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Saturday, August 4, 2012

Reflection on life

On Wednesday I participated in a video interview at Easter Seals about my journey as a mother with a child who happens to have a disability. While, I have told Hayden's story many times this was different. The interview was intimate and gave me an opportunity to reflect on how four years has changed my life. You would think by now that I would not be concerned about what I say or how it is presented but I was. Sure, I have spoken in DC, given testimony a few times at our state capital, spoke in crowds of 300+ people and even written on this blog for all to see. However, Wednesday did not compare to any other times I have spoken about Hayden. It was almost cathartic in a way.

The interviewed started out explaining Hayden's medical condition, at least as we know it today. This was the easy stuff, four years ago, it would not have been easy but Wednesday it was. Wow, to think I went from being afraid to say my child was disabled to embracing who he is in four years is simply amazing. I remember December 31, 2007 like it was yesterday. Sort of surreal now, if I think about it. I went to the hospital ready to meet my son, ready to see what he looked like, ready to hold that precious being I carried inside me for 38 weeks. My labor and delivery was not the ideal fairy tale you dream about. In actuality it was a scary time in my life. A time that I did not know if I was going to pull through but I did. I survived one of the scariest joyful moments of my life. My road to recovery was tough, around eight weeks post partum I finally got my strength and blood supply back to normal, I thought now lets celebrate my new life I brought in this world. We cherished Hayden's calm passive demeanor. He was such a happy content baby. Little did I know there were signs at 3 months that something was just not right. However, six months came and then nine months came. It was time to face the reality Hayden was not hitting milestones like other children his age. I had to break down and face the facts with our pediatrician, who by the way is my rock. I have written before how much I adore Hayden's doctor, but I know today we are very fortunate to have him apart of Hayden's journey. The next few months were a blur, I went alone to an appointment to have Hayden evaluated. I was so uneducated at the time that I should have not ventured on this journey alone. Hayden was assessed by therapist and a developmental pediatrician. I don't remember everything they told me but I remember hearing your son has hypotonia and might be mentally disabled. What he has hypotonia and mentally disabled my son who was going to be a football, lacrosse or soccer star. This can't be right. I had so many dreams for Hayden and they were crushed, at least I thought at that very moment. I cried, I called my dear friend and cried some more. I was crying because I was scared, I was crying because this was not suppose to happen, and I cried because I was sad for my son.

Fast forward four years, I now know those feelings were normal. I know that I did not purposely give my son a disability. I know that I am truly blessed beyond words to have Hayden in my life. I have come so far in this journey as a mom of a child with a disability. I have learned to admit that my son has a disability and that is not a bad word. I have learned to embrace differences. I have learned to cherish the small things in life. I have learned that I am  a stronger person than I thought I ever could be. I learned how to fight for services for my son. I have learned to take things one day at a time and most of all I have learned to redefine who I am.

In this journey things have happened. Some things I wish did not happen, somethings if I could take back I would but it would not be life if there were not ways to learn and grow. Sure, I could call and talk to friends and family more. Sure, I could be a better worker or advocate but for now I am Renee. I know I carry my heart on my sleeve, I know I am strong, I know I am emotional, I know I love unconditionally, I am educated, I am compassionate, a good wife, I try to be a good friend and daughter. However, I do know I am the best mom I can be to my two beautiful children.

I am reading a book a dear friend let me borrow, the book is titled Bloom. I am not finished reading this book, but this book has made me cry. Cry tears of joy and cry because I had similar feelings about Hayden even though he is not rocking an extra chromosome. I enjoy reading books that make me think and challenge my perspective. This book has done both. Which reminds me I am part of a national program that is funded by our state's  disabilities council. In this program I meet once a month and learn more than I could have ever learned about being an effective advocate, parent, and well versed on disability rights.  This program like the book I am reading has changed my perspective. I view things differently, I believe my story does make a difference, I am a better mom and wife, and I am not afraid to knock on some politicians doors to get what I need done. Most importantly this program has brought people in my life that I needed in my life. People who get it, who have been there, who are parents of children with disabilities. I feel like they have been in my life forever, but they have not. However, I do know they will continue to be apart of mine and Hayden's journey!

I was always envious of my friend Danielle who wrote a blog. She is a far better writer than me, but mostly I was envious that she started writing down her thoughts somewhere. I thought at first I did not want everyone knowing what was going on in my life, but I soon realized I needed to write. I write to provide updates on Hayden and I write for me. I started this blog because we have a large family and we have many supporters of Hayden. It was a way to tell everyone what was happening in Hayden's world so I did not forget every detail. I often do not have time to make phone calls to everyone but I try to find time to make updates to this blog. It is important to keep everyone informed and it is therapy for me. What I cherish the most about writing is the support I receive. While some people might think I should have done this or tried that they support my decision to write about our life. This is all I need. I know I do not always have the right answers, I know that my views on procedures, tests, programs, doctors is not going to be the same for everyone. However, I do know I am making the best choices for Hayden.

Hayden has turned into an amazing four year old little boy. He has touched more lives in his four short years than I have touched in 34 years. He brightens my day and makes me laugh. Hayden is determined and full of life. I do not ever want to take that away from him. I do not ever want to let his disability shelter his dreams. Hayden is four and we treat him like any four year old. We go out shopping, eating in restaurants, family vacations, walks in the neighborhood, birthday parties, etc. Sure, I have people raise an eyebrow when they see my four year old not walking. People stare and wonder what is wrong with him and my answer to that question is nothing is wrong with him. He just happens to have hypotonic cerebral palsy. That does not define who Hayden is. Hayden will continue to be strong, full of life, happy, determined, and a typical little boy. As Hayden's mom I will continue to fight and explore what I think is right at the time for him. I love my little boy more than anything and that will never change.  So, I thank everyone for being apart of this journey with me. I thank you for the support and know that while I may not have all the answers I try my very best to make informed decisions. Thank you for loving Hayden, for who he is and what he has accomplished and thank you from the bottom of my heart for accepting our little family as we are.


  1. Renee,
    I'm so happy that our paths have crossed. You are an amazing individual and I love that you and I share the same passion about our children's lives; striving to ensure their lives are as typical as possible. This is a beautiful blog post and someday when Hayden is grown, he can look back, read and reflect upon his wonderful world. On second thought, maybe you should make him read this when he's a hormonal teenager! lol.
    A huge pat on the back for you, Renee, for posting such intimate details about your true feelings. It takes a lot to put it out there for all to read...I know it's not easy!! I use my blog to keep everyone informed and on the same page; from parents to friends, including those that used to be family and friends!! Which segways so beautifully to my next point...You can't waste your time on those that can't support you, Hayden, Bob and Julia on this beautiful journey that you have all embarked on. Having a child with a disability changes every aspect of your life, including relationships! Ask me how I know!! lol.
    I love you and your "little family" (as you call it). When's our next playdate?? :)

    1. Shawn I simply have no words. I love you and your support. Seriously, this girl cannot cry any more. Way to sweet!! xoxo

  2. This post is beautiful. (And thank you for the mention.)