It’s been a long time. The last real post I did was on April 10th. I did a re-posting and a simple tribute post since then, but really haven’t written anything here for a long, long time. One might think it’s because I actually have a life. Or not. Truth is that it’s a little of everything: being busy, dealing with loss (more on that in a minute), contemplation of life, not having anything to say, having too much to say and not knowing where to start and other things I can’t think of right now.

Let’s start with the good part…

I’ve been busy. Of course, there’s my job, which I still love. It’s usually 36 or more hours a week in 4 or more days. Most of the time it’s 4 days/ week, 9 or more hours a day, but I’ve been having some training classes on my days off, too. I’m exhausted at night. I’m usually in bed by 9 o’clock. I love it though, as I said, so I don’t mind. I love my co-workers. I love my patients. I have an excellent working relationship with the provider that I work with. So, it’s a good life in that respect.

Ashley got married the day before my 44th birthday, July 23. It was a nice wedding. My sisters- and brothers-in-law, my mother-in-law, my Mom, my brothers and my nieces and nephews all made it happen. Ashley looked so beautiful and she also was so happy that it was easy to be caught up in the romanticism of it all.

She’s having a baby in February. It will be my first grandson. I’m looking forward to it. It will be fun to have a baby in the family again. Isabelle’s excited to have a baby brother, too. At first she asked, “I wonder if it will be a sister or a boy?” But when we found out that it indeed was a boy, she began to see the benefits of not having a little sister to steal your clothes and your dolls and that kind of thing. Although, she may have a little of that, it won’t be as much as it would if he were a sister.

************************************************

In May, we lost my brother-in-law, John, to Lou Gehrig’s Disease. We were all able to be there surrounding him with love in his last hours. It was peaceful and it helped make the grief a little easier to bear. We miss him in all things. To say that he was the life of the party may sound cliche, but it, nevertheless, was the truth. When ever we are all together, we, at the very least, say his name and often, we drink a toast to him.

In September, we again participated in the Walk to Defeat ALS. Then, that night, (thank you, Emily for dreaming it and Yvonne for planning it) we had the first ever John Vleck Gamble for a Cure Casino night. It was a fun night and we raised around $500 for the ALS foundation in his name. Every hour, on the hour, we drank a toast to him and gave away prizes to the leaders of the night to that point. His son, Logan, ended up winning the grand prize at the end of the evening, a traveling trophy. It was fitting. John would have been proud.

************************************************

Emily had her very last year ever playing softball with her team. We’ve grown to love those girls, their parents and especially the coaches. We’ll miss them, but mostly we’ll miss watching Emily play. It’s been an extremely rewarding thing to watch her play, and excel at, softball.

She’s gone back to college now and even though she brought her car with her this year, we are seeing her less. The apron strings are getting thinner and thinner. She’s talked about moving to an even farther away school next year, perhaps Colorado (to be with her boyfriend) or, if that doesn’t work out (not the relationship, the ability to attend an out of state school), Duluth (to be with her best friend). I miss her. Isabelle misses her. I’m pretty sure her Dad and brother miss her. It will only be that much harder next year, I think.

************************************************

Sam finally seems to be getting the point of school. He even said, “I think I’m smarter this year. I don’t even have to hardly try to get good grades.” I think he’s just growing up. He’s always been smart, he just hasn’t been mature enough to know it and use his brain in the appropriate way at the appropriate time. He still drives me crazy with his tardiness to school, which, in turn, makes me late for work. But I enjoy our morning ride and coffee together. He’s my boy and he’ll always be my baby.

************************************************

My health has been overall good until of late. I made it a whole year of working out at least 12 times a month, usually more. Then in July and August, with the wedding and sports, we had a little trouble making our quota, but we’re back on track now. I am now a firm believer that consistent exercise is instrumental in keeping you healthy. At least when it comes to the common things like cold and flu.

As I said, my health has taken a small turn recently. I have had 2 back to back urinary tract infections and then a reaction to my most recent antibiotic. I’m sure I’ll live. I also found out recently that I have carpal tunnel. Well, actually, I knew (funny how numbness and tingling in your hand and fingers lets you know something is wrong), but had it confirmed by EMG (electromyography). It’s likely I’ll have to have surgery. I’ll know for sure next week when I see the orthopedist.

************************************************

Jason is doing well, although right now he has shingles. He’s been working a lot of overtime helping to watch the protesters (Occupy Minnesota), the tailgaters (our Minnesota Gopher fans) and other kinds of beefing up of the police presence wherever it’s needed. He does this to help us financially. Times are tough for everyone, but right now, particularly us. I know we’re not alone.

************************************************

I’ll try to post more often, but I can’t make any promises.

Remember, November is Pancreatic Cancer Awareness month. You know why I care about that…my Dad.

My brother-in-law, John, while not giving up, is nearing the end. It feels odd and somewhat painful to write that. I published a recent email that his wife, Steph, sent out to a bunch of us on his website (the link will open in a new window/tab). Please feel free to go read it. We are going to make the best of whatever time he has left, much as we have done in the past.

