7 years old....with so much to battle

As I sit here quietly.... questioning my role, 

as mother to my special son with vibrance in his soul.

I wonder with great heartache why there’s so much pain

Both mentally, and physically our lives are not the same.

We live a life of chaos, no two days alike

One day feels like championship- another like 3 strikes.

My special little man you see is recognizing the stares

Of people that are curious of the burden that he bares.

He isn’t like you and me, new challenges every day.

He puts on his happy face and longs to grow and play.

His body is his prison, its strained to grow and thrive,

But much like other children, his spirit is alive.

He also starts to question, why his body is so strained

why he can not go to school- as though he lives in chains.

He is too aware you see, his mind so brilliant and bright

Emotions stir inside him, he grows tired of the fight.

So yes there may be days of rest, but also days of strength

He wants to be a “normal” kid- he explains this at great length.

His journey’s been a bumpy road with pit stops here and there

His goal in life is just to grow up, knowing we’ll be there.

Not just by his side as parents- but as his playmates too.

He talks of hosting a party one day with laughing, music and food.

He says there will be pizza there -served with a side of ranch

Song lists of his favorite music- to teach us how to dance.

He dreams of growing up one day and having children of his own

A wife, and a car, a good career a place that he calls home.

He says he’ll be our neighbor and never move too far 

as though he knows deep down inside his spirit is in charge.

I share this dream of his you see, for him to grow and change

for healing and great memories replacing those of pain.

To hear my little boy say such things like “don’t tell me it’s just a poke; I know what IV’s feel like” my heart swells in my throat.

I wish for all those moments to be replaced with memories full of joy.

I literally would do anything to protect my little boy.

Every day is a new challenge- for all of us in his life

Living moment to moment to moment -taking one day at a time.

We continue to pray for healing, strength and happy days

but lately I’ve been wondering is he already healed by God,- just in a different way? 

Maybe a way we do not see, but exactly the way God planned. Not the type of healing, recognized by man.

Maybe my son’s a messenger of hope, encouragement for those-

that need to feel unconditional love. It’s the only love he knows.

Perhaps my little boy’s meant to teach, and humble the lost souls

To introduce our Father God, to help reset priorities and goals.

I must remember all of these things to help pull me out of bed

mornings after sleepless nights and prepare for the day ahead.

I need to take the time each day to put myself in his shoes.

The shoes of proverbial miles walked in a life he didn’t choose.

My children continue to teach me about what matters and the choices that I make- After all they would simply say “YOLO” and forgive my countless mistakes. They sacrifice so much you see to watch their brother live, never really knowing what tomorrow has to give.

So as I sit here quietly, I focus on the smiles

the miracle of my family and life in the eyes of a child.

Kaden just celebrated his 7th birthday. We can't hardly believe 7 years have already passed since we were introduced to our little man. Kaden had a wonderful little party and enjoyed his special day. He enjoyed some time with a couple of friends and opened gifts with a smile on his face. It was nice. He is still battling many things and we're doing our best to manage his health care right now. There really isn't any new information other than his blood looks better. His meds are constantly changing and we are still trying to figure out what we're dealing with. This disease rears it's ugly head unexpectedly but Kaden keeps on trucking! We are still trying to help him gain weight, and find the right cocktail for him to thrive. He is sick right now with a very wet cough and isn't feeling well. Please keep him in your thoughts and prayers.

Love to all, Julie

Hokey Pokey

Do you remember the Hokey Pokey? I'm sure most of you do. I've noticed that our life feels a lot like the memorable childhood song right now, but without the fun music.  The verse that I would assign to our son's healthcare team would be...."You put your head in, you put your head out, your put your head in and you shake it all about...you do the Hokey Pokey and you turn your self around...that's what it's all about." Whereas, our designated verse would be "You put your whole self in, you put your whole self out, you put your whole self in and you shake it all about, you do the Hokey Pokey and you turn yourself around...that's what it's all about."- If this horrid feeling of questioning Kaden's future reminds me of a song,  then I must be struggling with my coping skills. I've accepted that we're up against so many battles to no feasible end. Well actually, I've accepted it at this very moment. I just may freak out later. Who knows? There is some bonafide truth to the "5 Cyles of Grieving". The most accurate statement of my frame of mind is this.... It is difficult and life changing to grieve over the loss of a loved one. I must say that it seems to be even more difficult to grieve over the hurdles of a loved one that is alive and struggling because there is no absolution. The grieving just cycles constantly.  Again, no absolution. I'm sure that's why so many people relate difficult times to emotional roller coasters.

 Seriously though, the past few months with Little Man have been in my mind, memory building songs, poems and memoirs. I don't know about you, but I know that sometimes when I read other peoples feelings manifested through writing, I sit back and ponder if I understood the authors intention of their written word. Some make sense and others simply don't. I do the best I can to explain what we're feeling, but there really are no words. Furthermore, I write for my own sanity and coincidentally you may find pertinent information that satisfies your curiousity about the well-being of our little boy.

