Today is a very special day. It is my nephew's 5th birthday! It's a big one. Every birthday is important but this one is especially significant since on the day he joined us earthside, we didn't know if we'd get 5 hours or 5 days with him, let alone 5 years! It's been an incredible journey of love and strength, hope and devotion. In his early days he fought an amazing fight, and he is here to stay. He suffered a brain injury and severe seizures at birth and has since been diagnosed with HIE and Cerebral Palsy, but these things do not define him. He is an amazing little man and this Auntie is so very proud of the boy he has grown in to! On March 25th, which was International Cerebral Palsy Awareness Day, I spent the morning with him and his family to document their day. I also asked my sister a few questions about being a special needs parent. I am sharing it all with you in the hopes that we can spread awareness, acceptance and LOVE.
What is the most challenging aspect of being a special needs parent?
I have two. The first is fear of the unknown. As soon as we were told that Caleb had severe brain damage and what that meant, (they didn't know if he would walk,talk etc... we still don't know, but we are learning as he either meets the milestones or he doesn't) everything has been a "wait and see". It is very hard to deal with sometimes. The second is the constant frustration that comes with lack of communication. Caleb is very intelligent. However being unable to speak makes it extremely difficult to understand what he wants/needs. We get frustrated and feel helpless. I can't even begin to imagine what Caleb must feel like when he looks at something and wants it and nobody can figure it out... It breaks my heart.
What is the most rewarding aspect of being a special needs parent?
When your child does something for the first time at the age of 2 or 3 or 4 years old when you didn't know if it would ever come. Never knowing if it would or could happen. That first smile, laugh, roll. People take so much for granted and in this special life you really can't. Caleb told me through his eye gaze (a computer he controls with his eyes, and can use to speak for him) that he loved me... for the first time at the age of 4... The most amazing thing was hearing that. Even though it was not his voice saying it and they were words from a computer I still knew that those words were meant for me and that they came from him.
What is your favorite part about watching your kids interact with each other?
Their friendship. Knowing that even if Caleb never develops true friendships outside of his home (I truly hope that he will, but if it doesn't...) he will always have his sister. They laugh and play and argue just like typical sibling do and I love that. I was terrified to have another baby after we had Caleb because his injury was caused during birth, but I am very thankful that we made the decision to add Chloe to our family.
Do you think having a special needs sibling has had an impact on your NT (Neuro Typical) child?
Of course I do, but not in a bad way. She is still young so the questions that I anticipate she will have, have not yet been asked but she will always know a life far different than her friends. At the age of 2 she knows that medications are a part of Caleb's daily routine. She has offered to feed her brother and she wants to learn how to tube feed him. She can make him laugh, she tries to help him roll over because she knows he needs it, and when he is sick you see that hurt that we all feel, that helpless feeling in her little eyes. She has had to learn patience much quicker than the average kid because everything in this life takes a bit more time. Sometimes she has to come to the hospital and therapies and Dr's. appointments. She will grow up knowing that this is our normal and so far she is okay with it and I am thankful for that.
If there were 1 thing you would want people to know about your life (challenges, triumphs, support networks), What would it be?