Rubber Band

I don't like August anymore. It was never my favorite month, and now I really don't like it. It has been a tough, tough month, and the first week of September was no picnic either. Just a total flashback to last year.

So I'm gong to sit here and try to be open and honest, though it's not too easy. Again, about stuff I've mentioned, but I'm going to re-deal with, now that it's all so fresh...

These times with Joel, the ones where he is obviously unhappy, these are the ones I'm specifically talking about. There are lots of other difficult things about life with Joel, but these are the ones that make me feel like a rubber band in my spine has been slowly tightened, a little bit, each day.


It feels like I'm a compound bow, or a ballista, the tension just slowly being ratcheted up notch by notch. Emotionally it is so strong, that I can almost feel it physically, everything is tight, tight, tight. How much farther can it go before it snaps and who knows what is release like a bullet flying out of me? Or maybe I'm a balloon so filled with air that I'm going to pop.


Yesterday and the day before were good days. Joel not only smiled, he even laughed a bit. He once again cooed and burbled and interacted with me. Days like that, the tension so suddenly releases and now I feel like a limp balloon, or an over stretched elastic or spring. I just flop around the house, limp and boneless. Happy, but useless. It's like you spend hours riding horse, or squatting to pull weeds. Suddenly you stand up, or get off the horse, and you feel like you are jello. Your legs are wobbly, and you just need to sit down! I fed my children and kept them clean, dry, and warm. That was it. Period.

So much of this last month is so much like last year. Even to the point where my prayer at night was no longer, "Please God, just give me one more good day," to "Please God, don't let him suffer." Because a part of me started to long for the day when it would just all be over...


It is so hard to write those words. It seems so selfish and so ... cold. To admit that I could actually feel like I just wanted my precious boy to die so it could all be over for us all. But I said I'd be honest.

I suppose it's not unlike when you just want the band aid YANKED off quickly. Hurt me and be done with it! Or if you ever have had those nightmares where you are hiding from something/one terrible and you keep having this urge to just surrender because the running and hiding are so awful themselves. (Yeah, I have pretty vivid dreams) Terrible times are ahead and you just want to "do it and get it over with."

It makes me feel so guilty, to almost "look forward" to Joel dying. I truly start to imagine the day when I can just grab Caeden and head out the door. No more 2 hour feeds, or cleaning a pump, or packing it up if we want to go anywhere as a family. No more meds, the thought of being able to grab the whole shelf full and chuck them all into the garbage!!! To go to bed exactly when I'm tired and not have to wait for Joel's tummy to empty and then hook up a bunch of equipment. Never be awakened at night again to the sound of seizures. No more phone calls with questions to doctors, no more appointments, no more hospital stays. To take a trip whenever we want. Overwhelming relief and freedom.

Does that sound terrible?

The thing is, I never think this way when Joel is happy. Heck, I desperately WANTED the CPAP, even though I was told it would make life so much more work for me. And while Joel was doing well and happy, it felt like nothing much. I was like - Oh PLUH-LEEEESE! Give me a break, this is nothing! That's how I feel about all of it, when Joel is doing well. 99% of that time I really don't complain about it all.

But when Joel is not happy, then everything weighs on me. Everything seems to suck life right out of me. It slowly gets harder and harder, the pressure is ratcheting up, the pain and pressure increasing, and I start to long for it all to end.

Me, longing for a time that just isn't so like living life in an emotional trench while WWI goes on around me. Day and night in a muddy, cold trench. I've got trench-foot and the rations are not too good. A wasteland surrounds me, and the enemy assaults me from a distance in a seemingly constant barrage... I can't wait for this war to end.

Which is a bit of a fallacy. I long for the relief, but Joel's death will release me from one battle and into another. Hardly a true end to the war. Just a different stage of it.

I know that, but months like this I can't bear to think that way. Maybe it's a coping mechanism. Maybe it's just how anyone feels when someone they love is sometimes suffering. Maybe it's trying to put a bright face somewhere into it. But when it gets like this, I almost need to be able to say "Soon rest is coming. Soon the tension, stress, struggle, soon it will be over. We'll be free." To say "When this ends, a worse time will come, one where I long to go back to THIS time every single day, I didn't know then how lucky I was" -- to say that is just something I can't face when it is so hard already. Believing that feels like it would just finish me right off.

I was speaking to a friend yesterday, a friend who has lost her child. She told me there would be some sense of relief, even though she admitted to wanting her baby back so very badly. It made me feel a little better. One thing that really makes me angry at times is that the thought of relief is attached to so much guilt. It was good to know that I'd at least get what I paid so dearly for, in a manner of speaking. I don't know if you can understand all this unless you've lost someone to a difficult death, but I hope you can get some sense of what I mean:

First there is suffering, sorrow, pain, longing for relief and guilt for wanting it. Then there is relief, and grief, sorrow, pain, longing for your loved one, and guilt for feeling any relief. So crazy at as it sounds, it's good to hear that at least the relief part of it isn't totally a myth.

I've really laid a heavy on you with this one. I don't even know if I would have been able to write it, if Joel hadn't had a couple of "good days" now. Several good days in a row give me the strength to face the feelings and let them all out. Once the "rubber band" feeling wears off. Of course, they also leave me feeling a bit rough, so yesterday, when I wrote most of this, I felt pretty tired, and, well, a bit rough, for most of the rest of the day. Good thing it was a good day!

Anyway, I feel bad leaving you with all this negative emotion, all this sadness and guilt, and, well, agony really, just there - BLAH. Like I emotionally puked all over your car of life, and I sure hope you've got a good air freshener in there so you don't have to smell it all day long. I don't know if one of those little trees will cut it. You need some FEBREEZE, man! Go out and watch a silly movie or something. That's what I'm going to do! And play some Lego with my 3 year old.

"This is my comfort in my affliction, for Your word has given me life." (Psalm 119:50) I'm still thankful for that.