When K was born, she was seemingly healthy.
With the exception of a couple of ER visits during her infancy, frequent illnesses, and slowness to reach milestones…we thought things were okay for most of her first year.
By her first birthday, it was clear that more was going on. She was a slumpy, floppy baby still…not standing or walking, needing to be propped up to sit, not eating, losing weight, dealing with chronic constipation, and so forth. So we switched pediatricians because ours was not paying attention to what was happening to her.
Switching pediatricians was one of the best decisions that we’ve ever made for K, but it led to a very different sort of life for all of us. The kind of life filled with strange tests…
And hospital stays…
And surgeries and procedures…
And weird new things…
And innumerable hours of our lives spent in clinics and waiting rooms…
(sometimes you just HAVE to be fabulous…even at the hospital.)
And yes, sometimes it has been exhausting…
seriously exhausting, which leads me to the reason for writing this post…
This week is Mitochondrial Disease Awareness week. *Mito is the disease that has changed our little world forever. Life will never go back to “normal” for us. It is a progressive disease and there is no cure. K will be sick, for as long as she is here with us…which of course we hope is FOREVER. K is fairly stable right now, but there are no guarantees with mito, no guesses about how the disease will progress or the path it will take. Mito means the cells in her body do not produce enough energy to power her organs, so they don’t work the way they should…and working without the right amount of power will cause more damage as time goes on. While there is currently no cure, we attempt to raise awareness so that people will better understand the disease, contribute to the fight against it, and perhaps one day that cure will come, for K and for all of her little friends who struggle with the same exhausting disease.
But K has taught us that with the right attitude, you can pull just about anything off…
And when you are looking for it, there is always WAY more good than bad to be found, like smiles and laughter…
(especially when throwing firecrackers into the lake with dad.)
She’s also taught us that anything can BECOME normal, if you give it a chance…
And that sometimes being brave means being “the most scared girl on the planet, but she did it anyway”…even if you cry the whole way.
She taught us that sock monkeys can make just about anything better…
And that friends who truly get you are one of the best things in life…if you find one, you better hang on tight!
She reminded us that family is precious…
And if you’re VERY lucky, some friends will turn into family…
So yes, mitochondrial disease will be a part of K’s life forever, but our hope is that we will all be too busy LIVING LIFE to spend too much time worrying about it…for as long as that is possible. But it would be wonderful if any of you would help us spread the word about mito this week (or any time of the year!)…although it occurs at roughly the same incidence as cancer, it is MUCH less well known. So tell somebody about it. One person even! Share this post…just a couple clicks is all it takes. Go to the UMDF website and learn more. Get involved. Donate some new or gently used toys or movies to Children’s Memorial Hermann Hospital…or whatever your local children’s hospital is. Pray! Everyone can do a little something…and everyone doing a little something turns into a BIG something! Help us change things for the better, for K and for the kiddos like her everywhere.* As of the date of this post, K still technically falls in the “highly suspected” category of mito. It is incredibly difficult to diagnose (and is made even more difficult by the lack of knowledge and information about it, even in the medical community) and while her doctors agree that this is what is affecting her, we are still awaiting science to catch up and provide us with a genetic diagnosis.
September 16, 2013 at 3:37 pm
Beautiful post and a great way to describe mito.
September 16, 2013 at 5:23 pm
Loved walking down Memory Lane with this post. KayTar has an incredible light…and boy does she let it shine bright!
September 16, 2013 at 5:45 pm
I’ve been meaning to ask since the first time you posted it–what the heck is that unlabeled clamp-thing on the black-and-white pic of K’s JG tube?
May every day continue to be the best day ever!
September 16, 2013 at 5:55 pm
Corinn: It is one of the leads from her heart monitor…we were inpatient at the time!
September 16, 2013 at 6:52 pm
Wow, K has grown so much! 🙂
September 16, 2013 at 8:27 pm
Wonderful post. I love my little sock monkey!
September 16, 2013 at 8:36 pm
miss you all bunches…. great post and love all the “faces” of K!! 🙂
September 16, 2013 at 10:41 pm
so beautiful, thank you for sharing! and 10000000 points to parents who trust their gut and switch doctors when they aren’t being listened to. you are amazing parents!
September 17, 2013 at 8:32 am
7yrs ago I lost my baby Harold to Leigh’s. We had never heard of Mito before we entered TCH 3weeks and 5day before he left us to be our Angel. while in the hospital I wished that the Dr’s knew more about Mito. I am glad to know that K is doing well, at the moment and hope that it continues.
September 17, 2013 at 4:34 pm
Kyla, I just wanted to tell you that my daughter, Shannon (your pediatrician), sent this to me this morning. What a fabulous story to share with other families that are going through this very, difficult journey of life with their children!!! I too had a difficult journey when Shannon’s oldest brother was diagnosed with cancer at the age of 10 in 1976 when most children did not live. We were fortunate to have the wonderful doctors at Texas Children’s Cancer Center to guide us through the tough years of bone marrows, spinals and chemo. My son did survive and we are grateful for every day!!
K is an amazing person but she couldn’t have that beautiful smile with all the tears and pain she has gone through with Mito without her parents, brother’s and family love and understanding. Life is very precious and each day is a new beginning. I will keep all of you in my thoughts and prayers and will give a donation in honor of Katie!!! Warmest regards, Liz Kelley
September 19, 2013 at 4:27 pm
Liz, thank you so much for taking the time to leave such a sweet comment. I really appreciate it! You have actually had a little part in us figuring out what was going on with K, though I never thought I’d have the opportunity to share it with you. Shannon was at a Ronald McDonald House event with you and met a mom of 3 kids with mito and they sounded a lot like my K, so she got her contact information for me and got us plugged into the doctor who has pieced this together. If you hadn’t been there, then she wouldn’t have been there…and who knows when or how we’d have ever figured this out! So thank you for that AND for raising such an awesome human being. She is a wonderful pediatrician and has been such a gift in our lives!
September 17, 2013 at 7:29 pm
I have a daughter that has mito as well. The doctors too suspect mito but we. Are in the same boat with the science.good blog by the way. My daughters name is shelby and she is nine.
October 17, 2013 at 9:28 pm
I am sobbing…the pictures, the inspiring words, and all of the things that K has taught you are things that everyone needs to know and apply in their lives. Thank you, and thank K for the reminders. OMG I can’t stop crying!
November 4, 2013 at 6:51 pm
This is beautiful! Having met Katie, Nathan, you and your husband, I can see why Katie has such a great view of life and why she is always smiling. You have a beautiful family and I’m very glad I was able to share with you guys during Mito Camp weekend.