Wednesday, November 11, 2015

Recent Church Policy Announcement

I don't usually comment about politics or LDS church policy or any other controversial topic because I feel like my views are best shared in conversations where I can be sure that the people I'm talking to don't misunderstand what I'm saying and where I can address any concerns or confusion. I'm hesitant to do so now, but I've had several clients ask if I would type something up. I also feel like the most recent topics necessitate overt gestures of support.

Last week, the LDS church shared that children of same-sex couples would not be allowed to be baptized, or receive any other ordinance, until they reach the age of 18. At that age, if they want to become members of the LDS church, they will have to go through a more stringent screening process than usual, which would include denouncing the practice of same-sex marriage.

Honestly, my first reaction was heartbreak. I knew this message would be seen and translated by so many as condemnation and rejection. I have seen the struggles LBGTQIA friends and clients have had within themselves and within church culture as they try and balance LDS beliefs with personal beliefs and parts of themselves. It breaks my heart to know that this announcement will make people believe that they are being rejected by God and that they aren't worthy to receive ordinances Mormons consider essential. Knowing this will rip families apart. Knowing this will be used to mock and persecute those who are already fighting every day just to feel they have permission to exist.

Hearing the stories about the spike in suicidal thoughts made that even more real to me. I had a client come into my office with tears streaming down her face. She looked at me and said "those could have been MY children". I read stories about individuals who had gotten divorced and were now in same sex relationships and their ex's are suing for full custody so that their children can be baptized. I had another client come to me and say "If they can say this, then what's next? Are they going to say children of porn addicts can't be baptized?"

The fear and pain are so real. I think it's really important for me to stand up and say that I see that pain. The scriptures tell us to "mourn with those that mourn". I've loved the pictures and stories I've seen of LDS families and individuals that reached out to friends they knew might be hurting because of this. Plates of cookies with notes that read "I don't know what to say, but know we love you."

I don't have a clear cut answer. I've found peace in several things as I've tried to make sense of this.

The bottom line for me is that God loves all of His children. He will never judge someone for the actions of another, no matter what LDS (or any other church's) policies state, or seem to state.

I also recognize that I am not privy to all the information that leaders of the LDS church have, meaning I won't be able to completely understand their choices and the reasons behind them. A client found peace in identifying that church policy is different than church doctrine. Policy changes. Doctrine is eternal.

This past weekend, Mark and I ran a couples class. One activity we used involved having the group complete a task without speaking and with their eyes closed. We had them do it twice. The second time, we pulled one of the participants aside and asked him to deliberately sabotage the activity. It obviously made it much harder and it took the rest of the group a while to figure out what was going on. When they figured it out, some of the group members initially got upset about it. As we discussed it afterwards, there were a lot of things that the group learned from the second part of that activity. One question we asked was "would you have taken that role if we had asked you to?" Over half of the group said yes. We asked why. One member answered "Because you asked me to. I trust you. If you ask me to do something, it's for a reason and it will be something that helps me or others."

I don't advocate blind trust. That wasn't blind trust. Mark and I have worked really hard to earn his trust. He was saying that based on his experiences with us, he believed in us enough to take that risk. We would lose his trust if we took advantage of it, which is an appropriate response.

That is the type of relationship I have with God and with the LDS church. I know that God will not ask me to do something unless it is for a good reason. I don't often know what that reason is when I am asked to do whatever it is He asks of me. I have faith that the LDS church is led by men of God. I have faith that the choices they make will, in the end, work towards peace rather than pain.

I don't know the reasons behind the policy announcement. I can speculate, but I have no way of knowing how on target I am. I know from experience that the most painful things in my life have often, in the end, brought the most growth and peace and joy. I didn't see how this particular situation could bring growth and peace and joy, but I am seeing more compassion and empathy for the struggles of LGBTQIA individuals from members of the LDS church now than I ever remember seeing before. I see more people speaking up, more people reaching out. That's one very good thing that has come from this.

I guess the bottom line is ...
To those in pain over this announcement, my heart breaks with yours and I'm here if you need to talk or need support. I love you and will not reject you. You are not alone. I don't know all the reasons behind this, but I know you are loved by God.

