Realities of having a child with special needs
The realities of having a child with special needs! This is the annual MRI day for our son with tuberous sclerosis. Many hopes and prayers for no surprises.
Struggles of being a special needs parent
This is also the day when for a short while, I think about: “Why does he have to go through this?”, “Why does there have to be such conditions like this”, “Why on so many levels…..”.
Back to Gratitude
Then I shed a tear or two, and I get back to gratitude…. I have gratitude for a child who is amazing, a wonderful brother and friend, a child who has taught us more about living life and loving more than we could have ever imagined.
The blessings of his sisters who love him for who he is. They take his toys and then hug and love him. The blessing of an amazing hospital in Children’s Hospital & Medical Center and the Tuberous Sclerosis Clinic at Cincinnati Children Hospital with doctors around the world who are working tirelessly to help our kids. They are always developing medical advances that at one time was not possible. We are greatful for the blessing of an amazing organization in the Tuberous Sclerosis Alliance that strives to help our children, families, and clinics all over the world!
We are also blessed with his school, classmates, teachers, paras, and staff at Lewis Central, who are #1 in our book, who love him help him, and challenge him to grow.
Grateful is an understatement when we think about the blessing of our family and friends. Who are always right there with us, loving, accepting, and more importantly, embracing the journey with us.
We’ll always remember
We will never forget the 36 hours that forever changed our lives and the words of the physician. The doctor told us our little 6-month-old child had tuberous sclerosis and infantile spasms…that was 8.5 years ago. This wasn’t the journey we had imagined with our firstborn child, but we are truly grateful for this journey. Looking back we are grateful for our son, daughters, and everyone around us.
Having a child with special needs
We live this daily. For many, the annual MRI day is a reality of ‘Oh yes, Dexter has tuberous sclerosis and our worlds are quite different’. Yet, at the same time, we are so similar. At the end of the day, it’s about love and gratitude for all we have been blessed with, and we couldn’t imagine a life any different.
Thank you to all the amazing people in our lives. You have no idea what each of you mean to us!