Sitting in the doctor’s office, trying to understand the immensity of what is being explained to you. All your hopes and dreams about the life your children are going to have and the realization that it’s not going to be like that. It’s a shock and takes a huge amount of time to get over that shock, but we did.
As parents we needed to gently guide our innocent boys through the struggles, we would all face together. Yes, we were and still are devastated, broken, and grieving but a consciousness began. An understanding that even though we are faced with this worst-case scenario, we have to see, find the good. I had to discover that you have to adjust to a new lens; seeing the world as it actually is and not how you thought you should see it. And it’s an awkward thing, navigating life when yours has been turned upside down.
Rediscovering who you are as a woman, mother, wife and person and who you are as a family and that maybe there is a purpose to this path? Addressing this diagnosis directly; researching, understanding, educating and advocating.
We sought out groups and parents with kids in the throes of the same issues. When you have a part of your life that is so different from everyone else’s; it’s nice to find your people that can identify with that part of you too.
Through this journey we have met some amazing people; people I wish I didn’t know yet can’t imagine my life without them in it. These friends and connections we have made are our greatest assets and part of our new world.
Yes, our new world involves numerous medical appointments, therapies, treatments, and medication but so much more. We have taken part in accessible skiing, sailing, and soccer to name a few. The boys embrace those opportunities as it enables them to experience what their friends experience but I feel in a more meaningful way.
Having disabled children has made me a better person; my heart is more open, I am more aware, accepting, tolerant, creative, balanced, independent, and less selfish. It has strengthened my marriage and made us both stronger and we each play a different role to help each other get through the tough parts.
My boys have provided dimension and fostered a sense of pride in me. Their knowledge, insight, methods for overcoming fears, ability to put their mind to something and take a chance, and for becoming their own advocates.
We have learned so much from other families who view their circumstances and live their life in a positive light. That positive mindset that living with a disability is not tragic, but enriching and rewarding because none of us are guaranteed tomorrow so embrace today.
