My motherhood journey has changed for the better since I found out that my premature, 32-week, perfect little boy had been diagnosed with Cerebral Palsy at one-year-old. Upon learning this, there were a lot of emotions that came along with the diagnosis: anger, worry, guilt, acceptance, and even thankfulness. I decided shortly after learning this that I was going to focus on acceptance, thankfulness, and on being the best advocate for this amazing gift that I had been given.
I am thankful that his disability is mild and can improve with time. However there are days that I grieve in the knowledge that his path is not going to be similar to that of his siblings. My heart hurts when I am in a meeting for him and I have to listen to a list of things that he cannot do. I tell myself that he is the most loving, sweetest boy; so what if he can’t say the “P” sound properly, we will keep working on it.
I feel guilty that I have to take my attention away from his siblings to make sure that he is getting all of the services that he needs to help him excel. It is hard to see and hear others’ reactions when I tell them about him. I don’t want the world to treat him differently…but I know that this is inevitable. I work so hard to make sure that he is accepted, while at the same time teaching him that the world is not going to change for him and that he has to change the world. I truly believe that I was given this boy to humble me as a mother, to make me appreciate the little victories in life, and to be grateful for this amazing village that supports him.
I felt that it was important to share my journey so that Moms who are struggling with something similar know that they are not alone. I have found an amazing community of Moms that understand the struggles that come along with a child that needs extra help; a group that encourages and listens to me, only because I opened up and asked for help. To other Moms that may be struggling, know that it is okay to have those bad days where it feels like that it is not going to get any easier. There are going to be days that you fight to keep it together or have to push harder to get someone to understand that your child might need some help. Know that it is okay to be a strong advocate for your children. It is okay to fight for what they need, even when you feel like you don’t have any fight left. Know that it is okay to celebrate the smallest of milestones, because it is a big deal and they have worked so hard to get there. Most importantly, know that your baby is perfect as they are, not different or strange, and you have been given this amazing struggle to teach the world a lesson on acceptance.
-Kelli Meisner