It is hard to believe that we are nearing another Christmas holiday. Since I transplanted to the South; things have not been so cold, but it is amazing how quickly your skin thins. Now, it turns 60 and I pull out the down jacket, where as in Chicago, that would have been a heatwave. Which reminds me how very much our bodies and our minds work in unison. Being creatures of habit, we rapidly adjust to the conditions around us and do what we can to keep forging.
Adjusting to the World to Keep Going
That has been Tayt’s entire existence. Tayt was born pre-internet, before you could ask Dr. Google what was going on, before community was able to tell their story. We were in limbo guessing why she was sick, what we could do to help her, what would “fix” her inability to grow. We didn’t know that we couldn’t. When I was pregnant with Tayt, for the first two months, my appointments were like Groundhog Day. Since I had had some loss before being pregnant with her, I was monitored very closely. I went in every week for ten weeks to be told by the newest ultrasound technician “congratulations, you’re six weeks.” That was Tayt’s story. Her uniqueness started at the first few cells of life and has not stopped since.
"Just How It Is"
Just like I took the extreme temperatures of the Midwest as “just how it was,” that was how we took Tayt’s size, her inability to eat, her difficulty breathing, it just was what it was. For many years, we necessarily had to isolate ourselves against cold and flu season shunning the world, being vacant in our own lives. We became “accustomed” to all the things that we had to. Your body adjusts somehow, your mind hopefully follows suit, and when it doesn’t that is when you break.
Every Day A Battle For One Extreme to the Other
So many times along the journey with Tayt, I have looked to her, at her, and thought how does she do it? How does she take surgery after surgery? How does she roll with the need to go to different hospitals, ERs, physical therapists, occupational therapists, speech therapists? Just like the extreme cold; her day-to-day was one extreme after another. If I want to be honest, it still is.
Her First Thought is Others
All throughout it, she doesn’t want to bother anyone. She sends people messages every morning “Good morning” and then before you lie your head at night “Good night.” She is the very first to look at a mess in the house, one that she hasn’t made, and clean it, not because she isn’t used to messy, chaotic, tumultuous, but because she cares for me. After all that she has endured, been through, survived, her first thought is never herself, it is me, it is those of you who know her, and it is those who ever had the chance to meet her.
Triumph Over Tragedy
This venture to put her art out into the universe is one that puts our family in the limelight again. It is one that asks us to put her on-stage, so to speak, to speak the truth of what she has endured, to be honest about our trials and tribulations. We do so, not willingly, but because we believe that there is a higher purpose for her suffering and for her father’s suffering. We believe that wrapped up in her story is not tragedy; it is triumph.
Pure and Uncommon Kindness
Tayt’s story has been written along the way, documented, poured out, agonized over and it is now time for it to see the light of day. Only in really understanding what she has gone through, can people see the true miracle that she is and all the gifts that she is supposed to give to the world. It isn’t just her art; it is her spirit, her naivety, her innocence, and her pure and uncommon kindness that is rarer than her Primordial Dwarfish, her cancer and her plight.
The Hope4 Tayt Charity Seeks to Take the Burden of Others
The Hope4Tayt Charity isn’t just hope for Tayt, it is hope for the millions of people out there who are suffering, in turmoil, isolated, in need of a helping hand, yes, and in need of some true empathy. Tayt and my wish in forming the charity was to do for others what has been done for us; show compassion, have heavy shoulders, and make other people’s loads lighter. If we distribute the burdens of others, it becomes manageable and way less scary. Life shouldn’t be scary, lonely, filled with anxiety and fear; it is meant to live, and if Tayt’s story resonates in one person, then that is fate doing its thing.
Aid Us in our Passion
With year-end approaching, we hope that you consider helping us get the Hope4Tayt Charity off of the ground and aid us in our passion to help others. We promise that it will make a difference; every little bit counts, emphasis on “little.”
Have A Healthy, Safe, and Unburdened Holiday Season and 2024...
Thank you and we wish everyone a healthy, peaceful, safe, and unburdened holiday this year.