You are never really prepared. I think that is the big lesson for this week.
I frequently read the carepages, caring bridges sites, blogs, and facebook posts for many, many heart families. Many children underwent surgery this week or are preparing for it next week. Others are dealing with the issues we all seem to face post-op, from eating difficulties, to problem sleep. I've been there and done that. The one thing I constantly feel when reading these posts is that I wasn't really prepared for what laid ahead. And believe me, I tried to prepare. I had 19 weeks of prep time. I did tons of research. I read lots of books. I knew what to expect. But, I wasn't prepared.
How could I prepare for the moments when my baby almost left me forever? How could I prepare for days by a bedside, listening to silent cries and watching my helpless child in pain? How could I prepare for the sheer torture involved in force-feeding my baby, only to have her vomit every.single.thing back up, crying in agony the entire time? How could I prepare for cyanotic episodes and trips to the ER? How could I prepare for the pain of hearing that my 21 month old has less than 2 years to live?
The answer is, that I couldn't prepare. But, that is not what I was expecting to be prepared for. I knew nothing could help for those moments and I hoped like hell I wouldn't have to deal with them. Of course, I've lived them all.
But, what hit me this week is that I was never prepared for the loneliness that is being a heart mom and I didn't realize I had to prepare myself for that. It totally caught me off guard. And in my reading, it seems that I'm not the only one. None of us heart moms were ready to be shoved into this desolation. We all had spouses, family, friends, someone we thought would be by our side, would help us through the hell. We knew they'd be there in any way they could and they are there. We are all surrounded by people who love us and want to take away our pain, ease our burden. But, yet, we are all still alone.
It's not something that we think about or dwell upon. The loneliness and desolation gets to us as we try to sleep at night or when the shower hums overhead. In those moments when our minds lose focus, we realize that there is nobody out there who shares our particular stresses or fears. Our husbands do their part, but it is not the same. Only a girlfriend knows how to talk. Our moms will hold our hands, but they do not sit in the same space. Our girlfriends try, but without having faced the demon that is CHD, they cannot touch our core. Our fellow heart moms are our closest allies, but they are not there in the room with us because they are facing their own demons. And then it hits, we are alone.
And so we sit alone with our thoughts, our worries, our fears. I can think of nothing worse that I can be doing. And that is what I could not prepare for, what I did not know I needed to prepare for, and what I've glimpsed this week: heart moms are united in our grief, but alone in our sorrows. We always expected someone would be by our side and we are surrounded by those loving angels and friends, but ultimately, we are each left alone.
I am not saddened by this revelation. Instead, I feel it bonds me closer to the other heart moms. I know if I cry myself to sleep tonight, I'm not the only one. More importantly, I know that even though I am alone in dealing with my darkest fears (and who isn't, really?), other people I care for are dealing with their own darkest fears alone and surviving. I am inspired. I hope that I can do the same for others. While we may be alone when the waters run still and the night is silent, I am here whenever needed. That is a promise. If you need me, I'll be here to listen (heart mom or not).