The Journey of Gage Tatum Keith

I will be so glad to get this OFF my plate!!!

Gage’s simple cake from yesterday. After NOBODY came to his 2nd birthday party 9 years ago (except for his grandparents who helped me set everything up) I put a stop to those altogether and he hasn’t had one since. He gets a simple celebration on the day of and an adventure the weekend before or after. His big birthday adventure this year will be to Chattanooga and I’m excited for him to get to experience their aquarium. He’s going to LOVE that amazing place and I’m so thankful for another year with my sweet boy. Parents of medically fragile children know all too well we may not get another one so going big and celebrating this milestone each time we’re allowed to is super important. 🥰

You are loved, my son. And your mommy’s love is so strong that it’s all you’ll ever need. No tons of friends or stressful parties required.

Mama’s got you, always!! 🥳

💚🦓🩷Rare Disease Day🩵🦓💜 is something that means so much to so many of us as it gives us a chance to bring awareness to those who’ve never experienced life with a rare gem and also build community amongst those of us who do/have. 🥰

My son has one of the rarest genetic disorders in the world, ZTTK Syndrome, with less than 100 cases having been diagnosed worldwide as of 2023. Gage was 4 years old before he finally received his diagnosis through an advancement in genetics testing and we finally began to understand what we were working with. I found an online support group for parents all over the globe of ZTTK children and it literally changed my life, bringing a sense of belonging after feeling alone for so long. It’s a club none of us asked to join but regardless we are here and in this thing together and we each do our best to give our babies the best quality of life we can. Our rare babies teach us so much and they are fiercely loved. We also learn tremendously from each other. Here are some links to the ZTTK nonprofit organization and some info on Gage’s very rare disorder. I hope today brings much education, empathy and love to all who are rare in our communities. 👨🏻‍🦼🦓💖

https://zttksonshinefoundation.org

#2024

*Today, I am 10! An entire decade old!*
HAPPY BIRTHDAY SWEET GAGE! You are so very loved, mommy’s answered prayer.

Halloween 2023

Sweet boy’s first day of school, 4th grade!

Shriner’s Hospital is by far the most exciting hospital to go to. They really take the best care of their patients. Gage’s appointment went alright yesterday. His left hip is still turning out but we are not ready to discuss surgery yet. His doctor does not want to put him through that unless 100% necessary. We’ll be trying new orthotics and more PT instead. 🥰

That face. 🤌🏻

POSTED FROM MY DAUGHTER!

When you have a medically fragile child, it comes with a grieving process. You mourn every single thing your child has been robbed of, what you’ve been robbed of, over and over again through denial, depression, bargaining, and anger until you finally reach acceptance and come to peace with what is and what will never be. It’s actually quite beautiful once you reach acceptance because you finally allow yourself to enjoy your child as they are without comparison to everyone else’s children or sorrow for the countless things they’re missing out on in life. You learn to find connections with other parents like yourself and there’s a relieving sense of normalcy as your life adjusts to the wild card you’ve been dealt.

Sometimes though, things happen and you’re thrown right back into the grieving process and a whirlwind of emotions. I don’t think anyone who’s not in this position could ever truly understand what it’s like to wonder every day if you’ll get to keep your child into adulthood and if so, what that will look like. The odds for our children living long lives are not great and while some things are wonderful, like getting so many keepsakes and projects from places like their school or hospitals or doctor’s/specialist visits, it’s also depressing knowing deep down they do it because for many parents the keepsakes will be all that’s left besides what’s kept in memory. Death is common. The realities are brutal. Children pass away with the same genetic disorder as your child and you grieve so hard knowing tomorrow it could be yours and there’s nothing you can do to make it better for your fellow special needs parent going through life’s most unimaginable pain. Seeing medically fragile children get sick or having something like a seizure break through impacts the entire special needs community because we are all connected through our similar experiences and we all root so hard for each other’s children. Their milestones feel personal and so do their setbacks. I’m sending so much love to so many people in our community right now. Especially my sisters in the mother role, it’s the hardest thing in the world to grow an entire little human inside your body and be forced to watch that little miracle suffer and struggle when you love them so very much. It’s a helpless feeling and not something I’d wish on anyone, ever. My mommies grieving the loss of their children, the ones struggling with their child’s medical complications, the ones doing everything they can to hold it all together… I see you and I love you and I’m thinking of you. Even my mommy (and daddy) friends who have lost children that were not previously special needs. I see you and I pray for you. I may not respond to everything I see but I’m constantly sending good energy and love. I’m blessed with not only a strong ZTTK family but also many, many more special needs parents of all kinds. It’s a kinship like no other and I’m so thankful to have a support system in others all over the world. It’s amazing how deeply we can touch others we’ve never met in person and how connected we can feel to them. They‘ll never know how much they helped me to reach acceptance and feel loved. 🫶🏻💖