We don't get sick days

    When you are looking for a new job, one of the things all people consider is the amount of vacation days, personal days or sick days that are available to them. However, when I was expecting my son, no one gave me an outline of what to expect. What benefits were available. No one said vacations will never happen. Personal days, let alone personal time to take a pee would be a joke. And sick days? Mom didn't tell me I wouldn't get sick days!

    Add special needs to the mix. Even if you CAN sneak away for a minute to use the bathroom, the entire time you're sitting there, you're wondering what your precious angel is getting into. Rare occasions when your angel is sleeping and you try to take a quick shower, you wonder the entire time if angel will hear you, wake up and get into something. Or worse yet, try to unlock the door to go for a walk alone. How about vacation? IF you can afford this luxury, it's not really a vacation. Let's face it, a new place offers new worries. The unknown is uncool for our kiddos and for us. So now we must pack for every what if, because we need to be prepared.

 



We took a vacation this year. This was JUST Liam's stuff (and not counting all his foods or the all the beach stuff we packed for him)











     Now add chronic illness to this mix. (I have many, but let's just use fibromyalgia) There are days I can't move. Well okay, I can, but to do so causes excruciating pain. So I don't want to. I don't get a sick day. I can't look at my son and say, "Mama can't do that today buddy." Nope. No way. No how. I must persevere. I must ignore that I feel like I was hit by a truck. I must hide my pain face. (You know, those experts that say our kids aren't empathetic? Well, we all know how wrong they are.) My son can't see me in pain or he will break down. He will then perseverate on me and if I will be okay. So you brush away the tears. You bite back the pain, and you deal.

    As a matter of fact, I have been in a flare for 3 days now (if you could see my house, you would be appalled.) Anyway, I have been keeping him occupied with his lessons, board games, video games, etc. I play with him from my chair. He kept asking to carve one of his pumpkins. How could I refuse? So while all I wanted to do was lie in bed with a heating pad and take a nap, instead I gutted a pumpkin (He doesn't do pumpkin guts. Sensory yuck for him) and sat with him on the floor while he carved it.



So I guess what I'm getting is, when I was "preparing" for this gig as a parent, there were MANY things I didn't consider. Many things I wish I would have asked about. Special needs parenting wasn't even on my radar, so that blew me away. Regardless, I wouldn't trade this "job" for the world. I don't get many vacations. I don't get personal days. I don't get sick days. What I do get is unconditional love. I get to make a difference in the life of a child, and that's enough for me.