Some of you know that Elliott, our almost one year old (how does time fly), was born with a rare genetic disorder that causes his liver to not take in all the necessary vitamins. At two weeks old we started testing Elliott because we knew something was off in his pigmentation. He had a biopsy at two months and there was no clear answer. David and I were told, when Elliott was four months, that sometime in his life he would need a liver transplant. To say our hearts ached is an understatement. Then a couple months ago, Elliott’s weight was not increasing and his labs were not ideal so we were advised to put him on the transplant list.
At the beginning of June, Elliott joined the transplant waitlist, a list I never thought in all my life I would be eager, sad, and optimistic to be on. But this is what life is all about, rolling with the tides instead of clinging to the shores of our expectations.
Currently, he has a feeding tube, so he will gain weight. He has been labeled as “failure to thrive”, which I am still not owning and trying to come up with a better term that the western medical system can use. Ideas welcomed! He is talking/singing, crawling, climbing up stairs, taking steps with assistance, laughing, and enjoying life like any other one year old. I am in constant awe of him! He is the bravest person I know. Ellie has weekly hospital visits & blood drawn and still enjoys this world. I love him dearly. His spirit radiates.
I feel humbled by this experience to say the least. There are times I look at myself and feel like the wind has been taken from my sails, exhausted, grieving, and overwhelmed. Then times where I feel so connected to the importance of life, loving someone fully, being present. It’s emotional but I’m trying to channel it for yoga classes and my own personal growth. I feel like we have two options when faced with anything (especially difficult situations) to either think that it’s happening TO us or that it’s happening FOR us. It’s this mindset that keeps me healthy. And love, LOVE always helps.
All this is to say that I may be leaning on you more for love, support, and intention-settings for Elliott and his unknown donor. We are on call 24/7 so I will keep my phone visible when I teach and may have to pause to take a call. We have one hour to respond and this is not a call I can silence. It is vital for my babe’s life.
How you can support/love Elliott and our family
- Please continue to practice with the teachers who are supporting me while I am with my family during this time. I am forever grateful for the teachers at Yess Yoga. They have stepped up for me these last few months beyond words. I am deeply indebted to them and their love. Your presence at their classes means so so much to me and to them. Thank you for trying new teachers! It really makes my heart burst with joy.
- A sincere smile or warm hug is ideal. It has become really exhausting to talk about Elliott’s health at times. It is on my mind a lot so being at Yess and teaching is a really needed break. I want to be at the studio with and for you. An email saying you are thinking of us from time to time is perfect! *I may not write back but I am forever grateful.
- Lastly, we fully believe in intention setting. Thank you in advance for including Elliott in your thoughts. One that I have said recently is “May Elliott have the healthy liver, transplant, and recovery. May his donor and family be surrounded in love and gratitude. May we continue to appreciate the unity that we are woven into and may we continue to love each other fully.”
Thank you for holding Elliott and our family in your heart.
With lots of love and gratitude