“My name is Kai. My last name is Fairy Princess!” she’ll tell you. She’s a happy, spunky preschooler. You’d never know that when she was 4 months old, Kai received a liver transplant because she had biliary atresia. Her daddy donated part of his to her, saving her life. Read About Kai on her mom’s blog to get a picture of what a little girl with a life illness is like. Seemingly healthy on the outside but living a life just like I did at her age – adjusting normal to mean meds, hospitals, tests, procedures. Growing up thinking that is normal. Oh, to be that innocent again. To be too young to realize that your normal is not normal. Stay young, sweet Kai. Stay young.
Jasmine, Kai’s mother, keeps a beautiful blog chronicling her daughter’s journey. I asked if I could share one of my favorite posts of hers, and she gave me permission. I think everyone needs to understand what mothers/fathers/parents of “sick kids” have to go through. Now at 24, I’m really realizing that it wasn’t only me suffering for all of these years. It must have been hell for my parents. I wonder if some days still are hell for them. None of us signed up for this, but together, we draw strength, and we get through whatever is coming up next. I hope you enjoy this post by Jasmine and visit her sweet blog. I would love to meet the Hollingsworth family one day and give Kai a big hug.
Watch this sweet video of Kai…
Now without further ado, here is “Once a Liver Mama, Always a Liver Mama” by Jasmine Hollingsworth. I dedicate this to my Liver Mama – you know you’re not alone. Thank you for always fighting for me and for never leaving my side. Only a few months until you’ll be a Liver Mama of 20 years. I love you, Mom. I wish you could be some other kind of mama, but I’m glad I was blessed with you. I can’t imagine going through these years with anyone else by my side for every single moment of fear, all of the pain, and even the bright beacons of hope. We have a unique relationship because of the battles we’ve fought hand in hand for 19 years, and I treasure you all the more for it.
As I sit and keep a distant, online vigil for a baby and a family I have never met, I am forced to reflect.Liver Mommas: We support each other. We share our stories, our joy, our pain, our disappointments, our triumphs, our hope, our advice… But, most of all, we share the experience of having a child with a life-threatening liver disease, more often than not, leading to transplant and the life-long trials and complications that come with that.When someone announces “THE call has come; a match has been found!” We rejoice. Those of us who have been through transplant feel the excitement, the anxiety and the rush of conflicting emotions that we remember from our own experience. Those who have not, I imagine, feel the excitement and hope, fear and longing that goes with the waiting and watching your child grow more ill.When we hear “There are complications, we need prayers!” We bow our heads and fervently whisper words of love and hope to be carried to heaven, knowing the fear and the way time freezes as you wait to hear that, hopefully, everything will be okay.Sometimes, with a profound sadness that cannot be expressed, we receive the devestating news that a tiny spirit was too great for this earthly world and was called to heaven. Those of us who have never experienced this have a mixture of emotion… grief for the life lost and the family, a desire to reach out to comfort where we know there can be none, a gripping fear in the knowledge that our story could have followed the same path (and maybe still could), guilt that we were “the lucky ones”, and a renewed appreciation for the life of our own children and each day we are blessed to spend with them.To those of you waiting, we know it seems endless. We remember the hope and we hope with you. To those of you recovering, it’s a long road, but you and your child will get there. One day you will look back at how far you have come and marvel at all that has been accomplished. To those of you who have come out pink and rosy on the other side, we celebrate and cherish each day with you, knowing that tomorrow could bring new challenges and fears. To those of you who have experienced the loss of your precious baby, I have no words of comfort; saying that I’m sorry for your loss does not even begin to adequately cover the depth of my empathy.I can say this, though: Once a Liver Momma, always a Liver Momma.