One of the things John wanted to do before he goes is to go to The Shout House in Minneapolis. Not knowing how much time we actually have, Steph called there to see how hard it would be to get a reservation. They told her that they were booked out many Saturdays in advance. She told them the story and they made room for us. All fourteen of us. They were extremely accommodating and they were so awesome the whole night. Our waitress was the bomb. They just made us feel like we were special and we had a great time all night. They were the epitome of great customer service.

They have locations in Minneapolis, Minnesota, San Diego, California and Glendale, Arizona. If you are looking for a great night out, please go there. It’s a lot of fun and laughs and they deserve your business.

And, no, I am NOT being paid for this post. I just believe in giving credit where it’s due.

My daughter, Emily, lovingly pointed out that it’s been almost a month since I’ve posted. There’s not been a real reason why it’s been so long. I’m just not motivated most days. I’ve been working and working out, playing on Facebook and reading a lot and, well, life just slips along. So, here’s some bullet points of randomness. If you don’t like it…well, bite it.

• My heart is betraying me. Since July, I’ve been having issues with my blood pressure. Well, really it’s been going on for years, but I’ve been really trying to work on it since July. To that end, I’ve, as you know, kicked up the exercise regimen, I’ve been working on my live-it (it’s not a DIET), I’ve been trying to eat less salt and I stopped taking continuous birth control (which I was on to suppress periods that were partially responsible for my migraines). My heart does not care. It is still beating itself to death. It is really pissing me off. About 2 weeks ago, I raised a white flag. I went on blood pressure medication. Don’t get me wrong, I’m not giving up on the other things, I’m still focusing on those healthy choices. I’m just trying to get a little help from medication in the mean time. It’s so frustrating and makes me feel old and embarrassed. (Which is why, Mom and Emily, I haven’t said anything about it to either of you, so don’t be mad that this is the first you are hearing about it. I don’t really want to talk about it a lot.)
• Do you know that telling someone to eat less salt is like telling someone to breathe less air? It’s freaking everywhere. It’s in everything. Especially when you are on a live-it, it’s in high doses in all the packaged, low-fat, “healthy” foods like Smart Ones and Lean Cuisines. Which is what I take to work for lunch. It’s frustrating.
• Halloween time should be renamed to Hell-o-ween. Chocolate is my ultimate weakness and it, too, is fricking everywhere at this time of year. I am doing my damnedest to come up with alternatives that won’t be detrimental to my weight loss and health goals.
• I am trying really hard to get Emily to guest post here. If you want her to, also, clap your hands. No, really, encourage her in comments. She says she doesn’t know what to write about and I told her she can write about whatever she wants, but she’s afraid. She’s a really gifted writer. I want you to be able to experience that. So, if you have something you want to know about her or would like her to write about or if you just want to encourage her, please, do so in comments.
• Still loving my job. I just love the kids. They are so damn cute and they say the funniest things. The other day, one of my little patients said as I was leaving the room, “Shelli, I wanna give you a hug!” She just gave me the warmest fuzzies. She made my day. Even the older ones make me laugh and make me feel good. I gave some advice/words of encouragement to a bullied teen (without going into too much detail; HIPPAA and all that) one day and she said, “You don’t know how much better this makes me feel.” How can you not love doing what you do when you are rewarded in that way?
• Sam has a girlfriend. It’s someone that he was best friends with in 1st and 2nd grade. I think it’s so cute. She’s a sweet girl, too. Best part is, it inspired him to clean the whole house! He did a really good job, too.
• It’s really quiet around here with no children here most of the time. Like right now. It’s just me and Jason and the TV with football on. It’s gloomy out.
• Oh. One thing that I realized with this new medicine…I’m not nearly as tired as I have been in the last 7 years or so. I think my heart was pumping so hard that it was making me tired all the time and now it’s not working so hard. It’s incredible. I can’t even nap. Which is both good and bad because I LOVED my naps. I’m also finding it hard to sleep at night. And I refuse to go back on Ambien.
• Also. I’m cold all the time. People who know me IRL, know that I am always hot. Or I used to be. In the middle of winter, I’ll be sitting in the house in shorts and a tank top. Not any more. Now I’m sitting here in sweats, a t-shirt and a sweatshirt. Jason comes home and says, “Are you sick?” No, I’m just freezing to death. Thank you lisinopril. I’m NOT complaining. I can always put on more clothes or blankets. Believe me. I’ll take it over sweating to death any day.

I think that’s about all I can think of to regale you with. Aren’t you glad I stopped in?

The following is written in the words of my sister-in-law, Stephanie. This is their experience with Amtrak on a recent vacation to Wisconsin Dells. I’m hoping the use of social media, such as this blog and Facebook and Twitter will create awareness of how Amtrak treats their customers and maybe encourage them to treat them a little bit better. So please spread the word, dear friends.

Just a reminder about Steph’s husband, John…he has Lou Gehrig’s Disease, is unable to walk and relies on a motorized wheelchair to get around and he’s also unable to talk without the aid of a special computer.

