And, he made it!

 

 Well folks, I think this may just be my last blog. Kaden is no longer "Our Littlest Man". He is taller than me, in film school and graduated high school with honors. Again, he never ceases to amaze us. He, who once was a 26 week micro preemie, to a 3 year old on hospice and a g-tube just to eat, to a 5 year old fighting for his life again and a g-j conversion, to a 7 year old diagnosed with Autism and a breathing machine, to an 8 year old trying to figure out life with all of his medical complications, to an 11 year old who couldn't regulate his body temperature and play with his friends outside, to a 12 year old who just lost his house in a flood, and then his brother to heart failure, to 15 year old still struggling with Mitochondrial Disease and everything else previously mentioned while masking and trying to keep up with his friends on stage, to a 16 year old with his first blood clot that could have been fatal, forcing him to quit Krav Maga, to a 17 year old with his second blood clot, to an 18 year balancing it all to the best of his ability..... to the young man that we see today, made it. Now, are all of the medical diagnoses gone? No. Is the Autism gone? No. Does he still need medication and doctors and this and that and blah blah blah? Yes. But he handles it all with grace, humility, and a good attitude. He's learning how to "life". He's learning about "adulting". He's learning about TRUE friendship. And that is what I witnessed last night. Kaden's graduation was amazing, to say the least. Every single person there showed up. Not physically, but emotionally for my son. His friend-group understands him, and he understands them. Like a puzzle, they all fit together, and they had so much fun. It's not often that he has that much energy to really get out and do a lot without relaxing the next day. So, a message to each of you.... Harrison, you bring comfort in a way that most young men can't understand and always make him smile. Annie, backstage at every show, you've been there as an anchor. Millie, you make him giggle and you "get" him. Olivia, your kindness radiates, and you've always included Kaden in everything. Sean, you've always been an ear to listen, and we all need that. Jupiter, your compassion and love are of great comfort. Amelia, your loyalty, kindness and confidence have been consistent, and you bring joy in even the darkest of times. Elminnay, your bright smile makes him smile and your honesty and integrity keep him grounded. A.J. you've been there since the beginning and have been his constant through all of the bad. You know the really bad, and you're always there. And last but certainly not least...E. Oh honey, you've been so loyal, loving, patient, kind, and all the things a best friend should be to my son. So, to all of you, I thank you. From the bottom of my heart. And to the friends that couldn't be there, I know you are special to Kaden as well, or you wouldn't be someone he calls "friend". Family, you've all been an integral part of Kaden's life and I'm grateful for all of you. My friends, family, his nurses... everyone that played a role in the care he has needed.  Now, Alyssa, thank you for stepping up as his chosen sister and an ear to listen. We love you! Brandon, we miss you dearly and I'm so happy you were able to watch your little brother graduate!  Oh boy.....Kylee- God Himself made the perfect siblings for you and you for them. I can't imagine this journey without you as Kaden's sister. You have your sibling code and have been through the unimaginable. My parents, you've been the glue that held the family together and shown love even when our world was falling apart. Brian, you've been the father that held it together better than any father, I could even possibly imagine with a life like ours. You stayed and fought for our family through what felt like hell and high water. This has been our life, and we did it! He made it! Now Kaden- You are a fighter. You are strong. You are special, and brave and loving. You are loyal and the best friend anyone could have. You are talented. You make every day brighter. You are funny, and resilient. I don't know how you've kept on marching through everything you've been through, but you did, and for that... I respect you and look forward to years to come. I'm so grateful to be your mom, Son. I love you the most times infinity, whatever you say, I win. 

Graduation

The Family

I love you the most...

 So, we say this little thing you see. "I love you the most, times infinity,  whatever you say... I win!" If by chance he beats me to it, I simply remind him "I've loved you longer."

When you see other people love your child, it's like eating your favorite dessert and then snuggling with your favorite person, under your favorite blanket,  watching the best movie ever. Pretty great,  eh? 

Kaden has some pretty amazing people. God is good. We need some prayer right now friends. So, ummm, pray for my boy will ya?

We love you son 

Little Did I Know

 Kaden, oh, how times change.... had I known that your big brother was going to pass away 4 months after the last post, I would've made sure to give him so much more appreciation for all of the wonderful encouragement and support he gave you. He was such a great brother. Evan was something else and we see so much of him in you. I can't believe you're 16 son! I know we are still waiting for miraculous healing. It will come. I know it will. You've come so far. Keep going! We love you.

