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Tuesday, April 17, 2012

Ideas and Ideas

For years now, I've been doing everything I can to get Kadyn's story out there. I don't want anything from it, I just want to make Hydrocephalus awareness as popular, Breast Cancer, Autism, Leukemia ect. For Hydro being the number 1 cause of brain surgery, for 1 to 2 in every 500 children born with it, why is it so uncommonly known!! I don't get it. My life goal is to make the Awareness and this condition known! I'm not only doing this for my son but for everyone who is on the same rocky boat, the ups and downs, the worries and concerns. Why is it that news stations, news papers have ignored me for so long. I will not stop fighting for Kadyn, and for everyone else to close to my heart who have this condition. The different stories. The every day struggles, the ups and downs, the shunt malfunctions, revisions, infections.

How it is a boy who has had over 26 brain surgeries, 4 other surgeries, has 3 major diagnosis, and many other minor ones, who has survived all of this when he was given not even an ounce of hope from doctors not an amazing story.

How is it that the other children who have been through the same thing, or possibly even more not amazing stories either. I know it's impossible for all of our stories to be heard, but they can be heard through the voice of another! The amazing stories of life, and should be heard!

I know, and have met (more through internet) so many amazing parents and children who have Hydro. I would have to say these people are my closet and best friends, although most I have never met. We share a common goal. Our children's health. Keeping them as healthy as possible. Doing everything we can to ensure our children's comfort, safety and health. These parents are among the strongest people I know and their children, are even higher on that list. All of us have been down the same road. It doesn't matter if you're child had 1 shunt surgery or 100, in my eyes the first one was way to many.

Can you imagine, going in  to see you child through ultrasound, the joy you felt, the butterflies in your stomach. Every time you went to get an ultrasound the excitement. That is something I missed out on. My ultrasounds were nerve wrecking. Measuring of ventricles, head circumference, looking for any other abnormalities that could possibly show up. Watching my sons head get bigger and bigger and having no control over it. Knowing his chances of survival are bests out in the world then inside my womb.

Delivery day, suppose to be a happy exciting day, if for most, but for me, it was scary. Not knowing his fate for 7 months. Not knowing if I would be planning a funeral or bringing my baby home. Wondering about his future and the hardships to come. Not knowing what the next few weeks would bring us. Knowing we would be apart because that hospital was not equipped to give him the life saving brain surgery he needed.

I am unsure if any other hydro parents felt as I did, but all of that time made me stronger. It made me who I am now. I am able even as a "young" mom as most would say, stand up and say I DID IT and I did the best I could do. My son's life saving device is implanted in his brain, and could malfunction at anytime, day or night. It's like a ticking time bomb waiting to stop working. Although my son's shunt has done us proud for 2 years! I am thankful.

I will get his story out, and one day you guys will see the link posted onto my blog about it!


Angela Julia said...

Dear Sara, from Italy I am following your life with Kadyn since I came accross your Blog, a few years ago.
Your strength and love for your precious son is a model to everyone.
Take care, bis hug to you and lots of kisses to dear Kadyn.

Angela Julia

Bonny said...

After a bad day at our Neuro appt today I have started to read others stories to get some more strength, thanks dal ur story has given me just that :-)