Wednesday, April 26, 2006

My Broken Heart

I know sharing is therapeutic and so healing so I really need to share. My friend emailed me tonight and it reminded me of that. I struggled with sharing this and I am not sure why, but I know how many prayer warriors are on this email list and prayers are needed right now.

This morning I received a phone call telling me that Papa Ray had died. Those of you that know Papa Ray know what a very special man he was. Most of you have heard me talk about him. He was and always will be our Santa Claus.

He had such a loving heart. He reminded me much of my daddy. He gave incredibly real hugs like my daddy.

Mary Elizabeth has seen him and had her picture made with him forever. I have an amazing picture of him with her. The love he had for her will never be replaced.

I still remember the tears coming to his eyes as my mama told him Michala was diagnosed with cancer and was having her leg amputated the next week. He took Michala from me, he held her, hugged, kissed and loved her.

Last year as Marlee Anne ran up to see him I remember having an unreal joy. Kinda that joy you feel the first time you see your child walk. Instead of telling him what she wanted for Christmas she told him what her sisters wanted. He was so proud of her and had to keep asking her what she wanted. After telling him what granmama wanted he finally told him what she wanted for herself. Of course she got it too.

I went through the motions of today stopping only briefly to let thoughts of him creep in. I wanted not to think about it. Not to think it was real. Reading my friends email made it real. I saw it. I read it.

Someone told me today that the grief here on earth is so great but the joy in Heaven is so much greater. I can only imagine how great it was when Papa Ray got to Heaven. He is singing his huge heart out. What a lovely man he was. I am sad he is gone. I don't understand it. In my selfishness I wish for him back. Saying he is better off doesn't make this any easier.

For the past few days Marlee Anne has been talking about Heaven so much. The other night after Mary Elizabeth had such a rough night and very long day Mike came in and told me to go to bed. I didn't hesitate. As I was lying there Marlee Anne came in and said she had to call my daddy. I asked her what my daddy's name was. She sometimes confuses Mike as being my daddy since he is her daddy. Well she said Ging. This is what all the grandchildren called him. He has been gone for 19 years so Marlee Anne only knows him from stories we have told her and some pictures. I asked her where Ging was and she said in Heaven. I asked her why she needed to call him and she said I have to tell him you need him. She went on to call him on her play phone and told what she and I needed.

Throughout the next day she asked if all kinds of things would be in Heaven. Then she started asking about certain people being in Heaven. Then she went on to start asking everyone that called if they were going to Heaven. We have a 3 year old Evangelist.

She asked how we get to Heaven. I didn't know why she was saying all these things. Now I think I do. I needed to be reminded of Heaven. Today I needed the reassurance that Papa Ray was in a better place. That we all have a better place to go to one day.

Thanks for letting me ramble and share my heart. Please keep Papa Ray's family and friends in your prayers. This is going to be a really hard time on our little town.

Thursday, April 13, 2006

The Lighthouse day 2

I woke up this morning to the sound of waves crashing. What a peaceful sound. It just reconfirmed that this wasn't a dream. Well actually it was a dream come true. It was windy so we decided to keep Mary Elizabeth in. Marlee Anne was still sleeping too so we left her. Our family partners stayed with them. Mike and I got ourselves and Michala dressed and headed for the beach.

It was called Morning Watch. We were exactly sure what took place during this time, but we were together on the beach, the sun coming up, waves crashing, beautiful sand and water, and their was a guitar in sight so it was sure to be something good.

I was right! We praised God and sang and worshipped. What a very special time. Truly a wonderful way to start the day.

We took Michala back up to the house, check on the other two. Mary Elizabeth was awake and Marlee Anne was still sleeping. Our FPs (Family Partners) told us to go ahead and go to Common Grounds. We had a wonderful breakfast there. It was breakfast casserole, fruit, juice and coffee. Eric led us this morning. He asked us to go around the room and share our stories about when our child was diagnosed with cancer. Never before have we done this. We have shared our story with friends and family or people that wanted to hear about it. Not with this amount of detail. Usually it's just touches the surface.