Because of my tried and trusted faith in the leaders of the LDS church, I can step back and say there must be a reason behind this.

Sunday, August 23, 2015

Florida Vacation, Part 1

Sunday morning we woke the kids up at 5am and told them to go to the bathroom, get dressed in shorts and t-shirts, and get in the car. They didn't know, but a month earlier we had rented a house on the beach in Florida's panhandle.

We wanted to surprise them, which took a bit of finagling because we had to pack for them and we had to let our babysitter know that she had that week off. We told the kids (and Kala) that Rob had a week of vacation he needed to use up, so he had decided to stay home and we were going to spend the week sorting through everyone's clothes and organizing sizes and packing up clothes that didn't fit anyone anymore. We asked them to help prepare for it by setting out five sets of clothes each and one set of flipflops and their bathing suits (so we could go to Jojo's pool). Voila! All we had to do was put them in a suitcases after the kids went to bed. 

The kids want to help tell the story . . . 

Megan: So it was 5 am and I had been woken up.
Kylie: I thought "Why did you wake us up now?"
Megan: At first I was really grumpy because I was really tired and hadn't gone to bed until 10pm. When Mom said that we were going to FL, I was really surprised because we hadn't done something like that in a long time.
Jack: I said "Just get in the car and GO Mom!"
Beth: I felt really excited, but not that excited about the part that it would take a whole day to drive there. The drive was long and boring. It was the LONGEST day of my life!
Kylie: The drive was shorter than I expected. It felt like a long time at the ending, but not at the beginning. 
Beth: I remember the awesome ocean views. They were so pretty! And I got to see a famous boat that was cool (the USS Alabama). That was the coolest part of the ride. 

(I tried to take a picture on the way back.)



Kylie: I didn't expect you to bring electronics, so I thought it would be more boring than it was (we brought our Kindle Fire, my old smart phone that still had games on it, and coloring books and crayons for each of the kids).
Jack: I remember the Mississippi river. It was HUGE. Like a giant earthquake crack that sliced the land in half. 
Kylie: There were really big trees that were long and skinny and sometimes there was orange dirt.
Beth: It was AWESOME! 
Kylie: We saw low tide on the drive. It awesome because all the land was sticking out from the water. 
Beth: I saw someone push a seagull out of their window. 
Eva: We got ice cream
Kylie: When we got Subway for lunch, there were bags of gummi worms, 2 for $1, and Mom wouldn't let me buy them. She said the line was too big. 

We got there around 9:30 pm (8:30 pm Central, so it took about 15 hours total). The house was way out in the middle of nowhere outside of a tiny fishing village. It was on the edge of a protected forest area and we kept seeing signs for black bears. It was remote enough that the GPS only took us to the general area, then we had to find it on our own. I'm impressed we found it in the dark!

This is what it looked like in the day time. Notice the bear lock on the garbage can. 


Here is a shot of the house the next morning.


Kylie: When we got the house, it was not like I had imagined. It was pretty weird. The stairs creeped us all out.
Beth: The house looked kind of weird at first, but we got used to it later. We wanted to explore the whole house, but you didn't let us.
Kylie: Yes she did.
Beth: No. She stopped us from opening every single cabinet. 
Jack: I thought it was kind of creepy. The stairs scared me.
Kylie: It was really well hidden. You couldn't see our back yard though. The stairs in front of the house had a railing on one side, but not the other.
Megan: At first it was kind of strange because it was a brand new place and I felt like I had to explore every inch of it. It was cool.
Eva: It was awesome. I liked the porch. I really liked it. Can we go there again? But this time we'd bring our own toilets because we need a toilet outside so we don't need to go inside. 

The house was . . . unique. It took Rob and I ten minutes to figure out how to turn on the lights. To get to the bedrooms upstairs, you had to go outside onto the screen porch and up a set of very slanted stairs with no railing (at least the stairs were solid). It took us half an hour to find the second bathroom because there was no entrance to it from inside the house. You had to go onto the screen porch to access it. Rob postulated that different parts of the house had been destroyed in hurricanes and they just built something to fill in the holes in the walls. I thought perhaps it was designed by Dr. Seuss. 

