Let me just start by saying that I am soo tired of being the MOther of the child that NOONE wants to watch in our church nursery.
I have endured many not nice very mean comments form people who think they know better than ANY dr.
The meanest one I have been told was....If you just didn't use that feeding tube anymore Jedd would get hungry enough to eat....YEAH, right....If I didn't use that feeding tube (when he was 100% tube fed) we would have all attend a funeral!!!!!!!!!
They all think I'm half looney.....
So I arrive at choir practice last night, after rushing out the door, changing a stinky bottom earlier than I woudl have liked to after a feed., Which cause a HUGE vomit which lead to need a last minute bath....see how frustrated I was by the time I arrived at church....
Only to be told. I don't know how Jedd is going to act, I've never watched him in the nursery before.....
I was kinda mad to say the least....So I said FINE I'll take him and not be in choir again. And stormed out in a mess of tears.
Just once, really just ONCE I would like another Mother to spend 24 hours with me and see the HE!! I live in every day. They are all wrapped up in their perfect world. Where all their children sit up early talk eary walk early eat anything you put in front of them and NEVER get sick or have surgeries.....
SEE I told you this could get LONG.....
I bet NEVER have they had a child knock the spoon out of your hand to the floor, kick at it when you tried to pick it up, throw their hands in fornt of their face, clamp their mouth shut, shake their head back and forth, turn around in the high chair, which now has no straps on it becasue he kept playing with those instead of eating.....all in an effort NOT to eat the very nurishment their little body so desparetly needs to grow. Oh and vomit at least once, which you must RE-FEED new food so he will GROW!!!!
I bet they have never needed an apptointment calendar book to keep track of ALL of their child's numerous dr. vistis, clinic visits, test, surgeries, and therapy visits.....
There are some days well let me be honest there are many days that I pray and wish that I did not live in this world. But I lOVE my son...so.....
Everyday I get up and do it all over again.....EVERYDAY without fail because that's what he needs.
I guess God just thought I was stronger than all those other Mothers...it's just that lately, I really feel like I am not.....
Can you tell that I am more than a litte STRESSED.
Jedd was doing soo well eating before surgery and now he may have to go through it all again. The feeding clinic is NOT going to want to put in their program until ALL his surgeries are done.
So now I have to wait to get the help I soo desparetly need.
They won't know until 6 months post op if he needs to have his hypospadias re-repaired. She is really talking aobut taking out as least some of the scar tissue that has fomred. It's too large.
Well I guess my vent really needs to end...LOL It's just that I have endured over 19 months of rude comment form my fellow Mothers at church. I think what bothers me the most aobutthis is...that is THE #1 place where I should feel the most comfortable and recieve the most compassion and yet...there is none to spare.
I guess I have learned to have MORE than enough compassion for other who go through this...because of what we have gone through.
So here I go, it's time to feed Jedd again....so I must go and struggle to get him to eat something and keep it down. He desaprtely needs to keep this feed down. I ahve a therapist coming at 2:30 and I need him to get his 2 hour nap before she gets here so I don't have time to re-feed him if he vomits.
*sigh*
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09:50
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He just wants me to speak in private to those who I have had issues with...:(