I have been trying to think of a way to explain what this was like. Not sure this will work but let's try it. Take your fist and ball it up. I have always heard that's the size of your heart. OK pretend it's been hurt, damaged, broken or shattered into pieces. Now gather up the pieces. Put them back together the best way you know how. Some want fit. They probably seem like they don't even belong to your heart. Some may seem like they are missing. It's a mess isn't it? Remember YOU put it back together yourself. OK it's not going to stay together without something holding it. Take some tape, bandages or whatever you have handy. Remember it's a mess and you don't want anyone to see it in that shape. Cover it up. Wrap it good and tight so nothing happens to it. You don't want it to break or fall apart any more.

Now someone has heard about your broken heart. They ask how you are doing. What happened? You start to share about it. You think hey that wasn't too bad. Pretty soon you have a canned speech. One that you can use anytime anyone ask. Soon you get so good at sharing it you don't even cry. Your heart is being healed right? Well so I thought.

We listen to 3 other families before us. I am really doing good. I am actually shocked at the things I hear. Things I have felt but never admitted. I never knew there were other people out there that felt the same way. Mike shares first. WOW! I have been married to him how long? Almost 20 years. It has been 8 years since Michala was diagnosed. Some days we didn't even mention cancer or the fact that her leg was amputated. We have discussed our feelings though. On the surface? Maybe! I never knew he thought these things or had these feelings. He is my rock! None of what he said made him weak. It made him just the opposite. Stronger than I ever knew. Even though he felt these things he was the one who kept the faith. Some days at the hospital I really disliked him. He would hold his bible in his lap, he would pray and I would think HOW are you doing that. God allowed this to happen to our baby. I couldn't pray. I had to depend on others to do it for me. My prayers didn't seem to even reach the ceiling. What was going on? How could God leave me during a time like this.

Well it was my time to speak. Let me step back a minute. While Mike was talking the tears were flowing I had to get up and get a box of tissue. I should keep them with me all the time. OK so my turn. One thing I want to say is that I cannot thank the dad sitting beside Mike enough. Mike had a tough time sharing. Instead of stopping he kept going. Mike (another dad) was sitting beside him. He put his arm around Mike's shoulder and said it's alright, take your time. Something small. Maybe so but to us it was huge! One of those God things.

So it's my turn now. I honestly don't remember what I said. I do remember not sharing my nightmares of God chopping Michala's leg off with an ax. Morbid? Maybe but those were my nightmares for weeks and weeks. This is when I realized the short time we were there wasn't enough. If we had been there longer I would have shared that. I would have become that healing too. All I know is that whatever I shared wasn't easy. I did admit like many others that friends walked out, family walked out. I mean they didn't leave town but they went on with their lives. Audra said they weren't in it for the marathon. Those are words I will remember forever!!! This is not something that goes away. We are marked forever.

As I was sharing it was really painful. WHY? It had never been painful before. Wasn't this my same canned speech? I really don't know. All I know is that as I was sharing I felt that tape, that glue that I used to put my heart back together was being pulled off. These families were seeing my broken heart. They didn't gasp as if in shock or fear. Some of them cried. Some of them shook their head as if they agreed. They understood. It was OK. I could share all this with them.

After this was over I was exhausted! I knew something had happened there that day that needed to happen a long time ago. I will be forever grateful to Eric for starting the edge of that tape coming up. I will be forever grateful to the Char and Ed, Buck and Eleanor and the other families for helping to peel that tape away.

As we were walking down to our house Mike's cell phone clicked. It was Keith. Just to hear his voice made me cry. I needed to talk to Kim. I needed to tell her what just happened. I tried to tell Keith but all I did was cry. I couldn't get the words out.

We got to the house and everyone was playing and having the best time. I have it!!! It just hit me. I wanted to give ya'll a picture of house this went. OK you know how a potter takes a lump of clay. They beat it and mold it until it's soft enough to make something beautiful out of it. Well at Common Grounds God used the families and volunteers to beat the clay, to soften it. Then our FPs molded it. To walk in and see our sweet angels with the new angels added to our family was amazing.

It was time for beach olympics. We all went down together. Durwood sat with Michala and played in the sand. Judi sat with Mary Elizabeth and I under the beach umbrella. We had a very special time getting to know each other better. It's strange though because it's like we had known them forever but yet we didn't. Sally, Eric, Mike and Marlee Anne all played in the olympics. That was quite a sight. It was so much fun to see them running and hearing their laughs.

It was really windy and Mary Elizabeth had started wheezing so Judi and I took her back to the house for a breathing treatments. It was just what she needed. In just a few minutes she was smiling.

