I wanted to utilize this space to honor our faithful dog, Ozzie, he joined Dax in heaven yesterday. It’s been a very emotional week anticipating possibly having to say goodbye to our family dog of almost 9 years. Ozzie has been battling some health issues for about a year and a half now, including: 3 seizure episodes, having a collapsed lung, a bad back… and lastly, left side heart failure…

Ozzie had a great weekend outside; Bodie had friends over and Ozzie thoroughly enjoyed being around the kids and being apart of the fun. He got a lot of extra hugs and snuggles that day. And then he steadily declined all week; no longer eating, barely walking, and to the point of Tyson carrying him from the house to the yard to go potty and having to carry him back in. He was also having difficulty getting up from his doggy bed.

We adopted “Easy” at just 8 months old. A family posted him on Craigslist desperately wanting to get rid of this dog that they couldn’t potty train. The owner was getting ready to have a baby and she couldn’t handle the stress of this dog, he was living his life in a travel kennel. We adopted him and with a couple of strict months of training and name change, “Ozzie” was potty trained and beginning to relax and find his place in our home. He was the protector on the patio, letting the neighborhood always know who’s boss. He enjoyed chasing fireflies in our backyard, loved snuggling on our laps on the couch, he loved ice-cream, hated pickles, and was a polar bear in the winter. He LOVED rolling around in the snow. We’re so very grateful for the winter we had, Ozzie could experience the joy of the snowfall and roll around and play (Tyson and I watched Ozzie roll with excitement as we both talked about how it could be his last winter). In the warmer months, Ozzie loved playing in the waves in Lake Michigan, I have never quite witnessed the zoomies like I did the day that Ozzie saw Lake Michigan for the first time. Lastly, he wanted to be included in just about everything – whether it was hanging out and watching a Chiefs game in the basement, or enjoying a warm spring day on the patio, Ozzie just wanted to be there. He had a serious case of FOMO. 

In the early years, Ozzie went everywhere with us; we would specifically look for dog-friendly restaurants so Ozzie could join. He enjoyed many patios and breweries in Kansas City, he also had a short phase of a dog-park obsession. Ozzie brought joy to everyone he encountered. And Ozzie’s life is another testament to God always being in control. We needed Ozzie just as much as he needed us. We trained him to be a Pet Pal at Children’s Mercy, he volunteered there for a few months, then we had a son with special needs. Ozzie was so in tune to Dax. Ozzie would wake up in the morning, and the first thing he’d do is go look for his buddy, Dax.   

The bond we formed with this dog is so special, we truly relied on him for support through some of our most difficult moments and milestones. He was very in sync to the emotions in our home. He clung close to us in moments where the tears just wouldn’t stop. And he always kept a close eye on me – Ozzie and I were home together for almost 5 years (with Covid shutting down the world and me being home with Dax) – he stayed up all hours of the night with me to feed and care for Dax. Ozzie would always wait for me at the bottom of the stairs and we would walk up to bed together. He was in every room I was in. Ozzie tried his best to keep up with Bodie’s newborn phase, but the old pup was exhausted most days. He’d stay up in the night and watch me as I fed Bodie and Dax, and then he’d sleep until almost 11 am. He spent many afternoons on the couch with Dax, and on the floor with Bodie while he did tummy-time (apparently not enough because the kid still needed a helmet). 

He lived such a full life with so much love. His paws touched ground in Missouri, Indiana, Illinois, Michigan, Colorado, Utah, Nevada, Montana, Wyoming, Nebraska, Iowa, Tennessee, Alabama, Georgia, and Florida. He has seen the Grand Canyon, has climbed mountains, he’s hiked trails in Colorado and Utah, he’s been to the farm, and the Missouri State Fair. Ozzie has touched water in Lake Michigan, the Gulf of Mexico (Gulf of America?), and the Atlantic Ocean, and has spent warm days poolside. Ozzie’s loyalty, joy, comfort, and support helped carry us through almost 8 months of fragile grief – and he was with us at the cemetery for Dax’s birthday.  

I think over the last couple of months, Ozzie has assessed both Tyson and I (and Bodie) – and he felt ready to be with Dax again. Tyson and I have both praised Ozzie this week before we had to say our goodbyes. He knows we are so proud of him. And it absolutely broke me to ask Ozzie to find Dax and give him kisses from us. We know dogs will always do what they can to please their owners, but in our eyes, Ozzie did so much for us, he didn’t have to do any more. 

The vet came to our home, and we shared stories with her about Ozzie. Her and I were both crying and Ozzie tried his best to walk over to sit right by the vet’s side to try to comfort her.  Ozzie was in his cozy dog bed, with Tyson, myself, and Bodie by his side. He drifted into a deep peaceful sleep, with no pain, snoring, and ran toward the rainbow bridge. 

That evening, we were greeted with a vibrant rainbow in our backyard, and there were double rainbows over Overland Park – so we got our sign from Dax, and Ozzie; we know they are reunited again and Ozzie greeted him with those kisses. After losing our son, and now losing Ozzie, it has stirred up so many raw emotions within – just picturing Dax and Ozzie being together again, and feeling more emptiness in our home. But we will hold on to the peace of knowing that Dax has his sidekick again, and they are running side by side in fields that never fade, with joy in their steps, chasing dragonflies, butterflies, and fireflies. 

