An old soul...

I tried to post this last night but Blogger was being difficult and wouldn't let me... sorry 'bout that!

The Monkey had no school yesterday due to a water main break in the building.  That, accompanied with the first real snowfall of the season made for a very happy boy.  He jumped and bounded through the kitchen, round and round the island proclaiming that he couldn't believe it finally snowed and that he had no school!  His second thought... "I feel so bad for my teacher.  I wish she could stay home like me and have a fun day off." he knew the faculty had to report as usual.  That type of response is so typical for my sweet baby, he always thinks of how someone else will feel.  The compassion and empathy he is able to display for others is boundless.  He truly has a heart of gold.

I am not sure where he finds it... all this empathy.  He has had so many struggles in his 7 years and there are many more yet to come.  But it's there, guiding him, surrounding him.  If you are happy he is ecstatic, if you are sad he is heartbroken, if you have been hurt he will protect you.  Now, don't get me wrong... these are not his only heightened emotions, he is not a Saint, if he is angry there will be war, if he is feeling mischievous... watch out!  He just seems to have such an old soul... his perspective and intuition is that of someone that has done this before...

Maybe this is his gift... maybe it's what gets him through and also what helps him fight?  The Monkey has an undetermined Metabolic (possibly a neuromuscular) Disorder.  He has undergone countless tests, screenings, and procedures but no definitive diagnosis has ever been reached.  We have always been able to get by with just treating the symptoms and for the most part I've learned to be ok with that.  He has an amazing team of Doctors that are wonderful to us, they all have developed a keen interest in the Monkey and have always gone above and beyond.  Things are changing now though, So, it's time to start from the beginning.  something is happening, it could be disease progression or it could be his growth putting more strain on his body.  We don't know and no one is ok with not having an answer to this one.  We thought this would happen later, maybe at age 9 or 10 but the Monkey is 7 and it's time now... time to start from the beginning. 

Yesterday and today were perfect days for Monkey (for me too).  No school, SNOW, lots of cooking and baking, tons of games... quality family time and some play time with friends too.  All the while I was watching him, keeping a closer eye on him than usual, especially today.  He had been whiny for a few days, his color was a bit off, and his usually ferocious appetite was very subdued.  These are all signs that something's coming.  Sometimes it's fatigue or a growth spurt, or even the weather, if it happens to be very warm or humid.  Other times it's a cold with mild respiratory complications and sometimes it's much more.  With any of these scenarios Metabolic or Lactic Acidosis is inevitable.

The Monkey started to complain of a mild sore throat earlier this afternoon and I thought oh, this is it, wonder where we'll go from here.  He seemed pretty good though... eating well, great spirits, etc.  I put the kids to bed early and snuggled on the couch with  Kevin.  We had been looking forward to some much need alone time and to finally watch The Hangover II.  Well, we got about 15 minutes in when I heard a noise... I bolted up the stairs and found the Monkey covered in vomiting and still mostly out of it.  I woke him so that I could clear his airway and clean him up... he was so upset, my heart just broke for him.

So, Kevin and I cleaned him and the bed, postponed the movie and our time together for another night and now, I lay here, in bed with my baby snuggled up against my side typing his story... PART of his story.  This... disease.... will not define him, it may have hold of a part of him but that is all....