I recently received an email from a friend from college....someone I hadn't talked to, well, since college. No reason really for us not talking, we just each went our own way. She's an Occupational Therapist and recently met a family who just found out their baby will be born in March with Spina Bifida. This young couple is so broken over the diagnosis, has no family close for support, and really don't know what to do. My friend asked a simple thing of me: Would I mind writing them a letter, telling them of our journey, where we've been, how far we've come, and any other words of wisdom I wanted to share with them. As I sat down to write this letter, I was at a loss for what to say. There was so much I wanted to say, so much they needed to hear, but I didn't really know how to start. I didn't want to say, "I'm sorry." Because I know how much I hate people saying that to me. I hate when people look at Brenden walking with a walker, and say, "Oh honey, I'm so sorry he has to use that." I'm not sorry, I'm glad that such a thing exists to allow him to walk. I'm glad that he has gained the strength in his legs to be able to use a walker. Moving on....so I emailed my friend telling her I wasn't sure what to write. Her response, was simple, "What does having a child with special needs mean to you?" And those 11 words were all I needed.
The hours following Brenden's birth were gut wrenchingly painful. I experienced every emotion possible. I cried. I cried some more. I told my dad there was no way I could do "this." Not realizing then what "this" was. I was thrown into an unfamiliar world of neurosurgeons, urologists, OT's, PT's, Speech Therapists, and specialists I had never heard of. No one asked if I wanted to be in this place. And back then, I didn't want to be. But God had chosen me, and as much as I hated every minute of it, the UVA NICU was where I needed to be. It was where I held my baby boy for the first time. It was where I heard his sweet cry for the first time. It was where I realized just how lucky I was because I knew he would make it, when some of the babies around him would not. It was in that NICU that I went from being a scared young woman to being a strong mom. It was in those moments of not knowing what the future would hold, that I realized I had no choice but to dry my eyes, pick myself up, and do what I needed to do. I had a choice: sit around and wallow in the sadness that my child may never walk, talk, or have a "normal" life, or make sure I gave every ounce of my being to make sure he had a better than "normal" life.
Having a child with special needs is no easy task. But it's the most rewarding thing I have ever experienced. It has taught my patience (though I could use some more). It has taught me that nothing in life should be taken for granted. It has made me realize how much the little things really do matter, from small milestones to the big ones, each moment is to be treasured. It has allowed me to see things for what they are really worth. Having a child with special needs is not a burden, despite what so many people think. I have learned that the world is ignorant when it comes to differently abled children, but it's my job to educate others, so that someday, it won't matter that a child needs to use a walker or wheelchair.
I have found strength I never knew I had. Whether it's having the strength to speak up with I disagree with a doctor or the school system, or finding the strength to put my child into the arms of a surgeon, Brenden has made me strong. He makes me want to make a difference in this world, not only for those living with SB, but for every person who is differently abled. I want doctors to realize that a child is not defined by a diagnosis.
Spina Bifida is not an excuse in our household. We don't allow it to be. I don't pity Brenden, and it drives me nuts when other people do. He can and will go far in life. Nicole, Brenden's PT with Birth to Three, told me several times to never lower my expectations of him. And I don't. He's expected to do the same things as Madelynn: put his dirty clothes in the hamper, pick up his toys, put his coat away when he takes it off, etc, etc, etc.
To sum it up, being the parent of a child with special needs is a pretty special thing. It's not always peaches and cream, there are days that I wish I could make it disappear. But for every day like that, there are twice as many days that make me thankful to be in this place, thankful that God saw fit to trust me with Brenden.