Magic

Such a jumbled mess. My thoughts fly from one extreme to the next. Watching Teagan dance around and jump, literally all over me. I am reminded of all the times Aidan wanted to wrestle or jump on his daddy. I think of all the times I watched my precious boy play so hard, and in less then minutes be so winded he had to "take a break".

Watching Teagan today play so hard and keep comming back for more at full steam only proves to me how hard it was for Aidan, and how hard he fought every day to wring the most out of life. From the time he woke up he fought. He was tired, and yet he brought his little body to the day and begged for all the day had to offer.

After moving into a "big boy bed" shortly before his sister was born, Aid began waking up and coming to our room. The first thing we heard was his door slam open followed closely by a loud pitter patter of his pajamaed feet. The next thing we heard is "guys, guys you awake?" Of course we answered with climb up buddy, and Aid would make the trek up into our bed.

I felt so privileged to hear those words...no matter the sleep deprivation it promised.

Shortly after one of the last times Aidan was hospitalized for a "preventive" scope, he came home on oxygen. I remember vivadly how much he HATED the stickers that held his oxygen on. One of the few times I left the hospital to take a shower and love on Teagan, Ryan was keeping watch, and I can only imagine the helplessness he felt, as Aid's nurse deemed him needfull of these atrocities stuck to his beautiful cheeks. Most likely due to his fear of wearing a cannula, his fear of "stickers" that hurt him every time we were in the hospital. Really? There's no other way to explain to a 3 year old his "super speed" was getting pumped into him?

What seemed like a death sentence came in the form of an oxygen concentrator and a 50 foot cannula. To Aidan he was home bound, the end of running as fast as he could as long as he could outside.

Our lives had forever changed. Our son was now seen as a "sick person." I remember thinking "it's only temporary", as the doctors had promised us. Wishing and hoping that was the case I remember thinking every doctor visit would offer a reprieve from the tether of his oxygen.

Instead of fighting a losing battle of having Aidan take off his oxygen during the night in his own bed to come sleep with us, we decided to move him to our room. Every night we rolled the oxygen concentrator to our room, we readjusted his cord so he had as much movement as possible. Every night I remember thinking how soothing the neverending hum was, I was never the one tethered to the machine.

I would lift Aid up into our bed and lay with him untill he drifted off to sleep. He would get so mad at me for trying to snuggle him "like a baby".

That lasted for a good 3 minutes. Shortly after that fiesty 3 minutes he would get angry I wasn't closer to him. He would turn his body...after moving his cord, yell at me to move closer, and pull my arm around him. Visually, the best thing I can offer you, is that I spooned him. The only difference is, instead of spooning, I was lucky enough in those few moments before he fell asleep to hold the whole world in my arms.

Every extra book he insisted on, every minute he fought his sleep, I wish I had back. Every twist and turn and kick to the throat I received during those countless nights of Aidan sleeping in our bed, I'd take any and every day of the week one-million times over.

I guess the lesson I take with me tonight, on this one year anniversary of Aidan's funeral....


Never take for granted the heaven you have beside you. Never let the little moments you have today seem hopeless. Never take for granted the magic you enjoy everyday in your children...you never know when you may loose it.




Tonight I had the feeling I was drowning. It's a lot less frequent the it used to be, but still ever present. The tide rolls me under, I struggle to breathe, I give in and let the all consuming wave of loss take over, and I try to imagine what a world without my light, my Aidan is to be.

All consuming falls short. The only reprieve from the growing tide is the light that now guides me, my Teagan. The light Teagan follows, her best friend, her protector, her big brother. My light in the storm, my soul mate, waits for me just beyond the dark, our Aidan, our superhero.

The beginning of the end

1 year post surgery....

The last year has offered both gut wrenching agony and so many moments we are greatfull for all the love and support we have. It has also moved slower then cold tar. I look for ways every day to offer myself and the insight I may have gained from our experience to the world. Although most days I find myself stuck and looking for a way to invigorate my daughters life, every now and then I offer a bit of "wisdom"if you may to those around me. I have an opportunity to write a paper that highlights all the aspects of life a "diagnosis" changes.

Making the decision to go back to school was, to be honest, hell. Anything from a mention of lab values to pediatric surgery triggers feelings of loss. So great and all consuming it's all I can do to write the words themselves.

Finding something to focus my efforts on, to pretend I'm normal, has offered me an outlet.

Today marks the eve of the one year anniversary of a surgery that would forever alter our lives. This hopefully miraculous act by a team of people dedicated to saving the life of my own personal super hero.

I only just today pulled up the site we created to keep everyone informed about the events unfolding.

Honestly I have been to scared to face the writing I posted and the completely candid pictures contained within.

Upon receiving a password reset, I took a deep breath and dove in.

The waters are all consuming.

The extrodinary hopes we had, all the prayers, all the dreams we placed in the medical teams hands. The undying love we HAVE for our son. It all went under the knife...

http://www.carepages.com/carepages/SuperAidsRexShunt/updates/2926899




As I sit here writing, I am humbled by the remembrance of sitting, late night in a Chicago home. My family all asleep while I write. Only hours before an irrevocable act would leave us forever changed as people, as a family.

The only thing I can offer is the absolute certainty my son was here for a reason.

I hear it all the time, "the had a message, a reason for being here."

Well, for me, this super hero, this love of a lifetime, this "never be the same" brief moment in time lives on forever. He lives in every breath I take. He lives in every time his sister tells me she sees a "big truck". He lives every in every time I hear his name or see his face.

I invite you to read a few words written one year ago and hope you are moved. Weather it's good or bad. Wether you feel something or not, this is one more amazing way my light, my everything, my SON touches everything and turns it to gold.