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!

"I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go." ~ Abraham Lincoln

We know that life has a process, birth - life - death.......

We accept that we get older. We age. We die.

But, death is never easy.

It's much harder when it is sudden or unexpected.

Why do bodies fail?

Why does it sometimes seem so unfair?

Why are we sometimes given the most unimaginable decisions to make?

Someone I didn't even know died yesterday. Although I didn't know him, in some strange way I felt connected to him. It's a very hard thing to explain.

Though I don't know his family, I feel the pain in the choices they've had to make. We've had the what-if conversations about Zeta.

It's just not fair.

These are the emotions I've battled today.

But, I have faith that He is with me.....that although I have questions- He will never fail....that His promises remain true and that there is a plan for my life, for Zeta's life, for my family's lives - for your life too - if you choose to accept Salvation.

Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done. Philippians 4:6

100th post

Do you ever feel like life is more than you imagined?

Do you ever feel like life is more than you can handle?

We all feel like that somedays. I've found that having a child with medically complex issues amplifies those feelings a million times over!

On Saturday, Stevie, the boys, Zeta and I were able to get out for the Edisto Road Race and Learning through Loggerheads Festival. Like all of you, I've been to plenty of little festivals and attractions. They're fun. You see stuff, eat stuff, laugh and have a good time. Then it's over and you don't ever really think a whole lot more about it.

Well, for me the LtL festival was more than I could have imagined. I don't know, maybe it felt like we were getting a step closer to a 'normal' life or something. I mean, we did Disney recently, but to me that kind of felt like a 'make-a-wish' trip or something - you know it was a huge ordeal and worth every minute, but I kept focusing on the fact of all it took to get there and that all 5 of us may never get the opportunity to do it again, etc., etc. Edisto was much different. We were all out and doing something that a 'normal' family does. Granted, we may have looked a little less than normal. We got some stares - I mean imagine a huge black stroller packed with medical equipment and the cutest little baby girl you've ever seen - wearing her bling on her shirt with her green and pink sequined poodle pocketbook to boot.....AND the most handsome redneck and artsy intellectual boys, along with the cutest little puppy.....yes, we were quite the marvel. It seemed like everywhere we walked we had a crowd gather around us to ooh and ahh (in a good way). We got a lot of - "you sure have your hands full". To me, I took it as if God sent the welcome wagon to greet us back into the real world LOL! It felt like the 5 of us were our own little parade. The first few minutes were a little intimidating, but after a few people coming up to pet Lil' Jon (the dog) or ask about Zeta it became easier. In fact, it became kind of natural and I just relished in the fact that we were out - doing this typical family activity - ALL together. I soaked in every sight and every sound. Just the feeling of being together, enjoying the moment, enjoying each other - I just can't describe it! The feeling of hoping that we're getting closer to being able to do things like this on a regular basis - that's a feeling that can't be articulated.......a feeling of so much hope and wonder! A feeling I won't soon forget! Remember how you used to feel, as a kid, the anticipation of all the wonderful things you would get for Christmas? Now, take that feeling and multiply it times a thousand and you still don't understand the depth of how my soul feels about the day I got to spend with my family on Saturday!

Fast forward to today.

Zeta is asleep, but her monitor indicates that something still is not right. I sit and try to distract myself with cleaning, computer, and sleep that just will not come. I fluctuate between distraction, anticipation, tears and desperation as I wait for her to awake. The seizures increased a lot yesterday. She looked pretty bad last night. This morning I dare not make her stir - even to change her diaper- for fear of what might happen. As long as she is sleeping she is stable. Even if her vitals indicate that something might be a little off, at least she is not seizing. At least her breathing is even. At least it all seems controllable. What a horrible, helpless feeling. A feeling that at any minute it could.........well..........I refuse to let my mind go there. Sadness and a loss of control that is magnified by extreme fear....by the guilt of thinking that maybe our 'typical' day played a role in this terrible day.....the thoughts won't stop. I can distract myself with mundane tasks, right now I'm pretty sure I can even still put on a face to make you believe that everything is just fine..........BUT in my mind that feeling doesn't leave - the why and the what-if.........those are the feelings that I have to purposefully and very deliberately hand over to God. I don't know what to do with those feelings. They are not productive at all. They help nothing. They solve nothing, this I know.

I know I can't hold onto fear and doubt. I know that holding onto feelings like the ones I have about Saturday are what I need to keep in my heart. I know there is a plan and a purpose. I believe that.

Please continue to pray for our family. Even when things seem to be going well. We all need prayer.

I also have an unspoken, health prayer request.

To me, in this moment - I am overwhelmed and just can't figure how things could be any harder (but I KNOW that they certainly can). Pray for me to keep it together. I know that this moment seems unsurmountable (if that is even a word), but I have faith and trust that it too shall soon pass.......