9 years ago, today

I started this "blog" nine years ago, today. We were frightened parents, trying to keep folks informed of Kaden's prognosis and treatment. Our world was spinning out of control and we were nothing short of frightened. Prior to blogging, I'd post little updates on CarePages, but I came to the realization that the moment the hospice team was involved, the more vulnerable I would need to be, and the more I would need to share our sweet boy's journey. We had a very long road ahead of us with no final destination planned. All that was certain was we wanted our son to live and our family together. I sat down the other day and was reading some of these posts with Brian and Kaden and was a sobbing mess. I can not believe for the life of me just how much I blocked out. I suppose it was a coping method. I was crippled with anger and at other times, terrified. So, I filed it away as though it didn't exist. Yet, when I spoke to Kylee about some of the posts... she remembered everything. Oh my beautiful children... Kylee, Evan, and Brandon... you have all sacrificed so much to get our family to this place, this season in our life. You are so brave and selfless. You are strong and cherished and I only pray that this experience benefited you in a way that developed your character and didn't harm you.  Kaden is so blessed to have you, and you him. That goes for you too Gran and Popo. You talk about time moving faster and faster. I feel it too and I'm beginning to understand. My heart feels the same, yet my reflection has changed.
As for Kaden's nurses, Momma, Delona, Brad, Chris, Stacy, Rebecca, Chelsea, and everybody else that helped us get through the tough times... looking back, I shake my head in awe. It is genuine awe. Kaden was so well cared and we are grateful. There aren't words. Really, the don't exist.
That said, our boy is growing big and strong! He's still doing his "Kaden" things, but I know that God is mighty and always has His hand on Kaden. I don't really worry anymore. Some of you may laugh at that statement, but in my mind, it's true. I don't think I worry. I trust. I pray. I pray with Kaden. Our boy is becoming a pleasant young man with a wonderful disposition. He is quirky and funny and brilliant. When you look in his eyes, you can tell there are so many thoughts in his beautiful brain he could only attempt to share, because we could only attempt to understand the complexity and depth to them. I've been chosen to be the mother of two sons with those beautiful brains. I look forward to the day that Evan and Kaden can sit as gentlemen, converse, debate and theorize about the world. Evan patiently teaches his little brother proper ergonomics and the techniques one must learn with body mechanics when playing sports. Brandon and Kaden laugh. And laugh. And laugh. And laugh. Kylee offers the emotional support that only a sister can provide. She's a secret keeper. Daddy and Kaden build things, laugh, play ball, and talk... about everything. He's a talker, as long as he's interested. If he doesn't share and interest in your topic than the boy is silent. My momma and I are his primary "care providers" and teachers, and she takes him on adventures. His life is full and he's happy. We had our first day of homeschool today, with me as his learning coach and it was awesome! I truly loved every minute of it. I will treasure my son. Medically speaking- let's skip that for now. Love to all of you.

Kaden- Do you ever wonder if the stars shine just for you? Sometimes I think they do. They're like a little wink from Heaven reminding you that you are so strong.

 You are empowered. Your will, devotion and determination will sustain you. Just be you son, and watch what happens. You rock buddy.

Love, Mom

So much missed, lost, and gained...literally

So, Little Man's phone broke in an attempt to put a password on it to protect it from friends. Ironically, the need for a password brings me a bit of very bizarre twisted joy simply because that means he has friends to protect his privacy from. The demise of his phone broke my heart. K-Man would call this "broken logic". On said phone, there were 56 pages of a "Choose Your Own Adventure" style book and several chapters including character development of "Murder At Mayberry Mansion", a thrilling and enticing tale written by the very amazing kid I sit here writing about. In addition, he had already composed a trailer and an entire episode of "Stop Motion" Lego film using photography, where you move each piece ever so slightly in each shot and play all the photos together creating a menagerie of art that before your eyes that has suddenly become a movie! His talent never ceases to amaze me. Anyway, I sat down to create a recovery email, sick over the thought that he lost all of those original pictures. When doing so, good ol' Google popped up this blog and it smacked me in the face. I simply can not believe I haven't updated since K-Man's 10th birthday. He's 12 people. 12. Now, that's sad. So much has happened in the past 2 years it's unreal. We all know that I'm long winded (only because I think details are important), but I'll try to keep this a decent length. 

