On the upswing

June 1, 2012

Yesterday was so incredibly hard.  It was Big D's birthday.  Dillon was going to go to his classroom with cupcakes for a special snack, making his first 'public appearance' since his diagnosis.  I went into his room at about 8 a.m. (which is late for our house, usually the kids are up at 6:30, so had a feeling something was amiss).  He was still in bed with the covers over his head, which is normal.  When I softly whispered in his ear, he ripped the covers down, scowled at me, commanded me to leave his room immediately and leave him alone.  WOW, I thought, that is new.  Then it all became very clear.  Not only was he still tired and a little nauseous, but I think the emotionality of his upcoming outing just took over.  He informed me there was NO WAY he was going anywhere, not even out of bed.  I reminded him about his classroom visit and the snack delivery and I got this in response.....

CUPCAKES ARE NOT IMPORTANT MOM!!!!  

Right Dillon, you are absolutely right.  Cupcakes are meaningless and stupid in the context of your life right now.

I was actually quite torn because a fellow CHAMPs parent works at Whole Foods and got the cupcakes donated for the class, and besides that, I had arranged with Big D's teacher to pick up all of his desk items and work for the year, as well as the fact that his classmates had more cards and gifts that they really wanted him to have.  Sooooooo, I called in the reinforcements.   A 5-minute conversation with my mom had her dressed without a shower and in the car to our house to 'sit' with Dillon so I could go do the cupcake thing, get the gifts and school stuff, say goodbye to D's teacher.  Inside of 15 minutes my mother was on my doorstep, bright eyed and bushy tailed, ready to take on the dragon that was still under the covers in the back bedroom!!  Nausea, crying, whining, vomiting, not eating, more whining, napping, no energy, true suffering is what sweet loving Nana dealt with all day long. 

I cried more yesterday than I have since we got the diagnosis.  It was just so hard to see Dillon not feeling well, being emotionally miserable because he could not enjoy his 11th birthday, and then all the feelings that come up for us parents around our children's births and the memories of that and the hopes and dreams we have for them as they grow.  It was gut-wrenching and by the end of the day I had a terrible headache and sore swollen eyes. HOWEVER.....

BIG D rallied.....as usual.  He decided he wanted to participate in the family celebration we had planned for him and he did not want it at his house (he informed us all late in the day that he was SICK of being at his house).  So off we went to his grandparent's house about 5 miles from our house.  It was the grandparents, a couple of aunts and uncles, a cousin and then Sean, Luca and I.  My mom and brother prepared a 'taco bar'  (BIG D LOVES TACOS) and my dad made his famous crock pot beans.  Sean's mother brought a cake and the plates and such...so all I had to do was show up.  Dillon and I arrived.  He was able to give everyone a small hug and a smile.  He sat in a chair looking so frail and tired and after about 5 minutes he told his Nana that he wanted her to join him in the back bedroom...."just listening to all of the voices is exhausting," he said.  He spent much of the gathering in that back bedroom with any one family member but not two at a time, it is just too much for him.  He did come out for a few minutes to eat a bowl of Grampy's beans....and then another bowl....and then a request to have some come home with him (and then he ate them again in the morning with his meds....EWWWW!!!!...but what a relief that he was craving something healthy and substantial).  He finally did manage about half a taco and a tiny scoop of ice cream and then he was DONE.  Time to go. When Dillon says it is time to go...it is time to go NOW!!!

After all that activity (leaving the house and talking to a few people) Dillon decided it was in his own best interest to cancel the basketball party we had planned months ago, which was to be held saturday morning with a handful of friends.  He is so wise and stoic and brave and just so completely amazing.  He decided that he knew he would be exhausted and not really enjoy the company of his friends and he is quite certain he would not be playing basketball...so what is the point of a party.  I agreed that we could re-schedule it on any random day in the weeks or months to come and then he could truly enjoy himself and have the party that he imagined in his mind when we planned it all those weeks ago.  No tears, no real disappointment, just a matter of fact decision.....this is just how it needs to be right now.  Man this kid amazes me every single day.

I got the best gift ever 11 years ago....the gift that keeps on giving :))

Today, Friday....we have a whole new boy.  He is chipper and energetic and feisty and lippy and grumpy and happy and it is almost the old Dillon.  He ate several times today in larger quantity than normal.  He drank and drank this amazing yummy drink that his Spanish teacher gave me to deliver to him today....(Senora Mace, if you are reading this...we need a refill, wink wink).  He opened his gifts, which he was uninterested in doing last night.  He read the cards, he played a game, and started a new Lego that his brother gave him, we went on a couple of walks, he answered the phone.....he is just great today.  So for everyone who was worried yesterday, have no fear Dill Pickle is here!!!  He still won't go outside and shoot baskets  (he got a new very cool basketball hoop for the street for his birthday).  His statement to me is this...."Why would I want to go shoot 2 or 3 baskets, miss because my arms feel weak and then be exhausted for the rest of the day?"  Right Dillon, why would you want to do that.  You want to use that hoop when you can really USE it.  So, we patiently wait for that strong athletic boy to get the courage and energy up to get out there and shoot some baskets.  It will come, it will come, it will come; we have only been home for 3 days Shari....it will come (I keep whispering in my ear)!!

D opening birthday gifts

The fashionable Luca