It didn't take long to unpack the car. We let the kids relax and play for a little bit, even though it was late, because we'd been in the car for so long. They discovered a little silver case that contained a chinese checker board on one side and a chess board on the other, along with chess pieces, checkers, another other types of game pieces. It became a favorite activity while we were there, although I don't think I ever saw them play any of those games the way they were "supposed" to be played. Rob and I got constant amusement from listening to their game rules and strategies. 


Laura was practically glued to my lap for most of the trip. I think she misses me when I'm at work. She was thrilled to have me there all day for several days straight.



We put the kids to bed and locked up downstairs. Rob stopped me as the two of us walked upstairs and made me listen. We could hear the lap of the waves on the beach. That is one of my very favorite sounds in the world. Despite the eccentricities of the house, this would be a good vacation. 

The next morning we all woke up just after sunrise and headed down to explore the beach. The older four kids have played on a beach, but the last time they did so was eight years ago. Laura saw a beach when she was three weeks old, but I strongly doubt she remembers that. I think Megan and Kylie might have vague memories of the beach, but Jack was 9 months old and Beth was two, so I don't think they remember it. 

I walked behind them so I could see everyone's reactions. It was amazing to see their joy and wonderment as they saw the ocean (technically the Gulf of Mexico). Beth was so excited she screamed. It was totally worth the 15 hour drive and the weird house!




Megan: When I first saw the beach, I thought "THIS IS AWESOME!!!!"
Kylie: It looked really small from the house. It was much bigger than I imagined. I didn't think the sand would be white.
Beth: I thought "Whoa! Cool!"
Jack: I saw the whole place and we couldn't see anybody and it was all for us to play on and I thought "Sweet!"
Eva: The ocean was huge and there was people there. Mommy, we have to go there again.

The kids ran back to the house to put on their swimsuits.

This is the view of our house from the beach.



We played on the beach all morning. I chose not to get in the water and was reminded just how covered in sand one gets when sitting on the beach. Rob and I realized we had been picturing a sanitized beach, which this obviously was not. It was interesting to see the crabs, who had holes all up and down the beach, and the hermit crabs, and the snails, and the small fish in the water. The water also had tons of these things that were black and gelatinous and odd looking. Neither Rob nor I had never seen anything like it before, but it looked like it might be some type of sea slug or perhaps a weird looking jellyfish, so we told the kids not to touch them. There were several small butterfly nets in the house and the kids used them to catch and examine the blobs. They were never able to catch fish in them, although Rob caught a 6-8 inch silver fish using his hands and a sand toy (we threw the fish back after the kids got to look at it).




One of the blobs -


The water was super warm and really shallow. We discovered later that day at low tide that there was a huge sand bar stretching out a couple hundred feet into the water. This made it really safe for the kids to play in the water and made me feel much better about it (I had been a little worried about high waves and strong currents since my kids were used to pools).

The whole drive to FL, Rob kept telling the kids we were going to look for "whalemingos" - a creature from a Phineas and Ferb episode. Laura spotted a sandpiper scuttling along the beach and excitedly exclaimed "A whalemingo, Mommy!!!!" From that point on, sandpipers were referred to as whalemingos.

We didn't see a huge variety of birds. We saw seagulls, sandpipers, and, surprisingly to me, pelicans. I don't know if I'd ever seen a pelican in the wild before. It was cool to watch them dive for fish.

When the sun got high enough that we started worrying about sunburns (around 10 am), we headed back to the house. We really appreciated that they had an outside shower head and seeing all the seawater and sand that were tracked into the house, even with the outside shower, made me understand why the house was a bit dirtier than I had thought it would be.

We had a picnic lunch in the living room. The dining room table was on the screened porch, which was not air conditioned.



We gave the five older kids the card games I had brought. The house had a tv, but we told the kids we weren't turning it on at all while we were there, and we didn't. They played card games, dominos, and with the chess/chinese checker board while Rob, Laura, and I laid down in the downstairs bedroom.

