Tuesday, March 23, 2010

PPCD and stuff.

It's been an eventful few days. On Friday the boys, Kyle's girlfriend, and I made a trip to Denison. After lunch with friends in Plano we stopped by the cemetary to put Easter flowers and a bunny on Hannah and Billie's graves. We then went on to Denison where we got a copy of Zach's birth certificate, saw some family, looked at a car and then met all my family for dinner before heading home again. I was worn smack out and tired of my van by the time we made it home again.

Yesterday was my first day volunteering in the PPCD at Franklin. Nothing has felt "right" since Hannah passed away. Going there yesterday felt "right". I loved being with the kids and the added benefit was that I felt what I was doing honored Hannah's life. I'm definately looking forward to doing it more.

When I got home yesterday there was a box by my front door. It said "fragile" and I wasn't expecting anything so I was intrigued. The day Hannah passed away a nurse from NICU came and did a handprint. It wasn't an easy thing to do and since we didn't get it I thought it didn't work out. In that box however was the handprint. It's really quite amazing. I'm going to post a picture of it when I can get it done.

Then I got the mail and inside it was an invitation to a "we remember" ceremony at Cook's on April 25th. That is also the weekend David and I are planning on celebrating our 20th wedding anniversary. We'll celebrate our marriage and the life of our girl all together. It seems right.

Today I plan on doing some much needed cleaning around the house. Koolio is at the groomers. I have nothing planned for today. It's time to get busy and bring some order back to this house. Keep your fingers crossed for me. It's a BIG job! Love to all of you and thanks for your support and prayers!

Saturday, March 20, 2010

Native American Sweat lodge

Whew! This week is about over and I have to say that I'm pretty durn glad. Emotionally I took a huge hit. This is not the way life was supposed to go. Honestly, if I had to rate the last two months I'd have to say that this week was pretty much the worst so far.

I'm a fighter and I'm strong. I think most anyone that knows me would use those words to describe me. When faced with difficult things initially I may whine or fuss, but usually in pretty short order I move into action. I enjoy challenges. I love to win. It's impossible to approach Hannah's death the way I always have every other difficult thing that comes my way. I'm having to learn a new way. That way is not easy. It goes totally against the core of how I have approached life, yet it's the most freeing when I am able to embrace it.

A friend sent me a book right after Hannah passed away. It's called, "Waking up to this day by Paula D'arcy". It's a really great book and I'm amazed at how it speaks to where I'm at. I'm going to share a quote from it. It's rather lengthy but so worth sharing with everyone.

The Native American sweat lodge provides another way of thinking about moving the way life is moving. The lodge is one of the most recognized of all Native American ceremonies and is a traditional way of facilitating healing and purifying body, mind, and spirit. The lodge itself is a domed hut built from willow saplings or some other supple wood. Stones are heated in an exterior fire and then brought into the covered lodge and placed in a central pit that's been dug into the ground. When water is poured on the stones it creates a dense steam.

During my first lodge I was fearful of the reported heat that rises up from those stones. I knew that some persons have to leave the lodge because the intensity of heat is so great. Yet when we received our final instructions from the lodge keeper his advice to us was, "Don't resist the heat." He told us that resistance would cause our experience of the heat to worsen. Instead, he encouraged us to let go of our resistance and befriend the heat. "Welcome the heat by acknowledging it's presence," he said, "and your experience will transform."

At the time, his words were a marked departure from the way I'd always thought about things. "Don't resist," he advised. "Acknowledge what is." I'd always believed that by resisting the things I wanted to change, I would exert the greatest power. Now I was learning otherwise. Only by first acknowledging and accepting what is-including the things I cannot change, or do not want or expect to happen- do I posses the true strength to meet life. Life calls us to meet it as it is. In acknowledging what is, respect for life is implicit. When acceptance precedes doing, then the steps we take have a distinct clarity and power.

The same dynamic applies to acceptance of ourselves. Zen teacher Joko Beck reflects, "In times of confusion and depression the worst thing we can do is try to be some other way. [When] we experience ourselves as we are, not the way we think we should be...a gate opens."

So, what I'm learning is to be in the moment. It's the only thing that works well. Acceptance has always felt like giving up to me. The more I bring myself back to it though the more I realize it's the only thing I do that works. My hope is that since it works so well, I'll come back to it enough that it'll become familiar territory. That would enable me to go back to things that don't work less and less. That's my hope anyway.

I think I've rambled on enough today. Many have asked how they can help. Most have said they don't know what to say or do for me. I think if you want to help me you can remind me often "in the moment, next step, next breath Marcey". That will help me more than you know! Thanks for the support, prayers and care!

