Day 321

I am sitting here after Thanksgiving listening to Christmas music while we put up our tree and soaking in all the smells and the memories this season brings. I know this time of year can also bring deep seated pain to light, things you try to forget most of the year are suddenly so very real. When you are sad, or angry, or lonely those feelings seem to be amplified. If that is where you are, know it won't last forever. I would like to share a bit from my book, something my mother wrote after Ethan died.

“The Stocking Left Hanging”

Christmas Eve – 1981 – The kids are in bed, finally sleeping.  Excitement kept them up long past their bedtime.  Steve and I prepare for their awakening and Santa’s arrival.  On the rocker we put Laura’s gifts and fill her stocking.  At Twelve years old there is more clothes and less toys.  Her special gift an electric blanket will keep her feet as warm as her heart.

Betsy, 6, has toys to be taken out of boxes and set up.  A doll house, doll furniture, a “pajama gown,” if I left it up to her she would wear it the rest of the year.  Also a Bible, she is reading now.

For Seth, 5, the toys have to be put together.  Transposing instructions into reality is not as easy as A to B.  No bike this year.  Not much candy in his stocking either.

We sit on the hearth letting the fire warm our backs and burn the scrap paper, boxes and those impossible instructions.  As we sit there our eyes stray to the woodbox gate and we see one stocking still there – Ethan’s.  We break.

This was the second Christmas without him and in many ways much harder to bear than last Christmas.  Was it that we has forgotten the pain or were we still in shock that first Christmas?  Maybe we just didn’t know how much we would miss him.

Steve and I were pleased with our family 2 girls and 2 boys.  On August 6, 1980 I let Laura, 10, and Ethan, 6, ride their bikes a quarter of a mile to the neighbors.  That ride Ethan never finished.  A car coming up behind them struck and killed him.

The pain in those words is so hard to describe.  How to explain the deep black hole where your heart usually is.  How to explain to Betsy that Ethan won’t be helping her get to her kindergarten class.  To Seth why he must sleep alone in his room.  To soothe Laura’s anxiety when the children are out of her sight.  For Steve and I, to learn how to live with a broken heart.  Parts of our lives were as empty as that stocking.

How we got through grief, depression, loneliness, the emptiness, feeling that one more breath was too much, and despair is a long, loving tale – God, who gave us Christ in that first Christmas, sustained our family.  He gave us the strength to survive – the peace and joy to learn how to live again.

This was not a one time gift, as candy in a stocking soon eaten and forgotten, but one that is there when the need for it arises  That need for God comes every day – some days every second, every breath.

As I read this, my heart breaks a little, but that gift has sustained me throughout my life. Whether my pain was inflicted by someone else, some mess I got myself into, or like now an illness I have no control over, that gift is what makes life so wonderful even in the midst of pain. I have no idea how people who know nothing about Who God really is handle the horrific things life inevitably throws at them. 

Growing up, every Christmas, before we could do anything we would all pile up in my parents bed and we would read the Christmas Story from the Bible. My mother's favorite was Luke. As we grew older and had families of our own we would read the story on Christmas Eve, I think this year we will start a new tradition. I want to read the story my mother wrote of a Christmas long ago when God alone sustained our family. She will be proud to know that her little story has officially been published even if it is just in my blog. I really hope it touches you and in some way can make a difference in your life. 

This Christmas I know will be very special, and I have a feeling that big changes are coming for my family. But for now I am going to soak in every moment, enjoy my family and our life...even if it is being stuck right here on this stupid couch. 

Day 314

These words are not my own, but they come from a beautiful soul!

Hey, you! Yes, you. Don't you know how much someone loves you? Loves you enough to die, and die so you could live. So live, and live fully. And for crying out loud, smile. There's a million reasons too. Our savior, our God, is amazing. Through our weekness, he is strong, and by his stripes we are healed. Trust, hope, have faith, and above all, love. Love, love, love, with everything you have! No matter the battle, were in the winning army. No matter what, no matter how shakey life is, God is steady, and the only one who is stand strong. The savior of the whole universe, and yet, he takes the time to know us each individually. Feel our hurts and our pains, and conquer them, along with sin, and death itself. So with death gone, what does that leave us with? LIFE! Be alive, be alive, I tell you, live, for this is what He gave to us! Freely, by grace, not by out works, He saves!!! He lives!!!! Now, we can be alive too! Is that not something to be excited about? Live, laugh, and love, to the fullest! For this is our purpose, our calling, and it's enough reason for me! I am alive, therefore, I will live, because He is God, and God almighty. For the glory of your name, Jesus, forever and ever, this is my prayer, my promise, thanks for all of yours, Amen. : ) 