Shortly after Kaden's birthday....surprise....his name is Kaden, Hurricane Matthew barreled through and destroyed EVERYTHING. We lost our home, cars, sentimental items, pictures, property, a lot of his equipment, and we had to say good-bye to our goats. It was beyond heartbreaking walking into waist high water and watching his Lego's float and observe the mold growing on his stuffed animals and books. We knew we'd never be able to return. After Department of Natural Resources brought us back by boat to try and retrieve our most precious items if they could be retrieved, the flood waters just continued to rise. We found refuge in a shed/garage/apartment space and stayed for three months. Kaden slept on an air mattress with a joyful heart. He sat at a small table and played with his Legos that were donated by his PT/OT team, and continued to smile. It was difficult for him as all change is, but he continued to thrive for the most part. He became very ill a few times and continued some of his "Kaden" things, but we discovered some new stuff too. Kaden saw his mitochondrial specialist in Florida and followed up with his geneticist in Florence. He's also seeing a phenomenal pulmonologist (lung doctor). We've added and replaced some doctors. He has a new cardiologist (heart doctor) and a rheumatologist (joints and cartilage), a developmental pediatrician (she specializes in autism and is amazing), and a neuropsychologist (she help other's understand our incredible son's intricate brain). His existing team was his pediatrician, 2 neurologists (brain), endocrinologist (metabolism, blood sugar, growth), and gastroenterologist (stomach). With the hard work of this team and the open mind of a handful of them, we've finely tuned Kaden's mitochondrial cocktail which is basically special vitamins, his medications, and essential oils to help him thrive and grow. Since we've converted his g-tube to a g-j tube (feeding tube), he's gained weight and height. The autism diagnosis has helped many people understand him and has opened up a lot of resources for him. We approach situations differently and our methods prevent meltdowns. We work around Kaden, but life is amazing. 

We've been blessed with a beautiful home, in a safe and pretty neighborhood. We have an amazing nurse and nursing agency. Our neighbors are incredible and loving and excepting. Kaden's teachers through the homebound curriculum are two women that show such amazing love for him that by far surpasses any education and love he could receive in a public school environment, and are nothing short of angels. For socialization, when everyone is healthy, we attend a co-op. For the most part, they too, are incredible. We've explained to Kaden that everywhere you go in life, there will be mean people and people that say hurtful things. There are so many people that don't realize what Kaden goes through every single day. He would love to make more friends and I'm sure he will when God see's the right people fit. You've got to be pretty special to fit into Kaden's world. He's so intelligent that a lot of children have a hard time keeping up with him. He's incapable of lying, most likely due to the spectrum, and doesn't understand metaphors. Now, he can withhold information, but the child can not blatantly lie. It's nice. He is annoyed easily and likes a quiet environment. Oh, the joys of a tweenager. His siblings and family understand him, and he rather enjoys their company. Cousins, aunts, uncles, grandparents... they make him happy. He also cherishes my dearest friends and they're like our family. His God-mother Shannon, ensures he experiences life every time she visits. She even took him deep sea fishing with my hubby! Over the last two years he's had to deal with a lot of loss and change. He lost his Sunday school teacher, my dear friend Amanda. Her loss was felt deeply in this house. I was under the weather and she helped brighten my days for so long. However, we were also reunited with Kaden's original Sunday school teacher, also named Amanda, and that was a joyous occasion for us. His current Sunday school teacher is also named Amanda, so it can be confusing by name only. Three women with beautiful souls that at some point have filled his soul with laughter, acceptance, strength, positivity and joy. We are so blessed. Most of you know he wasn't supposed to make it this far, but he continues to fight. We're convinced he always will.

11th Birthday

With your friend

On the boat with Daddy

A special day with God-mother Shannon and siblings

12th Birthday

Special Memory

To our son: I know the words "You make me proud" are said often, but sometimes the written word is different. You make us feel proud to be your parents. Your honesty and integrity are rare. You know how you told Daddy that not all super heroes wear capes? Well, the same goes for you. We love you more today than yesterday. Thank you for allowing us to be part of your world.- Love, Momma and Daddy

Oh My Word, he's 10!

1st Birthday

2nd

There's so much that I want to say, but I'll leave it at this for now. Happy Birthday Son. We love you. May you continue to fight this battle and grow big and strong. You are a warrior and make us so proud. Love, Mom and Dad. We love you the most times infinity whatever you say, we win.

3rd

9 already?

Birthday's are the best! I thought about filling everyone in on the very trying times we've endured over the last couple of years. But, not today. Today is a day of celebration. Our son is 9 years old today! I can't begin to express the joy that brings us. He has defied the odds time and time again. He is strong and resilient. He is brave and a fighter. These are things we know, but over the last couple of years he has defined "Valiant". Our sweet boy has endured so many procedures, tests, daily shots, changes in medications, challenges beyond most adults comprehension, and yet he still smiles. He enjoys most of his life.

I won't sit here and pretend that we are out of the woods, but I refuse to believe that he won't have a long and wonderful life. Cheers to you our amazing son! Daddy and I are so thankful that you are our son. Thank you for reminding us what's important in this life. May your birthday be filled with every moment of happiness that you could possibly have. HAPPY BIRTHDAY! We LOVE you the most times infinity whatever you say!