Tuesday, August 31, 2010

On and on...

As our luck would have it, the hospital didn't order the correct contrast and other things they would need today for Spencer's testing so we only did part of it.  That was disappointing since he had been fasting in order to do all the things that were necessary.  He is fasting again tonight and will have the big test in the morning. 

     This afternoon, our GI., Dr. T. finally called me back.  He is located in Boise.  We talked about symptoms and Spencer's weight loss and he wanted us in Boise A.S.A.P. for a procedure to take several biopsies of his 'insides'.  I would tell you what parts of his insides but he rattled them off so fast I didn't get a chance to write it all down.  I told him of the tests tomorrow and was hoping maybe we could stay in town for the additional tests if he directed the physicians here. He thought that would be okay so we will be meeting with the surgeon on Friday, get the bloodwork done and surgery will take place next week.

     I feel relieved that maybe they will be able to find out what is causing him to be so sick but it is stressful too.  He will miss so much school and even though I don't a have a job to speak of, it still stresses me out and reminds me of why getting a full time job is out of the question.  When would I ever be able to work?  The kids medical needs are getting increasingly more complex and time consuming.  I see a magnified version of the bind I am in and then let my mind run through tangents of despair.  The financial problems, are draining to me in every way.  I want to be a mother, I don't want to be concerned with supporting my kids financially.  It's times like this when I feel really angry that I am divorced and I have to be both the nurturer and the bread winner.  My earning power has proven to be useless lately!  The other reality I am facing is the fact that Spencer will more than likely be in surgery the day of his 16th birthday or the day before...those are the two days I know our surgeon books out procedures.  I feel pressure to make his day even more of a special one to compensate for all the crap he has to go through.  It just makes me feel so bad for him.

Monday, August 30, 2010

Ohhhh....

Well, Spencer has continued to feel sick and after trying to get ahold of our GI most of last week without any luck, I took him down to our family doctor.  Looks like we will be spending a portion of the day at the hospital tomorrow to run tests and hopefully find a reason for his chronic nausea.  He has lost 4 lbs in 3 weeks.  Most of us would cheer for that kind of weight loss but it's not good for Spence.  We just barely got him above 100lbs.  So, we will continue to wait and hope.  Maybe have results by tomorrow night or Wednesday morning. 

Sunday, August 29, 2010

Darkest Side of Dawn

      It will be 11 years this December, a week before Christmas that the kids were diagnosed through their symptoms with SDS.  I feel like we have come full circle.  We are back to where we started, sort of.  Waiting for test results, hoping it won't be as grim as the medical vocabulary sounds.  There are plenty of sleepless nights let me tell you!  Someone stopped by today and commented that the problems we are facing with the kids is nothing new.  Well, as I thought about this, it is new.  It's new for me.  11 years ago I could hardly believe what I was hearing.  I didn't want to believe what I was hearing.  Over the years, I have followed an e mail support group of SDS families and each time a child slipped away to the great world beyond or was confined to a wheelchair, I thought to myself, "I'm glad that's not my child.  My kids aren't going to be that sick, they have a mild case."  When you stare past the truth and as far into denial as you can get, then the landscape changes.  It becomes manageable, normal even.  Someone has hastily torn the bandaid of denial from my life and I am staring at something I never allowed myself to see before so yes, this is news to me!  This is real now and it's real scary at time.  Scary to think of catastrophic medical expenses and it all lays on my shoulders.  Who knew I could be so strong? 

       A couple of months ago, a 2 year old girl drowned in a canal nearby.  She did not make it though her valiant effort to live was admirable.  I have been following this young couple on a blog they have.  She was their only child.  I have been inspired by the 'mantra' this young mother has adopted and I think I may have to hijack it for myself.  "I can do hard things!"  We all have to do hard things.  I am going to have to do some really hard things, hard things everyday!  If I want to make it home, and I do, I must be courageous, I must do the hard things.  Sigh.....I think I underestimate the trials and tests that God can give me but I can't lose hope.  I just can't. 

     This is a poem I wrote one early, early morning shortly after the kids were diagnosed, just as spring was waking for a season.
         Just before the daylight, peaceful like a song
        The world lays still and quiet
        On the darkest side of dawn.
        The breeze is cool, the smell is fresh
        The crickets count the time.
        The birds will soon awaken with their trilling tones so fine.

         A new day is dawning a perfect hope awaits.
         Everything is right now as slumber takes its bait.
         How is it that the darkness engulfs my soul with rest
         When light is what I really need
         To see that first step best?

        The silence echoes all around, weariness has gone to sleep
        Like the lonely cricket, this moment is mine to keep.
        Soon the sun will break this peace
        And freedom snatched away
        Comes a day of madness, robbing my heart as it may.

        For now I'll put the peace away
        Prepare myself for war
        The war I've waged upon disease
        And isolates me evermore.
        Who will win, the light or dark?
        Can I ever face the doubt?
        To make it alive through one more day
        As my soul continues to shout.

        But now the silent shroud of night
        Reminds me of my journey long.
        I'm tired and I'm weary
        On the darkest side of dawn.

Saturday, August 28, 2010

A Story

Everyone has a story these days.  I have a story. My life has been full of stories.  Great stories.  Stories filled with humor, stories of dismay, one in a million kind of stories. To some, the story of my kids and their genetic disease is sad and sometimes to me it is sad.  There are times when the sadness of their story becomes more than a fleeting feeling but a rhythm that contracts each moment and provokes the tears I want so much to hide.  My half stitched heart breaks apart and I am left in a moment that fogs any view of the future.  Fear is gripping, paralyzing and suffocating. 

       I have been thinking a lot about my life.  It's hard. I have chosen not to give too many people access to my 'real' hard life, the parts of my life that hurt.  I've learned that people become overwhelmed when they hear my stories and the truth is, no one wants to hear that your struggling, that life is somehow a little more restless than normal.  Living with three children who have a chronic illness brings a lot of chaos, long days, sleepless nights, empty bank accounts, rocky roads and broken relationships.  To save us all an awkward moment, I have glazed my life with a generous coating of sugared sweetness to protect the 'innocent' from having to search for words when I give them an honest answer for their cordial question "How are you? How are the kids?"  Just this week, I met with a leader of my church who asked how things were going for my family.  I said, "Well, we are struggling, it's tough right now."  His reply, "Good, that's good..." then carried on with his most important business, never hearing the depth of those words.  Obviously he didn't feel awkward but it's a strange feeling to be screaming on the inside, trying to convey that scream on the outside and it falls upon deaf ears.  'If you don't want to know, if you can't hear what I'm saying, don't ask."  is what I feel like saying.  In all fairness, I will probably continue to give my standard, safe answer..."FINE, We are doing fine!"  I've never been a master communicator but I love to write.  I don't have a significant other, someone to share the load with at the end of the day but I do have my journal and boy, does it get an earful at times. 

        So, in addition to my other blogs, this is one where I will share the good the bad and the ugly of living with Shwachman Diamond Syndrome.  A progressive disease that has wreaked havoc on the lives of my children yet woven in this tapestry of chaos are the most beautiful threads of miracles and blessings. Without the holiness and the pain, our lives would not be as rich as they are. It is been a journey with God and it's not over yet!