Looking for a new normal

Warning: The next sentence is a little rough.....

Normalcy?..........Screw that - my baby is dead!

I typically don't think in this fashion or with that type of language. 'Screw' and 'dead' are not typically two of my favorite words. As a matter of fact, just reading the sentence above is making me cringe to the point where I want delete it and hide those feelings from the world....but part of what I have vowed to do is share how I feel in order to help others. If I continually try to make it seem as if everything is always perfect then my blog does not serve its purpose.

However, my life over the past couple of months has been anything but typical or perfect.

I've had some pretty intense moments this week. I'm fighting to figure out exactly what IT is that I should be doing with myself. I get angry at myself because I can't seem to get motivated to do much of anything. I don't want to clean, I don't want to cook, I don't want to exercise, I don't want to run, I don't want to think about work........Well, hmmm...I don't think it is even that I DON'T WANT to do any of these things - fact is, I truly DO WANT to, but I'm having trouble........ I think that's why I get so angry with myself. I WANT to get to a new normal, but it seems as if I'm just avoiding it for some reason or that I just can't figure out exactly what the normal should be.

The things I find myself focusing most on are the children and families around us that are struggling with illness. I want more than anything to help these families. I know, for a fact how supportive the world can be.....I want to bottle up all the love and support that we've been shown and pass it around to every single person in need - especially the kids.

I find myself focusing on the pediatric palliative care movement. On the hope that it expands to be available to children, like Zeta, immediately after birth (or diagnosis)....that it fully encompasses medical care, therapies, and family support.
I find myself full of ideas and a lot of want for the future of Team Zeta - the legacy of our small community....a legacy of love.....a legacy of the labors of God...Zeta's legacy! Although we've made progress with some ideas (and I know it takes time) I still want it all done NOW and right now it is stll mostly just ideas!

I told someone the other day, "I have all these neat little boxes in my head of how things SHOULD be. I SHOULD already have a plan for where I will be in life next week, next month, or definitely at least next year. I NEED to know - does that entail me applying for a job, applying to school.....or what???? I NEED a concrete plan. I NEED to know what I'm supposed to do." Thing is, does this mean I haven't learned a single thing over the past few years? Yes, it's wonderful to have a plan.....and it is the responsible thing to do......but do MY plans always match my purpose in life? As much as I try to put things in the boxes does it always work out that way? Haven't I learned to be patient.....and pray........and be still and wait? I know everything will be taken care of. I know that the plan for my life will be clearly revealed - just as it always has........

I don't mean to sound as if everyday my life is this awful struggle. As a matter of fact, I've been adapting fairly well......but the moments still come. The sadness, the anger, the questions, the guilt and the confusion. From what I understand this is normal and will continue to be a part of my life. I do have happiness. I am surrounded by a great deal of care and love and I do have at least a little direction in my life - but there is still that struggle of some days waking up and wondering - is today going to be a good day - or am I just going to have to pretend that it is........OR am I just going to LET myself grieve a little. Sometimes it is a constant battle...........then again - other days seem almost......well, just a little normal.

Understanding grief

What is grief?

What is grief, or more importantly – how SHOULD we grieve? What is the PROPER way?
Well, the short answer is there is no answer. There isn’t a proper way. Trust me, I’ve studied this in my days as an educator and have definitely experienced and studied in a whole new way (personally) in the past few years. I’m actually reading three books on the topic right now!

I think the most understandable way I could grieve right now would be to lock myself in a room, crawl under the covers and spend the next month or so crying….then throw myself back into teaching or counseling and move on……..that is what most people expect or how we idyllically understand grief. One should lose control, cry and then get over it.

Only……….that’s not how it works.

Trust me, I know.

There has been a lot of study about the stages of grief……An accepted idea that a person must go through 5 stages of grieving before they can be whole again. In theory, it makes perfect sense. Even in real life we experience and touch on the various stages – but in real life, does every person experience grief the same way?
Do we all respond the same to grief? Is there something wrong with us if we don’t grieve the way society thinks we should?

