I am drowning!!
Current mood: drained
Oh my head hurts, I am so exhausted from this roller coaster ride… I always say there are no redo’s in life… but I want one… I need a rewind, please I am begging… One day I am up with hope and the next day I am down with grief… I cant breath (how ironic)… I want to vomit…I am screaming I want off this ride…. anything just take it away… Last week I took Lane back to his CF doctor in Oklahoma City… Prior to going Lane asked me if he would have to get poked again, I said I didn’t think so. Thinking what could they possible need that for this time.. So he was okay with that, and ready to go to the city… We start discussing events of the prior two weeks. I explain the rough weekend he previously had, and ask what am I suppose to do. I am already giving him so many breathing treatments, he is the energizer bunny.. He just keep going and going.. They let me know that it is fine to give him more if he is having a hard time breathing, even if I just gave them to him an hour ago.. uhh exactly how much could he have? Well worse case scenario up to 4 xopenex an hour.. Are you joking, it would take an hour to do 4 treatments.. Of course he would be wound up… uhhhh do people ever survive four doses of that in an hour? Okay lets move on.. Do their bellies expand and do down? Yes, you just need to watch for over extension, which is a sign of a bowel obstruction. My mind starts talking to myself: What? Rewind? Do you know who I am? I am a mother. His mother… I want you to be frank with me, but I cant handle frank… Hey we are way too early into this, save that news for someone else, my plate is full today.. So anyways you ever have anything good to say… Like hey were just kidding, your son is fine… what about those words, huh.. Do you ever say that?. Point me where to go to sign up for some of that news… Tapped out on getting more and more and more and more bad news… there is a limit you know…. Okay back to reality…. They examine Lane, both the Doctor and his PA. Pushing on his abdomen to check for more bad news I guess…. Not today, Lane laughed so hard this must have been where they came up with the idea for Tickle Me Elmo… He had me laughing, okay I guess no bowel obstruction today… They ask about the vest and I let them know that it is still hung up in insurance and trying to figure out how to pay for it…. It is only $15,000.00. Last I knew if it is approved it would leave us having to come up with 6000.00… Then he says, need labs….. whoa whoa whoa, this is not what I thought was happening today, why??? We need to check his nutrition levels, or lack of, to adjust his meds is needed… what, no no no…. fine….. So we head to the lab and I try to explain to Lane, I am sorry we have to do this again… Oh he starts begging me, please mom no…. I was really hoping this time he would be better with it, how naïve of me… I told him I promise to get the best tech they have.. He continues to beg the whole way… Upon entering the packed lab, I let the receptionist know I want the BEST person she has… She kinda looked at me like, yeah doesn’t everybody…. I am not everybody, this is my son and I repeat… I want the Best, I mean the Very Best person you have…. (I am learning to be the most, no bull crap advocate I can be).. So we take our seat… Lane starts begging me again, please mom, he is crying begging me not to let them dig a crater in to both arms, I am trying my hardest to sooth him… There is no soothing.. I tried bribing, no bribe today.. We go for a walk; he lets me know it is my turn.. Oh I would take a turn in a heartbeat .. I would do anything to take this on.. Take it away.. I am helpless… We go back in the waiting area, he decides to hide.. “Hey mom, just tell the doctor I left, k” I hear coming out from under a chair he has transformed into a secret hideout… He laughs, I am so grateful for the few seconds of humor… Then he sits by me again, and shouts to the receptionist again, “ Hey its her turn” pointing at me. She doesn’t respond. So he shouts again, “hey it is Marcy’s turn.” Did he just call me by my name? I now know why my son was blessed with such a since of humor, as if God already knew I would desperately need it. He sits back on my lap crying again, until he decides he wants to be alone. I sit across the waiting room as my 4 year old son curls up into a chair and stairs down the long corridor, watching as each person before him enters and exits the dreaded room. Knowing his turn is coming soon. As I silently watch my son, I see his inner battle inside. His head drops and he silently tries to hold the tears in. He ever so slightly tries to wipe them on he sleeve so no one would notice his weakness. His face cannot hide his desperation inside, as the tears slowly start to gently roll down his cheek again. Seeing him softly wipe them away again, my heart sunk. Oh this is the moment. This is the moment I have feared, it hurts so bad I can not bare it, I cannot watch, I cannot leave….. Lord you have to hold me up right now.. I am not this brave, he is my son… I am witnessing a four year old, my 4-year old struggle with an inner battle that is beyond his years. The inner battle that his life in now different, and he is tired. He has done everything asked of him and he is just tired, and scared, and he wants off the ride… He is praying for courage to enter that room. We survive another visit, but I lost something that day, and so did he.
The rest of this letter was written and God deleted it, literally. So the rest for another day! When God deletes my work, I know it was meant for me to get it out, but not to share. So I accept that.. To bad though it was some good juicy not so nice stuff.. Prolly why he deleted it lol… I have to laugh.. But I trust his judgment… I will share as much as he asks me too, and allow him to delete the rest…. I now believe there are no accidents. He meant it….. My ears are listening loud and clear… I may not like what I hear, but I will follow, okay so some times he drags me... Okay so sometimes he drags me kicking and screaming, but I am still in this....