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!

Where are you sleep?

I do believe that ignorance is truly sometimes bliss.

Sometimes I wish I wasn't curious. I wish I was completely naive. I wish I could just let things be. I wish I could just always blindly follow doctors and just WAIT for them to tell me what to do..........but no, I just can't help myself. THEY'RE the ones who spent their lives training for this, right? They're the ones who have the experience, right? All of that is VERY TRUE......I've said this before and I'll say it again.....I grew up thinking that doctors were pretty close to God and the preacher. I mean, YOU DO WHAT THEY SAY.........because THEY KNOW.....but they don't always know.....they can't....they aren't GOD and it is very unfair for anyone to put that kind of pressure on a person. Don't get me wrong, this is MOST DEFINITELY NOT a rant of any sort because we are BLESSED BEYOND MEASURE with the most CARING AND AWESOME medical team..........this is just a fight WITH MYSELF. If I could blindly follow the doctors I would just assume everything is going to be ok. I would go to sleep faithful that tomorrow we'd wake up and there would be a new plan in place and that Zeta will be ALL BETTER in a few days. Thing is, my mind is having NONE OF THAT right now. Everyone else is asleep (exactly what I should be doing, I suppose) but NO - I feel the OVERWHELMING need to sit here and replay every past illness, every hospitalization, every trial and error we've been through. I sit and choose to research every little symptom - past and present. I even choose to start researching Chancelor's symptoms even though he is getting better. I choose to read until my head hurts. I choose to read until my eyes blur. I choose to play the what-ifs over and over in my head until there isn't room left for much of anything else. Do you know what happens when you start becoming an internet doctor???? I'm sure plenty of you have become your own internet doctor at any given point and you know that any symptom you google is eventually going to lead to cancer, death, and some rare disease. Now, add all that with the fact that you ALREADY have a child with enough rare stuff going on to write a book and just imagine what you're going to find. Internet doctor - yep, that's me. I don't think I'm showing a tremendous amount of faith in the system.

Know what? I'm not sure it's showing much faith in God either.

That's why it's a fight within myself........because I DO HAVE faith that our medical team IS doing, HAS done, and WILL CONTINUE to do what they feel will help Zeta. I sure as heck have FAITH IN GOD. How many times has He blessed us already? How many times is it written that although our earthly life is not necessarily designed with ease in mind, our HEAVENLY life IS - well, HEAVENLY and ETERNAL. Where we are now is temporary.

I don't think I've struggled with quite these same feelings since before we decided to just kind of step back and just keep Zeta 'comfortable'. I don't know where it comes from, or why. No, I take that back - I know exactly where it comes from. It comes from being a mother. It comes from falsely convincing oneself that if you KNOW enough, THINK enough, BELIEVE enough and LOVE enough that you'll find a way to FIX it or at least that EVERYTHING WILL BE ALRIGHT.. Sadly, I think it's just part of our DNA.....then again, maybe it's not so sad.....I mean, I am supposed to be my children's advocate, right? I am supposed to protect them, right? Only, I think there must be a fine line between doing all that and driving yourself absolutely mad.

I seem to ramble more when I'm lost here in this place in my head. It's like I have all this emotion to get out.....and the most constructive way I've found to deal with it is to write. I don't expect answers. I don't expect someone to tell me what I'm doing is right or wrong. I don't expect pity. Mostly, I just want to.......get it all out, I guess. I want to make sure that if anyone else ever feels like this maybe they can feel a little normal. I want to make sure that everyone knows that FAITH is what brings us through every single challenge. That I do sometimes question things, that I don't always understand, and that it is not always easy..........but.......BUT my heart, my faith rests on my SAVIOR....and I will continue to give it to Him and talk about it until I can't talk (well, write) anymore.....

more prayer

Dear Lord please help us.

The very human part of me wants to whine and cry and rant. The more rational side of me has faith and knows that the best is yet to come.

Zeta is still fighting this infection. The good news is that the bug should be susceptible to the antibiotic she is on. She is still lethargic - waking only to seizures and she is starting to swell.

Chancelor was throwing up all night. My poor baby cried to me and said, "I'm sorry, I don't know why I'm sick." Whether it's nerves, a virus, or maybe even related to this pepperoni and cheese recall(2 of his favorite foods - although the ones we have are not on the recall list), I do not know.

I just know that I hate seeing them both sick. I also feel so torn between them both and trying not to spread germs.

Thankfully, we have a super support team. Zeta's nurse is here. Hospice has been out several times. Chancelor's grandmoma is here to give him some extra TLC, and my daddy is entertaining Steven so I will be going to bed soon.

