Monday, March 23, 2015

Another Long Hiatus...


It's been about a year since you heard from me.  And the last time I was here, I wasn't in the greatest place, or making as much sense as I would have liked to.  And in the months since, the focus has been on rebuilding and making new lives.  While there are many details that don't belong here on the grand ol'  internet, there are some that do.  So I'm here. I'm ready.  

So where do I start with explaining all that I can about all that went in to a years worth of silence?  This time last year we were preparing for a month long hospital stay at a rehab facility in Dallas to help Jackson learn to eat by mouth again.  He's had his feeding tube since he was 15 months old, and every now and then, kids on long term supplemental feeds can 'forget' how to eat by mouth.  They don't have the same need to do it that kids who only eat orally do, so slowly over the course of many months, we watched our little monkey backslide until he would only nibble at single grains of rice to appease mom and dad into thinking he was 'eating'.  

This month long stay meant sending my daughter to her dads house for the entire month, visiting as often as we could, but still not seeing much of my firstborn.  It also meant nearly a month off of work.  And to add to that, it had become clear in the weeks before that our current family model was not a sustainable one, and Jackson's dad and I had split up.  It was a personally excruciating time. And at the moments where everything was falling apart, it also started to come together, as we watched J gain five pounds in a week, excel at the feeding program, wean completely off of his tube feeds for the duration of his stay, and earn an unprecedented early release from the program.  It was brutal.  It was emotional.  It was cathartic and hellacious, and all of it was necessary.  This blog has always been about my experience.  I can't tell you what it's like to be anyone else.  Sometimes, yes, I feel selfish for the 'me, me, me'  way that it's written, but my own perspective is the only one I have, and I am willing to go out on a limb and say it's one worth sharing. But through those days where everything was pretty dark and I wasn't sure of myself or anything else, I didn't want to share anymore.  I needed some peace.  I enjoyed the months of good health and almost normal life and health that Jackson was enjoying.  And you know what?  I'm not afraid to say it.  Nobody gets to have it, least of all Jacks, but I wanted a break from Cystic Fibrosis.  

I wondered how he would feel someday, looking back at my words, the raw emotions that his mom shared because of the genes he was born with.  I wondered if he would feel responsible or guilty. I wondered if he would be angry at me for sharing the details of his life without asking. I wondered if it was responsible for me to continue to do so.  I was asked once or twice why I was so open about such personal things.  I even felt like sometimes people wondered if I didn't enjoy the attention that came along with my role as a bullhorn and beacon for moms raising a kid with a chronic disease.  People are always going to draw their own conclusions about why you do what you do, so I'm of the mind you should do what you think is right anyway.  And over the last five years, I have met some incredible moms and dads, cousins, friends, and others who were struggling in the face of a new diagnosis.  I had the privilege of being able to be there for them.  I remembered the very few people who played that role in my own life and how much I love them for understanding something about my life that nobody else will ever get. 


I wrestled with my feelings for months.  I also ignored them.  Because it was much easier to enjoy a normal-ish life than to keep going back to the subject of what this disease can do to  our lives, our families, and most of all, those affected by it.  I was tired of struggling with all of that.   So I took some time to not feel that particular struggle.  But as the one year anniversary of the hardest month of my life rolls around, I know the luxury of 'time off' from CF is…well, it's bullshit.  I still have a kiddo growing up with Cystic Fibrosis.  There are still 60,000 some odd people around the world and all their loved ones, living with it, too.  And sometimes I know something about their struggle.  And sometimes I can teach the people who have loved and followed Jackson for the last five years something about how we're fighting it.  Sometimes I just need to vent to the keyboard.  And sometimes I have to ask for help.  To rally the troops who have pulled, lifted, and dragged me along this road when necessary.  When it all comes down to it, I feel a tremendous responsibility to keep talking about CF.  To keep raising awareness and funds to research and develop and assist and medicate and at all costs, SURVIVE this diagnosis.  This is my responsibility.  This is not a role I chose, or J's dad or his sister or his grandparents or Jackson himself ever would have taken on willingly.  But at the same time, nobody is in a better position to use this role to do good than we are.   And so here I am.  Ready to spill my guts out to all of you, be there if you need me, ask you for your help, and do the one thing everyone knows I do best….talk. 

No comments:

Post a Comment