Skip to main content

This journey

I have spent an awful lot of time in the car today driving back and forth from the hospital and doctor's which gives me a lot of time to think.

First of all...we lost another sweet friend from Cardio Pulmonary Rehab this week.   There was a lady there who was so taken with Shelbie.  They hit it off right away.  Her name is Marty.  They would do their exercises together and talk about everything under the sun.  The past couple of months, Marty has been gone doing family reunions and get togethers with her kids and sisters.

About three weeks ago, she ended up in the hospital with some heart arrhythmia.  She came to rehab the Monday after her weekend episode and talked about how much it scared her and she needed to work harder at rehab.  She hasn't been back since then and we've missed a lot because of all our stuff.
This past Sunday, Shelbie said to me, "I think maybe Marty died."  I didn't think so, she didn't seem that sick.  She acted as if things were going to be okay.  Well, she died on Sunday night!  Strange.  Her funeral was today and some nurses came in after the funeral and dropped off a program.  I was just praying Shelbie didn't see it.  I wanted to tell her in the car because I knew she would be upset.  She was.

I just can't help but think about life.  This journey we signed up for with full knowledge of how much suffering we would experience but how much joy too.  It's kind of crazy if you think about it, humans are pretty resilient creatures.

We met with our surgeon today and all three kids and their biopsies came back pretty good.  Quite normal in fact.  No cancer.  This is all good news if they weren't having any symptoms but they are still sick. So, that leaves us with the one thing our Gasteroenterologist was thinking...enteropathy.

Enteropathy is a disease of the intestines and becomes a serious and chronic problem in DC kids.  There is no way to fix it.  Because DC is a telomere disease, any place where cells have a high turnover rate, it is prone to disease, dysfunction and failure.  The gut is one of those places where cells are being replaced at an astounding rate...those cells can not be protected by the failing telomeres end up with kids who can't absorb nutrients, digest food properly or eat without pain and a great deal of discomfort.  My kids.

At home, we are trying to stick to water soluble foods and eat frequently but for Spencer, it's not going so well.  I talked to him tonight and he is worn right out.  He has been working 13 hour days with a 13 hour school day in between.

Sigh....From here, we just continue to have hope and faith that somehow in spite of this, the kids can continue to do the things they love to do for a long time to come.  In the literature, it says that sometimes, patients can find a food that settles better than others and reverse the malnutrition and failure to thrive.  I sure hope we find that place!  Any chance it's on Easy Street?  Probably.



Popular posts from this blog

Obscure Sorrows

I sat on the bench like I usually do on Saturday mornings, the organ music was slow and quiet.  I think that's why I like playing there; its just slow and quiet.  I set the pace.  I mostly keep my eye on the music for fear of messing up but I did notice a couple walk in.  I had known them a few years ago, not well, but enough.  Enough to notice each other and say Hi.  I had heard recently that she had breast cancer.  She's likely a good 10 years younger than me.  Her red wig was striking, her eyebrows carefully in place and by all accounts, she made cancer look good.  
I had the strangest feeling I've never had before.  She has no idea, that somehow, I know all about her recent strife with cancer.  I have heard how it struck, how she deals; I know more than a distant acquaintance like me should know.   She is living this complicated, unfair, story that went off in a way she scarcely expected.  For a moment, I felt like I was an extra in her 3rd act; the struggle.  And, I wo…

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.…


It has been an emotional weekend!  Holy Smokes.  I need a vacation from being sensitive.

It's been months since I have been able to find my homeless friend May.

Monday, I had this overwhelming feeling that she was in trouble and it dawned on me that I should call the apartment where she was last known to be.  They didn't answer.  They didn't answer my call all week!  Finally, yesterday (Friday) they called me back.  I was afraid that they wouldn't give me any information about May since I wasn't family so I lied!  I told them she was my great Aunt.  The manager hummed and hawed and finally gave the phone to a man who wondered what I wanted with her.  After some convincing, he told me that she had been arrested and taken to the State Mental Hospital.

I was so sad!  I immediately called the State Hospital and asked if I could speak to her but of course, they can't tell me if she is there or not...and, I couldn't remember her first, legal name.  She has sever…