I hope that everyone had a wonderful Christmas, Chanukah, or whatever you celebrate! We have been very blessed this year. My kids had probably one of the best Christmas' ever. We made some great memories with family, had some great meals, we watched a historical documentary of the birth of Christ, and just enjoyed. I hope that you & your family did, also.
For those of you that know us in "real life" or have been following the blog for the past year, you know the crazy roller coaster ride that we have been on. I know that not everyone has the same religious beliefs as me, but I truly believe that we are constantly being tested and consequently rewarded. I feel as though we are living testimony to the miracles of Jesus. Many will argue with me; while I wish that you could believe what I do, I respect your beliefs. I promise not to drone on about my love for Jesus the whole time, but I'll pray for you ;).
Last December our family was very down. It was only last October that Emily was diagnosed with the Dermatomyositis, and December brought one of several months of severe steroid swelling. The child was so swollen that her eyes couldn't open all of the way. She went from 42 pre-steroid pounds (which we rejoiced at because we couldn't get her to gain weight before) to 75lbs in about 2 months. It was shocking. This time last year, Emily was so depressed that she couldn't think of even one thing that would bring her joy. That was when I first started looking into Make A Wish. Being a systemic disease (that can attack her organs), and because so many of her medicines can have very severe side effects, she easily qualified. December also brought us a secret Santa. Despite Kevin being unemployed, we did well enough to be able to afford a decent Christmas for the kids, but then we had this huge blessing appear on our doorstep. Words couldn't express how giddy it made us. It was a bright light during a very dark time.
I think it was February that Make-A-Wish informed us that they could help Emily. This was the start of a slow change in personality for Emily. It's amazing what HOPE can do. It helped her come from deeply depressed to back to a spunky little girl. We set a date for March to meet our wish givers.
March came, and we had to post-pone the meeting with our wish givers because Kevin had to have radiation for his thyroid cancer. We had found out about it the past November (at MY doctor's appointment, without him even with me!), but he chose to put it off a couple of months because it required an iodine-free diet. He wanted to get past the holidays, but then it took months to get his thyroid levels to crash low enough to do the scans. It wasn't very funny then, but he had come home saying "I can't be within 6 feet of anyone, I have to use plastic silverware and plates and put everything aside for a week or it will raise alarms at the dump. Oh, and my half-life expires on May 21". We had originally been told all that we needed was a seperate bathroom.... It was the following week that we met Em's wish givers. They told us that they would work on her Disney wish! March was also when my mom first told me that there was "something" wrong with her, then tried to retract it because she didn't want to seek medical help.
In April we had a nice break with a Cub Scout camping trip. We needed that!!! Later in April we were told that Emily's primary wish would be granted! Oh, how exciting that was!!! I think that, in some ways, this made us worried because nothing ever goes smoothly for us. I don't know why, but there's always a crisis of some sort, so we kind of waited with baited breath. They were working on a vacation date as early as May! We couldn't believe it may be so early.
May brought Emily's Disney trip! Now, you may think, you live in Florida; why go to Disney? When faced with the ups and downs that we have been faced with, when you live too far away for a yearly pass, it just seems out of the question. Make A Wish and Give Kids the World truly made it a magical, amazingly special week that she still talks about as though it were yesterday, especially her meeting with Rapunzel. We were able to spoil the other two kids, and just try to forget all of the appointments, the problems, the finances, and just enjoy family time. And we actually had quite a bit of money left over (we had become very used to being frugal!) That made us decide to take a huge jump that we really shouldn't have, but needed to. Which led us to June & July.
In June we spontaneously put in for a scholarship from the Arthritis Foundation to go to the JA Conference in Washington DC. I wasn't going to apply this year, so I put it in late because I wanted to be considered last. After all, we had an amazing Disney trip; not everyone could say that, & also because we had gone the previous year to the conference, but only Emily & I. I found out the week that we were helping at Cub Scout camp that we won a scholarship! That meant that we could afford to drive up and have all of the family go. I didn't want it to be just Emily & I again. We were very excited! This is how we spent the rest of the MAW money. This month also brought a speeding ticket that I deserved (yes, my bad.) I was totally preoccupied thinking about the dermatologist appointment that we were heading to for Zach. His psoriasis had been beyond-our-control-persistent. The doctor gave him injections which didn't really help, and more creams. I was really starting to feel frustration at this point because it was really taking over him.
