Feeling death

Warning: I do not know where this will go. I may be validated or just alienated with all that I am probably going to share.........so here goes...

There seems to be a fuzzy boundary between the joyous miracle of life that we're given and the sometimes tortuous task of living.

Let me explain.

I believe know that I've been blessed beyond measure in my time here on Earth. I know that I've been given more than some can wish for......I know that I've had the opportunity to experience life in ways others may only dream of......I've experienced love and laughter. I've experienced joy, I've experienced faith, I've experienced God. I have family. I have friends. I have a home. I have life.

Now, on to the part about actually living this abundantly blessed life.

I've lived through disappointment. I've lived through pain. I've lived through sin and I've lived through doubt.

Have you ever planned the funeral of a child - your child? Me either. Fortunately, most people my age can say no.......the sad part for me is that although I haven't actually PLANNED a funeral I have paid close attention to other kids' funerals - or just funerals in general.... I've thought about what music will be played. I've thought about who will be there. I've thought about how the flowers should look. Stevie and I have even walked around the cemetery deciding on our plots. Responsible? Maybe. Fun? Hardly. Realistic?

Death is not something we commonly choose to discuss....well, not anything we wish to dwell on.....but in talking with other parents of medically complex children you learn that it is something that remains in the back of your mind. When you talk about it- it takes your breath away. I'm sure it offends some people....that may be why people don't choose to talk about it very openly.

I sure as heck don't wish to talk openly about it (so why then am I even writing about it?)

If you follow my blog then you know that last year (ironically almost exactly a year ago, as a matter of fact) I had what we've come to call...my breakdown. I lost it. I went through weeks of dizziness and faintness and trying to catch my breath until one day I finally just lost it ( I won't go into detail here again). I spent the next few weeks mostly in bed trying not to think or feel. Actually, I didn't have to try too hard - I was numb. Just a body taking up space, actually. Thankfully, I was surrounded by wonderful people who helped me get the help I needed (and ran the responsibilities of my life in the meantime).

Unfortunately, I've been running from some of those same feelings again. Paying attention to things now, I realize that I've quit going to the gym, I've rarely run in the past few weeks. I cry over nothing. I refuse to talk about my feelings and I just feel everything spinning out of control again. I'm no dummy. I know where this is headed.

You know, I do believe God places people in your path for a reason. A friend (well actually more than just her - but a few people) has realized what's coming and she has tried to get me to talk about it....to feel it - although she may not necessarily realize what "it" is.

Part of "it" is that I can't fix things. I know I'm not supposed to be able to fix everything, but as a parent you try really hard. When I can't fix things I feel like a failure. I get scared...........BUT above all that - when it comes to Zeta and I feel like 'I can't fix it' then I'm scared that she'll die. There..........I said it out loud. die. That's what I'm most afraid of....

She might die. And if she doesn't then does that mean she will live the rest of her life suffering?

When talking with a parent of another child she brought up some of the same feelings. Mind you, today was the first day we ever really conversed so I doubt she had an inkling about what my mind has been wrestling with as of late. She talked about how dreadful it is to wonder why God hasn't chosen to take her little girl to Heaven. She even said, "I know that's awful." Only, I don't think it's that awful because I've thought it too.

I have a childhood friend who just lost her sister. Prior to her death she posted on fb that she couldn't understand why God had not chosen to take her home yet (or something similar). I instantly related and I let her know that too.

You see, I've begged God to let me keep Zeta. I've pleaded and made all kinds of deals.
The flip side of that is that there have been times that I've questioned why she suffers and what kind of plan would entail such. I've made fervent pleas for him to let her have peace.

I remember doing the same thing after my nephew was born. I pleaded for God to let him live. I begged him to make Calder whole again....to erase everything and just let him live. After several days of seeing him hooked to those machines and watching my sister and my brother-in-law I began to pray that if God didn't make him well then He had to take him. There was just no way anyone could see a baby that sick and I couldn't understand why He would choose not to take him home -He died 11 days after he was born. In that time I only had a very small understanding of what my sister and her husband felt. There is no way to possibly understand the gut-wrenching emotion, heartache, and complete exhaustion you feel both mentally and physically when fighting the emotions of wanting your baby with you and wishing them no pain unless you actually experience it.

It's taboo to talk about it........

BUT there are people dealing with this kind of emotion......

and I think it's normal.

Of course you want your child. Yes you want your childI'm striking that because I'm going to speak in the first person (as a wise lady recently pointed out I should do that)

So let's start again;
Of course I want my child with me. Of course, I want Zeta to live. Do I want her well? YES! Am I ashamed of her? Absolutely not. In the same breath I can answer the following questions: Do I want her suffering to stop? YES!!!!!!!!!!! Do I ask God why He hasn't yet called her? Yes

These are some of the feelings I was dealing with before my 'breakdown' last year. Only, I refused to really deal with those feelings. I refused to let myself really feel them. I refused to admit that I was asking God to take my baby. I refused to accept that it may have been something I would actually ask for and I refused to accept that it could possibly be part of his plan.

I'm not stupid. I know death is a part of life. I know it is inevitable. I also know that we never know when and sometimes don't even know why.......but that doesn't change anything.

It's hard.

Yes, it's hard - but since I've talked about it (or rather written about it) I'm able to feel more at peace about it. I've left it all here on the paper (or the computer, I suppose) for now and when I'm ready to feel it again I can come back and read just how raw and exposed this emotion really is.

Please don't run to talk with our parents or grandparents about this. My parents read my blog and they are fully aware of what I deal with every day. This is my story and I certainly don't wish for them to have to revel in it or fear someone questioning them about it. The same goes for my grandmothers. They don't do the internet so I'm assuming they don't read my blog although they've heard about it. I'm not saying this out of fear or anything really - I'm just saying that since we've covered the fact that this is not something that is widely acceptable to talk about I'd really rather protect them. I know it's hard for them (my parents) to even read my blog sometimes and wonder why I would choose to share such intimate details of our lives. Believe you me - it's mostly for my benefit....a cleansing of such, I suppose.......but part of it lies in the fact that some people are dealing with similar issues and some people are lost. Some people don't have people to love them the way we are fortunate to have.....and some people don't have God....they just don't believe........that's something I'm hoping we can help change....I know our life -Zeta's life is not in vain....I know there is a purpose, a plan to all of it and I hold onto my faith and my hope!