Monday, February 22, 2010

Normal Day

Normal day, let me be aware of the treasure you are.  Let me learn from you, love you, bless you before you depart.  Let me not pass you by in quest of some rare and perfect tomorrow.  Let me hold you while I may, for it may not always be so.  One day, I shall dig my nails into the earth, or bury my face in my pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return.  
-Mary Jean Iron


This weekend was just another normal manic weekend. So much to do and not enough time to do it.  Working full time and not getting home until late in the evening five days a week leaves all the running around for the weekend.  Add to all the normal stuff that has to get done every weekend, a home improvement project* that I started a few weeks ago and that had to get done this weekend, and it was an extraordinarily manic weekend.  All the while I'm hither, thither and yon trying to get everything done before Monday arrives (unsuccessfully, I might add), poor Jack got very little of my attention.  Alas, my normal includes a little boy who patiently and silently waits for me to feed him, suction him, reposition him, give him something to hold, change the TV channel, put in a new movie and give him a hug and a kiss in passing.  But, the fact that I can do all that and still manage to get out of the house and get things done, counts as a good weekend in my book. 

That's my normal and I'll take it ... and treasure it.


May you all have a week filled with normal days that can be treasured.


*I decided to re-do one of our upstairs bathrooms.  I had this great idea of ripping out the old sink and the wall mirror and re-painting, re-tiling, and putting in new sinks and new mirrors Problem is, I got stuck at the "taking out the old sink" stage because of plumbing problems.  Fortunately, I have a fabulous brother-in-law who knows how to do all that stuff and he (and Mark) helped get the old sink out and the new sink in. I managed to get the painting done and we paid someone to put the new flooring in. The end product is a beautiful new bathroom finished just in time for my friend Anne, from Ohio, to come visit next weekend!  

Monday, February 15, 2010

President's Day

Today being President's Day meant a day off of work ... and I actually took it off (which is unusual for me). The Arizona weather is spectacular this time of year and we took advantage of it by going to the Renaissance Festival.  We didn't take Jack because there was a lot of gravel (not wheelchair friendly) and a lot of dust (not trach or vent friendly).  Too bad the event isn't held some place where there is pavement because I know Jack would have loved it.  

Just some pictures from our day .....


By the way, I asked Eric what he hoped Jack had hope for and he said "that he lives a long time".

Have a great week my friends!

Tuesday, February 09, 2010

The Brothers

The Picture

The Story

Jack has quite the variety of music and entertainment on his iPod thanks to Mark.  One of Jack's favorites is a comedy act by Brian Regan.  I have no idea who the guy is, but his routine is very funny (and clean).  It's so fun to hear Jack laugh while listening to the "Best of Brian Regan".  Eric apparently loves Brian Regan too because when I turned on Jack's iPod and was getting ready for "lights out" for Jack, Eric asked if he could sleep with Jack.  Eric likes to hang out in Jack's room, but he's never asked to sleep with him.  Sure enough, after listening to a little Brian Regan and reading a few chapters of that fine literary work known as Diary of a Wimpy Kid, Eric fell asleep in Jack's bed.  It goes down as one of the those sweet moments I will always cherish.

Another sweet brothers' moment is Eric's Valentine's Day card for Jack.  He was filling out his Valentine's Day cards for his class tonight and I found this card lying next to Jack on his bed.

Pretty profound for a 7 year old. I wonder what Eric hopes Jack hopes for?  I'll have to follow-up on that one.

Thursday, February 04, 2010

Our Special Family

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."

The above saying made its way around Facebook this week and it got me to thinking, especially the last sentence.  A common statement by parents (myself included) of children with special needs is how blessed we are to have our special children. I am blessed to have Jack in my life because he is my child.  I am blessed because Jack lives.  However, I am not blessed because Jack has special needs. I would have been equally as blessed had Jack been born healthy.

Every child brings to a family his or her own unique beauty, gifts, lessons, hardships and joys. A child with special needs simply amplifies and accelerates the impact. Perhaps the unique “blessing” a child with special needs brings to a family is perspective. Perspective to appreciate a healthy child, a beautiful sunset, small victories and a full night’s sleep. Perspective to appreciate that all parents are blessed and all children make a special family. 

Admittedly, I’m particularly sensitive to the emphasis on the specialness of children with special needs because I have children who are sensitive to the emphasis on the specialness of their siblings with special needs.  I’ve been reprimanded on more than one occasion by my non-special needs children for not acknowledging often enough the specialness they too bring to our family.

Yes, I am blessed. 

I am blessed to have four children, who, in their own unique and special way, make our very special family.  

Tuesday, February 02, 2010

Right there in Black and White

The organization Cure CMD recently established an International Registry which was created to identify the global CMD population for the purpose of raising awareness, standards of care, clinical trials and, hopefully in the future, a treatment or cure.  I decided I should probably register Jack because it's the right thing to do.  Typically, I wouldn't participate in this type of thing because I try to stay as far removed from anything to do with muscular dystrophy as I can.  I've declined membership into MDA and Jerry's club for years.  (As if not participating in anything muscular dystrophy related makes it not so in my life.)  However, because Jack's neurologist is actively involved with Cure CMD and because I've had the opportunity to work with the founders of Cure CMD on several projects, I feel a connection (and responsibility) to this particular group.

As part of registering Jack on the Cure CMD International Registry, they ask their registrants to provide documentation to support the diagnosis.  I requested that Jack's muscle biopsy report from 2005 be sent to the Cure CMD genetic counselor. I also requested a copy be sent to me.  

Not such a good idea.

"H&E shows severely abnormal muscle with prominent replacement by fat."  

Well, that sucks.

"Congenital muscular dystrophy is more likely than a progressive muscular dystrophy given the mild pattern of active myopathic changes"

Despite the obvious, I've never fully wrapped my head around the reality that my kid actually has muscular dystrophy.  But right there in black and white are the words I refused to believe for so many years - Muscular Dystrophy.   Absolutely, undeniably, no doubt about it.  

That double sucks.

The fact that his disease is considered non-progressive is a double-edge sword as far as I'm concerned.  (and I'll leave it at that for now).

I remember in the beginning of this journey, all I wanted was information.  Now, I just want to bury my head in the sand and ignore the information available because I don't like what I'm hearing.  

Anyone want to join me on my trip to the island of ignorance is bliss?


Be ignorance thy choice,
where knowledge leads to woe.
James Beattie