It's been quite some time since the last post. I've been telling myself life has just taken over and that there is no time to update the blog. I originally started posting to the website to update folks on Tatiana's condition. It didn't take long for it to evolve into a kind of self-healing platform.
A lot has happened since that last post! I've gone through two jobs - which, of course, means I've also had to switch insurance carriers and reset my out-of-pocket deductibles and contributions. I'll spare my rant on that subject for a later post. I might even post pics of the mountain of paperwork that comes with that territory.
At some point, I guess I just started censoring myself by not posting. Even though Tatiana's issues have reached a point where she seems stable, we constantly have to monitor her to be sure there isn't anything going on under the surface. Even then, I can't say we're fully in the clear. Its nearly a daily struggle to overcome my paranoia of all of the possibilities for what might go wrong - I am, after all, a pessimistic optimist: I have faith that everything will turn out fine, but I constantly feel the need to prepare for a crisis. We're also faced with the repercussions of everything that could have gone better: insurance, self-advocacy, better information, access to resources, etc.
All throughout those frustrations, I would come up with some great posts in my head! Somehow, I kept telling myself I had to have everything sorted out before writing about it. Lame, I know. Maybe I was just so overwhelmed at a time when I felt I should have been enjoying the calm after the storm. Maybe I just didn't know where to begin.
That takes me back to the post I left half way done, so I'll pick it up from there!
A few months after Tatiana's last surgery, several people would constantly ask "How is she doing?" - always with the best of intentions and a genuine sense of concern. I never quite felt comfortable with my response. It's difficult to explain. I suppose it's a combination of not knowing how to respond and not knowing the precise answer to the question being asked.
Reminds me of the earlier months in her life when I would try to explain her condition. Struggling to find that fine line between what people are ok hearing versus what is actually happening. The looks on their faces. Me not wanting to disappoint anyone with my response. Maintaining my composure when people ask for the details and I realize I've said more than they were ready to handle.
It's a constant negotiation of sorts - one that still applies even after all this time neglecting my posts.
Do I go into detail about how she chucks her food up at least 3 times a week (it has gotten better now, but I swear it gives us a false sense of security!)? Or about how she suffers from chronic constipation? Do I tell them that for a good while she was forced to experience the unpleasantries of an enema on a weekly basis and sometimes daily? Do people want to hear about the constant frustration from visits to the doctor's office that result in nothing more than a definitive indefinitive?
She seems fine. She looks perfect. She doesn't have to see so many doctors as often anymore. On the other hand, silly foods still get caught in her esophagus (and no one can tell me what the issue with that is). She has the worst time going poo (and it makes you want to cry not knowing how to make her feel better as she props down on all fours writhing in pain).
I still don't have an answer in terms of how to best respond, but I can say I am grateful for still having the opportunity to respond. The silver lining in the complexity of how to form my response is that it gives me the constant opportunity to reflect on our journey and be aware of my own emotions. We've come a long way! I
A lot has happened since that last post! I've gone through two jobs - which, of course, means I've also had to switch insurance carriers and reset my out-of-pocket deductibles and contributions. I'll spare my rant on that subject for a later post. I might even post pics of the mountain of paperwork that comes with that territory.
At some point, I guess I just started censoring myself by not posting. Even though Tatiana's issues have reached a point where she seems stable, we constantly have to monitor her to be sure there isn't anything going on under the surface. Even then, I can't say we're fully in the clear. Its nearly a daily struggle to overcome my paranoia of all of the possibilities for what might go wrong - I am, after all, a pessimistic optimist: I have faith that everything will turn out fine, but I constantly feel the need to prepare for a crisis. We're also faced with the repercussions of everything that could have gone better: insurance, self-advocacy, better information, access to resources, etc.
All throughout those frustrations, I would come up with some great posts in my head! Somehow, I kept telling myself I had to have everything sorted out before writing about it. Lame, I know. Maybe I was just so overwhelmed at a time when I felt I should have been enjoying the calm after the storm. Maybe I just didn't know where to begin.
That takes me back to the post I left half way done, so I'll pick it up from there!
A few months after Tatiana's last surgery, several people would constantly ask "How is she doing?" - always with the best of intentions and a genuine sense of concern. I never quite felt comfortable with my response. It's difficult to explain. I suppose it's a combination of not knowing how to respond and not knowing the precise answer to the question being asked.
Reminds me of the earlier months in her life when I would try to explain her condition. Struggling to find that fine line between what people are ok hearing versus what is actually happening. The looks on their faces. Me not wanting to disappoint anyone with my response. Maintaining my composure when people ask for the details and I realize I've said more than they were ready to handle.
It's a constant negotiation of sorts - one that still applies even after all this time neglecting my posts.
Do I go into detail about how she chucks her food up at least 3 times a week (it has gotten better now, but I swear it gives us a false sense of security!)? Or about how she suffers from chronic constipation? Do I tell them that for a good while she was forced to experience the unpleasantries of an enema on a weekly basis and sometimes daily? Do people want to hear about the constant frustration from visits to the doctor's office that result in nothing more than a definitive indefinitive?
She seems fine. She looks perfect. She doesn't have to see so many doctors as often anymore. On the other hand, silly foods still get caught in her esophagus (and no one can tell me what the issue with that is). She has the worst time going poo (and it makes you want to cry not knowing how to make her feel better as she props down on all fours writhing in pain).
I still don't have an answer in terms of how to best respond, but I can say I am grateful for still having the opportunity to respond. The silver lining in the complexity of how to form my response is that it gives me the constant opportunity to reflect on our journey and be aware of my own emotions. We've come a long way! I