Look around. There is definitely no question that we all experience grief differently. Right now, I’m thinking of someone I know that lost her husband at a young age. She feels like she had the anger stage down quite well……but in a number of other instances she has told me that she feels like she hasn’t really ever grieved or that she doesn’t really know how……..

Is it a double standard that we hold others (or ourselves) to? When someone else is grieving should they magically walk through those 5 stages and come out on the other end ok? If that’s the case then how long should each stage last and who decides when it’s time to move to the next stage? When is it time that you are finally alright, according to public view? The double-standard comes in when YOU are the one who actually experiences the grief……because it is at that time that you are CONVINCED that no one has ever experienced grief like this – that no one could possibly understand……….that no one knows what your life has been like or IS like every day (and that is the truest truth – EVER – because NO ONE has had this same exact experience – nor do they understand every step of your journey. …..it is at this time that you listen to your feelings…..or try to run away from them……..and you understand grief……the dark, ugly, questioning, double-guessing, wondering, loneness – the feeling, at times, that you are all alone and no one else in this world could possibly understand. The times when you look at how you are reacting and wonder, “Am I normal?” The times when you wonder, “What does everybody else think?” “How am I going to keep holding it together?” “Will the pain come?” “Does the pain stop?”
Yes, our reactions to grief or varied and can change by the day - or by the second. One minute we can feel good about how we’re coping, the next we’re questioning and then we might even get confirmation that maybe the way we’re coping isn’t what is expected.

Some people fight, some withdraw, some conform. I think most of us do it ALL at some point. Some experience grief with grace and dignity and some constantly battle the demons within. I think anyone who experiences grief is on a mission to find happiness – no matter what the price. In grief, there is something that is missing – something that has been lost. In my case – I grieve over the physical presence of my sweet Zeta. I also grieve my life as I once knew it. Just as from the very moment she was born, my life has been forever changed. Just as I grieved for the life I had before she was born (I enjoyed my job, time with my boys and just normal life) – now I long to have just one more day with Zeta. I miss our routines. I know it sounds strange if you have never lived this life, but this WAS my life. Apart from missing my baby- I miss my life. I find myself, once again, trying to find myself…..trying to understand exactly who I am and what my mission in life should be. For the past few years my life existed around the medical community – doctors, nurses, hospitals, therapists, insurance…..etc., etc….Now suddenly that life is completely gone. Strange, I know……..but it is what I knew and now it is gone – with my baby. Strange, that I’ve had a greater peace letting go and knowing that my sweet baby is whole and that she is well. I love imagining her sweet smiling face and just wondering what kinds of things she is doing now. Strange, that I don’t know what to do with myself. Strange, that I have that ‘save the world’ feeling in me again. Strange, that I can’t find it in my heart to do the easiest thing and just return to my life as it was before Zeta. Strange, that it isn’t that easy.

Life isn’t easy. I don’t think it was ever intended to be.

I worry.

I worry about what people think. I worry that I’m not grieving the right way. I worry that I may not choose the right plan. I worry that people might think I’m having too much fun to have lost my baby. Yes, I worry about what people think.
The alternative piece to this is that although I worry, I am usually able to rationalize my way back out of it. Yes, I need time to myself. Yes, I need time to heal. Yes, there are moral and immoral ways of coping and experiencing grief and life………..but should I spend all of my days and nights worrying about what everybody else thinks? In a word – no.

I know I have a mission ahead of me. I know that the most tremendous part of that will be paying forward all that we have received. I know that at some point the true answer for my life will be revealed. Until then I have to trust in the fact that I pray and that I have faith.

I have to trust and be thankful for opportunities that are presented and I have to remind myself that it IS ok to be happy. I have so much to be thankful for and we have been blessed beyond measure already in this lifetime.

The power lies in focusing on the positive and not the negative.

I pray I keep that faith and that maybe one day someone else in this world may be able to gain some of the same strength……we all need prayer, support and love – even when we aren’t feeling all that lovable.

Sometimes just the quiet and the stillness can do wonders, but sometimes we may need a little something more.

Zeta's crown!

