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We survived year one. 8-30-21

It has been 365 days since D-Day. The longest but shortest year of our lives. The days (and nights) are ever so long I sometimes don't know how we'll survive the next, but we make it through. As the days are long the weeks and months are so short. I don't know how a whole year has passed already.

It was only a year ago we were so clueless about how hard life could truly be.

It was only a year ago Axel was up playing video games and shouting across the room for more popcorn.

It was only a year ago Axel would go up to Ryder and give him the biggest tightest hug he could.

It was only a year ago Axel would yell HORSEY anytime we were on the same roads we would take to the farm.

It was only a year ago doctors were telling me not to worry, he was just growing at his own pace.

It was only a year ago therapists were telling me he just needed to strengthen his muscles.

It was only a year ago doctors were telling me they wouldn't see Axel in office because his decline was slow and gradual that it wasn't as big of a concern as compared to covid.

It was only a year ago our whole world came crashing down because no one would listen sooner.

I wish time would slow down for the sake of we never know what tomorrow will hold for us. We don't get to enter the next day, week, month or year excited to see what great achievements we will get to see Axel complete, i.e. preschool, sports, making new friends.. instead our days are filled with worry, fear and sadness. What will he lose next? What medication is going to be added next? What kind of equipment will we need next? We have how many doctor appointments this week? I know we like to say and think this is still Axel, he still is who he was before MLD, but the truth is.. he's not. This isn't him. This isn't who he's supposed to be. Before MLD he was wild, had no cares, would do anything to keep up with big brother Ryder. As he still has his ornery personality it doesn't get to show how it used to. He doesn't get to do all the things he used to love as much as I try to make it work for him. I know he would love so much to be jumping on the trampoline with Ry, scaring the shit out of me. Shoving his face full of chips and queso from our favorite Mexican restaurant and I know he would love SO much to be going off to preschool thinking he's the coolest kid on the block. But he doesn't get to learn to love those things anymore. I know I could try to send him off to a "special" preschool for kids like him but I know he won't get the kind of care he needs and deserves from anyone else but his parents. It's just too scary knowing that NO ONE knows how to handle a child with MLD. It's just hard. Everything is hard for him, for us. I know it'll never get easier, we just have to learn to live with this disease ruining everything.

It's especially hard for Ryder. He shows it in the smallest of ways. After leaving Axel's Make A Wish party Ryder asked "When will Axel be able to talk?" I had to try to tell him without crying that he'll never be able to speak without using his eye gaze device because of MLD. He was so upset, he said NOT EVEN WHEN HE'S 30?! I had to tell him no, not even at 30. His eyes filled with tears and he said I JUST WANT HIM TO BE ABLE TO TALK. And it crushed me. Occasionally he'll ask me "is Axel going to be ok and make it through all this?" Of course I have to tell him yes that Ax is a tough man he can fight through anything, but we all know the reality. Ryder is the most caring and in-tune brother, he loves him SO much and for that I am thankful. I am glad Ryder is growing up to be such a kind and caring soul. He will never look at another kid as being weird or different because they don't look or act like him. But I also struggle with this. Ryder sees EVERYTHING and is wise beyond his years. Axel needs so much of us I just hope through it all Ry forgives us for always seeming to get the short end of the stick. Most days I'm so exhausted giving 100% to Axel I don't feel like Ryder gets as much of me as he needs. It's very hard mothering two completely different types of children.

As for Colby and I, we have grown into a certain type of parent of this last year that I could have never imagined for us. We have grown so strong, together, for Axel. To make sure all of his needs are being met. Becoming completely selfless over this last year. Of course most parents become selfless after having kids but being a parent to a medically fragile child is a different kind of selflessness. I wish we didn't have to figure out this kind of parenthood but we are. We will continue to fight and advocate for him with all of the strength we have.

Although this last year has created many, many sad memories for us we have found some good to pour ourselves into. And that is advocating for MLD kids everywhere. I will do everything in my power to advocate and raise awareness for MLD until this disease can be stopped. No parent or child should have to learn to live with such a terrible disease so we won't stop screaming Metachromatic Leukodystrophy until it is heard and cured.

Lastly, I just want to thank all of our friends, family and strangers from near and far who have shown up and shared their love and support with us during this hard time. Knowing Axel has a complete army of people here to fight for him makes this war just a little bit easier for us. Together we are #AxelsArmy




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