Hard Days

There are days when it is easy to accept the road we are on, easy to just go with the flow, easy because I focus on how beautiful my kids are and how much fun it is to get to know them.

Then there are moments when it pretty much just sucks that my kids have to be different, that things that come so easily for a normally developing kid are so much work here. Moments when it feels like somebody took a knife and plunged it into the deepest part of my heart. Moments when my son looks at me with tears in his eyes and asks me to help him and I can't. In the moment there is nothing I can do. I can't make the (expletive) trike pedal straps work, can't keep his feet on the pedals, can't will his trike to work so he can go riding off with the neighborhood kids, can't make his wheelchair look like a bike so he can fit in. I feel so helpless and frustrated and angry and fiercely protective.

Today, I hate spina bifida. I hate the issues in our world that make spina bifida a part of life for so many people. I hate that my child has this. 

And, yes, I know all the Ms. Mary Sunshine (apologies to those named Mary) phrases and sayings, meant to make the people saying them feel better for having said something but making the person having the big feelings feel stupid for expressing themselves.

The truth of the matter is what it is right now. Having a child with special needs encompasses all aspects of the emotions and frustrations and triumphs and heartaches that come with it. Today at this moment is a crappy day. A little later I will hug and kiss my child and make blueberry pomegranate juice with him, we'll patch up his baby doll with some kisses and fake patches and he'll head out to swing with a huge smile on his face.

It's all part of the journey.