We did good this year. We didn't go overboard and the kids are happy and enjoying the fun gifts they got instead of being overwhelmed and scatter brained with too much. We have most of it taken out and it has a spot in the toy room already. They did great with the schedule being thrown out the window and no naps. They slept long and hard last night and are refreshed and happy this morning. I don't want to go anywhere and I don't want to do much besides eventually hop in the shower and relax.
We had family here yesterday until 6:00ish and it was good. The kind of comfortability that found everyone on separate levels just enjoying a quiet conversation with eachother. Cousins played so nicely together and even geared up in all their winter stuff to enjoy some sledding behind the four wheeler. By about 5:00 I was ready to get out of my jeans. I realize that wearing scrubs for work and then coming home to sweatpants makes me very unprepared for wearing real clothes for any length of time. I suppose that the overeating and indulging over the last few days didn't do much to help that either.
I appreciated the concern and genuine heartache so many showed for our situation. Every hug and every comment just really stays on my heart and in my head. I go to them in the dark moments and replay them when I pity myself for being so alone and heartbroken. Days are getting easier. I have realized that I am not one to push ALS out of my head. I am one to ponder it and let myself cry over the reality of it whenever that may come up. It usually comes up when I drive. I listen to music in the car and I cry, not the gut wrenching pain that makes life seem impossible but the quiet, prayerful kind that reminds me that life is full of pain. I get to my destination, pull it together and smile at my patients or my coworkers. There is a constant tug on my heart and ignoring it is not the right way for me to deal with it. Sometimes talking through it works but mostly I am a private pain kind of person and writing things down or reading helps. You don't even have to mention much more than the fact that you are thinking and praying for us. My kids are huge helpers. My Alyssa is the most loving, caring little soul I know. She always tells us how much she loves her family and she reflects and vocalizes that she is so happy. At Christmas on Tuesday she had a plate of fruit and she brought it over to the table and said aloud "I am going to sit by my Mommy because I love her." In the mornings when I am home she runs into my room and snuggles with me and tells me how much she missed me while she slept. Just a small peak at her spirit. My Riley is a glass half full kind of dude. There is little that gets him down and I look to him for the reminders that life is good. He always write his name with a smiley face in the R, the dot of the I and the E. One day he didn't really put a huge smile on the little faces more of a half smile line. I asked him why and he said "because today was good, it wasn't like super exciting or super fun just good and I got in trouble a little bit." So even when the day doesn't make you do cartwheels and sing Hallelujah, it's still worth smiling about and still worth appreciating.
I go back to work on Monday part time. It's not how or why I wanted to achieve part time but it's part time. No, life will not be so easy nor perfect because I am home by 9:10. I still have 5 or so hours of hard work at a very early hour and that never includes a break. I will come home to my children who are revved up and at their peak for the day while I have already been up for 6 or more hours. I will plan to see my Mom 3-4-5 days out of every week. Although it never disappears from my mind that I am going to PT for her. I will never regret being given the gift of more time with her or my kids. At the same time I will never forget that this disease is in the shadows, quietly taking more and more until, what? I would trade working PT in for FT the rest of my life if it could just go back to last year at this time. Happily ignorant of the pain and heartache that lies ahead.
I have always been sensitive to the pain and sorrow around me. I don't watch the news because it hurts to bad to see the world highlighted and illuminated in death and anger. Just when you think that this world could not get any more broken you hear that someone shot up a kindergarten, that a very young girl killed herself, that a 3 year old child died of an enlarged heart, a baby was shaken to death. This world is looking for something. I know that one day every beating heart will face the same way, heads down, hands held up high. It is my prayer that He finds His way into your heart. I am seeing just what real faith and love is all about. I realize it is easy to believe when life is good. It is much harder to grow up and ask the hard questions and realize that we will never know the answer until we reach heaven and then we won't hardly care anymore. I know heaven is real. I know that we are going there one day. Why then does it hurt so much to think of someone I love going there sooner rather than later? I struggle with that these days. I want heaven for each of you just not anytime soon. I want you to claim that mansion that was built for you specifically. I want to sing and hug in heaven, the human side of me just selfishly wishes He would make everything easy and clean for us down here and then take us up there. It's so easy for me to believe in God. Maybe because I was raised in it, maybe because I birthed 2 children and I can't even explain the miracle that it was without having Him in the equation. Maybe because there is moments where I actually feel him carrying me through a moment where I feel so debilitated and so inadequate. I don't think it matters why but rather just that I do. I have definitely had some shaky moments with Him this year. I have questioned Him and I then conceded that I will just never understand. I think we need to keep things as basic and as black and white as we can. It's when we probe and question that we start to make up things that were never really there. God created the world in 7 days, He made man and then woman as mans perfect partner. They sinned and the world has been broken ever since. Sin was born and gets worse and more barbaric and ugly everyday. He destroyed the whole the world in the great flood because of sin. He gave very basic, very simple and straightforward rules in the 10 commandments. He then sent His Son, so He would come face to face with what we deal with everyday. He sees the brokenness and shame. The devil has an easy stronghold these days. We are swindled and sold into the gray more and more everyday. It's time to shut it all off and just listen. Be still, your heart will beat you the answers you need. And when you can't discern the message He has sent those of us around you to pick you up and reassure you that you are not alone. You were not meant to be here, your home is out there and it is eternal, sealed with grace and mercy. My favorite lyrics from The Story "I'm with You".
We could shake our fists
In times like this
When we don't understandOr we could just hold hands
Many do not know much about ALS. Most of my family and friends had to google it to see what it was. A few went above and beyond by sending my Mom notes of encouragement and hope. My SIL Sheri (I didn't ask her to include this but I hope she won't mind) sent the nicest card explaining that her Mother and my own reflect eachother so much in their selflessness and care for their children and now grandchildren. She went on to explain that she did not know much about ALS but decided to buy a book so she could get a glimpse of the future for my family. She sent the book to my Mom "Until I say Goodbye." Susan Spencer Wendel. I think it was the first time that my Mom allowed herself to really look at the future and cry in the face of it. I was happy to share tears with her over the sucky situation that is hers.
I feel so indebted to so many people. You've held me up. I wish I could be that role model of outstanding faith and hope. Instead, I'm going to need help with that. You've opened my eyes.
Jamming out to The Afters, Broken Hallelujah right now. Realizing that life is one big corn maze. We keep our eye on those we love and above. Always, always stumbling and regaining our balance.
