A miracle, pure joy, light of lights, inspiration and amazing beyond words, my son.
Evan was born at 28 weeks, seven minutes after his twin brother Robbie. From the very beginning he had to fight to live. With every ounce of his 1lb 12 ounce body, he faught ... and won! The doctors told me that I was a selfish mother, that not pulling the plug on my son was my way of satisfying my own need to be a mother with no regard for my son. I was told he would be a vegetable, a shell of a human being, a lost cause. He wasn't giving up and dang it, neither was I!!
Here we are today and my son is a beautiful eight year old little boy. He is always smiling, always happy and he is beginning to talk to us. He can only say one to two words at a time but those one to two words grab my heart and fill it with more joy than I can explain. While his personality and attitude soar to new heights almost daily, his body has failed him. Evan has to use a wheelchair, unable to walk, sit up or even crawl. This breaks my heart. I carry so much guilt ... if only i could have carried him longer!! I want to heal my son and I CAN'T! He has pains that he can't express. He has needs, wants, from the simple to most important that he can't ask for. And I know he has questions...why am I this way mom? Why can't I do the things my brothers and sisters do? Why can't I feed myself... just feed myself? Why can't you fix it!?! I want to know what my son is thinking! I want to know his hopes, his dreams, his thoughts about our family and himself. Does he remember the Christmas he met Santa? Does he remember his family members that have passed away? Did he like the cake I made him for his birthday? I want to talk to my son!!!! I want to talk to him so badly, my heart aches. I want to hear his voice telling me anything and everything!
Evan, I adore you son.
Jenn----I really didn't realize all of the questions that you continue to have, let alone how you were challenged on day one. It is really beautiful that one day, Evan will be able to read and understand the beautiful gifts you have already given and continue to give him. You and Rob have such a beautiful family, and should be very proud of your contributions. All of your children will grow up as beautiful adults that have an appreciation for all people, all ethnicities, all sizes, all ages, regardless of labels that are put upon them. What a testament to your parental skills. Our love to you and your family....
ReplyDeleteTony (Susan, Kevin and Kelsey also)
Tony that means so much to me! Honestly your words are like a big hug that I really needed. Thank you!
ReplyDeleteI stumbled across your blog, and was intrigued to see you had a son with a disability. I have two disabled family members (one with autism and the other with cerebral palsy), and am always interested to hear other people's experiences and thoughts of raising or being with someone with a disability/impairment.
ReplyDeleteThis post really touched my heart, and it is so clear to see that you love your son with all your heart, which is really beautiful.
Just keep staying strong and positive for Evan, that's the best you can do for your gorgeous boy.