adventures in art

This past trip to Dallas was hard for me emotionally. There wasn't much different about this trip than all the others... there weren't really any special tests or extraneous lab work to be done. But for some reason, this trip was the first trip that I really felt like a mom with a sick kid. Even though I've known about the NF since before Tristan was one, and even after the MRI and all the tests and the final lab work that confirmed the diagnosis ...somehow this trip felt real. It was as if for a moment I could peer into my future. That these trips were not going to stop anytime soon. This was not a short term problem... but just the beginning of a very very long term issue.
There were no reassurances this time around. I was expecting this trip to be like all the others... we go, the doctors take a look at T and then we are sent on our way with reassuring words in our ears "he looks great - he seems to be right on track - what a fun engaging little guy"... etc etc etc. But this time it was more serious. Tristan's blood pressure was/ is high. Hypertension - which is common in NF 1 patients. There was talk of putting him on medication - I thought... blood pressure medication? He's only 2... And then I realized... he really IS sick... His speech, although it has improved since we started therapy is still very far behind other children his age and with each day that passes the gap grows bigger. We also received a diagnoses of 'low muscle tone' which seems to be one of the problems behind his slow speech. So we start occupational therapy next week. For how long and how often I have no idea yet.
I love Tristan's pediatric neurologist. She and I visited for almost 45 minutes after she took a look at both boys. We talked about all the things that will start to pop up in the next few years, what types of decisions that will need to be made, and all the things that Tristan is now at risk for. She gave me some names of other doctors and authors to look up for more information specific to NF 1. She asked me how I was doing. I answered "fine" but she could tell that I was overwhelmed. I still feel overwhelmed. She apologized to me for being the bearer of bad news. She said "when you go to your pediatrician for a check up he paints a beautiful oil painting of your child, bright and happy with no blemish. Then you come to someone like me, a specialist and we zero in on things that you wouldn't even think to notice... You walk way from us with a ugly charactercher of your precious child. An ugly version of his worst issues." She tried to reassure me that Tristan was very bright (whatever that means) and that I was a great mom...
It was the "great mom" comment that got to me the most. I don't feel like a great mom. I feel selfish and immature. I am either wallowing in pity for Tristan or wallowing in pity for me! I find myself thinking about me going back to work or back to school ... starting out on a whole new adventure and then the vision/dream is shattered by the reality of mothering... It's not so much that I feel that I am being pulled... but rather, pushed upon. I can feel the weight of things being piled up on me. I feel responsible for everything else but my own life. Where is me in all of this? the.... carpools, sports, birthday parties, holidays, extra class projects, boy scouts (or something like that) homework, meals, sleepovers, the driving all around town for multiple therapy sessions, doctors visits, waiting at pharmacies hospital stays, and surgeries... cleaning, organizing, cooking, washing, scrubbing, writing, ordering, mailing...
But nothing is heavier than the weight I feel when I look in those bright blue eyes, smiling up at me, completely unaware of the pain that lies just up ahead.
Posted by Picasa


annie said...

My advice, the only thing that's worked for me, is to protect yourself from any notion of emergencies and establish normal. A constant emergent reality is the road to crazyville. There's a chapter on that in this book:
Ordinary Families, Special Children ... - Google Book Search

Leah said...

You're grieving - it's hard. When we see these issues we feel like our children won't have that normal life we envisioned. We pray and we hope but I know I was almost resentful. I still can be at times. It's not the children we resent - just the lost dream. We still have wonderful children but special needs change things whether people get it or not. Let yourself grieve. I still grieve - especially right now with the whole auditory processing thing adding to our list of diagnosis. I worry about her future and yes I feel selfish and worry about mine but it's not selfish. It's hard to keep the view and realize it's ok to grieve and be frustrated. We have to before we can surrender and accept. I think I am just for the first time almost really able to surrender and not grieve so much.