family pic

family pic

Sunday, September 7, 2008

hard realizations

The last few days have brought hard realizations about saylor's "systems." they make my heart heavy as i feel we have been through so much already and wonder now what is ahead of us. these feelings are accompanied by the fact that my expectations that i thought were being met were only best hopes, not harsh realities. we had hoped that saylor would not having any leaking from her urethera and therefor be completly dry and easily be able to wear underware. this hope got exagerated and excited when it appeared that she wasnt going to void this way. then we started putting undies on her and slowly realized that she was indeed voiding. it seemed to increase in quantity every day. and our hopes have gone back to what may be realistic, yet i feel disheartened a bit by this step back. there are some things we can do perhaps, medications, collagen injenctions, or further surgery to fix this problem. i dont know how much more any of us can bear. we go back to the doc on tue so we will discuss all these things with him further. the second let down ... came when we thought we were sort of in the "clear" also. her bowells. saylor has always been a regular child. doesnt seem like so much a big deal excpet when you realize that 90% of SB kids have serious bowell problems and consitpation. this requires medicine that makes them loose, bowell programs, and even surgery often. one of my big fears and concerns with the surgery was that we would be "messing" with her digestive system by using her bowells to augment and that we could possibly ruin a good thing going. initially it appeared that there had been no change in her ability to digest and push it all out comfortably and easily until this last week when for the first time in her life she has become quiet consitpated. the reasons? not sure but cant help thinking they may be surgically related. none the less she has no idea that there is anything less then perfection going on with her healing process right now. we are letting her enjoy panty wearing including these awsome batman ones ... her hero and potential suitor. her spirit is back to that of herself and for now she is happy and once again perfectly unperfect ... until tue.

today we had a regional conference in our area, it was hard for me to get up and go ... really hard. the first speach spoke confirming comforting words about my presence there as stories were told of a disabled sibling that left this man greatly molded for the better with no harm done, i felt releif wash over me as i realized it is possibly to get storie and stockton through this with little to no resentments. then he carried on with stories of the disabled boy being teased and ridiculed and my heart hurt so badly for what has been, what will be, and for who we are as humans and what we do to each other. he talked of acceptance and love for all those that are not "normal." how beautiful to experience this morning a realization of who i am and who my children are. he ended with this primary song that has been so dear to our families hearts for 5 years now and once again the tears freely flowed.

"If you don’t walk as most people do some people walk away from you. But I won’t! I won’t! If you don’t talk as most people do, some people talk and laugh at you, but I won’t I won’t! I’ll walk with you. I’ll talk with you. That’s how I’ll show my love for you. Jesus walked away from none. He game his love to everyone. So I will! I will! Jesus blessed all he could see, Then turned and said, “Come follow me.” And I’ will! I will! I will! I will! I’ll walk with you. I’ll talk with you. That’s how I’ll show my love for you." Words: Carol Lynn Pearson, b. 1939. C 1987 LDS Music: Reid N. Nibley, b. 1923 c 1987 LDS

yesterday was my aunts funeral. it was a very sad occasion as i dont think anyone was quiet prepared to loose her. her daughter shared this poem that i heart.

it's titled:
Parable of Immortality ( A ship leaves . . . )
by Henry Van Dyke - 1852 - 1933

I am standing by the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength,
and I stand and watch
until at last she hangs like a peck of white cloud
just where the sun and sky come down to mingle with each other.

Then someone at my side says, 'There she goes!
Gone where? Gone from my sight - that is all.

She is just as large in mast and hull and spar
as she was when she left my side
and just as able to bear her load of living freight
to the places of destination.
Her diminished size is in me, not in her.

And just at the moment when someone at my side says,
'There she goes! ' ,
there are other eyes watching her coming,
and other voices ready to take up the glad shout :
'Here she comes!'

i also wanted to share a little book review ...

i am on a lynn austin kick! all 3 of these were really good books - its been really nice to be on such a reading wave while i care for saylor and am required to quiet my shcedule a bit more than i have been. most of lynn austins writings ... including all three of these just simply remind me to be a good person. remind me that everyone has a story and everyone is affected by life's events. that until we know those stories its not fair to judge and when we do know the stories we wouldnt dare judge!


Tiff said...

Could Saylor's bowel issues be due to her pain medication. After being on pain medication for days at a time could totally make you constipated. We always tell our pt's at the hospital to try to get off the meds as soon as they can for the very fact that it slows your bowels down. I too was very touched by the regional conference. I loved Elder Jensen's talk. We went to my mom's stake and I was touched by how many kids with special needs were in the congregation. At least for children in wheelchairs. It was comforting to see all those special spirits all in the same place at the same time listening to Elder Jensen's talk.

Jenny Wimmer said...

It was good to read your comment! Sounds like your life had been crazy lately. I hope you guys can get to the bottom of Saylor's problems, she has been through so much. Stay tough!

Sara said...

Thinking of you:)

Amber Schmidt said...

sigh... the harsh realities of the lives that our girls live are sometimes too much to bear. But we do it with grace and agility and we push forward hoping for a better day tomorrow (or tue)... I will be thinking of you all. We see Urology Wed AND Thurs.... sigh. I seem to do a lot of that lately... sighing.