Saturday, June 11, 2011

Not Prepared

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).

1 comment:

  1. Wow. Have you been taking a test drive around in my head lately? How funny that you are going through the exact same emotions as me. Crazy how very connected we all are and how we can share the same pain. I feel the exact same way. As crazy as that may seem to those outside our world I do feel alone. A. Lot. Of. The. Time. No one person completely gets what I deal with on a day to day basis. They never will either. They might see me as losing my mind, or consumed by grief, or not the same person they once knew. They are right in the fact that I am not the same person and never will be the same person. I see things much differently than they do. I think that has an isolating affect on me as well.

    This journey is tough. And not all heart moms experience this journey in the same way either. Some are able to cruise along with not too may speed bumps along the way. They still have the same worries as us but they don't understand to the depths we have gone on our journey. I definitely cherish those moms like you who truly "get it" and embrace those of us who do feel alone at times and need that one person to say "I get it", "you are not crazy becuase I feel the same way".

    {{{HUG}}} Once again thank you for sharing your heart dear friend. I was actually working on a post very similar to this one but haven't hit post yet.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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