This is how much I love my son

I’m trying to outrun an avalanche about to suffocate me. I am in a cave. It’s pitch black. I can’t find the exit. Someone is chasing me and I drop to the floor, curl in a ball and hope they can’t see me. My teeth and hair are falling out and I can’t speak to ask for help... and these were my dreams for just last night.

It’s not easy loving and caring for a child with Cystic Fibrosis. Scratch that. It’s easy to love him. It’s difficult to provide him with the best care possible that he needs to thrive, everyday of our lives. This is when you really realize what the difference between being wealthy and being a struggling, working parent is. Don’t get me wrong. I do all the things I must do to help my boy. But imagine if I was able to afford around the clock access to care. The person can just be on stand-by for when we need them. I’d pay them to watch TV and hang out by the pool just so they would be there to jump into action when needed. Because basically I can do most of the medical interventions needed, but we’ve been through some scary times when the ride in the ambulance or the car has been so painfully long that I prayed my child would not die en route. No one should have to live like this. It really is my kids and me against the world.

We don’t have a choice. I am not independently wealthy. I am a divorced mom with an ex who pays the absolute minimum. Here is my promise to myself and my children. Although I am a struggling, budget balancing mom with a full time career, I have a healthy lacrosse playing sweet teen girl about to finish her junior year in highschool and going to the prom with her boyfriend.  

Her: Mom, I think I love him.

Me: That’s sweet.

Me in my head: Are you crazy? You are 16 and don’t know much about life much less love!.

Then there is my charming, intelligent, handsome son who is repeating 10th grade, desperately wants a part time job, and struggles with his health on a weekly, daily and hourly basis. He never has a break from CF. And he never goes to sleep without kissing his old momma.

I try to be superwoman, but it’s exhausting. I know... I know… who am I to complain? Other than premenopause symptoms I am healthy. But I am human and I get tired, cranky, hungry, hangry, and sick, with a head cold, PMS, a headache or sore muscles. I get sick and tired of being sick and tired. Again, so what? How can I complain about a little headache when my son has CF? Because taking care of him when I am running on all cylinders is difficult for us both. When I am not at my best we both struggle more than usual.

Without a partner, or help with his needs, there’s no safety net or stunt double, no partner in crime to take over until the Excedrin makes my headache go away. I try not to be short with my son but my temper gets to me at times. When he bites my head off, counting to 10 doesn’t even help. I get mad. And then I cry. He gets mad. His eyes well up with tears of frustration and I want to beat myself over the head.

What I have learned about raising children is this:

It seems sometimes (okay, occasionally) there’s not much of a difference raising my daughter and my son. These are the 4 pillars of parenting in my book:

• Cause and Effect: If you do this, this will happen. If you don’t take care of yourself the way you are supposed to and have been taught, I can’t make magic happen.
• Health Issues: If my daughter doesn’t get enough sleep she is cranky and doesn’t do well at school the next day. Worse, she might get run down and sick. If my son doesn’t stick to his daily routine to be followed like a bible, he will most certainly get rundown and even more sick. The difference is when he gets rundown, it can quickly turn serious and even possibly lead to death. This is no joke.
• Responsible Adults in the Making: Both my kids are in their mid teens. I teach them to be kind, empathetic, responsible and to be grateful for what they have. No difference there. My daughter takes her health for granted. Trust me when I say, I remind her how blessed she is. My son takes his ability to bounce back based on history for granted and I remind him how blessed he is and how careful he must be. I can’t baby either of them and they must equally learn to fall, wipe their tears and keep going.
• Taking care of me: As much as teaching my children is about me as a parent, there is me as a person, a woman, a sister and a friend. Just like with oxygen masks on a plane---if I don’t get the chance to put my mask on first, I will be useless to them. They understand the CF support group I belong to is of the highest priority. It keeps my depression at bay and reminds me I am not alone. Other parents who share the same experiences, challenges, and successes help get me through each week. When I go to the meetings, it’s like filling my car up with gas. It gives me fuel to continue moving forward.

I am not superwoman. I am barely average-woman. But I love him with all my heart and will continue to care for him until the day I die, or this illness takes him from me. That thought puts me over the edge. I swat at it to make it go away. I visualize a big giant stop sign so I don’t go to that scary place.