Kaden's had an entirely new set of struggles added to the original issues. He started having seizures in February that at first glance seemed to be something else. In actuality, he is having seizures in addition to the Rolandic discharges as previously diagnosed. For a short time he was consumed with migraines as well. We added in a new medication and it seems to help a bit. For this we are more than grateful. 

We spent a couple of days in the hospital this week to further investigate some of the new hurdles. The docs did a spinal tap and MRI under anesthesia. Kaden's MRI looked good, but his blood work and CSF leave much to be desired for our precious little guy. He is very anemic and there are a couple of other major concerns regarding his bone marrow, blood and full body neurotransmitters. We will see the hematology/ oncology team and cardiologist in the next 2 weeks. When we recieve definitive information from those two teams I will further explain our findings. He's been storming all week and dealing off and on with a "spinal headache". For now we know that Kaden has a Mitochondrial disease that is causing Dysautonomia, which most of you know has plagued him for almost 6 years. He will be 7 in September and is still tiny with very little appetite. Everything is starting to come together regarding his illness. He has been oxygen dependent again lately and we are working very hard to encourage him to eat and are closely monitoring his little heart.

Kaden almost finished his home-bound school semester already and as of Friday the 6th, he will be considered a 1st grader. He lost his 2 front teeth and looks quite adorable. He still laughs, enjoys the little things, and continues to remind countless people about the things in life that really matter. He has a special friend named Luna. She is patient with him and very loving. He also likes to play with Tyler who is a close friend of Kylee and Evan. Tyler is great at comforting Kaden and they love to hang out together.

So, I guess that's a wrap for now. 

We love you son. You make us proud.

Becoming Aware

Hi everybody....

I know it's been a while, but like I've said before it all seems to be the same information over and over again. However, we do have some new information. Most of you already know that Kaden has been on a teeter-totter with his health over the last few months. He's still dependent on eating through his g-tube, and struggles with keeping his energy levels consistent. We've dealt with more pneumonia's, more apnea (when he stops breathing), more G.I. bleeds (when his tummy bleeds on the insides), and now we experienced something called Convulsive Syncope along with three other alarming and scary symptoms. Kaden's blood pressure swings so widely that his brain can't seem to handle the drastic changes. His heart begins beating very erratically and it has several pauses were it just stops beating, but than starts again. He goes into "spells" and the episodes vary greatly. 

It seems as though this disease process of Dysautonomia can overtake his ability to function normally at anytime, and anywhere. We spent a few days down at MUSC again last week and again we were told "we really don't know what to do to help him, he's just so complex". His blood volume was very low and the team wasn't even able to run any blood work on him. He demonstrated Rolandic Epileptic Discharges on his EEG (test with wires all over his head to check brain activity). We are unsure of the significance of this discovery. There are so many other medical things going on...yet to the untrained eye his illness remains invisible. His team of physicians are reaching out to other specialists throughout the US to see if anyone can wrap their head around our special little boy. This news just downright stinks. However, I know that we won't be given more than we can handle.

I must say as a parent, this reality hurts. Unanswered questions leave very little hope and cause overwhelming feelings of helplessness, vulnerability, and emotional exhaustion. I can't say that this tight rope we walk is anything but reality anymore. Our real struggle at this point is not knowing "why". We have to turn our cheeks to anger and resentment or we will all go crazy. The negative emotion is so deeply rooted that it is difficult to face our reality and therefore we function as a typical family the best that we can. We find ourselves acclimating to Kaden's needs often. 

Kaden is a reader now and is loving Kindergarten. His teacher is phenomenal and meshes very well with our family. She is very patient with Kaden and he enjoys school. She comes out to the house three days per week now and he is working on learning math. Also, Kaden still attends physical, occupational, and speech therapy to help overcome some struggles with daily life.

More importantly, he is becoming more and more aware of well, ....everything. He knows he's different and I find myself staring at him often, watching him process what he's feeling both physically and emotionally. He's amazing at describing what he feels inside of his body and telling us what he needs but indeed feels lonely and sad that he's so different. His happiest times are playing with Daddy but we must be careful or he will burn too many calories just playing.

Anyway, I wrote this today as a simple update. My head and heart are not in the right place for anything but facts. Please keep Kaden in your prayers and thoughts along with his siblings. 

Kylee, Evan, and Brandon...you guys are the best! We are so grateful for you selfless sacrifices to ensure the best quality of life for your little brother.

Kaden- as for you son, keep on trucking. Your resilience is admirable and makes us stronger too. Keep in mind as you read these blogs as you grow into a young man that God did a perfect job matching us together. 

Take care Everyone...

Love, us

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Hypster Music Player