[And I know Dax and Ozzie will find the best beaches to explore].   

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.  

I’ve been hesitant to write a blog post – our  focus is always on Dax’s health and comfort, and writing about updates can wait. There are many emotions involved for Tyson and I. We have to process the new information first as a family and lately there has been a lot to digest. Along with updates about Dax, I try my best to utilize this space for purposeful information that may help another family… I’m going to try my best to sum everything up. 

A quick update on Dax’s overnight EEG – we’ve concluded that not all of Dax’s “episodes” that we’ve been seeing are seizures – it’s more related to his abnormal muscle tone. So we have weaned off of a seizure medication and we’re trying a new one to help improve his dystonia. Dystonia is a state of abnormal muscle tone resulting in a muscular spasm and abnormal posture, typically due to a neurological disease. Dystonia, hypertonia, and spasticity are all a part of Dax’s disorder (this has all been explained in previous posts). Dax’s muscles can’t respond efficiently to change in position; sitting, lying down, or even being picked up to be held.  His body can be triggered by the change of position as his muscles and body try to respond, and his body can get into a full on dystonic episode of extreme flexing/tremors. After meeting with our normal team of doctors, we were referred to the Comprehensive Movement Disorders and Spasticity Clinic. We are hoping that we have enough feedback from his EEG and enough experts on board that we can reduce these episodes and improve his tone so Dax can be more comfortable.

The last 3 to 4 months have been rough. Dax has been waking up in the middle of the night stiff as a board, arms flailing, and extremely agitated. His dystonia has been so off the charts that his body hasn’t been allowing him to sleep well. Most nights he’s been waking up around 1 AM and he’s awake until 4 or 5 in the morning and some nights he doesn’t go back to sleep at all. Unfortunately with Dax’s disorder – it is a lot of trial and error with medications/dosing and it requires A LOT of patience, brainstorming, and thinking outside of the box. We keep track of Dax’s symptoms, tone, mood, sleep, as well as the intensity/duration/and time of day of a dystonic episode on spreadsheets and communicate closely with doctors to see if a medication is “working” or not. Some medications can take up to 3 months to find the ideal dose. 

I’m grateful for the patient advocates that have helped us create a sense of urgency when it comes to Dax’s needs. We initially had a 6 month wait to be seen at the spasticity clinic – we fortunately were able to find availability in July thanks to a patient advocate.  It blows my mind that people think it’s acceptable for a child to wait 6 months when they are uncomfortable, agitated, nonverbal, and time isn’t on their side to begin with.  And you’d think that going to this clinic would be at the top of the list – but sadly, the system doesn’t work that way… you have to absolutely exhaust all options before something like this is brought into the picture (once again – this all takes A LOT of time). It’s frustrating as a parent and even more frustrating for the child. Dax is so strong and patient, and still rarely complains after all that he has been through.

If you feel like your needs aren’t being entirely heard or met, don’t hesitate to reach out to a patient advocate – believe it or not, just about every hospital has them! Even though we are being the best advocates that we can be for Dax, sometimes even we need a little help. Along with advocating for Dax’s medical needs, we have also been doing a lot of research in our state for benefits that Dax is eligible for. 

We now have a handicap placard for our vehicle when we take Dax out – it’s difficult finding a parking spot that is wide enough to get Dax out of the car and into his adaptive stroller safely. We also have Dax enrolled in the medical customer program with our energy company – if our power were to go out, there is a medical alert on our home since Dax has medical equipment. Also, if you do have a child with special needs/disability, search for waivers available in your state and look into community funding. Our system is so broken and these kind of things are not easy to find or readily advertised. Therapies are expensive, equipment is expensive, and you may be eligible for a financial break.  

Dax seems to be responding well to the new medication. We’ve seen the spark in his eyes again and he is smiling. Some days are still difficult, but seeing his personality shine through brings me a little peace. 

I’m not quite sure where to add this in on this update; but just throwing this out there from our experience: Just a friendly PSA… If you do see a family in public with a disabled child, don’t bombard the person or their family with questions. If you can’t figure out what to say, then maybe just stay quiet. The disabled child shouldn’t be treated like a spectacle of a human and put under a microscope whenever they leave their home. This is a simple reminder to be kind and it’s okay to be different. We had some awkward/uncomfortable situations earlier in the spring; I’m just going to blame it on people getting out of the house for the first time since winter and not really knowing how to behave! Ha-ha-ha..

Aside from the medical stuff, the rollercoaster that Dax has been on, and the people that say dumb things. Dax is still getting out and about! He absolutely loves the aquarium. We’ve enjoyed being outside in the warm weather, we’ve had play dates with friends, and have spent time with family.  Dax has a great summer set-up thanks to Variety KC, so it makes it that much easier to leave home and be more mobile! 

Dax recently helped celebrate his brother’s first birthday. This past weekend we were able to get together with family and friends. It always worries me that Dax may feel left out because he’s unable to run and play with other children. But all of the kids made their way over to Dax and talked to him throughout the afternoon and everyone made Dax feel far from excluded. As a parent you always want your child to feel accepted, and this past weekend made my heart so happy. 

We hope everyone is enjoying the last bit of summer before school starts!