Thursday, June 2, 2005

My hour and a half with Baby Sam

I wanted to share my experience today with everyone. It is VERY long. Sorry! It may not mean as much to anyone else and I think I almost just need to write this b/c I am having such a hard time processing what I saw and heard. My hope is that it will touch all of you as much as it touched me.

Baby Sam is an 18mo old who has been fighting cancer for almost a year now. Recently, he had surgery to remove the cancerous tumor that they had been working to kill with 8 rounds of chemo. The surgery caused him to have severe kidney failure. The good news is that he is home now. The bad news is they don't know what the future will bring - if his kidneys will ever work again and whether or not the cancer is completely gone.

My playgroup called Tami, the mom, when they got home and asked if we could do anything. It started out as a request to have people come and spend time with Sam while Tami could get a few things done. It turns out that Tami just really needs people to talk to and hang out with to feel a little bit normal again. The reason for this is what turned me into a blubbering idiot for most of the day today.

I got there and Sam was finishing the few bites of food that was his lunch. He barely has an appetite so he is on a feeding tube. He was in his high chair attached to a large machine and a drip bag that feeds into a tube that goes up his nose. His mom was washing a huge tub full of syringes. She got about 5 of them that were full of medicine and put those into one of the tubes. After that, she gingerly got him out of the high chair - being careful of his still healing scar from surgery - and wheeled the feeding machine into the living room with Sam. She sat with much of their time since he can't do much else while receiving his nourishment. Once that finished, she was able unhitch the machine but he still has the tube that goes up his nose and other tubes and things that stay all the time.

In the hospital Sam had so many people doing painful things to him that he clings to his mom and won't let her out of his sight. She would walk out of the room for one second and he would go crazy. It got so bad last week that she wasn't even really able to eat b/c the mere smell of ANY food - even crackers - would make him gag and since she couldn't walk away from him without him freaking out, she just couldn't eat. I felt really good though when I had him engaged in playing with a toy for a few minutes while Tami went to get a snack.

She was telling me that in the evenings they have to get Sam on his dialysis machine by 8pm so that it will get done in time for her husband to be able to help get him off of it in the morning before work b/c it takes two people. In order to put him on or take him off of the dialysis machine, they have to scrub their hands and wear a mask. They cannot touch an area of the part that goes into him. This morning, her
husband accidentally grazed this area with his finger and now Sam has to add one more medicine to his many medicines for 17 days to prevent infection.

I could go on and on. I got all of this from an hour an a half. The worst thing is that there is no telling when this dialysis and feeding tube business will end or if it will. Tami seemed so sad when she was telling me how all of her friends are doing Kindermusik or Little Gym and playgroups. She is not able to do any of these things with Sam as he cannot be around people with germs b/c he has no adrenal glands and is very susceptible to all germs. She uses so many long medical terms that no one except doctors and nurses should have any reason to know. Her whole life is Sam - 24/7 - almost like having a newborn constantly.

I drove away from the house and got as far as two houses before I completely broke down crying. I almost pulled over I was crying so hard. I couldn't wait to pick up Grace at her little friends house and all day long I just gave her as many kisses and hugs as I could ...thanking God every minute that she is healthy. I could care less about the bills we struggle to pay or the debt we have or the stress at work or anything. I can't remember the last time that an hour and a half rocked my world so much. I truly feel like something in me changed and I hope I can hold on to the lesson that I learned in my hour and a half with baby Sam.

I hope that by reading this, you come away with a little of the feeling that I had. I hope that you will appreciate your life, your family, your situation...whatever it is...and give glory to God for all of your blessings. I hope you will cherish your loved ones a little more. I know you don't know this family, but I hope you will pray for them. They have a website and each time they do an update, they always end it asking for prayers for the kids worse off than Sam. I know there must be some but my gosh, I can't even bring myself to think about that today. If I were them I don't know that I could be so gracious as to think of anyone else but myself and my family but they do. They are amazing!

I pray that God will bless each and every one of you!

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