In July Em's doctor's suggested adding a new medicine to her IV infusions, and they also asked us to consider getting Emily a port to make her infusions easier. They were getting worse and worse. This brought us to the conference with a whole lot of new question to ask (and a new speeding ticket that I did NOT deserve!). All that I can say about that is there are some officers that should really be ashamed to call themselves law enforcement. The conference brought us some amazing memories. It was so cool to go and meet so many of the people that I've met on Facebook! It really felt like being with family. I'm always the shy one that doesn't know what to do around people, but this was different. We learned some great things about Rituxan that encouraged us to try it, and had the opportunity to speak to Dr. Lisa Rider, who co-wrote "the book" on Juvenile Myositis. She had her first dosage just after we got home & she noted a difference right away. We decided to go ahead with the port. While at the conference we took a jaw class because we knew nothing about jaw issues, only to find out that we would soon need that info. We detoured on the way home and spent two nights camping in the mountains. Secretly, I was hoping our house would have burnt down while we were gone so that we could go back to live in the mountains. I'd be happy living in a tent in Cades Cove. It is heaven. <3 That's where my heart lives.
One morning in August, my son walked up to me and says "Mom, my jaw is clicking & it hurts". I'm pretty sure my heart stopped. With his psoriasis being so, so bad, I had been expecting "Arthur" to rear his ugly head at some point. This led to a frantic mission, how to get him diagnosed. Doctor's often like to think that you're "just being paranoid". Let me tell you, I'm beyond paranoid. I'm in reality, & our reality is that things go wrong. However, as long as we face them head on and quickly, we can deal. It's when things drag out that they become more complicated. So, I had a lot of work to do that would certainly have been much easier to do if I had a medical degree. I really need to work on that. Somehow I almost forgot to point out that it was in August that my mother was diagnosed with colon cancer, which brought emergency surgery & a while host if new problems.
In September we were randomly chosen to have 2 tickets to a concert that I desperately wanted to go to but knew that we couldn't afford. Despite Kevin still not working, I had continued to give in faith to The JOY FM. They do a lot of good for the community, and they have been a huge blessing to me. I never thought we would get free tickets!!! Oh, I was so excited!!! I took Emily with me. She really needed a fun night out in anticipation of the port. September also brought her port placement. UGH!!! It was horrible to deal with her anxiety about it; she was so terrified, but she still wanted to do it. The procedure went fabulously, but we found as we were leaving that day that her IgG counts were down. (Immune system counts). I knew that she would be the one to have a problem, but I hoped & prayed for the best. My son came home from school with a $100 gift card for WalMart from an anonymous source the week of her surgery. <3 We had Family Camp weekend at our beloved Camp Boggy Creek this month, too. It was Rheumatic weekend, so families that weekend were all affected by arthritis in some way. One of my favorite moms happened to look at Zach's fingers and noted that they look swollen. To me, they look like Emily's- Dactyl. It's a sign of arthritis. It felt so validating to have someone else see what I saw. It got my wheels turning, and when I saw one of our rheumatologists from our group at lunch, it occurred to me that she was there as a volunteer and it couldn't hurt to ask her to look at him, right? She couldn't quite tell by the fingers, but she said even if there was no arthritis she could treat the psoriasis. She asked them to schedule him with Emily one day, but we still had to get a referral. So, I got with my pediatricians and requested a bunch of labwork in the meantime. I'm so glad I did because I had no idea that all of the tests I requested were what they wanted us to have before he was seen! So,