God Bless!

Sunday, March 14, 2010

It's Sunday morning. I'm trying to decide whether I can manage church or not. I want to be able to but sometimes I just can't. The evidence of my loss is felt deeply as I get up and get myself dressed and ready. Hannah loved church. She loved getting dressed and putting on her pretty dress shoes. I still haven't washed her last Sunday morning dress yet. Her tights, slip, dress and shoes are still just where I left them when I took them off her. She loved the music and she enjoyed Bro. Strawn preaching. She'd look at me all through the service and say, "amen, that's right or halelujah". I remember the last service we were in I was so aggrevated at her because she was 8 years old and wanted to stand in the pew in front of us so she could see. I told David she'd be standing in that pew until she was 25 somewhat disgustedly. Man, I wish she were here now. I wouldn't care if she wanted to stand in the pew so she could see. I'd gladly stand with my arms protectedly wrapped around her while she sang and worshipped and watched those around her do the same. I miss that girl!

Yesterday was a really great day. I had a wonderful time with my guys. We laughed so hard that I am sore today. Kyle had his SAT test in Burleson yesterday. After we picked him up we had lunch together and had plenty of time to kill before we went to the Mav's game so we stopped in Best Buy and bought some things. After that we went to the Dallas Holocast museum. We all seem to love history and especially Jewish history so it was a nice family thing to do. It's a neat place and you'll leave there feeling both sad and inspired. Sad for what happened and inspired by the spirit of the people despite their circumstances. After that we went to a Mav's game and they lost. I still loved the game. I just like basketball.

Even though I had such fun and was really enjoying my time I had moments of great sadness. I kept thinking, "God, I'm having a good time, but I'd gladly give it up for some time with my girl". It's hard to feel happy. There's a guilt that comes with a good time now. It's difficult to explain. It's not that I don't think I deserve a good time, it's just that I keep thinking that she should be here. Hannah should be here. But she's not. She'll never be here again. I just have to keep breathing and if there is laughter present I have to let myself laugh. She loved to laugh and I think she had to be smiling down at her silly daddy and brothers last night. It's just hard.

I got a letter from her metabolic geneticist yesterday. All the genetic tests they did while she was in the hospital came back normal. I cried but tried not to let it ruin the day. That means that they did not find anything wrong. That also means that her epileptologist would have given her the diagnosis of Dravet syndrome. I can't help but feel a little angry. That diagnosis was way too long in coming. It might not have changed the outcome of what happened but it would have opened up a support system that I so could have used had we had it. I do have regrets. I wish I had just let my van go back or moved in with relatives or sold everything I owned and flew her to Chicago to the specialist. I shouldn't have let my guard down. She had done better before only to blindside me with a bad episode. I just wanted to give her a break from it all. I wanted her to have a few months with no poking, hosptitals, and mats in her hair from the EEG's. She was having so much fun and enjoying everything so much. I just wanted her to have a break so bad. It's hard when I look back. If I could change the outcome, yeah, I would have gone ahead with all the poking, proding, EEG's, and hospitalizations. However, if it wouldn't have changed the outcome I wouldn't take the last few months we had with her for anything. They were so precious and wonderful. We were able to enjoy her life so fully and that wouldn't have been possible in the hospital doing tests. So, I have to believe that it was Hannah's time and hold dear those last months I had with the most precious human being I'll ever know. I have to forgive myself for whatever "neglect" it is I think I may have committed. I have to let go of what was not in my control in the first place. My heart is so very thankful for Hannah and the years I had with her. I say that in sincerity. Although I am sad I am so very thankful for the time I had with my girl.

Sorry. I did not know when I began this blogging post that it was going to be so emotional. I thought I was just going to type about my day yesterday. Thanks for your prayers and support and please continue them. I need them.

Sunday, March 07, 2010

Catching up

This blog was started in 2005 and I think posted on it a few times a year. I thought I'd use it for more of the day to day happenings.

I'm not sure where to start so I think I'll just give basic updates on everyone.

David is still at Harwood. His company has a plan to relocate but the date keeps getting pushed forward. We're hoping it happens soon as we're ready for it to be over. He had a physical after Hannah's passing and there was some "iffy" stuff discovered gastointestinally so he's having a procedure to see if everything is o.k. We're hopeful that it is.

Kyle is one busy young man. He just had a practice LD debate tournament over the weekend and has UIL district LD debate competition in a couple weeks. He also takes his SAT this Saturday. He's the secretary for NHS and the president of the chess club. It's the last few months before graduation so activities are constant. I'm sure he'd appreciate any prayers you send up on his behalf. He graduates May 28th. Two days before what would have been Hannah's 9th birthday.

