These damned Monocytes are very fickle. Up and down, up and down, like teenagers. Or, like Ashton. Hell, like ME.
If all goes well, we will be sprung by day 33 this time. However, this room confinement is enough to make a grown man cry on Round Two. I already dread Round Three and God knows I dread Cincinnati and then 100 days of house arrest after the transplant. I dread the next hour.
I rarely cry. I think I am having an episode. I am not allowed to do this unless I am alone. What’s the damn point? I’m crying now because even though I am educated I am so afraid for Ashton. I am afraid to keep him here. I’m afraid to bring him home. I’m afraid to bring him back here. I’m afraid to bring him to Cincy. I’m afraid the matches won’t commit. I’m afraid the matches won’t cooperate with his body. I’m afraid he will get very sick and I am afraid for his emotional response. I am afraid and I rarely admit this because I have maintained that these doctors know what they are doing and I just have to trust this process. Crying doesn’t help. I am afraid for him not being able to start Kindergarten. I am afraid for his isolation from other kids. I’m afraid of my not being able to handle it. I’m afraid of all of us missing LIFE. I’m afraid for his distance from his siblings and bike riding and swimming and trampolines.
I want him to go fishing. Today. I want to plant our garden, last month.
Yesterday, I spent my day “off” in a Volkswagen dealership. The lease on my car is up and I had to trade mine in. I ended up with a bigger payment and virtually the same car. I was determined to not have my former spouse co-sign for me. Therefore, a bigger payment. I would forgo a car entirely if we lived in Chicago. They have Public Transit. So, I just screwed myself even more financially because I cannot work while this is happening.
I am filling out one of many psychological tests for mothers with terminally ill children. Yes, he is terminally ill without a transplant. My scores are not good. I hate to admit that the longer this goes on and the longer I insist on being numb, the worse I will be. I have an intense need to “handle this”. After all, Ashton is handling it. In his own way. He doesn’t cry. He throws a fit. I am allowed to lose it once in awhile, but not on a Saturday.
I want this to go away.
Dede/H.E.L.P. - Helping Every Little Person
It’s entirely acceptable to be afraid, mama. Furthermore, it’s okay to cry, stomp, rant, rave and even grab someone by the throat, just not too hard. It’s okay to bang walls, throw raw eggs, cuss, scream and slam doors.
It’s okay to doubt, wonder, second guess, be scared, and ask questions. Ask more questions. Ask them again, and even again.
It’s okay to be fearful, for without fear, success wouldn’t feel so GREAT! Fear is the scariest of emotions, mama, because it cripples us and stops us in our tracks. Leaves us like a blinded deer by the headlights of an oncoming train, car or bus.
Most of all, mama, it’s okay to be HUMAN. And, that’s exactly what you are. You are a human being, mama. All of these emotions that you are experiencing are HUMAN, especially in the midst of battling probably the toughest battle of your life. Your precious son’s life.
Don’t be afraid to reach out. Don’t be shocked when people “disappear”, because they will. It’s because they don’t know what to do! They are having the same emotions and fears that you are mama, but so many do not know how to handle them, so it’s easier to ignore them.
Reach out to those that you KNOW are/will be there with/for you through this journey. Whether it be family, friends, parents of other children fighting, support groups, Child Life Coordinators, strangers that want to help, etc… REACH OUT, because you are NEVER alone on this journey. Sadly enough, there’s thousands embarking on the same journey. All feel the same way you do. All are searching, grasping and calling out to anyone that will listen.
Be human, mama.
You and yours are in my prayers daily. And, you know where to find me.
Hugs and lotsa love,
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Excellent blog! Do you have any recommendations for aspiring writers?
I’m hoping to start my own site soon but I’m a little lost on everything.
Would you advise starting with a free platform like WordPress or
go for a paid option? There are so many choices out there that I’m
totally overwhelmed .. Any recommendations? Bless you!
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