Sunday, November 4, 2012

What if

Tonight it just kind of one of those nights.

One of those nights where I miss him. Where my heart truly aches. I feel emptiness inside. I can't quite even describe the longing that is present right now. The hurt. The emptiness.

I am tired. I am worn out. I am absolutely exhausted from working 6 days for 10 hours each day and knowing that I still have one more day to go. I know that this makes my emotions all out of whack and makes my feelings 10 times as strong. When I'm feeling like this, this is when I start to miss him and start to get emotional about it. But the feelings.... they are still there. That's something I can't deny. And the crappy part is that I can't shed a tear even though I want to so badly. I wish that I could cry. Why is it that in the moments where I WANT to cry and NEED to cry I can't. I put up this defense. Something that blocks my emotions off to where I am numb and just sad. In the times where I don't have to be strong, I am... but the times where I really shouldn't be crying and I should be strong -- I can't be and I end up breaking down. Embrace it, they say -- but I can't. I could really use a good cry being by myself.


These past 2 or 3 days I've been having some fleeting "what-if" thoughts. Everyone has them. I know nothing can be done and most of the time a person just hurts themselves more by thinking about those "what-if" moments. That's why they have been fleeting. They come into my mind and I try and push them out as quickly as they come in because it hurts to think about. It physically, emotionally, and mentally hurts to think that in some way, no matter how small that chance would have been, I could have done something more, suggested something different that might have saved, or prolonged my husbands life. I get a knot in my stomach each and every time a thought like that crosses my mind.

I try to rationalize everything, but these thoughts won't leave. I miss him so much that any little thought that comes to mind that says that maybe, possibly, if I would have done something different that things would have had a different outcome, well it plays a small guilt trip on me.

So what has been weight on my mind so heavily lately and why? One of my friends with CF is currently fighting for her life. I've known her for quite awhile now and she's reached out to me a few times, especially recently. She's a wonderful girl with a great spirit about her and it kills me that she's struggling. She has been in the ICU for about 3-ish weeks now and has taken a turn despite all measures to help her get better. She's currently in a very critical situation right now and there is a chance that she may not make it through the night. And just as a side note here....I am very tired of losing my friends. It hurts me with every one and for some reason this situation has really been getting to me.  I think it's because I see her and her family going through nearly the same things that Spencer and I went through when he was so sick. The updates I get from her mom are so eerily similar to what I went through with Spencer. It hits home a little bit too hard, especially being so close to the year mark of when I lost him. And I have lived it. I know that they have to have hope. I totally and completely get that. I had to have SO much hope with Spence in order to make it through. But I also know the odds. I have seen several other CFers pass away in these same situations since Spencer died (and even before). Not one of them in this type of situation has made it through. I pray that she's an exception to this... I really do. Because my heart will absolutely break if I wake up in the morning, or at any time learn that she's earned her wings. My heart can't possibly take any more loss.... Anyway...

She had to be put on an ECHMO machine to work for her heart and lungs because they couldn't do the work for her. I've heard of other CFers being put on ECHMO to give their lungs a break and give things a chance to heal -- not often does it work (from what I've heard) but sometimes it does... it allows them another chance to fight through things. When Spencer was nearing his final weeks I had read about a little boy being put on ECHMO, it's the first time that I'd ever heard it. And then someone reached out to me, was giving me straws to grasp at for anyway to save Spencer's life. They mentioned ECHMO but I immediately dismissed the idea of it. For one, it was scary to me. Two, the doctors hadn't mentioned it and so I figured it wasn't an option for us (and it probably wasn't.... but of course... what if?) But now I hear about my friend being given this last ditch effort to save her life.

The thought that crosses my mind a few times a day now is wondering "what if" I would have spoken up about this? At least mentioned it as an option to try and get his lungs to heal. The worse we could have been told is no.... but I didn't even try.

When I think about it in detail, when I think about it in the way that I force myself to to spare me from the pain -- It probably wouldn't have been a good option. Again, "What if" it wouldn't have worked? What if things would have gone horribly wrong? What if they would have tried to ween him from it and it failed? He would have died in a way that neither him or I wanted. If it wouldn't have worked I wouldn't have gotten so many precious moments with him. I wouldn't have gotten to be there, with my support system, as he eased into the next life. It would have put him through another surgery, more pain, more struggles. The possibility of more complications and infections. I don't even think he would have agreed to it. He was done. He was ready to go.

But then I go back to the good, "what-ifs". If it would have helped his lungs heal long enough to get him stable. Possibly gotten him stable enough to get evaluated for a lung transplant (even though that would have been even more unlikely considering we had to travel....) and etc etc. You know where it could lead -- it could lead to where he would still be with me right now.

I know the logistics of it. I know it most likely never would have been an option because no one thought he was going to recover. There wasn't much hope from his medical team that he would survive or even get a transplant (not to say that they didn't have his best interests in mind or they were "heartless" or anything like that... they weren't. They did everything they could... at least I think so.) And the more I type things out, the more I know it really was just not an option considering everything that was against him.

But when you miss someone SO much... When you want them back SO badly, you just cannot help these thoughts creeping into your mind every now and then.

It's the same with all of this talk about the new medications that are giving CFers a completely different and new life. Kalydeco and all of the advancements. The timing of what happened to Spencer is absolutely awful. Just a few short months later all of this finally came available to patients. "What-if" it would have just waited. There would have been SO many promising things for him... in HIS lifetime. It would have given him more hope. More reason to stay healthy.... I'm not going to go on and on about that -- but it does bother me and it makes me think about the crappy timing of everything quite often.


What I want more than anything right now is to be able to hold him in my arms. To be able to reassure one another. Comfort one another. Cry with each other. Support each other.

I miss him tonight. I have an ache in my heart, a void, that hasn't, and can't quite get filled with anything. I just needed to write a little bit to get it off of my chest in hopes of a good nights sleep. Whether it made sense or not, that doesn't matter. I just needed to write.

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