As Laura fell asleep, Rob and I talked. This trip made both of us see more clearly the cost of my heart issues. It was hard to realize that our kids had no memories of vacations like these. We had worked so hard to be sure to include vacations until I ended up on bedrest with Eva, then Laura, then was diagnosed with heart failure. It was hard to see that Rob and I had been transformed into a chronically ill woman and her caregiver. Neither one of us had any idea of what this disease would do to us, and while there have been lessons we've learned from it that are valuable enough that neither of us would go back and change it if we could, those lessons have come at a huge cost. I don't think you ever understand how catastrophic an illness like this is unless you go through it. We are so grateful that we are among the lucky ones that get to have a future on the other side of this experience and we decided we really need to make vacations a priority, even if they are short or low-key.

I took a nap with Laura (Rob went and hung out with the other kids) and woke up before she did. I lay there holding her and listening to the ocean and hearing the distant sound of the kids playing in the other room.


Once Laura woke up, Rob and I rested and read until we were informed that someone had locked the upstairs bathroom door and closed it. It took two hours to get the stupid door open and we finally ended up having to take the door handle off. *sigh*

After that debacle, we headed into town to find a Walmart and buy flipflops for me (I had brought ones with memory foam, which doesn't work very well with sand and water), Beth (her's broke), Eva (true to form, she brought high-heeled strappy sandals instead of flip flops), and Laura (who brought sneakers because she doesn't like flip flops). We managed to find sparkly Frozen flip flops for Laura, who loved them enough that she actually wore them about half the time (the floor at the house was dirty and the wooden part gave Beth a splinter, so we really wanted everyone to wear shoes all the time). Eva got Minnie Mouse flip flops with a pink bow on them. Fancy flip flops were insanely cheap in Florida and they had a huge variety. If it didn't take a 15 hour drive, I'd go there every summer just to get flip flops.

After dinner, we headed back to the beach. This time I got in the water. Kylie and I discovered that we could use sand toys to "pan" for shells. We found tons of tiny shells.


Beth collected snails and made a habitat for them in a bucket. Megan and Jack tried catching fish. Rob saw a stingray and decided to spend the rest of the trip out of the water, so he played on the beach with Laura and let her cover him with sand. Eva collected shells and dug in the sand. I looked up at Rob and smiled. It was totally a Norman Rockwell evening :)

Rob and I taught the kids how to play Uno once we went back up to the house. Rob won. Beth decided to take an approach opposite to a "poker face" and chuckled loudly and evilly every time she drew a card.

Beth: Not every time. Only when it was an evil card.
Megan: I sort of liked it, but I don't like it when I lose.
Kylie: She lost every time to me, so she must be incredibly grumpy.
Beth: We made up our own rules for Uno. You can make teams and they were only teams of two or three and you could not share cards, but you could look at each other's cards and help each other. Both people in the team have to win for their team to win. Me and Kylie made the best team and we beat Megan and Jack nearly every time.

The kids slept in one of the upstairs bedrooms. It had a double bed, which Megan and Laura shared, and three single beds. We brought another single mattress in and put it on the floor so there was room for all six. Rob and I got our own room next door to the kids' room. It had two double beds and a single bed (the mattress we dragged to the kids' room). The beds were like rocks. There were lots of pillows and they were somehow all about three times thicker than a regular pillow and seemed soft, but didn't compact almost at all. The combination meant that it felt like we were sleeping on cloth covered boards with our heads propped up at 45 degree angles by two by fours. It made us really appreciate our beds at home!

Every night we were there, we'd put the kids to bed and leave the doors to both bedrooms open and I'd sing them to sleep from my bedroom. I used to be able to do that every night. I need to try to do it more often.

Kylie: I liked having my own bed. I had the fluffiest pillow.
Megan: My pillow was really stiff and I missed my bed at home. I loved Mom singing me to sleep.
Eva: My bed was soft and my pillow was soft and comfortable.
Beth: Mom singing really helped to get Laura and Eva to sleep.
Megan: Laura slept across me like a belt.




Tuesday we all slept in late and decided to forgo the beach in the morning because it took so long to get cleaned up. Instead, we loaded everyone into the car and drove to Georgia. Both Rob and I want to hit all 50 states as part of our bucket list and we'd love to have the kids see as many as possible as well. On this trip, I added three states (LA, MS, AL), Rob, Megan, and Kylie added four (LA, MS, AL, GA), and the younger four kids added five states (LA, MS, AL, GA, FL). I only have five states left to visit (ND, CA, NV, HI, AK). Rob has four left (NC, SC, ND, HI).

