Several weeks ago I was shocked at the statement of someone I trusted, someone I thought I knew well and someone who works in the medical field. We were having a conversation about where I am at in my life today, what I gave up with Sophie’s birth and with the decisions I have made including what the future looks like for me and my family.
I agree the decision I made to stay at home and care for Sophie came with alot of sacrifices but I know without a doubt it was the right one, I have no regrets. Have I struggled? Yes. Has my family struggled? Yes. Has it taken a toll on us? It did for a while but we have survived and continue to move forward with a positive outlook. I would never wish my child away, neither of my children they are my life.
The statement from this person was ” People should have all the facts about having a child with special needs, especially a child that may require so much from a family so that they can make an educated decision. It’s not just about having the baby but the lifelong commitment and responsibility.” While I agree for many it’s important to know why and have options for me there was never any other option. What I don’t understand is why instead of offering support or positive outlooks must it always be so negative.
I was blindsided by this comment, I found myself speechless (and that’s rare for me). I felt as if this person was saying I should have terminated my baby had I known she had Cri du Chat Syndrome. Maybe I am misinterpreting the comment but I will never see that person in same light again.
Had I known Sophie would be born with Cri du Chat Syndrome I would not have terminated her. Even if I had been told she would not survive but maybe a few hours, I would have given birth to her and allowed her to live even if briefly. Why? Because she is a human being above all else. Because she did not ask to be brought into this world and being different is not a death sentence. My daughter is a gift of perfection. It doesn’t matter how imperfect society may deem her to be to us, those who love her she is perfect. Because she is my flesh and blood and a child of God. And even she would be here for just a brief moment she exists and her life is worth it. Sophie validated with her first breathe my belief that we are all here for a reason and we all have a purpose in this life.
I never thought I would be in this new world of special needs. But I will say in the last four years of my life since Sophie’s birth I have lived more than all the years before that. Some might say, “Charity is crazy”. I already hear it all the time. You gave up your financial stability, you don’t go out much anymore or take vacations but what I do have is a better understanding and respect for life. A better understanding of who I was meant to be. I appreciate the smallest of things and slow down just enough to catch those amazing moments my children have that often pass us by. I realized that all the years I lost with my children I will never have back. I live just in a different light. A brighter light full of kindness, compassion and love. I realized who was worth keeping around and who I had to let go. I realized that I am worth more. I have met so many amazing people and forged amazing friendships. I have unlimited amounts of AMAZING moments instead of one or two big ones. Even through all the sickness and struggles I am grateful for the changes in my life. Our lives are a journey how we choose to embrace it is our own decision.
Had I been given a choice of having a child with special needs I’m sure I would have opted for a healthy normal child back then. I was always terrified because there was a sadness and stigma associated with having a child with special needs. But then I would have missed out on the amazingly beautiful person my child is and this amazing new world of extended families.
My daughter is not a burden she is my blessing. Will our lives always be difficult? I imagine it will but it’s not the end of the world, life goes on and you learn to move forward and you cope.
Had I known she would be special it would not have changed my decision to bring her into this world. I thought the bible says we must accept and love one another, none of us are perfect. Perfection lies in the soul and I can guarantee that our special children are pure perfection, the way we are all intended to be.
Someone once told me that children with special needs are born this way because they are angels. That their souls are so perfect that this body just cannot handle it therefore their bodies become imperfect but their mind and soul are something greater than what we can imagine. I like to believe all that he said is true because when I look into my child’s eyes all I see is perfection and an angelic feeling of peace I cannot explain.
Had I known……..it would have changed nothing.