When beach Olympics was over we all went over for lunch. We had Chikfila sandwiches, nuggets, cole slaw, tea and lemonade. It was so good! Hayden fed Mary Elizabeth while Durwood fed Michala. I am telling you it's a really weird sensation to sit at a table and eat with both hands free. This was such a special time for us to get to visit with the other families and volunteers.

Spa time!!! Mike and our FPs had the girls while myself and all the other moms headed for the spa. I know they painted my nails and toenails because I saw the pink when I woke up. I know I got a massage because I was terribly relax. I slept the entire time. I did hear lots of voices. It was all those women in that room talking. I did wake up in time to hear Char's wonderful devotion she wrote especially for us. I will get my cards and share them with ya'll.

It was time to head to the house and get ready for our date. We were going on a dinner cruise. Just me and Mike. Well the other parents and some volunteers but not my girls. I wasn't nervous. Maybe a little but I mean just a little. Pam (the nurse) came over and wrote down all the girls meds. I was very confident and at peace with Pam and our FPs.

The dinner cruise was AMAZING!!! It was absolutely beautiful! I have never done anything like that before. The food was delicious. The entertainment was out of this world. We got to spend time with the other parents and some volunteers. We even danced. I know I know ya'll are shocked. But yes Mike danced with me. Only because his special friend Eleanor encouraged him. He said he wants and Eleanor in his life. I said yes I do to. She is one of the most encouraging and uplifting people I have ever met.

I have to say when it was time to leave I was anxious to get back to the girls. They had a wonderful time though. It was funny because we had told our FPs that Michala would go to sleep after her meds and would sleep about 2 hrs. unless Mary Elizabeth woke her up. Mary Elizabeth wouldn't go to sleep until Michala was awake and she would get real loud trying to wake her up. Well Michala slept 45 minutes for them. They didn't have any problems with any of the girls except for Marlee Anne not wanting to go to sleep before we got back.

After they left I told Mike to go get some sleep and I would stay up with Michala. Durwood and Eric had discovered that Michala loved the swing on our screened in back porch so off we went. She didn't cry or fuss. Well except for when I would fall asleep and stop swinging. I was so tired! Finally at 3:30 I went and woke Mike up and told him I couldn't stay awake any longer. We were concerned that the girls would wake up everyone in the house. Everyone said they couldn't hear them. I hope not!

Wednesday, April 12, 2006

The Lighthouse day 1

OK ya'll please bare with me on this. I know I tend to ramble. I have prayed about writing this and have really struggled because I want it to be perfect. I don't write something then read it again and make corrections. Please overlook the typos but I really want this to come straight from my heart.

Lighthouse - A source of guidance or inspiration. I have always loved Lighthouses. Last week I was asked what was my favorite vacation. I loved going on vacations when I was little. Our family would load up in our car early early in the morning and my daddy would drive us all the way to the beach. That wasn't my answer last week though. Last week my answer was before cancer. Before Michala was diagnosed with cancer, when we were in Boston before her surgery, we drove up the coast to Maine. That's where my answer ended. Later on I thought about that beautiful Lighthouse I got to see on the hill by the water, the waves hitting against the rocks. The Lighthouse stood tall and strong. Never bothered by the crashing waves. Last week we had the privilege to be housed in a Lighthouse. No it wasn't a physical lighthouse. It was much more than that. It was a lighthouse created my hearts and souls. It was created by people. These were not any people. These were volunteers. Volunteers that gave of their time, their family, their money, their hearts and their souls. These people were our lighthouse.

For several years now friends of ours have been telling us to go to The Lighthouse. They would describe it and immediately my body would shut down. I wasn't ready. I knew it had to be something I was ready for.

I had no idea what to expect except for what I read on the website and what our friends had told us. Still no one could have told me what we were going to experience. There is no way I could have ever dreamed this. That's why I am afraid I will never get across what this meant to us. My words will not be able to paint this picture clear enough. Words cannot convey the vivid colors, the peace, the love or any of the things we experienced. Think of your most perfect day, your most wonderful vacation, your most special memory. Now put all those together and multiply them 100 times. Now you are coming close but you are still not there.

Well let's get started. We had a nice drive down there. The girls and I slept while Mike drove. Good thing because there is NOTHING between here and Santa Rosa beach. Oh did I leave that out? Yes it was on the beach. Wait it gets better!

