Anger

One thing I rarely talk about is my anger. I was talking to a friend the other day about how it’s okay to stop for a second and not say what a blessing this life is. It’s okay to say that it sucks. Really really sucks.

I love our son with special needs with all my heart. I love every single hair on his beautiful head. I love his grin and I could bottle his little giggle and keep it forever. I love him, but there are many days when I don’t love the journey. The journey of anger, jealousy, sadness, and heartache.

I’m angry that last week I cried mourning the loss of a child affected by CDG. I’m angry that it could be my child. I’m angry that I silently listen to other people’s conversations about mascara and the newest butt burning workouts while my heart is breaking inside. I’m angry that a mother I met a few weeks ago is holding her 6 year old with terminal brain cancer and she’s telling her it’s okay to go. This life is not for the faint of heart. This life is not easy.

I’m angry that I did everything “right.” I didn’t do anything to jeopardize my pregnancy or the health of my child and I still ended up with a child who has nearly everything wrong in his body. I ate spinach salads, never had a sip of alcohol, and held my breath near cigarette smoke. I took extreme care of my little guy while pregnant but yet somehow mothers who abuse drugs and alcohol can have a healthy child. This life is not fair.

I’m angry that I just can’t relate to other moms. My perspective is so very different. My priorities are not the same. I’m busy trying to get my two and a half year old to sit on his own and clap his hands together. I’m busy keeping my child alive. This life is lonely.

I’m angry that this is not an acute episode. This is not something that will ever go away. We will be fighting for our child his entire life, even into adulthood. We will fight for him to have abilities that come naturally to most children. We will fight to keep him healthy. There will be fights with education regarding what we feel is best for him, and fights with insurance to cover equipment or services. This life is forever.

I’m human. So, yes, some days it’s hard to embrace the life we’ve been given and look on the bright side. There are definitely dark days, but I know we’ve been handed this journey for a reason. One thing I know for sure is that we can do it. We will never give up and we’ll kick ass and take names along the way.

Follow our story on Facebook at https://www.facebook.com/teamchristopher1