Day 310

It is 2am and I lie here awake again. The past several days the couch has won outright in the battle for my time. I am sore from not doing anything but I have no energy and am so ill right now. I really hope this cycle passes soon. I feel like I am about to go crazy from the clutter surrounding me and the amount of time I spend doing absolutely nothing but hurting, feeling weak and nauseated. It would almost be okay if I could just sleep through it but sleep alludes me once again. I always thought that if you have something to complain about then do something about it, I never in mylife thought I would one day, and not even when I am old, be in a position where I can do nothing and that frustrates me more than anything. I really hope this passes soon because I fear I might lose my mind. My mom would tell me I never had anything to lose and though she would say it as a joke, I was always her ditz. I know I was never stupid but I recently found out that when I was in second grade I was tested for gifted but my father wouldn't let me do it. He had a bad experience in gifted, but I had a bad experience in regular classes. I was so bored I spent most of my days in my own little world. I didn't fit in with any of the kids and I always felt like I was on the outside looking in, like I didn't belong anywhere. As a parent my mom ridiculed me for homeschooling my kids and my grandmother even made the comment that at least they would only be a year behind and so many people were so concerned about their social involvement. When my kids did go back to school they were 3 years ahead and if you know my kids they are the most social creatures you will ever meet. Noah is one of 3 underclass men in any lab and the only freshman, and not just in any lab, but a brain lab. All you parents out there, you know your kids in ways nobody else can even fathom. Trust what you know and be whatever it is you know they need. Elijah recently mentioned the desire to have a little sister or brother and I explained to him that would never happen and reminded him that he always wanted to be the baby and he wouldn't have it any other way. His reply? A lot of good that did me, you are so sick these days I don't even get to be with you. Boy did that break my heart. I don't want to miss his entire childhood, sick and useless. I pray my healing comes soon, not just for me but for my family mostly. 

Day 305

I really wanted to begin to declutter today but that is not going to happen. We were able to get through school but more than my stomach problems, my legs are severely cramping. I know that generally means my potassium is low but there is nothing I can do about it until my nurse takes my blood. The good news is that I have a migraine coming on so that pain will help me not think about my legs. Clint would always tell the kids if they were hurt that he could take a hammer to another part if their body to help them forget about the pain and just saying that helped them forget their pain. Anyway, I really need to try to rest so I will be back soon!

Day 304

Today I wanted to share with you my daily time with God. I also want to share what I wrote today in my spiritual journal which is almost always too personal and intimate to share but this one was meant to share. I hope if you don't already have a plan in place that if you like it you can use my plan. I know any writers or publishers that are reading this would tell me not to share but to have it published to share with the world for profit and there is nothing wrong with that. In fact, I may one day have it published, but for today I want to share it with all of you who wish to use it to grow closer to God. There really is no set formula or plan to follow to build your relationship with God. It is all about a relationship and if you think of it like young love, you realize it is not something you have to force yourself to do, you just simply want to spend every moment you can with your love, in this case, God. So here are the things I put together.

Daily time with God

Include:

Memory verses

5 things I am thankful for

Prayer Journal

Spiritual Journal

Listening to God

Blog entry

Encouraging notes

Strength to not eat until I can

Teaching Elijah properly including Bible

Organize: Home, Finances, Life

God bless this!

Obviously you are not going to not eat or teach Elijah, those are more personal ones that serve as reminders for me. I get my memory verse from so many different sources, sometimes after praying I just open my Bible and there it is, sometimes it comes from a sermon, sometimes it is even a whole chapter. On the 5 things I am thankful for I try not to repeat one I have already written unless it is so good it needs repeating. I have to admit it is fun to look back on my prayer journal and see how God has answered my prayers! I will leave you today with my spiritual journal entry from today. I pray that you are blessed by this and God's will is done in your lives!

 Spiritual Journal

     This is just my second day and I can already see God’s mighty hand at work. I got today’s memory verse from Kerry Shook. He was talking about dreams and went on to tell about Joseph and the stages that happen before you dream comes to reality and it looks like we are in the final stage before our dream comes. I already knew that in my heart but it is amazing how when you stay in God’s word and make time for Him every day, not only do you have a much better more productive day but you also see signs everywhere you look that God really does have this plan for you and He is going to fulfill it! That is so evident in even the memory verse He showed me today. Ephesians 3:20 LB

     “Now glory be to God, who by His mighty power at work within us is able to do far more than we would ever dare to ask or even dream of—infinitely beyond our highest prayers, desires, thoughts, or hopes.”

     That is some amazing stuff right there! I prayed years ago that if this dream was my own and not His will that He would take the desire from my heart. Not only has it stayed, but it has grown, and thrived, and flourished! I seem to get more details constantly. I haven’t been given the detail on how or when because God knows I will just try to make it happen my way and right away. Soon I will be able to share my dream but I am not supposed to just yet. I can say it is something that I haven’t found offered anywhere, that doesn't mean it doesn't exist already, just that I can’t find it. 