We get there and as with anything new we really didn't know what to do. We knew where to go because there were signs every where. We pulled up and immediately we felt welcomed. Trish came up and hugged me. It was one of those real hugs. You know the kind. The kind that made me know right away we were in the right place, we were supposed to be here and at least I knew Trish was glad we were there. All of a sudden there are all these people around us. Not sure how many but lots. They were our family partners. At this point I am still not sure what they are going to do for us but I knew we were partners. Names were flying and I felt like I needed a note pad to take all this down. DONE! That was already taken care of. On a sheet of paper, which since I have lost, everything was typed out perfectly. Just to warn you this happened all week. All you had to do was think of something and it happened. Seriously! I am telling you this was definitely a God thing. No doubt about it.

Let me got back a minute. As we drove up we oohed and aahed because it was so beautiful. Right on the beach. Sand perfect! Weather perfect! Houses perfect!

So as I was standing there at registration I hear a voice I know. It was Jim Mac. He and his wife Kim have become dear to us. I was so relieved that they were there. You know comfort in knowing someone. I didn't realize I really did not need that this week cause in just a few minutes these strangers called our family partners were going to quickly become like family. After I hug Jim Mac and everyone laughs as we joke about not knowing each other Melanie comes up and we hug too. No I don't know Melanie. This is just something you do here I suppose. Of course I am a hugger so I love this.

While I am checking in Mike, the girls and our family partners go up to our house and get us unloaded. Everything is done by the time I get up to the house. I mean everything. They had already taken down a bed in one of our bedrooms to put the girls mat and blankets down.

It's time for lunch so we all walk down to lunch together. This is where things get blurry. Ya'll know that for 13 years my hands have been on Mary Elizabeth, pushing her wheelchair, carrying her, changing her diaper or feeding her. Well that changed. I don't really know when exactly. It wasn't a struggle. Nothing mayor. They didn't have to pry my hands off her wheelchair. Just a smooth transition. Instead of me losing my breath and struggling to breath, I took a deep breath and things became clear. I was me. I mean I was still wife and mommie but I was me. There was a me there. Not until then did I realize that that me was missing? This part is very hard for me to explain. Here was someone helping us, doing things for us, not because we asked, not because I broke down and cried and they felt sorry for me, but because they wanted to. This was not something that anybody made them do. They actually paid money or raised money to come and help us. They wanted to do this. OK I am still not over that part yet.

So as I ate there was someone getting Mary Elizabeth and Michala some mac & cheese. They said they would get mashed potatoes for them later. There was even yogurt there. Applesauce too. There was someone walking them around. Someone playing with Marlee Anne. OK I am already overwhelmed (in a good way!) with all this when Mike says look they even have a flip flop holder. You have to be there I guess but this is still so hilarious to me. It's so true! I mean they thought of everything! This beautiful girl walks up holding Marlee Anne's flip flops for her because she is playing in the sand. I even have a picture to prove it.

Next we have the opening. We learn The Lighthouse song which we haven't stopped singing yet. We meet MELINDA! I am still in awe over her. Would I have ever thought of this? No probably not! All I know is that I am so very glad that she did. This is one amazing person. Ever just meet someone that is so very humble but you know right away you are in the presence of God. That's Melinda! She has the most giving and genuine heart of anyone I have ever met.

Time for teams for beach olympics. Sounds like lots of fun. Good thing we are on the red team so that Mike's face matches it. He got embarrassed too many times for me to be able to name. We met our team members, made our flag, made up our cheer, performed it and then we were done.

Time for orientation for the parents. My daughters, my babies were going to be with people I had just met for the first time. I held Mike's hand and we walked to the other house without looking back. We told our family partners about the girls but that was throughout the past few hours. It wasn't something we sat down and had a meeting about. It was all so very comfortable. So very perfect! By the way our family partners do have names. I will introduce them to ya'll soon. For now let's call them our FPs. How's that?

