Honestly, I just want my child to be well already. I lay awake at night praying and crying, all the while trying to lean not on my own understanding of this situation. My precious baby has made a lot of progress, is in MUCH less pain, and the tumor has shrunk despite metastisizing. He can sit up, babble, play and eat. We can finally hold him sometimes. :) Dont get me wrong, Im so grateful....SO thankful. I look around this place and realize so many little ones have it MUCH worse then Christian. But, despite his smiles, and mine, this is still bad and I hate it so much sometimes I can barely breathe. I dream constantly about seeing him walk.....RUN.....and dance around again. I yearn to not have to worry about every morsel Christian consumes or doesnt because he is simply being a toddler.....let alone how much fluid he ingests. Sometimes the poor kid doesnt feel like drinking- not because he is sick- but just because. And, he isnt allowed that freedom. Im mad at myself for ever complaining about changing a diaper ( especially right before we walked out the door for church). Id give my right arm for his ability to do that again RIGHT NOW. I miss being able to lay down in the floor with him or bring him to my bed. I hate that every time he seems to get his sharpness back...its time for another treatment that robs him of it again. I worry all the time. I know the Bible says I shouldnt and fear does not belong HERE but I cant help myself sometimes. Im sooooo tired. Tired of the big and the small. I cant believe this started out as a five day stay and it has turned into over 50!!! I cant believe a tumor that started out the size of a marble is now the size of a nerf football. Our bodies are not made to house something that size let alone the body of an 18 month old. I want to run up and down the halls screaming its so unfair. Im sick of needles and ports and wires and thermometers and blood pressure cuffs. Im tired of monitors and alarms going off left and right, Im sick to death of hospital food and sleeping on a poor excuse for a pull out couch. I miss my friends and my stupid tv programs. I miss PRIVACY. I miss just driving my car or having the freedoms to come and go. THEN, I feel guilty for wanting any of that when I look at all my son is missing. This is an awful situation and my heart is just hurting so badly today. I love him so much and wish I could do this for him. Oh WHY cant I bear it for him??? Sigh, I saw my friend Lyn on the first floor and her son may have to be readmitted...he has cancer too and was Christians buddy when they were on the BMT floor together. It stinks to get out of here only to have to return!!! I hate having to constantly monitor my childs breathing and his heart rate and blood pressure. I hate the fact that he is here period. Im trying SO hard to hold onto all I know to be true in Gods word....but watching him cry and his little mouth quiver today as they cleaned his catheter just put me over the edge and thats minor in comparison to most of things they do to( for) him. Im trying to embrace Gods concept of long suffering and the fact that time doesnt mean the same to Him as it does to us. But, I want Christian well.....yesterday. Again, I asked God if today would work.... :( I long for normalcy.....just a regular day but for now I have to settle for it in my dreams. I know God is able and Im praying for His peace as these feelings try to crowd it out.
Posted on: Fri, 12 Sep 2014 22:24:35 +0000
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