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Showing posts from April, 2017

Through the trees

It's been a week of deep thinking, new challenges, a few good things and some not good things.

Friday was another milestone of birthdays for me.   I really didn't want to celebrate or even acknowledge my birthday.  Birthdays have become a reminder that another year has come and gone and I have nothing to show for any progress I've made in life.  Still trying to find the forest as I make my way through all these trees!  Most days, I still feel like I'm 10  years old and wonder why in the world I've been left with so much responsibility.  Other days, I feel like I'm 80 years old and wonder why in the world I've been left with so much responsibility...I'm too old to be working the way I do!

At any rate...it was just another day.  Well, not exactly.  We got word late on Thursday night that our 'Santa' Mike who passed away two years ago, had a son who was expected to pass on Friday.  He was their only son and was born with Downs Syndrome.  I remember…

Medical Updates

Two weeks ago, the Neurology team at University of Utah met to discuss our case.  It was comprised of Neurologists who specialize in various areas from Epilepsy to Multiple Sclerosis.  From that meeting, they made a plan of what to do next for Shelbie.

We have an appointment with the Autonomic Nervous System specialists.  When the nurse called this week to set that up, he said, "It's really important we get this set up sooner than later."  So, I suggested that we would be down there in two weeks and maybe we could fit it in then.  His reply was, "Or, I have an opening the first week in September."

Huh?!  Sooner than later and September...makes no sense to me.  He went on to explain that is how far out they are scheduling.   In the meantime though, they have reason to think that she has a problem with the hormone Catecholamine.  This is responsible for regulating the central nervous system, heart rate, blood pressure, motor control, cognition, emotion and memory…

A Reason To Stand- Fighting For ME

So, part 1 of my emotionally charged weekend actually happened on Friday.  I attended A Reason To Stand Conference here in town.  It was a gathering of trauma survivors; trauma of all sorts from murder to addictions.

Two weeks ago, I saw on Facebook that Ashlee Birk was bringing her seminar to town.  In a very hasty moment, I bought a ticket.  I don't know why I did that.  It was completely out of character for me, knowing I would sit in a large gathering of people to listen to sad, but empowering stories...alone.


Ashlee Birk made National Headlines when her story appeared on shows like Fox News and Dateline.  You can read about her story HERE.  Her high powered attorney husband in Meridian, Idaho had an affair with his Paralegal and in a sudden turn of events, was shot in a Walgreen's parking lot by his Mistress' husband.  When the police knocked on Ashlee's door, it was the first she knew that her husband was being unfaithful.  She had a new baby and 4 other childr…

Unknown

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…

We need a Disco Ball

Last year, or maybe it was the year before, I heard a talk by Billy Ward.  He asked three questions...

Who is your Sun?  Who in your life reminds you of the sun?  They show up everyday no matter what.  They bring you light and warm up your soul.

Who is your Lighthouse?  Who guides you home...helps you on your path?

Who is your Disco Ball?  Who is that person in your life who bounces light and energy off them.  They show up with energy and encourage you to live life with vigor, fun, and humor. They teach you to enjoy the journey.

I thought about this again when we had a little struggle this past weekend.  I use to be all of these to my kids.  My kids use to be some of these things to me. As I listened to each of them talk about how tired and sick they feel...I wished we had a disco ball. I wished I was that disco ball that I once was.  I get so frustrated with myself!

Oh well, without a doubt, day by day we are working things out.  We may not be in Dancing Queen mode but even shuffling ca…

When Opportunity Knocks

Last week, out of the blue, the Architect Firm I use to work for 8 years ago called and asked me to come in for a meeting.  I didn't think much about it.  They have called me to collaborate on projects from time to time before.

This time though, they asked me to come back!  Full time.

Never in a million years, did I expect this to happen.  I would do some design, managing the specification and submittal process, payroll and other office duties.  I enjoyed my time there before the economy tanked.  I spent the weekend thinking about the offer.

In some ways, it would have simplified my life tremendously.   I would go from 6 part time jobs to one full time job.  I have forgotten what it was like to go to work at 8 and come home at 5 and that was that.

It was nice to dream but that's all it could ever be.   When I talked to them, I had forgotten, for just a minute that my life is different now.  Even though it seems like nothing has changed in 8 years, the reality is, everything …

Easter

I haven't spent as much time as I should have this week, thinking about the life of Christ.  But this weekend, my favorite thoughts on the resurrection of Christ have stuck with me.

I find it interesting that in the week leading up to Christ's crucifixion he was close to his disciples and those who loved him were close to him.  He laid out the plan to them at various times.   He told them of his impending death but also that he would be raised on the third day.  He didn't explain this just once but more than once.  Though they were taught, they didn't understand.