In October we finally were really hurting from Kevin's job loss. We had our internet & cell phones off because we just simply couldn't fit them in around other expenses. Some amazing person paid our bills. About $400 worth!!! We made a shout out that we could pay them back in the next week; Kevin had cashed in his 401K to get caught up, and we had only to wait for the check. No one came forward. God bless them!!! We desperately needed some good by then. We also expected to have Zach seen by our rheumy, but instead we spent 2 weeks between two different hospitals for a staph infection in Emily's port. We were in the hospital two & 1/2 hours away on the day of his appointment. I would have had Kevin bring him, but Kevin had just started working again!!! I knew that when the time was right, he would find the perfect job. I knew it because I had prayed that he would lose his previous job and find something that he would love. We waited patiently, faithfully. Things just fell into line, and this job does, indeed, seem perfect. We had a tumultous month, but we got through it. We had some truly amazing friend send things to keep Emily company or keep her busy. One of the nurses gave her the wrong dose of one of her meds and reacted. They thought that she had aseptic meningitis at first. Thankfully, it was just a reaction and lasted only 2 days, but that was the worst two days ever for her. It was terrible!!! She celebrated Halloween in the hospital, having some of those amazing friends send her exactly the costume that she wanted. We also had Mr. G from our elementary school call me while we were still in the hospital to ask if we needed anything done around the house. Oh boy!!! In truth, we had so much that needed to get done that I told him that I couldn't really think of anything. We really had a LOT of things that had been put on the back burner. We also had a friend send us a check because God led him to. We were able to use that to finance Christmas, which would have been pretty bitter otherwise.
In November Mr. G and one of the coaches came over to see how they could help us. I'm really not good at accepting help, but they made me realize that this was something that a whole lot of people wanted to do, and they were all pretty excited about it. I realized that sometimes by accepting help, you help other people. It's a crazy, wonderful, brilliant circle. It was so much more than "just" a little housework. I would go too long re-describing it, but check here if you missed it. When the time came, my street was taken over by vehicles from all of the volunteers that came out to help us. It was overwhelming, and beautiful. It was even more beautiful to find out how many of Emily's friends had come over and helped out! The kids all had fun (so I've been told :) and it's a wonderful way to inspire them to help. My family has all felt like a great weight has been lifted. It was truly amazing to see someone's idea come to reality in such a grande way, though I admit I was at work for most of it! Emily was home, the beginnings of a sinus infection hitting her. She's still fighting it. She's been on antibiotics since October. She won't be off of them until the middle of January. (Sigh) November also brought a solid diagnosis of Psoriatic Arthritis for Zachary. The doctor that we saw that day could feel it in his jaw. He originally said that he'd order an MRI before he felt it; then he said there's no need- it's there. He's been started on Methotrexate and Enbrel. Not something I wanted to be right about, but I've known for years that he would have it. Just knew.
And December... Our van was broken into last week. Can't forget that. It was frustrating, but it's just stuff. Otherwise, aside from the house being sick, and worrying that Emily would be in the hospital for Christmas, with her CT scan showing her sinuses totally blocked, it's been a wonderful month. (Really!!!) We've had zero time for anything. Every day off that I've had, someone has been home sick. BUT, she's home. We received a card from an anonymous source, sent to the school for us. Some wonderful, blessed stranger gave us $60. They were touched by our story in the paper. Our scout pack spoiled us. Knowing what we've been through, knowing how much Kevin helps out, yet knowing that we weren't in need!!!!!!!!, they gave us an amazing care package. Pretty much "shut up and smile". LOL!!! Do you see why the word "Counterbalance" runs through my head? I see miracles. No, not huge ones. But I can see the little ones that people don't notice. I catch little glimpses of how God works through us all. And it's beautiful.
I hope that we have better health around here for 2012, but even if it's just as crazy and stormy as this year, I'm sure that we will have plenty more rainbows and plenty of blessings to balance it all out. Happy New Year to any of you that have made it this far!!! God bless you, and thank you for all of your love, prayers & support. <3
*Edited a few time because I'm a dork and should have written all of these things down! Relying on my memory= not so good!!!
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