I'm often asked what it's like to raise a child with special needs. How do I cope? It must be so hard...
It is hard. I worry about Bean's future. How will his symptoms manifest over time? Will he "catch up" developmentally? Will he have a lot of health problems as he ages? Will he have all the resources he needs in school - and beyond? Will he be able to live independently? Will we be able to provide for him financially?
It is hard to stay calm sometimes. Bean is a lovely, charming little boy but he also has a lot of extreme sensory issues and can throw a fit that would make ice lose it's cool.
I don't get any sleep and I have drastically modified my diet for Bean's benefit.
And then there's the whole balancing life with another child, close in age to Bean, that has his own needs and demands just as much attention as his brother.
But I can't dwell on these things. Bean has Williams syndrome. It is not going to change. It is not going to go away.
I can't let this consume me. I need to have a positive outlook. I need to accept this as just one puzzle piece - of many - in my life.
Everyone has problems. There's cancer, divorce, job loss, lack of health care, discrimination, and natural disasters - just to name a few. Some people have more problems than others but we all have problems.
We are not, however, just a composition of our problems. There's so much more to life than that. There's so many positive things to focus on that I choose to leave little room in my head for life's many challenges. Don't get me wrong. I have my moments. I get tired and lose it sometimes but I really, really try to keep a positive outlook.
Maybe I'm just naive. Maybe the entire weight of Bean's diagnosis hasn't REALLY hit me yet. He is a relatively healthy child with Williams syndrome. He has delays but he is progressing nicely in terms of development. He drives me crazy sometimes with his little meltdowns but all he has to do is smile at me and it melts my heart. And things will likely get more difficult in time. But I sincerely hope my outlook and my approach doesn't change.
I want to focus on the positive things in life while making sure that the challenges we face are receiving all the attention and care they deserve and warrant. I want to maintain that balance with emphasis on the good. Yes, my life can be hard but it isn't any harder than anyone else's with young children - we just face different challenges. I am fortunate in so many ways. I have a beautiful family, an amazing husband and two sweet little boys. We have a home and two dogs and a cat. We have our health. We have a wonderful support network made up of family, friends, therapists and doctors. We celebrate all the positive things - all the accomplishments, milestones and inchstones. I think we have it pretty good. But then, that's just my take.