Rainbows and Unicorns

Well, I promised you rainbows and unicorns in my last post - so, here we go!

Sunday's half-marathon run was truly a reflective run for me.......

I knew going into my last half-marathon that I was going to do run/walk intervals. Going into Sunday's race I decided that I would run the whole first 3 miles before taking a walk break. I made it to 3 and decided to do 5....then I started thinking about this OLD guy Jamie and his wife Pam. I met Pam and Jamie at a 5k in November, the time when I first started contemplating a half marathon. Pam told me about training for the Kiawah Half and I was hooked. She told me that Jamie was beginning training for an Ironman......that just added fuel to my fire! .......but back to my Sunday run......I thought about a recent picture I saw of Jamie finishing a half in oh, about 1.5 hours. I decided that if he could do it that FAST then I could certainly at least run most of mine! Just fyi, I made it to mile 9 point something and the cramp in my leg overcame my mindset so I added some walking intervals, but had it not been for the vision of all the people I was running for I would have probably walked a lot sooner!

I thought about Amber, and how far she has helped me come!

I thought of the two girls that were with me - Jen and Heather.....about how they had agreed to join me in this journey and how much they have been here for us during our whole journey with Zeta. I thought about what a blessing they are to our family and how God has provided so much through them and their families.

I thought about Kristina and all the early morning runs and walks she does with me and all the places I've dragged her to....Her sweet and willing manner.

I thought of Trina and her endless enthusiasm...Our family spokesperson and eternal cheerleader! She has almost literally held my hand since the day of the ultrasound that told us something might be wrong. She has worked to make sure I never retreat too far into my shell when things get tough.

I thought of David and his mom, and what they do in trying to bring smiles to the faces of sick children and their families. I was even wearing a charm that he gave me that has a picture of a runner and the words 'guardian angel protect me'.

I thought of Stevie and how God truly blessed me with someone who has remained strong and true through thick and thin. We've been friends forever, which I believe has made the ultimate difference in our relationship. There have been times there's been distance between us, but I know he always, always has my back and has loved me when I didn't feel lovable at all.

I thought about my parents and all they've sacrificed to make our lives better (I don't think they would ever admit that though). There is absolutely no way we would be able to keep it together without them! I know that I can call either of them at any hour- for anything- and there would be no hesitation in helping me with whatever I need!

There are so many, many people I thought about. I know that unless I've mentioned your name you may or may not really be interested in all I'm saying.......I could go on and on about all the people that have made an impact on our lives......we have truly been blessed beyond measure..........there is no way we could provide the life that Zeta (and our boys) deserve without the love and support that has continually surrounded us!

Toward the end of my run I noticed a man (about my parents age) that seemed to be getting discouraged. I had been watching him a while. He would walk, then run, then look at his watch, shake his head and start all over. We had less than a half a mile to go when he slowed to a walk again, looking rather discontent with himself. I grabbed his arm and told him, "We're almost there." We crossed the finish line together. What is rather ironic about that now, as I look back, is that in the back of my mind I was thinking - what if something is wrong and I've caused him to push harder than he should (you know only YOU know your body) I would feel so bad if he passes out. You know, you get these "what if" scenarios - things that you don't really think are going to happen but what would you do if they did?....what would I do, how could I help......would there be other people to help?

It is very ironic that we actually had that experience with the man (NOT the man who was running with me) who collapsed in front of my vehichle just as we were getting ready to leave.

Watching him collapse, trying to help him fight for his life, hearing the people search for family members or friends...anyone there with him........all of that playing out made everything I had reflected on during my run come around full circle.

You really never know.

You really should take every opportunity to let people know how important they are to you and you should always be looking for someone who may need you. It doesn't have to be money or any dramatic measures.....sometimes all people need to experience is a little faith in this world...sometimes people just like to know they're not alone. Sometimes we just need validation. All the time we need patience, kindess, and love!

Oh, and the man that collapsed - well I heard he was awake and talking.......I'm still 'stalking' all kinds of people on facebook to find out more.......


But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law. Gal 5:22-23
Therefore, as God's chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. Col. 3:12

life

Romans 8:28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.

Purpose.

Ever wonder what your purpose here on earth might be?

Plans.

We make lots of them, don't we?

I'll go ahead and tell you that this post is definitely not going to be as I had it mapped out in my head earlier this morning.

You see, earlier this morning my post was going to be all rainbows and unicorns.

But now, now....I don't even know how to put it into words. I witnessed some life-changing events this afternoon. Mind you, I've been up close and personal with death a few more times than I care to remember........but still, even still that feeling becomes as fresh and new and frightening and heart pumping as the first time it was ever experienced.

