Hi sweet family & friends, it’s me McKenna!
My annual birthday letter is so super-duper late this year. I just couldn’t bring myself to write it while I was in the hospital or not feeling well. I mean, I would be all moody and melancholy and that’s just not my style. I want my birthday to be a celebration, each birthday being that much more special than the one before, an achievement to say the least. But, this last year was a doozy. Terrible two’s they say…hmpf. Two was a cake-walk in comparison to three.
As I think back on the last 12 months I get shivers thinking of how we have been held captive by medical turmoil. Each week seemed to bring something more dreadful and unexpected than the week before. But today, in this moment, I am happy and feeling good. I am full of smiles and my hair bow is in position. So, today is the day I write. I write to tell you that I am still the little girl that is full of love and hope, praying for better days to come. Days to be spent with my family, all five of us together, doing wonderfully ordinary things. As we say an enthusiastic good-bye to Winter, we offer a whole-hearted welcome to the warm days of Spring. We cling to what beautiful things the season might bring.
I hope for days that allow us to take walks where my little sister and I can comfortably ride in our special wagon. With my big brother alongside attempting crazy stunts on his roller-blades, beaming with excitement that we are all there to witness. Or, maybe we’ll be simply sitting outside enjoying a breeze–Kyle coming up with one scheme after the next, Kelsey most certainly will be causing some sort of ruckus, and I will be singing with the birdies all the while Mommy & Daddy will be smiling and laughing at our antics. It is said that laughter is the best medicine so I am thinking we better start laughing our heads off then. LOL, my friends, LOL!
Most of all I hope that our family can start really living. No more living in fear of what the next day might bring, no waiting for the other shoe to drop. Just living. Our life has been on hold for far too long. I want my daddy to feel relaxed and proud of how far we have all come as a family; I want my mommy not just saying “it’s gonna be ok,” I want her to truly believe it; I want Kyle to feel secure and have the happy-go-lucky attitude a 7-year old should have and not carry the weight of the world on his little shoulders; and I really want my baby sister to know I am fun in my special ways and a lovely sister to have. No hospital admit’s, no ambulance rides, no constant worrying. Just some calm to live the family life we so desperately crave and most definitely deserve.
I should go into the recent changes in my medical life, which would be a relief to my Auntie Beth. Poor girl, she deserves a raise for sure; who wants to be the messenger of all of the bad news? It is so complicated and varied and almost impossible to retain it all, and then once you send out an update the situation usually changes moments later anyway. I am definitely going to give her more cuddles per hour and I am certainly gonna work my little patooty off to give her more uplifting news to report in the future. I really want all of you to know me, the girl I was meant to be. I don’t want my life to be summed up by my challenges. I am hoping the days ahead are those where I can encourage others to have strength, to continue to have hope and to see firsthand that with love so much is possible.
(At this point McKenna went back in the hospital for yet another upper respiratory infection. So much for relieving Auntie Beth. )
My bow is still in position, although a little askew. I have landed myself back in the PICU for the last two weeks. It started with yet another upper respiratory infection and it was determined that I was aspirating my feeds, both oral and g-tube. To reduce the risk of aspirating we decided to have a GJ-tube placed in place of current G-tube and to no longer feed anything by mouth. Eating orally was one of my greatest joys and it is sad to have one of my biggest accomplishments fall by the wayside. Whenever anyone in the medical world, or anyone else for that matter, would see me eat they were in such awe. “Look at her go!” or “Wow, she ate all of that?” they would exclaim. I was never expected to do well with oral feels, but I did very well. Unfortunately, we also knew it might only be short term milestone; as pneumonia’s and seizures widdle away at your strength and neurologically you decline sometimes some of those beautiful treasures eventually go away. For three years I ate breakfast, lunch and dinner like everyone else in my life. Like everyone else…
However, I am not like everyone else. It is hard to make sense of it all sometimes. I am such a good, little girl every single day of my life; I am as sweet as sweet can be, the epitome of love at its purest. So, why me? There are so many days that I just don’t understand…why so much? …why so often? I don’t want to question the Big Man, there are no appropriate answers that would make it seem right. Medically this is devastating, emotionally this is heart-wrenching. However, what I do know is He does not cause my pain but He carries me through and provides me with all the beautiful aspects of my Life.
