The Story of Dax Wilder

November

Our little guy is 21 months old! Dax is looking more and more like a big boy; he has changed so much this year. He now has 8 teeth and is seeing things from a standing position! We’ve been working closely with a great equipment company and Dax now has his own standing frame. Benefits of a standing frame include:

Improve cardiopulmonary function.
Reduce muscle spasms.
Increase range of motion and prevent contractures.
Improve posture and manage scoliosis.
Prevent loss of bone density.
Improve bowel and bladder control.
Increase strength in trunk and lower extremities.

I choose to list all of these benefits that Dax will experience because something as simple as standing shouldn’t be taken for granted!

We closed out our summer visiting family. Dax met the rest of his cousins and experienced the Missouri State Fair. He also met some extended family from Michigan and our closest friends in Northwest Indiana, and visited Lake Michigan for the second time. We’ve been on the go a little more and it feels so good to be out and about! Dax is becoming a familiar face at the golf club and continues to get compliments on his hair everywhere we go.

Dax has still been very talkative lately and starting to make different sounds, he makes us laugh a lot! Ozzie has noticed Dax talking more and he’s a little more inquisitive about his brother; it seems like he’s testing the boundaries with Dax all over again. Dax really enjoys bouncing, rocking in the rocking chair, and I can really get a laugh out of him if I toss him up in the air. He likes listening to music and as always, loves being outside. Since the weather has recently turned, Dax has been enjoying the lights on the Christmas tree.

With the holidays quickly approaching, we’d like to wish everyone a healthy and joyful holiday season!

18 months.

And just like that, our baby is 18 months old! Dax has been a busy boy summer! We’ve spent some time in Colorado, Dax [and Ozzie] saw their first rainbow, we’ve been to the pool, Dax has spent some time at the golf course, got a couple of haircuts, we’ve explored the farmer’s market, and he even got a big boy bed! It seems like Dax grew overnight, he’s losing his baby face – still sweet as ever.

For almost 4 months Dax seemed to be low on energy; he was very sleepy and had minimal facial expression. We didn’t hear his voice or see him smile during that time. I described it to our neurologist as Dax being “almost lifeless”.

We’re always so proud of Dax, regardless. But, it was a fear of mine that he’d forget how to smile or use his voice because it had been so long. However, Dax being the strong-willed little boy that he is, he figured it out! There’s been a trend the last 18 months: Dax keeps us on our toes. Dax getting his spark back happened completely out of nowhere! Here’s what happened….

I was holding Dax in my arms; he was wrapped up in a towel after his bath. As I held my clean, warm baby, I was complimenting him on how good he did in the bath. Unexpectedly, he randomly started babbling back! I hurried downstairs to tell Tyson the good news! Dax still bundled up in his towel, started cooing to his Dad. Tyson and I were in shock and in such a state of happiness to see him light up again. Dax’s eyes were (and still are), shining bright! Dax has had a lot to say lately, we’ve had A LOT of catching up to do! We don’t know what tomorrow will bring. But for now, we’re enjoying this uphill phase in our rollercoaster ride.

Colorado

We’ve added more to Dax’s list of travels! Even though we’ve taken every opportunity to be outside on our patio, it was time to get off of Knox Drive. Colorado is a peaceful place for us, so it was first on our list. Dax and Ozzie explored Garden of the Gods. Ozzie could barely walk after bouncing around on the trails, so while he napped and recovered, we took Dax to his first baseball game! It’s been so long since I’ve been to a sporting event, Dax and I both flinched when fans cheered — we’re used to level 22 on the TV. Dax cooed a little while at the game and Tyson had a bucket list moment of being at a baseball game with his son. All of the employees at Coors Field were so helpful and accommodating, it was the perfect place for Dax’s first game

We were even brave enough to take Dax [and Ozzie] to a couple of restaurants. Getting Dax out more, I’ve noticed people looking at our unique family and even had the experience of a stranger sitting down at our table (I won’t say anymore). No matter how many looks we get, or how many strangers approach us with questions or dumb comments, we are SO PROUD to be Dax’s parents and that will never detour us from going places. I think the takeaway here is, every family has a story. You never know what the people at the table next to you have been through.

I wouldn’t wish the trauma that we’ve experienced on any family, but I think the world would be a lot kinder if everyone had a child with special needs.

I’ve taken a step back from frequent updates on the blog, the privacy has been much needed. Dax has had a really difficult time the last few weeks with frequent choking/gasping for air/throwing up. My “mom instincts” tell me the reasons why he does this, but with Dax’s disorder being so rare, we may never know the true reasons why. We’ve gotten wake up calls at 2 or 3 am every morning and the choking fits go on for an hour or 2, some days – even longer. Each day is unpredictable, but it’s a constant reminder to stay present in each day.

Thanks to our amazing neurologist, Dax has more Botox than an LA housewife! We’re hoping and praying that with Dax having Botox in his saliva glands, it’ll slow down the production and he can have some relief. Dax has been really tired lately, we’re hoping our boy gets his spunk back soon.

Please refrain from contacting us with brainstorming or additional questions (things are complicated). Prayers are always appreciated.

April Update

It’s been a little while since an update; we’ve had so much going on! It feels good to be writing again. Since Dax’s first birthday, he’s gotten two more teeth and another haircut. And unfortunately, Dax’s spasms broke through. I’m not going to get into every detail of what has happened in the last month; But, what I am going to share is: If something doesn’t feel right, ask questions; if you aren’t comfortable giving a medication that was prescribed to your child, speak up. You are your child’s one and only advocate. Trust your gut, you know your child better than anyone else. I’m so grateful that Tyson and I have always been information seekers and have spoken up when necessary. We took some actions and Dax’s spasms have subsided for now. Thank God for Dax’s neurologist – I won’t list his name here, but if anyone needs one, I will gladly give his name if you want to email the blog.

On a lighter note, we’re “camping” again! The Dax-Mobile 2.o is all set-up and ready for another adventure. Ozzie’s ready for a vacation too!

And of course, ending the post with Ozzie. He’s counting down the days until his next “car ride”.

365 days with Dax.

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