Re: Help me cope-Ruth

[Guest guest]

Ruth,

I was just thinking the same thing in my mind. How do we do it and if I tell you your words are the ones I always keep telling people but never myself. I just wanted to say nicely put.

mom to nicole Re: Help me cope

,

Your question is profound. How DOES one deal with this emotional roller coaster called mitochondrial disease? With the ups and downs? The not knowing? The "what ifs" (those are the worst in my mind)? At the risk of sounding trite, the answer is one day at a time. Sometimes just getting through one hour or even another breath at a time. Most days i can keep the panic and worry at bay, just thinking about how far my kids have come and knowing that for right now, things are okay. But then, something will happen (like when Suhad lost her precious Leanna a few days ago) and reality comes crashing back in on me. This IS real, and not going away. And there is always that possibility that my kids will deteriorate, just as many families on here have already experienced. What keeps me bouyed is knowing that i really have done the best that i can for my kids. I've done my research, looked into the most recent developments on treatment. I've gone to the conferences, i network with other families, raised $$ for UMDF research, and faithfully take both my kids to their appointments ( a frustrating experience in and of itself). But even having done all of that, i still can't take the disease away. So i enjoy my kids, read with them every night, tuck them in bed with lots of kisses and i loves yous, and try to keep the worry in check. Some days are better than others. I know some day it might be our turn. But i'm just thankful it's not today. I hope this helps in some small way.

my love to you

ruth

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