So, I've been looking at this painting by Anne Marie Hebbard for about a week now. When she sent me the picture I was in complete awe. Besides the fact that the painting is beautiful, I automatically began to look for the symbolism and the parallels it brought to mind. The first thing I immediately noticed was the cross - and of course it made me think of our Savior that died for our sins so that we may have eternal life. Zeta has eternal life now. The second thing that I paid attention to was the crown. Jesus wore a crown of thorns. A mockery of his title of king, the symbolism of sin and suffering. The Z on the Team Zeta logo has always had a crown. Zeta wore a crown too- on earth her 'crown' alluded to her rite as 'our princess'. In some of her last pictures(just days before she would wear her true eternal crown) she wore an actual little crown - nothing planned, just something that was cute to put on her that day and Fran caught on camera.....the symbolism (and irony) to me is that Zeta's crown in this picture and painting also represents her past suffering and her resurrection with Jesus. Zeta's suffering was the failure of her body. The pokes, prods, and procedures. All she endured to be a part of our lives....the crown in the painting and the crown she wears now, as she laughs and bounds through heaven, represents her freedom from suffering. I learned a lot through this little baby - my baby, Zeta. All of my life I've been exposed to the Word of our Lord and I've heard the Redemption story over and over, but never has it felt more poignant and relevant than now.....Notice the vine? The symbolism of growth and life - I've sure had a lot of spiritual growth in the last 3 years! .....and the butterfly in the bottom right corner? Well, that's a whole story unto itself! Wow, what a life my baby girl lived, what a legacy for me to remember, what a blessing and what a concrete reminder Anne Marie has given us.....and ALL was made possible by Him!

Signs, signs, everywhwere are signs....

On the day Zeta went to be with Jesus, as I held her and we waited for John Mole (the funeral home director) to arrive, Steven brought in this card that had just arrived in the mail.



The front of the card simply said, "Thinking of you."........but the significance of what the inside of the card stated had a huge impact on me (even in the tremendous moment of grief we were experiencing.)

It told me - regardless of what was happening there were many people still praying on our behalf......that there were probably even some praying at that very moment who had no idea what was happening at our home during that time....it reminded me that God's timing is impeccable and that there is a purpose even in the slightest things.....

Why would anyone think to go get the mail during a time as such as we were experiencing? Why would Steven insist upon giving it to me at that moment? Did I open it or did he already open it? I just remember him handing it to me and saying, "Here Moma, you have a card. Read it!" The significance of our little family, surrounded by our parents and my grandmoma........the prayers I know we were all whispering in our hearts, but here - this external and tangible reminder that God does amazing things.......well, it's just another one of those things that I'm coming to accept as ordinary and miraculous all in the same moment!

But it doesn't stop there........

Mr. Dean and Mrs. JoAnne (the senders of the card) and their daughter Casey came to visit us this weekend.....and brought a beautiful butterfly.......

but that's not all.......

I've made it a subconscious habit to try to stay out of the house - even if that means cleaning out our HOT, OVER-PACKED, UNDER-ORGANIZED shed. That was my mission yesterday morning! I never made a habit out of keeping cards (well, at least not in a manner that would serve any purpose) before Zeta. Most times I couldn't bring myself to throw away cards, but I also had no clear method of storing them either. So, I would just stuff them in a drawer here or there (clearly, you have the picture that I am not an organizational freak by now!) On to the point..... I was wading through mounds of boxes, medical supplies, and toys and at the bottom of a pile I had finally made it through was this card:



Now, I normally don't make it a habit to read the back of cards, but I HAVE tried to make it a habit to pay attention to what's going on around me and listen! Do you see what the card says? MAY THE LORD USE THIS CARD TO LIFT YOUR SPIRIT, ENCOURAGE YOUR HEART, BUILD YOUR FAITH, AND BRIGHTEN YOUR DAY. Here I was - there the card was- and I'm sure the card was there JUST FOR ME and just like that to brighten my day and build my faith- just like it said. Now look at the front of the card:



YEP, those are BUTTERFLIES (a huge symbolic reminder of my baby girl's life), and they are JUST FOR ME!