Two (cousins, friends, sisters...I don't even know how to address them right now?) and I ran the 1st Palmetto Bluff Half Marathon today. At the start of my run I was thinking about all the important people in my life and all of the loving and caring people that surround me and carry me through every day. So many people came to mind and I had a trait for each that I was going to share........I was also going to share some insightful feelings about running...about the adrenaline rush you get when crossing the finish line - whether you're first or last.....or even about just taking care of yourself and taking time for yourself in general......

BUT.....

but all of the rainbows and unicorns were chased away as we were getting ready to leave the race.

A man collapsed. I mean he wasn't breathing. I mean I've seen this with Zeta a million times but that doesn't change anything. I watched my grandaddy (Pop) do the same thing. It is certainly a very helpless, humbling feeling. The feeling doesn't change. Circumstances might change. The face may change, but the feeling doesn't. That helpless, powerless feeling. The moment you realize how quickly life can change. The moment when you know that YOUR plans are not the determing factor in anything...that YOUR purpose depends on where you are at the moment and how you react and what God chooses for you to do......Today, although this sweet man's plan was what I would never wish upon anyone - there was also a plan that had been mapped for a lot of the other people there too. God's timing and God's plan is never flawed. There is no explanation for how quickly help was able to be administered to this man even though the ambulance was 15 minutes away- it was all in how God had placed things. I pray for this man, for his family - his wife, his children, his friends. I pray for everyone who played a part in working to give this man a fighting chance. I pray for those who were there to witness the series of events. I pray hearts were humbled and touched. I pray that God's plan was done as he imagined.

Please, take time today to evaluate your life and those in it. Life is fragile. It can change in the blink of an eye. We are given this breath, but not promised the next. Is your life what you think it should be? Are you sure of where you will spend ETERNAL life? If the answer to either of those questions is anything other than yes then stop what you're doing and pray......even if you don't believe in God......if you're reading my blog there's at least a vague interest...it's ok to pray to a God you don't believe in....pray to have a heart that is open......a heart that is softened. I'll even pray with you. Friends, I've seen enough 'close calls' to leave my heart wide open, but yet and still witnessing what I did today was yet another wake-up call to the fragility of life. Don't spend another minute guessing!

Please continue to pray for this man and his family. I have no idea of the outcome, but I am surely going to try to find out who he is and where he is.......I hope that he is ok. I pray that God's will is or has been done.

......and tomorrow, I'll get back to what my plans were to blog about originally.....for now go hug someone you love!!

kindness

Yesterday, I received a letter in the mail that made me see RED! If you know me, you know that it usually takes a bit to make me mad.........BUT this letter had me shaking- I was so mad! It instantly made me lose faith in 'the system', government, healthcare, insurance and just about everything else at the moment. I was livid. There was a number on the bottom of the letter that I was instructed to call in case I didn't agree with the letter. Well, of course I didn't agree with the letter.........so I called. It took everything I had not to let the sweet lady on the other of the line just have it! I was mad and I wanted someone else to feel the wrath of my pain. I tried to keep calm. I tried to remember that this was not personal.....that this lady did not cause the circumstances, but I was SOOOO MAD!! After talking with the lady, I found out what I needed to do to solve the problem and was a little relieved to hear that it could be corrected..........but I was still ill. I thought, why is it that my husband works and we try to do everything 'the right way' but yet and still we seem to be punished.......or that people who play the system don't have these problems?? Forgive me, I realize I am probably not making much sense, but I'm trying to convey my feelings without actually putting all my business out in the street! Anyway, the general idea is that I was mad and I was feeling like we were being (for lack of an appropriate term) screwed! I felt like the universe was mad with me and that we would probably be much better off just giving up and giving in and becoming a statistic and living off the system................

Thankfully, I got over it.

Fast forward to today........

Some blessings are truly unexpected..........again, without putting all of our business in the street I have to tell you that our family was blessed very UNEXPECTEDLY with a bill that was paid. I mean this person did not know us very well, she did not expect anything in return......she could not have even guessed about the letter I got yesterday, but she did something out of the kindness of her heart and did it just to show that she cared!!

A lot of people talk about how they don't see kindess like this in the world anymore, but let me tell you friends, I truly believe that what you give with a happy heart is returned to you 1,000 fold. There is no reason for me to fear what the future holds. There is no reason I should ever feel 'screwed' by the universe. My GOD has blessed me time and time again.......but human as I am I am sometimes quick to forget. I can't tell you how this sweet girl's gesture today impacted the week that I've had.....Honestly, you just never know how your actions impact a person.........It can be as simple as a kind word or as great as you can imagine........but if you're giving your best you can bet that it WILL make a difference and that Someone will notice!

Be kind to someone.............you never know what a difference it will make!



PS - I hope you're reading this- Yes, it's for you.......I just told everyone without telling anyone!