Please pray for my sweet babies. Pray that Zeta doesn't catch whatever Chancelor has. Pray for our support team. Pray for our family.

just thoughts

Ever feel like you should be doing something, but then wind up just feeling useless?? Most of the first 2 years of Zeta's life I spent praying, researching, praying and researching some more. I gained more medical knowledge than I ever desired. After her brain surgery we had some reprieve and I began to feel better about things.....but last March after her "big" post brain-op episode when she started a downward spiral of regression I felt like I had researched enough. We felt like maybe we had figured out as much as we could at that point in time. We decided that we just wanted Zeta to live her life as comfortably as possible. Remarkably, since that time Zeta has been relatively infection free - most of her issues seem to be related to neurological status. Although the episodes sometimes seem to change we felt like we've had a good grip on her patterns and we've eventually been able to gain at least decent control of things (although sometimes it seemed as if we'd never see the light at the end of the tunnel). Right now, she has an infection - a UTI at that. The first UTI she ever had nearly killed her through septic shock. Subsequent utis threatened havoc on her good kidney. Those memories rolling around in my head put me back into full-time adrenaline mode........I feel like I should be doing something, but then what can I do? (That's a rhetorical question, of course.) This isn't a rant or a pity party, believe it or not. This is just a........'what do I do with these feelings' post.


In peace I will lie down and sleep, for you alone, LORD, make me dwell in safety. Psalm 4:8

A little bump in plans...

I was reminded of a few things yesterday;

1) Don't ever say that Zeta HASN'T done something in a while - she will show you just what she CAN do - case in point? - Last week when she started sleeping a lot and doing some questionable 'new' seizure activity we talked about how when she used to have kidney issues that she would get sooo sick and we could ALWAYS tell when she had a UTI. We said, "She finally outgrew all that, because even after the surgery to correct it she still had a few." Well, guess what? She has a UTI. Totally different presentation than usual. Totally caught us off guard. Totally must have heard us talking about how we 'know' all this stuff. She just needed to keep us on our toes I guess!

2) Things can change in an instant - (Yes, I KNOW this - It still sometimes catches me way off guard though!) We know Zeta has been acting........different.........for the past week......but we just couldn't figure it out. She seemed a somewhat better when we were at the beach (which she usually does - the salt air is just in her blood), but she really started hyperventilating more when we got home. We had a scheduled appointment with her pediatrician in Walterboro and of course Zeta was 'showing out' a little more when we got there. We kind of attributed it to the fact that she likes to try to scare doctors, so we tried to get out of there as quickly as possible without getting sent to the hospital - we have hospice for all of that now. In the meantime, pulmonary had returned our call from earlier about our concern over her hyperventilating and wanted to get a blood gas - the only lab that we haven't been able to successfullly do at home.........so we headed to Charleston. We got the blood gas and literally walked out of the lab when 'someone' decided we had not had enough excitement for the day. Zeta's heartrate skyrocketed (which we've seen do before) and stayed there. Well, ya know, we're in a hospital and Zeta's acting funny - can you guess what happened next? Yep, we ended up in the ER. New residents, new doctors, different nurses (hey, it had really been a while since we'd been there) although we did see a couple of familiar faces.....but anyway, I was a little nervous because new people plus Zeta always ends up in admission. She is just not the type of liability most people feel comfortable sending home. To make a longer story short - everyone there was wonderful (which has never been uncommon at MUSC). We spent a very long time at the hospital, but ultimately were able to come home to provide IV antibiotics and fluids at home. A strong supportive home and hospital team made it happen!

3) Two big things that I realized almost immediately once we were in the ER is that throughought countelss ER and hospital admissions, we had never had either one of the boys with us. I'm pretty sure that even the times the ambulance has had to get Zeta that they've never witnessed any of the chaos or had to be the on the frontline of fear. This is ultimately due to the fact that I've always been able to call my parents at the drop of a hat and they took the boys, immediately without question. I truly, truly realized how grateful I am for that. They had some trouble accessing Zeta's port yesterday. Chancelor doesn't miss anything, so when the nurses were calmy discussing it he began to understand that it may be a real problem if we couldn't access it. He teared up and asked me, "Is this dangerous for Zeta?" There was another time he teared up and asked me, "Can Zeta die from this?" I'm not even sure what was going on at that time, but I remember looking at the fear and concern in his eyes. Please keep in mind, that at no time did I feel Zeta was in imminent danger of dying. Yes, she was (and is sick). Yes, things can always go any way with her..........but yesterday was definitely not one of those times when I felt like we had lost all control and were running out of options. It was just the first time, Chancelor had really had to see any of the initial protocal to an emergency visit. I'm thankful that neither of my boys have ever had to see more.

Keep us in your prayers today. Pray that Zeta will recover quickly and smoothly without incident. Pray that her brothers remain understanding. Pray for our family- in just dealing with life - just everyday ordinary life like everyone else. Praise Him for all of our blessings....for our loving, patient boys and all of the miracles we've seen in our lives. Praise Him for what He has done in your life!