This weekend was the Special Olympics state softball tournament in Bowling Green, Kentucky and Bailey was participating with his team. His team exceeded all of our expectations and won gold. While I am excited for him there is a part of me that resides in the boredom bracket. I am going to be completely honest, after twenty-two years of doing the same thing over and over, I am beginning to feel like this is groundhog day. Are you okay? I basically said that I am tired and uninspired by the the monotonous routine of my son with Down syndrome. That may be alarming especially, after all, I am suppose to be a beacon of hope, right? But, guess what, I am probably not the only mom with a special needs family member that feels this way.
This is a marathon not a sprint
When Bailey was born, I hit the ground running. While it was beneficial for him, I didn’t know how to balance that with caring for myself. It is important that you have a life outside of the disability and not allow it to define you or your child.
Think about long term
Having a child with a disability is far more expensive than having a typical child because you are responsible for them for the duration of their life, not just eighteen years. And let’s face it, our government – state and federal – aren’t very helpful in those areas of financial assistance. I swear the social security office probably has my photo on the wall with a warning about me.
Don’t put your eggs in one basket
I made the mistake of only being involved with one organization that, at the time, was providing an outlet/resources for Bailey. However, now that he is twenty-two, that isn’t where he is getting his primary assistance, so now I wish that I had spread the love, so to speak, especially to organizations that are geared towards adults with disabilities.
I am exhausted. This is the time of our lives that we should be almost empty nesting. But, I am and will always be a mother to an adult with the mental capacity of a thirteen year old. That is my reality. So, when I write this blog or say this stuff out loud to people, I am merely be truthful. This isn’t for sissies. Parenting is hard, but add a special needs individual on top and it becomes a bit more complicated.
Surround yourself with people who “get it”
I have wonderful friends. They are supportive and loving, but many don’t have kids with special needs, so it is hard for them to understand how utterly draining this can be. I am lucky to have those that “get it” . They are walking the same road as I am. We can commiserate with each other. We celebrate the victories and bitch about the setbacks. It is important not to isolate.
Don’t burden your other children
It has been my anthem to Bryce that he is not responsible for his brother. I want him to have a life. I want him to do whatever he chooses even if that takes him to other places aside from our home. That is my message to him. If HE wants to be Bailey’s caretaker, then that will be his decision.
So, there you have it. Honesty served with a slice of reality. Don’t get me wrong, I would not change a moment of this journey. The world would be dimmer without Bailey in the picture, but there is a sense of redundancy at this point. Guess what, it is okay to feel this way. I can remember how guilt consumed me, but the reality is, in order to be authentic, I need to be as transparent as possible.
When his team won gold this weekend, I couldn’t help smiling and realizing that God has me exactly where I need to be and that Bailey IS happy, healthy and thriving. Keeping that in the forefront of my mind helps that feeling of monotony dissipate.