Zachary is Zachary. He's our family comedian and keeps us laughing constantly. He'll finish his sophmore year. He is in band and plays the trumpet like his dad.

Koolio misses his girl and the activities of his day that came with caring for her. I've been taking him for walks and playing with him outside. Most days we go for two walks and play ball in the backyard a couple of times. Still he misses getting out and about as much as he used to. I'm going to look into taking him to the nursing home some. He is having some trouble with flea bites. We treat him every month but this will make the third time he's gotten bit despite them and had a reaction. :( I'm thankful we have him and know in time he'll adjust to being without his girl. For now we just love on each other and miss her together.

How am I? I'm breathing. I'm not hopeless but I'm incredibly sad. I miss my girl. I hate the phrase move on btw. I don't think I can ever move on but I am trying to do things with my time that will benefit me in the long run. I started attending a group last week called, "walking in this world". It's another series by Julia Cameron. Two of the women in the group were in my "Artist way" groups. I try to stay pretty busy. At first it was fairly easy because everyone wanted to go eat lunch or meet me for dinner. Then their were the weekend visits, calls, texts and cards. That's all died out so it's a little more difficult to fill the hours but I'm doing it. I'm not complaining. The outpouring of support was/is incredible. It's true though that weeks afterward when everyone has gone back to their lives is when it's the hardest. I'm blessed however, God helps me and always provides just what I need when I need it.

Amazingly the treatments I took for CFS(chronic fatigue syndrome)have really helped. Physically I feel better than I have in years. I'm so thankful.

I should go to bed. It's late. Thanks so much for all the prayer and support! I mean that from the bottom of my heart. I would not be able to make it without it. Love y'all!

Thursday, June 04, 2009

God Bless....

It's been so long since I posted to this blog. I'm so caught up in the life of my children and husband that I really do not have anything to blog about "me" wise. I am still living and I'm still learning. I think I learn something new several times a day. LOL! I miss group participation I think more than anything. I can't even tell you the value there is in a group of people from all walks of life coming together and sharing in a common experience. It's inspiring and life changing. At least it was for me. They really made me get off my rear and do some things I never thought I would.

Life's been taxing the last year. Billie's health was so declining and watching her everyday waste away was killing me. I tried everything and finally gave in to something I said I'd never do. We put her in rehab. My hope was that she'd come home but she didn't. I'm heart broken everyday over it. she gave up on life when she broke her hip. She made up her mind she was useless and would not recover and she didn't. Part of me knows that her going to Denison and having the opportunity to see friends and family she had not seen in YEARS was a good thing, but there is still this part of me that thinks had she been here with me she would still be alive. Miserable, but alive. She always did for others and it was impossible for her to let people do for her. Her worth was tied to what she could do for others and when that was taken away from her she just couldn't take it. She didn't see that every time she talked to me and listened, everytime she held Hannah and sang songs with her, everytime she made the boys or David laugh she was doing something. All of us do that. We overlook anything we feel is insignificant. It's a shame and I'm learning everyday it's a HUGE shame to pass by the little things looking for the big.

Hannah has had an incredible year. And incredibly good and an incredibly bad. Her seizues are more severe when they happen. We've nearly lost her 4 times. she's been a trooper and makes each day just what it is. I really need to study her more and she needs to pass on some of her ability to look at life moment by moment to me. She's in for a couple more months of testing and then a revamping of her meds to try and get a handle on things better. She had an awesome school year. She learned and participated in every activity thrown her way. She also got Koolio this year and that has been an endeavor. She loves her doggie and it's so cool to watch their bond form and take hold. It'll be interesting to see what the rest of the year holds for her.

The boys are teens now. Kyle will graduate next year. He's a toot and is feeling the pressure of adulthood on his heels. I think he'll do fine once he realizes it's gonna happen no matter what and wraps his head around it. He wants to be 10 again. He has a girlfriend and she's a sweetheart. I'm trying not to like her too much because you know how the teen dating thing is. Here today and gone tomorrow. LOL! Zachary is just Zachary. He doens't give me a bit of trouble. He's stable, lovable and lazy. LOL!

David is amazing. I am madly in love with this man. We had years and years of not understanding and really just not liking each other much. Now, I can't stop thinking about him. He's an incredible father. I don't know what I'd do without him. He works tirelessly for us too. I don't appreciate him enough.