Day 303

I seem to be recovering nicely from my surgery. I just have to remember not to over do it otherwise nobody here will be a happy camper. I am really struggling with negativity, trying to keep it off my lips and out of my life. I began a new daily devotion program today. It is a combination of several things I have learned over the years and I don't know why I ever stopped. I am so excited because every time I implement this nothing but good things happen. It is what has given me the strength to deal with everything I have been through up to this point. I started writing it out in a notebook but quickly transferred it to my computer so I will have much easier access to it. It is interesting to look back over old spiritual journals and see the things God has done through the years. I will share my devotion program in a later entry. Right now I think we are going to to sit down as a family and watch a show. I am still pretty wiped and sore from my line insertion yesterday.

Day 298

It has been a rough day to say the least. Between the pain and nausea bombardment, the blisters on my arm where my PICC line is, the migraine, and my restless leg I just want to go to sleep, just want it all to stop. I have to admit I get so overwhelmed sometimes. It's like my whole body is screaming at me for something I have done to upset it. I really hate for my family to see the days this thing breaks me, but sometimes it just does. It is days like this that I have to remember that this too shall pass. Monday I will have surgery to have my central line replaced and get this aweful PICC line out. I am nervous because they are just using local anistetic so remember me in your prayers. My baby girl just came in and told me she can't sleep so I need to go spend some precious time with her. 

Day 297

It is the middle of the night and I lie here awake, my heart in turmoil. Many years ago when Noah and Hope were small I would be awakened in the middle of the night with Clint's sister Kim and her two amazing children weighing so heavily on my heart so I would pray over them for hours. Kim was in a bad place and at the time she didn't have her children and I wanted nothing more than to take those babies in our home and give them a safe place to land but Kim was in such a bad place that I knew she would take it as something I was doing to her not for her, but my intentions were pure. I didn't want to keep them from their mother or father or any other family members, I just wanted to give them a place they could call home. Because I couldn't do that I prayed over them daily. Our home has always been open and a safe place to land for anyone who needed it and they knew the only two rules were leave your drama at the door and don't lie. Over the years many people have joined us in our tiny home. Both of my brothers, my mother, two of Clint's sisters, and his dad, plus Hope's best friend and many of Noah's friends. One Christmas my mom, my brother, Clint's dad and one of his sisters were all here with the 5 of us and it never seemed overcrowded. My sweet niece doesn't know me very well at all, but I know her and pretty much everything she is going through, I have been through and I really hope and pray that she will allow me to share my story with her because I love her like all my nieces and nephews unconditionally. I love my kids friends the same way and look at them as if they were my children too. I haven't been able to be the mom, or wife, or daughter, or sister, or friend I used to be; the one I should be; but I will get back there and hopefully sooner rather than later. I have dealt with some pretty intense pain in my life. Some due to loved ones taken far too early, some due to people who were in pain and just wanted to hurt someone, plenty self inflicted but the strongest pain, even stronger than the constant physical pain this wretched disease inflicts, is the pain I see in the faces of everyone who loves me and can't do anything to help me. When you have such an aweful disease that allows you to slowly starve to death, the pain is not in the illness, but in knowing my loved ones get to watch it happen. I have always prayed that God would shine through me and His joy would overflow onto everyone He brought into my life. I never wanted to be a cause of pain for anyone and yet here I am. I know soon God will use my story to touch many lives and aloe me to be an advocate for rare diseases so doctors will stop mistreating people simply because they cannot understand their illness and will work together to help patients find relief of symptoms and soon after a cure for all the small, misdiagnosed, and very rare conditions. I also know God is going to allow us to be a safe place to land for many more people in the most amazing ways. I am so ready to be healed, but thank God I am willing to wait for His perfect time and His perfect way. We are at our strongest for God when we are at our weakest in life, so God, here I am, use me!!!

Day 293

I am so glad to have Noah home for the weekend! Hope is at her color guard competition and I thought she would be there all day but thank God she is on her way home now and her band director said they did better than Tuesdays competition where they got a 1. 

I am starting to get used to this PICC line now that I have extensions and don't have to do everything one handed while trying to keep sterile. I go see the surgeon Tuesday and I think he will put in a more permenant line. I know my condition has random cycles but within those cycles are bigger cycles and normally between now and Januaury is my good time of year. It is generally the only time I can eat. This year however I am worse than I have ever been which leads me to wonder that when March which begins my hardest time of the year rolls around if it just going to get worse. I am not sure if my body can handle worse than now. I do still know that God is going to heal me but I am afraid I haven't hit the low I know is coming and I know that through that there will be no dispute that God alone has healed me. I suppose I am just going through the, " Take this cup.." stage. 

I have to run my meds so for now aufedersein, au revoir, so long, I bid you adieu, and I'll catch you in the rerun!