Sunday, May 29, 2011

Just Me

I had two people message me about my last post. It wasn't meant to be directed at anyone. It wasn't meant to confuse. I really feel bad if it caused any concern.

It is all just me. Just trying to figure things out. That's why I started the blog, because we don't have a definite diagnosis to explain why two of my children have died, or whether or not that has anything to do with the variety of quirks the rest of us deal with. Mitochondrial Disease keeps being what is given as a good possibility. Lots of other things have been ruled out. But we still don't know.

A couple of weeks ago, I was able to meet with Chuck Mohan of UMDF. I introduced myself as someone who is still unsure whether mito has affected our family. I explained a little background, and expressed interest in wanting more research for the selfish reason of having a way to better be able to either definitively confirm, or absolutely rule out, mitochondrial disease in our family. He addressed the introduction, and noted how so few families with a clinical diagnosis will have the molecular/genetic key. He was quick to point out that his experience personally, and with UMDF, was that those who have that are the minority.

Part of me accepts that mito is a really likely diagnosis for our family. But I also think that the symptoms I have myself, and even that the kids have, are far too mild to really be mito. In discussions we've had hypothesizing about inheritance for our family, it is suggested it would be autosomal recessive. This would explain why Dominic and Bridget were so young when they died, and why the onset was sudden. But even when I read of other kids with this inheritance who also died as infants, it seems they were so sick that they were hospitalized or at least having a variety of testing to help figure things out before they died. Both Dominic and Bridget had more of the mild problems we are seeing in our family right now. Nothing that really got a whole lot of flags raised. And even after their deaths - and extensive testing and autopsies - there still is no clear constellation for what happened.

For others who have a more clear idea, even without the genetic evidence, there is certainly going to be a more clear answer to whether or not medical interventions are necessary. For my family, we are really gambling. If we assume there is an underlying potentially life-threatening condition, and we choose to aggressively react to things, we have the risk of getting tangled in medical interventions that even if we had a sure diagnosis may be too imposing. And with or without a diagnosis, there seems to be prudence in looking at each individual circumstance and making a decision on what is going on now - not what we think is going to happen later.

My husband and I disagree a lot. When it was strongly recommended that our youngest have a G-tube placed, I didn't like the idea but also felt it could be helpful. My husband was 100% (really 150%) opposed! He didn't think she needed it at all and that it was just insane that it was being suggested. Of course, since I had some reluctance and he was completely unwilling to consider it, we didn't place the G-tube. And now about a year later, hindsight is that he was probably right. She didn't really need it. She has gained about eight pounds this year. She's also grown a few inches.

So it is hard for me to stay in the present, when the past teaches us both that we were not aggressive enough and maybe too aggressive, at least potentially, also - and there is the future of consequences to think about. If we choose poorly, our children will suffer. And we have the responsibility to do the best for our children.

Grief makes you second guess so much, because you wanted to do the best for your children all along. So why did my son die? And then why, WHY would my little girl die six years later? I have vivid memories that haunt me, fighting in a care meeting about Bridget's hospitalization and whether it was appropriate for her to go home or not. We had already gotten discharge papers from the doctor, but the nurses would not sign off on them from the hospital side. I was livid. I was sick of that place, and felt like she should be home with me. The natural side of me felt the hospital environment was just making her worse and at home she would have a more peaceful environment to help nurture her growth and development. I distinctly, clearly remember my tearful declaration: "I've already buried one child! I'm NOT going to let Bridget die!" Somehow, I was convinced that because I had been through it with Dominic, that I would know what to do and when to do it if Bridget needed anything. So why did I miss it (whatever it is)? Why didn't I get her the help she needed before she went into that crisis event that led to her death?

The reality is, I didn't know and I don't know the best way to make sure that we are doing what we need to in order to help our kids be the most healthy. I don't know if the decisions we made then added to whatever it is that took our kids' lives. If we had done things differently, would they have still died? Would they have died sooner or later? Would they be healthy, or have suffered from whatever it is that took them? I am unsure if what the kids who are still living are experiencing have any consequence to their long-term health, or if it's just a temporary difficulty that we can address and then get on with a more healthy future. I don't know if my symptoms are stress-induced or from a true underlying physiological condition. I really don't know.

What I do know is that it isn't good to have some of what is going on happening. Whether or not it is from a bigger condition or it is just its own little isolated problem, it needs to be addressed. And I know I'm really trying my best to look at all sorts of possibilities for the best way to respond. I have an internal struggle between feeling like I'm rushing to the doctor for every little sniffle, or over-reacting because of my fears - and on the other hand, feeling like I'm avoiding it and distancing myself into denial so that I don't have to face any likelihood of another scary answer being given. I vacillate through cycles of wanting to do every test and try every treatment even if we don't have a diagnosis and wanting to have absolutely nothing at all to do with doctors and the medical community ever again.

So my posts are just my way of working through all these feelings along with the current place we are with things. It isn't meant to be a judgment about how others address their situations, or don't or didn't. I don't have bad feelings toward anyone who has given me advice one way or another - and actually, I very much appreciate others being willing to give me suggestions, insights, and advice. So I just wanted to clarify because I don't want others to misunderstand. It is difficult for anyone, whether diagnosed with mito or not, to know - absolutely know - what to do. And so I hope that others understand a little better where I'm coming from.

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