I'm really at a crossroads in my life I think. My faith in God is deepening. I feel God calling me to an intimacy that I never experienced before. He wants me to see him as a Father. It's quite a discovery for me. I've always followed the rules but I feel God asking me do I love the rules or do I love Him. It's going to be interesting, I think. I'm excited.

That's all I've got today. God bless!

Monday, February 09, 2009

I'm still alive

I haven't had much time for "me" lately. Actually, it's been a long time. Hannah requires so much care and attention that I'm just kind of meshed into her. I'm not sure there even is a me anymore. I'm tired ALL THE TIME. I have NO ENERGY. I'm really struggling. It's always been a struggle but it seems since July things have just went into full nutso mode. Hannah had three status epileptus episodes that landed us in Cook Children's hospital. David's mom just kept going down hill and seemed content to sit in her chair and die. It has been emotionally taxing not to mention physically taxing.

Hannah has ALWAYS been a pleasant child. Ever since they put her on Keppra to control her seizures she's been a big blog of whine. She cries, melts down, doesn't cooperate, and is really starting to be a hand full. She has an appointment to see the epilepsy specialist in April. I'm so hoping he can help us. Keppra is known to cause behavior problems but it has done an excellent job at controlling her seizures. What do we do? Deal with and live with the behavior or risk another drug not controlling her seizures. I would give anything for one week of easy decisions or no decisions at all.

I'm really struggling in the weight department too. I just blew up after I had Hannah and have never managed to make any significant progress towards taking it off. I did last year early in the year but it was a time when I felt hopeful and since I have lost alot of that hopefulness I'm right back where I started weight wise. It's disgusting and embarassing. I want to do something about it, but I don't have the energy to even think half the time so how in the world would I ever come up with a plan and stick to it? I wish I just had someone that told me to eat this at this time and to do this at this time. I think the only way to go with people like me is personal trainer. Who can afford that?

There is so much that Hannah needs. Things that would make life easier for her. We are looking at the next 8 years of college tuition. Kyle and then Zachary. It's so overwhleming to even think about.

Last night at church a man came up to me and said, "you know the way "she"(Hannah) is, she'll go on into heaven and the only way you'll ever see her again is to make it there too." I guess I'm some awful sinner. If people knew how much I pray and how often I try to seek God's mind in all this stuff they'd stop all this ignorance about my salvation. I could have easily smacked the man, but what would that help. Nothing.

All in all, I am thankful for things. I really am. I'm thankful I still have Hannah. I'm thankful for my boys and David. I'm tired of all the trials but I'm not blaming God for any of it. I just thank him for the things I do have.

At any rate, I guess this was just a whine fest. I am so tired I don't even know where to end all this. I could go on for days if I let myself. I doubt anyone even looks at this blog anymore. LOL! That's o.k. It makes it a safe place. I'm still alive and kicking!

Tuesday, May 27, 2008

I need others....

I am going to attempt to write more than I have been. My life just seems to gain perspective when I'm writing.

Recently I've had many conversations about how I feel like I should be able to go life alone, or maybe not that I should be able to, but that I do not want people to help me. I have a hard time letting people care about me. I feel like I need to pay for people's care. That I need to repay every kindness bestowed upon me.

I do not expect those kinds of things from other people. I freely give my time, care, love, and resources. For some reason my brain just doesn't compute care being recipocal without repayment on my end. I can't grasp it.

Lately, I've had more care come my way than I will ever be able to repay. I mean it has come in buckets full, and there is no possible way that I can repay the kindness I've receieved in this lifetime. It's had me down because I want the ability to repay.

Last night we were in the livingroom and saw a broadcast of TD Jakes. He was preaching/teaching on the 5 demensions of faith. It was incredible, and spoke directly to me. The first comments I heard were about how we struggle and struggle with a situation because we want to fix it ourselves. We won't allow others to do what God moves them to do to help us. We stay proud and we miss God's provision because it's not the way we wanted it to come. I can't begin to give his comments the justice they deserve. Anyway, it pricked my heart.

I am not a let things happen person. I'm a make things happen person. Where my pride comes in is that in mind I think that if I dont' make them happen they won't or can't happen. I'm not sure how I got to that place, but it's not helping me. Somehow I have to learn to step back away from all the disappointment, hurt, and misunderstanding of my past, realize I can't do everything. I'm not supposed to do everything. That's why there are more people in the world besides me. I'm sad at how unforgiving and prideful I have found myself. I need other people. I need people to care about me, instruct me, love me, lead me. And I have to accept that the only payment I can make to them in return for what they do for me is to "pay it forward". I give what I have to give, care for those that I can care for, etc.

Man, if only I can get this stuff to sink into this thick head of mine.