Wednesday, August 31, 2011

Rob's First Post - dinner war

Hi,

I am the other "writer" on this blog.  I am not nearly as skilled a writer as my wife but will try to get my point across.  My goal is to try to emphasize the human and humorous side of Naomi, because even though it is very difficult coping with the global situation, on a day to day basis she is a vibrant, hilarious little girl.  She has a lot of personality and is not afraid to show it.  Two nights ago I was feeding her dinner and, well, it turned into a war.  She is a difficult eater, and basically she eats soy yogurt (milk allergy) begrudgingly, and gerber fruit mixed with grain tubs eagerly.  She will also eat oats.   Not a big fan of meat or vegetable or much with texture ( all of which we are working on).  So two days ago I made beef tenderloin, baked potatoes, and garlic... I am least skilled when it comes to cooking between the Caughey brothers, but this was pretty good.  We took a little of each and blended it to a puree for Naomi.  Now that might sound kind of gross, but it was really good... think of it as something the astronauts might eat.  Well, Naomi did not agree.  We spent 45 long minutes engaging in a food war.  I would put a bite in, and she would do "food factory" which is when she spits out the food instead of swallowing it.  She has mastered this as well as just letting it sit in her mouth for several minutes and not swallowing.  Eventually I got her to eat a tub of fruit crap and yogurt and I think this picture shows the battle wounds she sustained. For my part I had several stains on my pants, shirt and a yogurt splotch on my glasses.  I would give the battle victory to her.

Monday, August 29, 2011

At Maximum Capacity

Life is hard.  We all know that.  No one gets through it without difficulty and trouble.  It's part of living in a fallen world.  It takes strength and endurance to make it through with your peace, dignity and sense of self intact.  When you have a profoundly disabled child with a devastating disease and enormous, endless needs, it isn't just doubly harder.   It is exponentially harder.  Even in a perfect day where everything goes well and smoothly, we are operating at maximum capacity.  There is no room for error.  There are no more valves we can open to ease the pressure in the boiler of our lives.   It takes incredible fortitude and determination to get out of bed each morning, greet the sun, and try to move forward.  And when something goes wrong?  When something fails to go smoothly?  It's too much.  We were already at maximum capacity.   And so we explode, the shrapnel of our pain and struggle flying outward indiscriminately, leaving destruction and chaos in its wake.  And after the explosion there is no choice but to bind the wounds, patch the damage and continue moving relentlessly forward toward a future we care not think about, because the sun keeps rising and setting, whether we want it to or not.

Sunday, August 28, 2011

On the Knife's Edge

Our lives with Naomi are like balancing on a knife's edge.  Lean too far one way and you fall into the abyss of grief and despair, lean too far the other and you forget how precious each and every moment is and get bogged down in the nonsense of day to day life.   Instead, we try to balance on that sharp edge, an edge that so often hurts and cuts, trying not to let ourselves think too much about the broken dreams and difficult experiences of the past and definitely trying to not dwell too much on the horrors that are most assuredly coming.  The future, for us, is a scary thing.  Like every other parent, when Naomi was born we began eagerly anticipating the future, her first smile, crawling, walking, talking.  We even started her college fund.  So much of the joy of life is in the anticipation of things.  Joyful anticipation is one of the sweetest feelings.  Joyful anticipation is a feeling we have had to abandon.  If we let ourselves drift towards thoughts of the future, we anticipate Naomi losing the few milestones she has gained and a lot of our anticipation with Naomi is anticipatory grieving, which definitely is in the abyss of grief and despair.  So we have tried to give up thinking about the future.   We have tried to give up reminiscing about the past.  We try to stay rigidly focused on the present, but ever aware of how precious the present is.  For our family, there can only be today.  We're okay if we stay in today.  If we don't, well, you'll probably read about that here too.