By the way, that card was sent in 2009 as a "we're proud of you" card. What are the chances of it showing up now- nearly 4 years later...on a day when I was paying attention....when I was by myself....when I needed a bright point in my day? I tell you what, it wasn't chance at all! It was all perfectly planned that way:)

The part I'm having some trouble figuring out is how/why the significance of Mrs. JoAnne and Mr. Dean's specific part in all of this - how messages from them have shown up at the right time and in the right place........maybe because he is a preacher and they are just the sweetest family and I should point that out??

Ready for another butterfly story??

Last weekend when we were at the beach I decided I wanted a butterfly bracelet. Simple right? I mean, it's spring/summer - butterflies are everywhere- you're at the beach with trinky bracelets galore in the gift shops. There was no butterfly bracelet to be found.

We left and I didn't think much more about it.

When we took Chancelor's friend home his mom came to me with a gleam in her eye and told me that she needed to give me something....I could tell she was excited and nervous. She explained that as she was getting ready for work Friday morning she decided to put on some earrings. She also explained that she doesn't wear a lot of jewelry. As she was getting ready she started thinking about her son and said a little prayer for our safety at the beach. Then she started thinking about us. When she opened her jewelry box she found this pretty bracelet on top. She's had it for a long time and thinks that maybe her mom or grandmother gave it to her, but she has never worn it - she's not a 'jewelry person', remember? The bracelet immediately made her think of her mom (who recently died) and Zeta. She said she knew that it had to be all of them telling us that everything was ok and they were ok!



When I got home I stopped by my mom's house and was telling her the butterfly bracelet story - about how I wanted a bracelet but couldn't find one and how my friend had this moment in finding the bracelet. After I finished telling her my mom simply said, "Open that magazine" (one sitting right on the counter) On the left hand page there were lots of huge butterflies. I said something like "Awe" or something like that. Moma responded, "Now look at the other page" - It was a letter from the editor, but in the side margin was Jeremiah 29:11 ("Zeta's" verse). I don't have to explain what that means! More chills went up my spine!

Two huge surprises in one day!

How's that for coincidence?

By the way, I also just noticed when I took the picture that there are pink and green butterflies right next to each other in the pattern on the bracelet ('Zeta's colors').

Going to be a great day!!

Here we go!!!

Although I haven’t quite figured out what I want to be when I grow up (LOL) I do know that I want to spend time paying it forward and trying to give back all that has been given to our family. So, while I’m trying to determine what my paying job should be (I’m an early childhood educator and school counselor by trade although my mind babbles into medicine and legislative lobbying) –I’m also thinking about how to save the world (or at least make it a little better for someone!)

Because of the timing of Zeta’s death, a question that immediately came up was whether or not we would continue with the golf tournament in upcoming years. Without thinking, I spoke on behalf of Matthew, Heather, Jennifer and Travis (and the countless volunteers). I answered with a resounding “YES!” ……..we have a lot to pay forward and they all worked so hard to make it such a great event I saw no reason not to continue! Thing is, once I started thinking about it, I realized that they might not want to continue (I mean it has truly been a lot of work for them, I know – but they call it a labor of love!) Anyway, just because of the timing of everything it seemed to be a kind of delicate matter to approach, but when I finally had the nerve to speak to them about it (the day before the tournament and 5k) they both seemed as excited as we are and had actually been trying to find the right time to ask us the same question!

So, our mission for now is to turn Team Zeta non-profit and get that whole process going. Stevie and I can’t wait to join the efforts of the annual golf and 5k events. I also have so many ideas going in my head right now that I can’t keep up with them. I want to keep Zeta’s memory alive. I want to keep the legacy of our community and the love of God’s people running!

There are many, many things that have yet to be worked out and determined as this is all just a big ‘idea’ for the moment – but it is an idea that we plan to put into motion and expand on…….

I had a great lunch meeting with an awesome lady today and so many more ideas were generated. I really look forward to where this will lead Team Zeta (and our family)!

