Not Today.

For the first time the other day I was referred to as a "terminal mom", which is short for I am raising a child with a terminal illness. Or as some people have more morbidly put it, I am raising a dying child. I cringed. My heart broke. I died a little inside. It is like the bright pink elephant in the room no one wants to talk about, but it's always there. Staring at me. Making exchanges awkward when people who don't know ask me how my sweet son is doing. When people ask me how I am doing, the little voice inside wants to scream that I feel like I am dying a little at a time as I try and wrap my brain around the fact that unless treatment works amazingly, unless they find a cure, unless God miraculously heals my son, he maybe has 6-10 years left. That's the average life span of a boy who has MPS 2. That's a hard pill to swallow. It doesn't go down at all actually. It chokes me. It makes me want to throw up as I try and stop my tears. 

Yes, he has a disease, that depending on how the next 10 years go, could mean he goes to heaven a lot sooner than most other children, but there are also people with this disease who have surpassed all expectations and are 40, which proves God has all of our days numbered. Including Wesley's. 

It has been a couple days since this "incident" and something hit me today as I was recalling what I read about being a "terminal mom" and "raising a child with a terminal illness." I was a CNA for 5 years, actually until last May when I quit my job to be a stay at home mom. I worked in 2 nursing homes over this period of time and have seen many people pass on. I've seen it so many times I can tell when it's close. The yellowing of the skin, the refusing to eat or drink, the slowed breathing, the modeling, the graying of the skin, the clamminess, the infamous "death rattle." I know death, I have seen it so many times but this seems to go against every thing I know about death. It clicked. None of those things are my son. My son has none of those things.

Right now he is sleeping, but tomorrow he will arise and beg me for ice cream for breakfast and when I tell him no, he will throw himself on the floor in a tantrum because he didn't get what he wanted. In which case I will offer eggs and toast and applesauce and he will kick and scream more. In which I will march him to his room and tell him not to come out until his nasty attitude has changed. In which he will emerge a minute later asking for one of the things I suggested like he does every single day -unless he wakes up before me and sneaks ice cream out of the deep freeze. Those things. The kicking, the screaming, the tantrums, those healthy pink cheeks, the strength of an ox as he picks up his bike and carries it up the stairs, show me that he is very much alive. Very, very alive. The begging for a sandwich. Him learning new words. Him running across our unfenced yard. Asking me to kiss his cuts and scrapes. Wesley asking to hold his baby sister. All those things show that he is very alive. He isn't dying today. He isn't dying tomorrow. Not today. And tomorrow I will have to tell myself again; Not Today. It isn't happening today. 

This has been the ultimate challenge of learning to live in the present and to cherish every single day. Even in the bad moments I catch myself being thankful because at least we have them. Don't be so worried about the future that you forget to look at today. Tomorrow is never promised, make the best of today. Go Live; We are! 

In the mean time, if I must be referred to as something I prefer Wesley's Mom. With love warriors! Goodnight 💜