I never imagined my life would be this way.
Feeding pumps, medical supplies delivered each month, carrying a 34-pound child around who may never walk or care for himself in any way independently.
By no means am I looking for sympathy. No, sympathy is one of the worst responses you can give me. I hate those pity stares when we go out sometimes. I remember going to a basketball game one time with an ex-boyfriend to watch his daughter play. The looks are something like a combination of, “Oh, I am so sorry that your child is different,” with stares of curiosity and wonder like, “I can see he has his own language and is speaking it quite loudly. And his mannerisms are very different. How odd!” I prefer the second, because at least it is more inquisitive, and less sympathetic. I don’t need your sympathy, and I promise our life is actually not as bad as you might expect it to be.
Other than being a single parent. Other than the constant fight for services. Other than I wish I could have typical mom friends. No one really understands, it seems, except other moms whose kids have special needs. And they are all either far away or very busy and also struggle with the same things I do, like seeking support and putting myself out there. I know we are very needy, and so I try and do the opposite and just hide away, because I do not want to be disruptive to other peoples’ lives. And because I’m just not quite sure that they care about what we go through, if I am being honest.
I was able to adjust to this life very early on. Or at least attempt to. I made peace with it right away. Because it wasn’t a choice.
My son Vinnie had a hypoxic brain injury at birth due to medical negligence in labor and delivery. Now, that was a hard one to swallow at first. Very difficult. But I had to come to terms with it and face it, because if I did not, it would surely eat me alive. It almost did.
I struggled to get out of bed every day, probably for the whole first year. But I devoted myself to networking with other similar families from across the country, learning from their own experiences and challenges, and learning that I was not alone in what I was facing. I was not the only one this had happened to.
Suddenly the world was a bit brighter. I still was scared of doing all this and the road that lay ahead of me, but at least now I was more prepared.
I researched all of his conditions. I learned more in that first year than probably most parents learn about medical jargon in their entire lives. I was learning to embrace our differences. This life was different, yes. But less than, no.
There was beauty to be found in each moment. Tiny little progress was made. He smiled. He learned to sit unassisted. He did regress in some things, like feeding. Typical brain injury. Gaining a skill, only to lose it later. But he was perfect amongst all of the chaos.
He taught me things that I never would have known without him being a part of my journey. I started to see all of the people with disabilities everywhere for the very first time. I no longer saw them as weak individuals. No, they were the strongest of all. Relentless warriors with unspeakable strength. The unsung heroes of the world. Angels on earth sent from God to make the world much more beautiful. Each one, a unique story of perseverance.
I developed so much pride in my son and no longer was ashamed of our story. In fact, I learned to share it whenever possible. And I noticed that the more I shared, the more I healed, the more I empowered others, and the more I encouraged them to heal.
The Impact on My Life
I decided I needed to pursue a career in the mental health field. I had always had a huge heart for social services and helping others. The more pain and struggle that life showed me, the more empathetic that it seemed to make me. And I knew it was a calling. I was here to help others on their journey and to provide them with that support that I had never quite found for myself.
Gandhi said to be the change you wish to see in the world. I never knew how true that was until I had my child with special needs. He changed my perspective on life — on everything. He opened my eyes to things that never would have been possible. I now know the importance and beauty of life, and how precious each moment and each day truly are — and how quickly that can be taken from us. I have learned that there is meaning in life without typical worldly things, such as walking and talking.
My son may use a wheelchair and be blind and nonverbal, but he can still have a great quality of life! His disabilities do not define him. His purpose is much greater! He is here to love. He is here to play music. He is here to laugh. He is here to bring beauty to a selfish world.
He is here for a reason. And he is my reason, too.