(If you don’t already have a Kool and the Gang song in your mind then……you need more fun in your life.)
So now that we’re all jammin out to some good 80’s tunage, here’s my actual blog for today.
As usual, it’s a motley mix of emotions and different things on my mind.
My heart still aches for my friends who lost their little boys recently , and for all my friends who have lost their children to this cruel disease. Every day, at least once a day, I am reminded of the fragility of life. My facebook news feed is filled with medical crises and issues that i never would have thought I would be able to read with a calm sense (and understand them even!). Daily I am playing a balancing game of running Kendall’s outward actions against what I perceive to be her internal issues. I am constantly counting down the days until our next IVIG infusion, and counting UP the days we are removed from her last infection, or from broviac placement, or from any number of different medical milestones. It is always present. Even when it might seem like are “getting a break”, there really is no such thing.
She has had a GREAT past couple of weeks. I have been able to breathe a little bit easier. I haven’t had to post a whole lot of crazy medicalese. But this does not mean that we are just cruising along. I may make it look like things are smooth sailing – but underneath the surface I am treading water with all I have. Kendall’s care never stops. We have good nursing these days, and that IS helpful, don’t get me wrong. I am able to get a couple hours here and there where I can just be “me” – go read a book in a quiet spot, peruse the aisles at target leisurely for an hour, spend a little more time with the big girls apart from having to constantly be giving meds or assessing kendall. But at night, pumps still alarm. Pumps still malfunction and I have to try to calculate missed fluids x hours remaining co-sign tangent (y) to reprogram the pump so she doesn’t have a crash in the morning. i have a funky little device that tracks my daily activity and my sleeping habits (because i need more of both!) – and seeing my sleep patterns every morning actually explains SO MUCH about why i feel exhausted every day of my life.
So yes, Kendall IS DOING GREAT – but it still requires Herculean effort to keep her there. Effort from me, and prayers from all of you. I know it is not a solo effort on my part. yes i am the most hands-on, but it is not by my power that Kendall is doing well. It literally takes a village to keep our family running. I do not for one second take all of that credit. It is the village of our family pitching in to help with the other kids, close friends who arrange and bring meals because cooking is just one more thing that i am too exhausted to do by the end of the day, friends and acquaintances who can’t be hands-on help but can send a gas card or $10 for something fun for the girls.
And this weekend, it will literally be a VILLAGE, the village of our neighborhood, gathering together to celebrate this sassy little red-head who has touched a whole lotta lives with her spunk and feisty will to live. I am honored and humbled at all the effort of our friends and neighbors to put this amazing event together. I cannot fathom how many hours have been poured into making an event of this size come together – and I know there are people who we have never even met pulling strings for this to be an EPIC amazing day for Kendall! I try not to let some of the ins and outs of a kid with needs like Kendall’s creep in to the blog or her page too much. But it is often overwhelming. We have been so very blessed, and we will constantly seek ways to pay forward all that we have been blessed with. Beyond the fundraising aspect of this event, I hope that it is successful in getting more awareness of mitochondrial disease, and the battles that some littles fight every single day. I hope that the people who have poured heart and soul into this event have an inkling of how amazing their efforts are and how Kendall has had……a year.
In many ways it has been a good year, and in so many others it has been one of the scariest years of my life. here is one of those other countdowns that i rarely breathe out loud. The countdown to 5. 5 years old. I know WAY too many children who never made it to that milestone age. And there were far too many days this year when i didn’t know if Kendall would make it there either. But here we are 30 days out. thirty more days. One month. And yes, we will be celebrating a tidge early by having her birthday celebration be this weekend –but the point is – we have SO MUCH to celebrate. So we will be doing it up big. If you are anywhere in the area – we’d love to see you! Just come by and say hi – see all the fun activities on the flyer i’m attaching. If you can make it in the morning for the 5K – awesome! If you can’t make it till the afternoon – that’s great too!
We have some amazing friends and family scattered around the country who are doing their own versions of the Princess 5K – and there’s a link for that too if you wanted to do something to celebrate in your own way!
one of our friends even challenged her workplace that if they raised a certain amount she would wear a princess costume to work all day!!! I hope someone is taking pictures of that!
It is this Saturday, October 19th. We have a huge countdown between now and then – the countdown against IVIG reactions! For those keeping score at home, last time, Kendall started reacting at 36 hours, was in the ER by 48 hours, and was in the ICU 6 hours after that initial bad crash. And stayed through the weekend. PLEASE PLEASE PLEASE pray against a reaction of that kind with us. The countdown is on!
so let’s celebrate the GOOD times – the every day battles won – like waking up and breathing in and breathing out and grabbing life by the horns and LIVING it. I hope and pray for you that you have something GOOD to celebrate about the everyday.
Pumps are alarming again – that must mean IVIG is done infusing and it’s time to flush and pack up this little cubicle that is destroyed with dried playdoh and tongue depressors and sample cups turned playdoh tools….
Keep on Keeping On.