believe Dax will give him the guidance he needs/asks for. I know their bond is everlasting.
Our days are very different now, we all find ourselves looking for Dax. And even though we don’t “see him”, we feel him and see signs from our boy. My heart aches each day. I know I carry Dax in my heart, but I become sick to my stomach thinking about Dax not being in my arms again.
When you have a child with a terminal disorder and a poor prognosis from birth, you imagine every worst case scenario possible. I have feared Dax choking in the middle of the night, I have feared him passing and not being in our arms — I never wanted Dax to feel alone or afraid. I have feared having frequent hospital trips with Dax being immunocompromised, and fearing that one of those trips would result in us leaving a hospital with empty arms. November 3 was not on our radar; And I do believe in God’s plan, that we weren’t supposed to see it all coming, the “expected” was still “unexpected”. And it’s a testament on how we’ve lived life with Dax: we never knew how much time we had with Dax, we were always so grateful for each day. The real truth is, none of us know how much time we have, no one is guaranteed that 4 letter word…. Time. Our pastor told us, life is not about how many days we cram into our life, but how much life we cram into our days. And Dax’s days were full. How beautiful is that that?
Dax reached the top of the mountain peak, he didn’t plummet to the ground. He won the fight, and finished his last marathon — it wasn’t a first place trophy or a gold medal, but the ultimate gift of heaven. We are so proud of Dax, he did such a phenomenal job each and every day. He faced challenges daily, and all that he went through, he deserved the peaceful transition that God gave him. Dax’s life on Earth was a beautiful journey… We have so much that we are grateful for and at the same time, it’s heart wrenching; truly a double-edged sword. Throughout all of the fog we have still experienced clarity; clarity in the choices made for Dax’s visitation and private ceremony, clarity on how to put our son’s life into words in an obituary, and clarity in designing his headstone. Our faith and trust in God will continue to carry us through.
We made a promise to Dax since day one: that he would be in control of his journey and we’d be by his side every step of the way, and we’d always give him the support he needed to be comfortable. We wouldn’t be selfish and have Dax hooked up to numerous technologies to sustain. He would have a life of quality, happiness, and a life full of love. There is peace in knowing that we kept our promise to our son.
His care team was his Mom and Dad (we didn’t bring in nurses to help with the days/nights. It was always us). And I know Dax thrived because his care team was his parents – we were so in tune to him. And we are forever connected by a kind of love that lasts an eternity.
The pastor that we’ve been connected with feels like a parting gift from Dax. He spoke so highly of Dax and honored him in the most perfect way. I have reflected on the words that he said and I wanted to share a glimpse of that.
It was said to me by someone that has experienced the loss of a child, that when you lose a child, it redefines you. As they take a piece of your heart with them. We do ask that you give us grace and patience as we navigate this next phase.
The Story of Dax Wilder 