We picked a town in GA close to the FL border and googled homemade ice cream stores in that town. We ended up at a little deli that served Bluebell Ice Cream (which for those not in TX is about as Texan as cowboy hats), although since Bluebell isn't currently being produced (a health issue at some of their plants which produced the equivalent of a statewide disaster in TX), they were serving something else. They also had pimento cheese sandwiches and slices of caramel cake, but we stuck with ice cream.


It seemed like such a small thing, but as we were driving home on Thursday, we asked the kids what their favorite parts of the trip were and every one of them listed getting ice cream in GA.

Rob loved southern Georgia. It reminded him of Oregon with all the trees and underbrush and green. All the plant life made it seem like we were almost in a bubble. It filtered noise and the view and felt really peaceful. I think he seriously considered having both of us quit and move there, even if we both had to work at the local Piggly Wiggly.



And a bonus cute photo of Laura -


On the way home we stopped at a roadside fruit stand. We bought peaches and a watermelon and boiled peanuts (which are now a family favorite - they surprisingly taste like mashed potatoes). We also bought homemade beef jerky, kangaroo jerky, and alpaca jerky. Because one of Rob's bucket list items is to eat "every type of large mammal", although he also includes things like alligator and frog legs, so I think it's more every animal eaten by someone somewhere. Except genitalia (i.e. rocky mountain oysters, otherwise known as calf fries). You have to draw the line somewhere.


Then we pulled into a small fish market to buy fresh seafood. Kylie and I went in together. We bought two pounds of fresh shrimp, a pound and a half of smoked mullet (a local specialty, smoked right in the store), and a pound of alligator (another local specialty). The owner told us since it was our first time there, we had to try his dips. He had us sample his deviled crab, deviled shrimp, and a third dip he called "hot mess". Kylie picked the deviled crab dip and we bought a container of that.

He asked when we were leaving. He was disappointed to hear that we wouldn't be there on Saturday. Alligator season opened on Friday and had we stayed until Saturday, we could have brought the kids in to see the alligators stacked up in the walk in freezer. He showed us pictures of the biggest one from last year, but apparently it would have been much better in person. He gave me a quick lesson on how to cook alligator (which is a white meat similar to pork, but with a distinctive taste) and made sure I was going to boil the shrimp since they still had heads.

I asked him if he knew what those black blog things in the water were. He got a weird look on his face and said "Don't touch them!" I assured him we hadn't and again asked what they were. Porpoise poop. Fabulous. There was dolphin poop in the water too. It looks like dog poop, except bigger. Due to the sheer volume of what was in the water on Monday, there must have been an international meeting of porpoises and dolphins, at which they exclusively served bran muffins and coffee, about a hundred feet off our beach.

Ahh, the joys of nature.


We boiled the shrimp and sauteed the alligator in garlic butter (which we used to dip the shrimp in since we didn't have cocktail sauce). We didn't have crackers, but deviled crab dip tastes pretty good with pretzels. Kylie and I probably ate a pound of the shrimp between the two of us. It was the best shrimp I've ever had. Rob loved the alligator. The rest of the kids liked most of it, but weren't quite as impressed. Except for Jack. He had ham roll-ups.



Rob was really tired, so he laid down to take a nap. The kids and I changed into our swimsuits and headed down to the beach. While Rob slept, the seven of us built a sandcastle. Rob took a photo of us with our sandcastle when he woke up.



Beth contributed by finding snails to guard the moat.


Jack dug a huge tunnel through the back and found a gigantic clam at the bottom of the hole. We forgot to get a picture of it, but it was probably 7-8 inches long.



This is my favorite photo from the trip -


We played in the waves and looked for shells and I tried to ignore the porpoise and dolphin poop, which was considerably less that day than the day before. I tried telling myself that the salt content of the water kept it relatively clean. I also reminded myself that the ocean was full of sea creature poop, whether I could see it or not. That thought was not as comforting as I had hoped it might be.

We headed back to the house, got cleaned up, and had watermelon for dessert. It was one of the best watermelons I had ever had.