We bought Amtrak tickets to travel from Minneapolis to Wisconsin Dells and back. We had a wheelchair seat for John, one for me, and two for the kids. When we arrived at the station we were told the train was running 3 hours late. We sat down to wait and an Amtrak employee came over and asked if we would like to take a shuttle bus. The bus was traveling to Chicago so that people would not miss connecting trains and it would make stops along the way. They assured us they could handle the power wheelchair and we would get there a couple of hours sooner. We opted to take the shuttle bus.

The bus driver had many problems operating the wheelchair lift and was very rude about letting me help. I had to sit John up all the way to turn him around on the bus and the driver would not let me lean him back again before his wheels were fastened to the floor. Once he was wedged in, I could no longer adjust his seat. John can not hold his head or body up well if he sits up too far, so he was uncomfortable for the whole ride. He was also slipping out of his wheelchair.

When we arrived in Wisconsin Dells, we went through the frightening process of using the lift again. I told the bus driver that we had luggage underneath. He opened it up and told me to look for it. It was spread out everywhere underneath other people’s luggage. We grabbed our luggage (9 pieces in all) and waited for our taxi to the resort.

Once we arrived at the resort, we realized we did not have John’s bi-pap machine. He can not breathe well at night without it. After a few calls to Amtrak I had the bus driver’s cell phone number. I spoke with him when he was still a couple of hours away from Chicago. I explained that we had left a bi-pap machine under the bus and told him what it looked like. He told me that they would be passing back through Wisconsin Dells and I could meet him to pick it up. He told me to call back in a few hours to see where they were.

I called the driver back at about 8:30 PM and thought he was still another hour away. When I hung up my phone, I had a call back from him right away. He said “I just remembered something that made my heart stop. I unloaded everything in Chicago. There is nothing left on the bus.” I asked him where our bi-pap machine was and he told me to call Amtrak lost and found.

Getting a hold of Chicago Amtrak lost and found requires a small miracle, but after many conversations with them we realized that our bi-pap machine had been unloaded on the street curb and left there by the bus driver. It has not been seen since. John spent his vacation sleeping in his wheelchair and waking many times during the night because he could not breathe well.

The day we were scheduled to return home, the train was due to leave the Dells at 5:52 PM. We arrived at the station around 5:00 and were told the train would be an hour late. The kids wanted to visit a couple of stores across the street, so we left John and the luggage in the station while we ran to a couple of stores. As we arrive back the station at 6:30 (22 minutes before the train was due to leave) we saw the Amtrak leaving the station. While John(who can only speak through his computer) sat there watching, the train boarded and left 22 minutes earlier than it was supposed to. When I complained to the station manager about it leaving early, he told me it was “just an estimate.”

About two minutes after discovering that we had missed the train, the four of us and our nine pieces of luggage were asked to leave the station so the manager could lock up. We stood there in the dirt parking lot as it started to rain with no idea how we would get home. We hauled our luggage up and down the streets looking for a restaurant to sit in.

After several phone calls home, a friend of ours drove four hours in our handicap accessible van to bring us home. We arrived home at 5:00 that morning.

I have since spoken with Amtrak about the ordeal and we were offered vouchers for the train ride. There is probably not much chance we will attempt to ride the train again! I submitted a claim for the $6,500 bi-pap machine, but we have not heard back yet. There seems to be a debate about the fact that it was not “checked” luggage, even though we could not keep all of our luggage in our possession on the bus.

Please share wherever you can–Google Reader, Facebook, Twitter and whatever else you can think of.

I don’t know what my job description is. The job title is Spouse of a Grieving Child. I’ve never done this job before. I didn’t apply for it. I wasn’t hired for it. I wasn’t trained for it. I have no idea what I am doing. So far, it’s the most difficult job I’ve ever had. It’s painful. It’s confusing. It’s frustrating.

In the days following his father’s death, Jason told me that he didn’t know what to do. He’s the eldest child and he feels like, somehow, he needs to step in and take his father’s place. Or at least take over some of the things that his father did. Things like helping my mother-in-law, Laurel, with jobs around her house. Or helping my nephew, Logan, with his Boy Scout projects. Or driving his sister, Steph, and her daughter, Sabrina, to the airport when they go to Chicago in February.

I feel like I facilitated these opportunities for him. I felt like that was part of my job. I told both Laurel and Steph that Jason needed them to need him. He needed to feel like he was doing something. At least that’s what I thought. I don’t know. I’ve never done this job before. But, I think it makes him feel better to be needed. I think it makes him feel better when he’s busy.

I’d be dishonest, though, if I said that I wasn’t worried. It may be selfish, but I’m worried that I am going to lose my husband. I’m afraid that I am going to lose him to his family and to his grief. I’ll still do it, this job as I see it, because it’s what he needs. I love him and I’ll give him whatever he needs to overcome or live with his grief. I will let go as much as I can without giving up.

I see the pain in his eyes. I hear the pain in his sighs. I don’t know how to take it away. Actually, I know that I can’t. It’s time…time is the only thing that will make it better. I know that he’ll always miss his Dad. All I can do for now is listen. And hold him. And wait. I’m learning. I’m learning to do this job.

This is part of a writing challenge at {W}rite-Of-Passage, a community of bloggers who are looking to get back to the writing part of blogging. To join, click the link.