We went into Common Grounds which is what our time with the other parents was called. We had two sets of counselors along with a dad. They liked to call themselves our chaperones. HA! As Eric began to welcome us and share his story I immediately knew he was one very special man. You know there are people you just long to hear more from. People who are uplifting as they share their stories. Then there was Ed and Char. Quiet and very peaceful spirits. Buck and Eleanor. We had heard about them. Mike had the opportunity to talk to Eleanor on the phone a couple of weeks back. Before the week was over Mike was wishing for an Eleanor in his life. Someone for me to strive to be like. We decide we could put up encouraging notes and posters all through the house. I do think he's an awesome man. I have told him that before. I guess once is not enough. Eleanor has to be one of the most uplifting people we had ever met. Buck was just fun in every way. I could not imagine anyone feeling uncomfortable around him. Me being the one that can talk to a brick wall had no problems with anyone. Mike was definitely at ease and had no trouble talking with Buck and Eleanor. Another God thing! You will quickly see this week was filled with God things.

We all introduced ourselves and our families. OH I forgot. At lunch a lady came up to me and said Kelli, I am Jane. Well about a month ago a friend introduced me by email to another mom that is doing a fundraising crop for Juvenile Diabetes. That mom, Tina said I know a family whose son has the same type of cancer as Michala. I was thinking wow because we have only met one other family whose child had the same type of cancer. The mom emails me and it's not the same type of cancer but a funny thing is that when I went to her son's website a picture of Michala was on the website. Well there she was at The Lighthouse. What a coincidence. LOL!!! I was so excited to meet her and her family. What a blessing!

So anyway back to Common Grounds. I am doing real good. We have been there at The Lighthouse for a few hours and I have not cried once. Real good for me ya'll know. Well they show a video to help us learn more about The Lighthouse (LH) and the tears flow. Well that was it. I was done! As parents shared more tears flowed. Lots of those tears were because I was still in shock and awe that we were there with these other families being showered with love.

That night we were having a luau. We went back to our house to get ready. Marlee Anne was briefly excited to see us. I think Mary Elizabeth was a little excited but Michala couldn't probably have cared any less. She was thrilled to have that one on one attention. I think the only time she sat down the entire weekend was when our FPs went back to their house, or when one of them was swinging with Michala in the swing on our back porch, while listening to the waves and seeing the beautiful beach.

It was really windy so we all decided Mary Elizabeth would stay in. Of course our family had increased in size by 7 more people so 4 of them were deciding who was going to get to stay. Not who would get stuck with staying but who would have the privilege of staying with our angel. That's truly how they felt.

Once that was decided the rest of us headed down to the beach. It was decorated wonderfully! The music was great! It's funny to me that when I look back and when we met some of these people for the first time you never knew what impact they would have on your lives in such a short amount of time.

The food was great! Hawaiian chicken, rice, fruit and a fabulous bean salsa stuff. I will have to share that recipe with ya'll. Lots of the food for the week was donated. Most of it by Chikfila. Pizza one night by Pizza Hut.

Michala was served her special mashed potatoes and mac & cheese. Of course after eating that she wanted some of our food. Once she got full off she went. Our FPs walked her and walked her. After we ate it was getting time for the girls meds so I took Michala back up to the house while Mike and Marlee Anne stayed down at the beach to enjoy the rest of the luau and dance.

Earlier in the day we got to meet the other two families leaving in the house with us. It was a huge house so we usually just saw each other in passing. It was nice when our paths crossed long enough to really visit with each other. No coffee in our house so Tom went over and got us some. After a wonderful cup of coffee and good nights to everyone I was left with my head full of thoughts and my heart even fuller. I laid in bed in awe over the day, anxious for what tomorrow would bring.

I will leave ya'll with that much for now. If you got this far thanks. Thanks for sharing this very special memory with us.

Tuesday, April 04, 2006

Why that title?

Well here goes! After much encouragement from my sister friend Cyndi here it is. My Blog! I have really tried hard to resist creating one of these. Mainly because of time. I am terribly behind on updating our website and I really really need to do that. Instead I am adding something else to my life.

In Cyndi's defense though I do journal every night and I send emails out quite often updating our life. So this will be a great way to keep up with all those thoughts and feelings that one day will be part of my book. That's where the title of my blog came from.

No Matter What Happens. One of my best friends in high school had a gospel group with his two brothers. My favorite song that they sang was titled No Matter What Happens. Here are some words to that song.

No matter what happens,
no matter what trials I must face
I will constantly speak of His glory and grace

That song has gotten me through so much. I hope that I will forever be able to say no matter what happens. I look forward to sharing my life, our life, my thoughts and our journey with you.