Recovery from surgery has been going well. I am still sore but managed to get myself to school and to our monthly Kai’s Village meet up on Thursday. It was a long day, but I did it!
School was good. I don’t think I missed to much on my first day. It was nice to meet my classmates and get a feel for how the year is going to be. Busy I think!
I had two classes,Business Management and Anatomy and Physiology. Both teachers were great and we spent time in each class talking about what got us interested in massage and what we think our focus might be. For me this was a welcomed, open invitation to talk about Kai -after all HE is the reason I am doing all of this.
In my morning class our teacher was talking about different internship sights and he mentioned Why Me?/Sherry’s House. I took the opportunity to tell the class that we are a Why Me family. That I started going there last year after my son was diagnosed with an inoperable brain tumor, and that I had been given a massage by a Bancroft student who was there on his internship!
I’m not sure many people really understood what I was saying, what it really means to be Why Me family. Or maybe people just din’t know what to say. But at least it was out there.
I go to Sherry’s House as a parent of a child who had pediatric cancer. I HAD a baby with a brain tumor.
Later in the class we went around the room talking about different specialties within massage and what specialties we each are interested in. This was my chance to clarify. I talked about my interest in working with people undergoing treatment for cancer and children with complex medical needs. I talked about how beneficial integrative therapies were to Kai in his treatment and to me as his mom. I talked about Lucy’s Love Bus and early intervention and Camp Sunshine and Whole in the Wall and Perkins. I talked about the benefits of massage in palliative and hospice care, a sect of this that I am especially interested in since Kai’s passing. I told them that Kai died in November.
It was a long strange day. Physically tender from surgery and emotionally vulnerable -hiding behind the lingering post-op haze which protected me from fully feeling my first real day living a life that Kai does not live in.
At lunch a few of my classmates were brave enough to ask more about Kai and our experience. I really appreciated that and talking with them one on one made it that much easier for me to explain it all again to the next teacher in our afternoon class. The second time I was more concise and to the point. I was able to focus our story as it relates to my goals as a Massage Therapist. It was one small step into normal life conversation and it was ok.
Kai will be the reason I do most things in my life from this point forward. His life story will always be a defining description of who I am. It was so much easier when he was here by my side. I didn’t have to explain so much or reach so far or reign myself in. It was all right there. The wheel chair and the feeding tube. His big brown eyes and blond hair resting on my tired shoulder. It’s hard to walk in a world where people can’t just see it. Where I don’t look like a mom, a caregiver, a nurse, a therapist.
At times I do ok and at other times I welcome the protective cushion of the fog that often surrounds me.
By the end of the day I kind of felt like a walking disaster, tired and groggy, excited and exhausted all at the same time. On my drive home I couldn’t help but think back at what an outlandish story I have to tell these days. How crazy I must have seemed limping around three days post-op, talking about my dead baby and cancer all day.
That night we had our monthly meet up for Kai’s Village. This month we had a Valentines Pasta Diner with our favorite entertainer Mr. Kim. The night was a success. The kids had a blast with Mr. Kim (as always) and I was able to visit with friends and family.
My life is often hectic and sometimes sad and may even sound a bit crazy at times, but I wouldn’t trade it for anything. Everyday I am thankful for the people and experiences that Kai continues to bring into my life. Everyday I am thankful that I now live with a purpose that I never knew I could have. Everyday I am thankful for knowing myself so much better, limping, tired, foggy, hazy, crazy, happy, smiling, determined, or otherwise…because of Kai.
Mr.Kim entertaining everyone!
& Hand made Valentines to be sent to the kids at UMass <3
Anonymous
The purpose that you live your life with is ….AMAZING!!!!!!
Alissa
Congratulations again on going back to school!!! Your love for Kai continues to emanate from every word you write or share. You are the best Mother Kai could have ever wished for.
etrevallion
Kerri – you continue to amaze me! Kai is so very proud of his momma, I’m sure. The pasta dinner was so much fun – my 3 year old is still talking about Mr. Kim – and we were happy to be able to support, if even in just a small way, such an amazing cause.
Anonymous
Kerri, I think of you every day. I continue to pray for you and your family. I am so happy that you are feeling better and that you made it to school. I believe this is your path. You will be a great therapist, and Kai’s love will work through you touching precious lives and helping so many. You can do it Kerri. You and Kai.
another mama
Kerri, you are so beautiful.
Anonymous
My son will randomly mention Kai on our morning trip to daycare. Randomly he will say out of the blue :”Mommy, do you remember Kai, the little boy in the hospital?” And, he’ll stop there. Will not say anything else. Must be little signs from your Kai to let remind us of your love for him, of him being okay, and of us moms not beating ourselves so hard at times. I just felt an urge today to share this with you. I hope you continue to live with a purpose knowing that Kai is propelling you forward, always. Love. Etel
Jen Scovil
You are an amazing & beautiful person & Mother
Anonymous
Thinking of you daily…I am just in awe of you. Much love…
Anja
Dear Kerri
I haven’t written a comment in a very long time. Not because I stopped reading or stopped thinking of you or keiki Kai – but because I was sort of ashamed. Ashamed of being tired, exhausted, unmotivated and more of those things, when you – with every reason to feel desperately at a loss – keep going with so much strength. When I read that you had to have surgery and that your christmas holiday included a trip to ER, I really thought, how much harder can it get for you? When will you be allowed some rest? But there you go – starting school three days post-op, having the strenght to talk about Kai and to put in words that what hurts so terribly. That he is gone from your side. That people do not simply see that you are the mum of a sick little baby. But that you need to tell them what defines you. At the risk of repeating myself endlessly: I admire you, I am in awe of your strength, your determination and your sense of purpose! Kai must be so proud, he surely sits up there on a cloud with his little friends and points out what his beloved mum does to help others, to make sense, to give love. And he will continue to support you in as many ways as a little angel can (which means very many) until the (far away!) day that you can cuddle him again. I will try harder thinking of you when daily life seems to be too much of a struggle to handle, and I will try to do better because I know of you who can handle the worst hardships imaginable with strength, determination, love and grace. Thank you.
Anonymous
You inspre me, Kerri.
Love,
Randi
Kimberly
It’s easy to see in your posts that Kai is always with you. Kai is the reason you do what you do. Thank you for sharing your reason with the rest of us.
Ty
Hi Kerri – I have been reading for a little while and I have tried to comment many times but have never been able to. I’m not even sure how I found your blog through a trail of facebook links I think. You are awe-inspiring. Kai is a beautiful child who has changed the lives of more people than you may even realize. He has certainly changed the way I parent and recently I was shown that it was fate I found your blog. A friend of mine was told her 8 month old daughter has 2 brain tumors. One in the back by the cerebellum and one on the left side. She recently underwent surgery for the larger one (back) and is awaiting a diagnosis. They don’t know what kind of cancer she has yet but they know it will be chemo for the left tumor. You are an amazing person. Thank you for sharing your journey.
Anonymous
Kerri, I continue to be inspired by you, every time I read your words. Thank you for all the good you’ve already done, and for all the good you WILL do!!!
Audrey
I wish you the best in your new endeavor. You’re doing an amazing job.
Regan
You are amazing and inspirational, Kerri! I hope you are on the mend and congrats on going back to school!
Alissa
Thinking of you, I hope school is going well!!!!!!!!