So I never blogged how I felt or how hard i was hit by one of our mito friends’ journey Home last week. Or how it all fit together in a week that was tough and surreal to begin with. Or how I managed to stay upright without curling into a hot sobbing ball of emotions on the floor.
First of all – please lift up the Knight family in your prayers. Today are the services to celebrate the altogether too short and yet still amazing life of their little boy, Samuel, who received his healing from Mitochondrial Disease last Thursday. Even though on earth he was never able to run around free of tubes and wires, or enjoy pizza and brownies and ice cream, I know he is enjoying all of those things and so much more up in Heaven right now.
Samuel’s death rocked our little mito community. Being a relatively rare/new/often misunderstood and underdiagnosed disease, we have formed our own little band of friendships, support and strength. We are scattered across the country, indeed across the continent – and we touch each other’s lives through the words that come out of our fingertips, in emails, and blog posts, and facebook chats and message boards. We love each other’s kids like they were our own because in some way, they ARE ours. The struggles and the victories – we all share them. The times of tears and the times of rejoicing – we all know them. The fears that are too hard to put into words to our “real life” friends, we know without having to spell out loud. When news of Samuel’s passing was still being processed, we had only to ask someone else – “did you hear?” – no other details necessary. And although we know that our grieving and sadness are nothing compared to those who actually HAD him in their lives – the sadness still weighs heavily.
Any time a parent survives a child, it is sad.
Any time a mom is forced to pick out a headstone instead of a new school backpack, it rocks your world.
It is unfathomable.
And yet is is reality for so many people that I have come to know over the past two years.
Samuel had just turned 4 years old. He had a beautiful infectious smile, and the way his mom described his giggle I can only imagine how contagious it really was. His journey started out much like Kendall’s. His gut function was more severely affected earlier on, which led to an earlier reliance on a PICC line, which led to a horrific systemic infection that nearly took his life two years ago. He has always been a fighter. His family’s motto was “Expect a Miracle”. And boy was he one!
But the part that rocked us all so hard was that this was so unexpected. This was the crux of what keeps so many of us up hovering over our babies at nite – worried that this small fever or that nasty sounding cough could signal THE TIME that we will lose some function forever. When the mitochondria in each cell can no longer make or process any energy, that cell dies. When enough cells die in any organ, you lose function. when they all die, you lose that organ. When enough organs die….well….i don’t have to spell it out for you.
Samuel had been through a couple nasty hospitalizations this year. His body was probably fighting harder than anyone really thought. But he was playing around at his sister’s ballet class on a Saturday and was dancing in heaven 5 days later. How does that happen? And yes, that is, sadly a reality for every human being on earth. An accident could take the lives of anyone unexpectedly. but you tend to not live your life expecting an accident. with mito – every day could be THE ACCIDENT. And nothing reminds you of that like the loss of a beautiful little boy named Samuel.
So this has spurred us, my mito family as well as my family family, to fight harder. To be more vigilant. to enjoy every hour of every day with our beautiful little fighters.
But I know we aren’t in this alone.
So many of you are fighting this good fight with us. some of you may not understand all of it. But you know enough to know when to say “i’m praying”, or “i’m sorry”, or “I don’t even know what to say but I can hug you”. Some of you have made an AMAZING difference in our ability to keep fighting by sending $20 in a card, or by donating your wedding favor money to Kendall and her care instead. We have been SO very touched by so many of you and your true actions of love and support…
THAT is how we are able to keep going, keep doing it, keep fighting. That is probably one of the most asked questions I get – “how do you do it?” My friend/sherpa Allison wrote a blog post on this a couple weeks back. and she summed it up so well. I do it because I just do. I do it for my little goofballs. I do it because I know I am loved and supported from all of you. I do it because I have to – and because I wouldn’t have it any other way.
Life with Kendall is hard. There are no two ways around it. Yes, some of that pressure is now relieved with the addition of two wonderful nurses who come into our home every week to help lighten the load of Kendall’s care. And yet – she now requires 4 trained adults to ensure that she is getting everything she needs. Our lives have had to re-adjust to having an extra person here all day with us, in our schedule (crazy as it sometimes is!), seeing every facet of our lives. It is knowing that right now – something is going on with her little body that I can’t quite put my finger on, but that it means I may be sleeping on a hospital bench at some point in the next week or so. It is having to find a balance between having her with us, out and about, running errands, enjoying the craziness of our lives – and her overall health and safety. It is a constant running algorithm in my head of intake vs. output, coloring, temp, energy levels and movements. And yet as hard as that all is – I know so many others who would gladly trade places with us. our lives are their version of “easy”.
So I pull up my big girl underroos and march onward. Because that is the only way to go.
we march on because we have to – because to stop and give up is unthinkable. To stop and whine is ridiculous and unnecessary. to look back at what we have lost or given up serves no purpose. The good fight lies ahead of us, and together we will all go forward towards it.
Every day is a gift.
What are you going to do with yours?
I know what I am going to do – I am going to go color with Kaylen Hope while Kendall sleeps. I am going to try to calm the voices in my head that are worried about Kendall not eating and having way too much “puking” through her tubies the last few days, and the fact that she wanted the oxygen on at naptime. I am going to go work on tying up some of the loose ends that come when you are suddenly fired from your job. I am going to think about what I can make for dinner after I come home from dropping Kealey off for dance class. I am going to watch a little DVR’d Survivor/Intervention/House. And I am going to think about how very lucky we are to just be alive.
And then I am going to think about how to not have such a depressing blog post tomorrow!
But for now, we keep on fighting – for Kendall, for Riley, for Samuel S., for Eithene, for Cayleigh, for Quinn, for Nate, for Brigid…..for so many others who are fighting every day of their lives.
Keep on fightin’ babies –