In situations like these you often hear people not knowing what to do so they don’t do anything or they don’t want to ask questions in fear of making someone sad. Sometimes people are so concerned about saying the wrong thing they say nothing at all. We are so fortunate, your kindness and support give us the strength to conquer whatever the future might bring; you make our day-to-day more manageable and life livable. You call once, twice, three times to check in even if a call isn’t returned right away. You continue to invite us to parties, lunches and playdates even when our attendance rate is low. Even though my mommy might not be up for talking about it one day, that doesn’t mean you will never ask again. You send lovely emails and cards even when we cannot reply to say how much it meant to us. Please know it means the world, my Lovies, each and every thing.
Even during a yucky hospital stay, with whatever crisis is ensuing there are blessings in the midst. There are the doctor’s that continue to jump through hoop after hoop to make sure all the pieces of my complex puzzle are addressed. Pharmacists hopping, social workers workin’, respiratory therapists doing their tha’ng all the live long day. We are blessed with those wonderful nurses, those whom I have heavily relied on since my very first day. There’s the noodle nurse saying I have changed her life as she works by my bedside and the clippity-clop nurse who turns her 12-hour shifts into 15 even when she’ll be back the following morning and learns to text so she can answer any questions my mommy might have. Or, the nurse searching for a hair-bow when I was without one (Code Diva needs a bow, Code Diva needs a bow!) or for adequate crafting supplies so I can have a proper formal hat to wear for the Royal Wedding. They arrange a bouquet and perfectly personalized card for me to give my Mommy on her special day. All of them coming together so often to make the most of a crummy situation, even arranging for family pictures to be taken because it was yet another seemingly ordinary thing that became too difficult to accomplish.
There are the visits and shifts taken from loved ones even when it happens to be St. Patrick’s Day, Mother’s Day or even Christmas Day. They are there on the bad days, and they are there on the good. They don’t complain about it being an inconvenience, they are just there. The most important thing to be…there. They bring chocolate and Swedish Fish when it is urgent to do so or they bring a shoulder to cry on when there is nothing else to do.
There is my home-care team that I put through the wringer week after week. Thank goodness I am so lovable and snuggly or they would’ve run for the hills by now, for sure. Snow White and St. Patty-Pat-Pat make themselves available 24/7 even though I don’t think those are the hours meant to be kept. They, along with the extended team, talk my parents down off the ceiling repeatedly and give them the confidence to manage the unmanageable. They walk in willing to jump in in whatever capacity they are needed and coordinate with the hospital throughout my stay and upon discharge to ensure the transition in my care is as smooth as it possibly can be. From healing hands to loving hearts, each person is key in my Life.
We come home from our life being turned upside down from yet another lengthy hospital admit, overwhelmed by new equipment and an even more daunting schedule wondering how are we possibly going to manage it all to my mommy then looking out the window to a group of parents putting together a swing-set for us and a table full of food provided by many, many more. Friends helping friends, be it four years ago or today, saying “if you can’t help your friends who can you help?” From the person who initiates the idea, to the person that pursues it to each and every person that gives a little bit of their little bit I thank you from the very depths of my heart. You are simply amazing.
Beautiful blessings come in the form of on-going meal-trains, delicious treats and frozen staples to homemade baby food or the yummiest soup ever. Inspirational cards and amazing words of encouragement to appreciate in the moment and to cherish even more when you look back when feeling discouraged. To prayer warriors and unbelievable Easter blessings to the little elves that make you believe in the spirit of Christmas all over again or a random beautiful visit from the most sought-after babysitter in town. It might be Jeep juice or cake-pops or an afternoon of bowling, McDonald’s or a movie for my brother. Every gesture is unbelievably thoughtful, it is meaningful and it is inspiring. It can lift you back up when you feel you can’t possibly handle one more thing.
And, how the sweet little voices of my youngest friends can turn my frown upside down! Some have prayer centers in their pretty, little room where they pray for me each night and some wear their For the Love of McKenna bracelets with pride. Some insist they’re taking me to prom and tickle me under my chiny-chin-chin every time they see me. Some are so incredibly silly that they present me with decorated Chicken McNuggets boxes or draw cute pictures of four-legged leprechauns. They play Special Needs Child, one being the super-special helper and one being the oh-so-special Me. Or they ask for the American Doll wheelchair for their birthday because that is a must-have accessory. My teachers and classmates continue to treat me as part of the class even though I only went for two days this year and other friends that think I am so amazing they have asked to do school projects about me. So many others ask about me often and truly want to know I am feeling better and I am going to be ok.
I am going to be ok. I am. I have you.
Although we continue to contend with one issue after the next, I could not let another day go by without sending you my love.
Hugs, Kisses, a Squeal and a Giggle,
McKenna