Please be in prayer for our new endeavor. Pray that we seek with open hearts and don’t lose sight of what is really important. Pray that we truly keep the legacy of Zeta and the love of our small town and surrounding communities first and foremost, second only to Him!

PS By all means feel free to inbox any of your ideas or suggestions! This is a whole new world for us<3

Coincidence? I think not!

Well, I finally have a decent internet connection (for the moment). Since I’ve caught up on my facebook news (and hopefully most of my email) I figured I would start with some of the news I wanted to share with all of you…..

In order to save you some reading time (we all know I get quite carried away sometimes) I will start with the most recent story and then work my way back. (Well, that’s if Alltel continues to cooperate and I’m able to post more in the upcoming days.)

This weekend Stevie and I took our boys and three of their friends to the beach. I have to say I probably looked quite a sight when I took all five of them down to the water before Stevie got there. At least three of them are all about the same size, same hair color, etc and the other two are built alike so it looked like I had my own little home-grown basketball team out there with me.

I quickly noticed a young couple and their little baby –who was crawling and walking- on the beach. The mom had the sweetest smile and the baby boy was mesmerized by all of the ‘big’ boys I had with me. While the baby played with the boys the parents asked where we were from, etc – you know typical small talk. Of course they had not ever heard of Ulmer though. They were from Chapin.

Chancelor announced that we had been on tv and was quite happy to share with our new beach friends. I quietly walked away (which was probably not the most polite thing in the world) just because I did not know how to deal with what was probably going to come up next…..I heard the mom ask why he had been on tv and I pretended like I didn’t hear. I just kept walking. I can tell our story. If you know anything about our story and you ask then I’m willing to share, but here we were with complete strangers and someone was going to tell them that Zeta died…..but it wasn’t going to be me…… for sure. I wouldn’t know how to tell them all that has happened in our lives in the past three years. I wouldn’t know where to begin. I wouldn’t want to see their faces when they gasped and said something like, “Oh no, I’m so sorry….” I just didn’t know how to deal with the whole scenario.

It wasn’t long after that the young couple packed up and left the beach. I didn’t really think much of it, but I did tell Stevie about them and for some reason the look on the mom’s face, the smile, the look……….something was just so familiar. Not like I thought I had met her before or anything, but………I don’t even know how to say it, it was just something about her……….

Well, tonight I found out why……….

I’ve been getting some random friend requests from people on facebook lately– I assume it may be because people have heard our story, or you know – people know people who know you, etc….anyway, I used to try to be pretty selective about it, but now I try to look at some mutual friends to see how we may have a connection. Anyway, I had a friend request and we had 1 mutual friend – a speech therapist. I immediately assumed that it was someone who had heard our story from the mutual friend and maybe we had something in common.

We have something in common alright.

I wasn’t prepared for the message that appeared in my inbox.

It was from the mom on the beach. I immediately got chills. We had not exchanged names, although I’m sure she learned a lot of the boys names because they were whooping and hollering the whole time……….but we……….the parents and I- didn’t have much meaningful conversation. Just that we were from Ulmer and they from Chapin….and that they had never heard of Ulmer.

So, in the message, the mom tells me that Chance shared with them that he was on the news because his sister died, but that she was in a better place now (make my heart melt why don’t you…) that, with this information and the fact that we were from Ulmer she had googled us and found us…..that, NOW GET THIS….she lost a child almost 2 years ago. That she believes in signs –

.......BUTTERFLIES being a huge sign for them too….

She told me that she did not believe it was a coincidence that we were both at Edisto and on that beach at that same time on that day…….

And you know what………..

I don’t believe it was a coincidence either!

Now, I know exactly why she seemed so familiar and I know why that sweet smile stood out in my mind so!

I just told my mom this morning that maybe some of the signs we see all around us now may be kind of losing the ‘wow’ factor – that I just expect some of it now because I know that God is talking to us, that Zeta is telling us she is all better, that there ARE such things as miracles and that nothing happens by chance………

But you know what???

Just when I think I have it all figured out and that I understand even just a little of His plan – He goes and shakes things up and keeps me on my toes!

Yes Lord, I’m still listening