From the tragedy on Friday, to the miracle on Sunday, they forgot the promises Christ had made, except Mary.  She stayed close to Jesus even after his death.  She was the first to find the empty tomb.  John didn't leave like the other disciples had either.  He was one of Jesus' most faithful disciples and friends yet he didn't understand Christ when he had said he would be raised on the third day. …

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…

Not every mom does this

It's an ongoing battle around here to find a middle ground when living with adult children, when all you know is mothering, rules, curfews, blah, blah, blah. It's hard to know when to let them practice a little trial and error and when to flat out say 'No'.

Shelbie thinks she has a blood clot in her leg again.  It's in the same place as the one last year and it's red, hot and painful.  Spencer spent the night before last doing jumping jacks and push ups in the middle of the night because his heart rate was so slow, down in the low 30's and high 20's.  He didn't know what else to do so he tried a little cardio to get it up.  It went from super low to the extreme end of fast and he couldn't get it to slow down so it was a rough night.  He has been having more struggles like this lately with his heart.

But...that's not going to stop the two of them from a road trip to Oregon.  Shelbie's friend needed a ride back home after being here at sc…

First the Famine

Nearly two months we go without any direction or follow up from our doctors and now, my phone won't stop ringing.

And...in keeping with my usual response, I feel relieved, scared, stupid, anxious and all sorts of everything.

Today, our Hematologist called a couple of times.  I missed the call both times because I was out on a job site.  It wasn't until late afternoon when I was able to call him back.  He has been a busy man.

He had a conference call with Dr. Giri at the NIH.  He had a conference call with Dr. Ghadir at Texas Children's, and a conference call with Dr. Shimamura at Boston Children's.  Those doctors brought up with Adenosine Deaminase Deficiency 2 and feel that it would be prudent to do the genetic testing for that rare disease.  The only problem is, there is only one doctor at one lab who as the ability to test for this disease.

So...our doctor had a conference call with him, Dr. Hershfield from Duke University.  Dr. Shami suggested I read this doctors…

The Weight of Things

A pound of feathers or a pound of rocks?  That always use to confuse me.  Of course the pound of feathers!  But a pound is a pound.

You don't realize the weight you carry until it's gone.  And when it's gone, even for one hour, the gravity of it all is profound and piercing.

This morning, I opened my email just as a message from Dr. Shimamura came through.  I was shocked!  I didn't think I would ever hear from her again and since she is primarily concerned with pediatrics, we moved on when she left Seattle for Boston. We emailed back and forth for an hour!  I was in tears!  She wants to jump back in to researching what we can do for Shelbie especially, but the boys too, given their new heart and brain problems.  She said that she has some new ideas.

As I sat at my desk in shock and awe I was overcome with the weight of so many things!  Sometimes, you don't feel the weight of something until its gone.

I was overcome that God has been good to us. I see everyday how…

The most dangerous time

We have been trailing on a rocky road this year.  Just plain hard. Hard to keep going, hard to want to keep going.  In all the waiting I have done the past couple of months, I have had some time to think about life's great mysteries...

Like...

Why is it when I get what I want I feel this overwhelming dread?

Why is it that I have more energy and function better when I am flooded with chaos?

Does everything happen for a reason...or not?

I won't tackle them all in this post but FYI...The Germans have a word to describe the overwhelming feeling of dread when you get what you want...it's called Zielschmerz.  I felt that after a series of emails from our doctor this afternoon, outlining a more precise plan for Shelbie and her thoughts about our situation.  Why is getting what you want so hard???

Anyways, I want to write about crisis and the most dangerous time.  They seem one and the same but they are very different moments.

I've been studying about crisis.  I know, I'm …

The Squeaky Wheel

I hate having to be the squeaky wheel but I had no choice.

I have been extremely patient, even to a fault with the doctors in Utah.  It's been 7 weeks since we got the scan results on Shelbie's brain.  I didn't freak out, I waited to hear from our doctor but never heard.  After a couple of weeks, I sent an email.  A few days later, a message in MyChart.  The following week, I left a voicemail...twice.  I have made contact with them multiple times.

Finally, this morning, I pressed the issue.  I called and didn't just let them send me to some random nurse's voicemail.  I have been so anxious about this, I could hardly keep myself composed as I talked to the switchboard person.  I didn't want to get angry but I did make it clear that the way we have been handled has not been appropriate.  It's not fair to send someone a report stating that your child has a massive granuloma in their brain without some plan for follow up.  The girl was really good and promised…