Our Blog & Our Goal

We set up this blog to keep our family and close friends posted on Kennedy during her time from the day we suspected a problem to each and every follow-up appointment following surgery. They day I received the news that we need an MRI, I was alone at Kennedy's 9-month well-baby check-up. I had no plans to hear the news I was about to hear. I couldn't reach Nick on the phone and both of our parents encouraged us to be calm and wait to see what the test reports said. I knew they were right but in my heart of hearts, I knew what the diagnosis would be. All of our internet research appeared to confirm the outward markings on her body and then eventually matched the wording from the MRI report. But with that said, the internet proved to be very scary for us. I laid awake many, many nights wondering what TCS was, how it related to Spina Bifida, Spina Bifida? My child might have Spina Bifida? Will she be able to have a normal life? a boyfriend? play sports? etc. Seriously, the agony and worry went on and on. Being a mother is a blessing but for those short weeks from potential problem to surgery date, the burden of worry was strong.

The internet scared me in so many ways! I could not find one story where a child with my daughter's potential diagnosis came out OK. I feel and hurt for those families whose child has suffered, and in turn, whose families have hurt. I thought there was no way Kennedy would have a normal life. How could Dr. Fuchs steer me wrong?

This blog is to show other families that hope is out there. Since the time I started it, I have been contacted by four families about to endure the same surgery and each one has thanked me for the relief my blog has shared. These contacts have been some of the most meaningful contacts I have ever made. I want to wish their babies/children a healthy and happy future.

Today, Kennedy is almost 13 months old. She is walking, saying several words and occasional phrases, imitating us regularly, dancing to every hip/hop or rap beat she can find, kissing her Elmo and babydoll, talking on Skype to her grandparents, and living a completely normal life. We are reminded of her events only by the scar on her back when exposed during diaper changes and bathtime.

We are aware that the 40% chance of re-tether could be in our future. But today, we live our life without fear and with a renewed sense of fulfillment. I challenge you to do the same thing. Be incredibly thankful for your loved ones and let them know it. Don't just say it, feel it. Everyday I look at Kennedy and get excited at how great life is. She brings me the joy I never knew I was lacking! I love my little family.