Wednesday, February 2, 2011

Looking on the fun side

After my talk with Jason that day in March of 2007, I thought to myself, "Well that went pretty well!"  I was pretty happy with how I had explained what was going on with me, and how he had responded.  I felt that I had used some good analogies to describe my illness, treatment, and the changes he would notice in me, and given him the information not just in terms he could understand, but in a positive, upbeat way.  I breathed a huge sigh of relief to see that he didn't appear frightened or upset in any way, and knew that I had done the right thing for both of us.  I decided that going forward, both Steve and I would treat this journey like an adventure...yes, it would have its ups and downs, but we would make it as fun as possible.  It was important to me that Jason, even at just four years old, know what was happening along the way and always have his questions answered.  The last thing I wanted was for him to experience lots of clandestine whispering and conversations behind closed doors, which I thought would be even more scary for him.  Of course, we made sure that he had just enough information to feel involved and empowered, and at the same time the social worker in me always asked him how *he* was feeling, if he had any questions for me or the doctor.  Often I would pass his questions on to my doctor and come home with the answers, and I could see how that made him feel valued.
Over the next several weeks, as I made arrangements for Jason and myself in preparation to move to Boston, we turned it all into a fun project.  Fortunately, he was already excited for my mother in law to arrive, as she typically did every summer, and to have her with us for a couple of months.  I showed him an impressive schedule of summer activities and playdates, day trips with my parents, and most importantly, a train ride down to New Jersey to see his cousins.  I loved how he wanted to play "doctor" and would pretend to give me "strong medicine" to "get rid of the bad guys", which showed me that he had really been listening that day.  I even let him play with my new wig, and I think being silly was really good for both of us.  It helped Jason not to be scared, but also lifted my spirits in anticipation of our being apart.
I knew that when I came home after the stem cell transplant, I would look different, but I wanted to give Jason some idea of what other changes to expect.  I explained to him that after the strong medicine took away my "superpowers", my body would be weaker and not able to fight off germs as well.  We talked about how important it would be to wash our hands lot, and I took him with me to TJ Maxx to pick out pretty bottles of colorful hand soap that matched the bathrooms.  I showed him how to cough and sneeze like a "vampire" into the crook of his elbow, and we gave hand sanitizer a fun, easy name to remember:  Magic Soap! 
With all of this going on, I didn't let it stop me from celebrating Jason's fourth birthday at Jump On In, an indoor inflatable playground.  It was a perfect day, and so important for me that he enjoy that celebration with me, Steve, his family and friends before I had to leave.
The real test of how my upbeat and truthful approach had worked came when it was time to have my chest catheter inserted.  This was an outpatient procedure done a couple of weeks prior to the chemotherapy and transplant.  I would go home with two tubes visibly sticking out of my chest, in order to have my stem cells collected the following week.  Once that process was completed, it would finally be time to pack up and move to our furnished Boston apartment for the next month or two until I was strong enough to return home.  Things had gone so well with Jason up until this point, and he seemed to be handling the whole situation with such maturity, I was afraid that seeing this contraption sticking out of my chest would really scare him.  I wrote about it in my journal:

Friday, June 1, 2007
Jason had a big day with Nana today.  First school, then soccer, then the pool for the rest of the day.  He was fast asleep in the car when they came home, and we couldn't even wake him.  He finally woke up and right away asked to see 'where the medicine' was going to go.  When I showed him the catheter, he wasn't scared or upset!  He was totally cool seeing the tubes--he's so awesome.  He was very gentle around me and before he went to bed he brought me his stuffed puppy dog to help me feel better!  "If it hurts, Mommy, I can get you a band-aid," he said.  Wow.

We continued to involve Jason as much as possible the last couple of weeks I was at home.  He accompanied me and Steven to Boston one day so he could see what our apartment looked like.  I wanted him to be able to picture where I would be living, and know that it was only a car ride away.  Each night when I returned home from having my stem cells collected at the hospital, I spent as much time as I could with him, taking care of the bath-book-bed routine and relishing every moment. 
As those last few days flew by, I really felt like the last grains of sand were draining out of the sand timer.  Fortunately, we had scheduled his trip to NJ with Nana on the train a few days before I needed to go to Boston, so instead of my leaving him, he would be the one to depart first on a fun little vacation.  This would allow me a few days to finish packing and donate my hair to Locks For Love, both of which I thought would be too upsetting for Jason.  We had arranged for them both to head to the train station directly from school.  I would be able to attend the last day of preschool and his "graduation" ceremony, and he would have an exciting train ride to look forward to.
Jason was so looking forward to finishing school and seeing his cousins, that I started to wonder if he might have forgotten that I would be leaving for quite a long time, and that I would not be at home when we returned from NJ.  Or perhaps I had done such a terrific job turning this into a fun experience that he had no reason to be sad.  Either way, I was incredibly touched when, on the last morning of school, which would be my last morning at home with Jason for 4-6 weeks, he walked in to wake me with kisses as usual and said, "Mommy, it's our last snuggle." 

That was a bittersweet day for me.  On the one hand, I was relieved that my decision to talk openly and honestly with Jason had been a success.  The fact that he was able to ask questions and re-phrase what I had told him showed me that our little games had helped him to understand what was going on.  As we hugged and kissed goodbye in the preschool parking lot, I was glad that he had something fun to look forward to, and wasn't focused on my leaving.  And ultimately, it was my four year-old son who made me realize that maintaining a positive and playful attitude would maximize my own recovery.

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