Wow. Merry Christmas

Well, here it is Christmas Eve, and I came on to write about this past year, and yet I am frozen, as I read Gaz's letter. It blessed me, validated me, and encouraged me. I thank you Gary.

Who is Gary, you may ask? Well, after 6 months of no diagnosis for Jim, we were told that he has RFP, Retroperitoneal Fibrosis. Some of you may remember those days. It's a rare disease, often times debilitating, often times killing, often times stable, but always changing the lives of those who have it. There is not much info out there about it, except I did find a group where I could learn more and get support. Gary was/is the moderator of that group. From Australia, this man, reached out to help, encourage and educate me about the disease we thought my husband had. He is the one who told me to get ready for a ride of my life. He had no idea how true those words were. Anyway, Gary has this disease and helps others who have this disease, and he helps those who have had cancer and a stem cell, as you, Gary, have helped me today. YOU GET IT!!!! Thank you for sharing. I'M NOT INSANE. What I struggle with, what is real, what I feel, and think, I'm not alone. What I need is real, and what I don't get does hurt. Thanks for validating me...again, my Australian friend. I love you. We talked on the phone the other night, and Gary told me he wrote, but I haven't been on to check. I think I should have, as it has helped. If you didn't read what he wrote, check out the responses to my last post. Thanks Gary.

Christmas. Well, it's here. I don't know how to write what I am experiencing. Various days are spent in various emotional places. It's not up or down. It's more of a down or downer. And it saddens me to write this. 3 years ago, I wanted Jim's pain gone, as he spent it in the hospital. The next year, I wanted Jim to not spend another Christmas in the hospital, as we spent out Christmas at the NIH, and I had the flu. And last year, I just wanted Jim to get stronger. And this year, well, Jim almost went to the hospital the last 2 days for the pain, but he is going to wait until after the holidays. The pain is there nonetheless.

I could beat myself up for not being this happy happy joy joy person that my husband is still alive, but I think Gary explained better than me, why that is so hard. But there is some truth out there about Christmas that I have to remember and so I write this.

John 3:16. "For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life."

translated by me...God love the world. Not just some of us in it. Not just the good, not just the happy happy joy joy people, but those whose spirits are trampled and tired. It's His essence, to love. He loves because it's what he is. Anyway. He loved us that he gave his Son. He "gave." Check out the verb there. He didn't require something, but gave something. And what does he want for his gift? A gift back, right? Something like, getting our life together. Or our money and time or... Wrong. No. He wants us to believe in Him. Now, I could go into the greek and tense of these verbs and blah blah blah, but I'll keep it simple today. God loved. God gave. Some will believe. (amazing word to study) They won't perish. They will have eternal life.

So, this Christmas, it's that eternal life that gives Jim and I hope. "Hope seen is no hope. (Romans 8:24) But there is a place where sickness and loneliness and fear and brokenness does not exist. And the enemy will be cast away, and we will both be free of the things that we are not free of now.

In my heart, I am still the young lady who liked to ski, do stained glass, work at the Light of Life, volunteer, plan, have goals, dreamed, vacationed, had a bounce in her step, had fun parties, was able to give to friends, heck, even had friends, was able to meet needs, enjoyed the little things, smiled alot, and at Christmas, baked tons of cookies, shopped and decorated with zeal. And I was better at fighting off the negative thoughts, the loneliness, the lies, the hopelessness that sometimes would creep in.

So, this Christmas for me is as much about the death of Christ as it is about the birth of Christ. Both offering me the hope that I otherwise could not find, finding myself in this life that was NOT what I had planned. ;) But in this new not so normal life, while it is hard, my desire for my King, whose birth we celebrate tomorrow, is so much larger than it's ever been. And it makes me want to do. Do something for Him. Do something to deserve Him. Give something for Him. Give something to deserve Him. But I can't. I can't muster up another...anything. I am spent. emotionally, physically, financially, spiritually. I am not the person I used to be. I have nothing to offer, nothing to recommend me, but Him who lives in me. His essence is love and He gives, and He just wants me to believe, and I do Lord, I do. Come again, Lord Jesus.

My son used to have a blog called "Wait and Hope." And he signs many of his notes and such with "Wait and Hope." What wisdom from someone so young. Where did that come from? I think from pain and suffering. And so, to borrow my son's words, I am waiting and hoping.

Love the Baldauffs

NIH

Well, Jim is headed to the NIH again. Pray for safe travel for him. He is in ton of pain.

Well after looking at beds for 6 months and settling on something we never laid on, but was cheap for a foam mattress from Sam's club, we finally ordered it....12 days ago, and it's lost. And we are on hold with them. Nothing goes right anymore. I just don't get it.

I posted here a day or so ago, and it was so negative and angry that I deleted it. Well, nothing has changed except maybe my words here.

I did say I am tired of being defined by Jim's illness. He's tired of it too, but what can one do. I cry on the inside because while if that isn't bad enough, it seems that no matter what I try to do, nothing turns out. I buy a shirt, there's a whole in it. I buy paint and start to paint, and it's expired and ruins the whole project. I buy a bed, and it's...who knows. So, now we have to start all over again. I just don't get anything anymore. ???