It’s been a shitty week.
About a year and a half a go we met a little boy, Eli who was the same age as Bo and has a complex medical history like Bo. He has mitochondrial disease and spent as much time as we did (do) in the hospital. I got to know his mommy, Heather, and we could chat about Medical Stuff. It’s nice to have someone I can talk to about everything, without explaining all the details as I go, and who understands what it’s like to parent a child with a serious illness. Eli and Bo have all the same doctors. Almost every single one of them refer to Eli and Bo as “the two boys who keep their brains busy” as they navigate the next steps in their medical care.
Eli passed away on Sunday at KU Med. He was three years old.
Elias Richard “Eli” Tomkins December 1, 2009- April 28, 2013
I can’t tell you how much Eli’s death has messed with my heart and mind. How and why did this happen? It’s not supposed to be like this!
I think part of me is so freaked out because we’re in an eerily similar situation as Eli: we don’t know why Bo has what he has or exactly how to treat it. Obviously, we treat individual issues as they come but there’s no actual treatment for IPEX. There’s no actual cure.
I can’t imagine losing a child- not Bo, not Brooklynn, not Johnny, not Leksi. My brain can’t process those scenarios. I’m trying not to let scary thoughts get the best of me but it’s hard not to wonder what’s next for us? Where do we go from here? How much longer can Bo’s little body handle all it has to endure?
Eli was a WARRIOR. He was a fighter and he battled things no child should ever have to fight. It makes me so angry. No parent should have to plan their child’s funeral! I was meant to be Bo Mommy and I will always be grateful that I get to be Bo’s mommy…but it’s damn scary.
There’s a song by Rascal Flatts I Won’t Let Go that I always go back to. Read these words. This is how I feel about being a parent to a sick kid!
“I Won’t Let Go”
That cuts a path
It breaks your will
It feels like thatYou think you’re lost
But you’re not lost on your own
you’re not aloneI will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let goIt hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rainsI will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tightAnd I won’t let you fall
Don’t be afraid to fall
I’m right here to catch you
I won’t let you down
It won’t get you down
you’re gonna make it
Yeah I know you can make itCause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go
Oh I’m gonna hold you
And I won’t let go
Won’t let you go
No I won’t
It’s sad.
It sucks.
I hate it.
I am sad and mad and angry.
I don’t want Eli’s family to suffer this loss. It is so very frustrating and heartbreaking!!!
I couldn’t sleep last night and I wasn’t sure how to even blog about this. But I want everyone to know that Eli was such a trooper and so was his family. Having a child with a serious illness effects everyone. Just like our family, I feel terrible when Bo is sick- not just for Bo but for my other kids too! It scares them when we have to go to the hospital but our kids are expected to act like everything is normal. It can’t be easy for them. It’s not easy for them. Thank God we have a great family, friends and community. It so important to have these people in our life. The unconditional support helps more than people realize!
Please pray for Eli and his family. They will say goodbye their final goodbye at Eli’s funeral tomorrow.
Hug your loved ones today. you just never know!
C
David Dodd - Your blog was spot on. The pain is real and doesn’t seem to go away. The book “Heaven is for Real” helps.
Pamela - Heaven is a wonderland
Where angels dance and play
And laughter and happiness
Are the music of the day
Joy fills the clouds
Upon which angels roam
Everyone loves everyone
No one ever feels alone
Heaven is mystical, magical
And beautiful too
Where angels old and new
Are watching over me and you
Carolyn- I don’t know who wrote this. My heart breaks for you your loved ones. Love to you, Pam
Tammy Rettig - My prayers are with you and Eli’s family. So sad to read this and not feel the pain.
Kaye Frisbie - We may never know the answers to our “why” questions in this lifetime, but hold onto the faith that there is no pain in Heaven and the belief we will all reunite with our loved ones who have passed on before us! Prayers for Eli and his family and prayers for you and yours!
Debbie Wolfe - I will pray for you all.It doesn’t matter how old a child is when you loose one it is so unreal. My brother died at 19 and my father never got over it.Keep the faith and know you have friends and family that pray for you and love you. You are not alone in your journey God is always with you . Keep the faith and I will continue to pray for Bo & all of you.