Megan and Kylie babysat while Rob and I took a walk alone on the beach. We tried to get a photo, but it didn't turn out very well. It was pretty dark outside. The last time we went on a walk on the beach together was ten years ago in Daytona Beach when we flew down for Christy's college graduation. A lot has happened since then. I hope it's not another ten years before we get to take a walk on the beach again.



Monday, August 3, 2015

Church Today

We used to attend church every Sunday. We fed the missionaries at least once a week. We had assignments in the presidencies of various organizations. I worked in the Young Women's (girls ages 12-18) presidency for a decade, then in the Relief Society (women's organization) presidency. Rob always worked with the missionaries. Not only did we go to church every Sunday, but our kids were at every activity. I brought dinner over to someone who needed it at least once a week. 

Then I was diagnosed with heart failure. I think we kept trying to go to church every week for a while, but I honestly don't remember very much from that first year. The second year we went to church twice I think. I just couldn't function. I was able to work and that was it. I had to work because we needed me to finish school so I didn't lose the work I had done. We needed me to finish school so I could start getting paid because Rob couldn't work full time, run the house, and work a second job, and medical copays add up fast, plus having six kids is expensive. Mentally I needed it too. I needed to have something I could still do because I couldn't physically do any of the things that I had centered my life around since Megan was born. 

So I worked. But everything else stopped. Kylie and Jack stopped playing soccer (not that Jack cared - he wasn't a fan). We stopped taking the kids to church activities. We stopped doing playdates. We stopped having people over for dinner. We stopped going places like the zoo and Cabela's. We even stopped Mommy dates. On their birthdays, I stopped making cakes and bought them instead. We didn't even wrap presents - we just put them in boxes or old gift bags. 

Our kids learned to take care of themselves and each other at home. I am so very grateful that Kala came into our lives and was able to fill some of the hole that I left. And Rob has done an incredible job stepping up and taking over as primary caregiver. 

We were so excited when my new cardiologist discovered that my heart was healing. He started stepping down my medications and I found myself slowly coming back to life. I didn't realize what that would be like. I thought I would just start feeling much better - like Obi-wan turning the tractor beam off, but having him turn it back on this time. There was a little bit of that. 

Mostly though, I feel like I'm slowly coming out of a coma. I am seeing all the things that I haven't been able to keep up on for the last five years (2 years of bedrest before 3 years of heart failure). The state of the kids' bedrooms. Their unsorted clothes. The cluttered house that hasn't been deep cleaned the way I always cleaned it in years now. The way Megan and Kylie and Beth have needed to step up and be mothers to Laura and Eva. The way Rob has had to balance things without my help because I just haven't been here mentally. It's really hard to see. It's really hard to recognize how much of me has been gone for the last 2.5 years. It's also hard that I can't just jump up and fix it. My abilities have increased since the first decrease in meds. I am more aware and don't sleep as much. But I still can do very little, especially on bad heart days, which I still have fairly often. I've actually had more bad heart days in the last few weeks than I have in a while. It sucks. But I'm seeing them now. I didn't used to really remember them because I'd crash and pass out for the rest of the day, or even weekend. 

Anyway, one of our goals this year was to start attending church as often and my health allowed. We've done a much better job than last year. We make it about every other week and every time we've missed it's been because I couldn't even get out of bed. Rob doesn't like leaving me alone in that condition. If I have a hard crash on Saturday night, he usually makes me stay in bed all day on Sunday. I really want to make it to church though, so I've started setting an alarm for noon so we can at least make it to the last two hours (which start at 1:30). That way, I sleep in as late as possible, but we get the kids to the classes that they get the most out of. 

Rob didn't feel good this weekend. I had a really bad heart day yesterday, but went to bed early and slept until almost noon, so I felt well enough to try to make it to church. Rob was still sick though, so he fell asleep when I woke up. I decided I still needed to make it to church. I haven't had the strength or energy to take all six kids to church on my own since before my diagnosis. I knew I'd feel icky about it all day if I didn't go though. I said a prayer asking Heavenly Father to help me get there because I just couldn't do it on my own. He must have helped because the kids and I were all ready and in the car before we needed to leave. 

We got to church and Eva refused to go to her class. She just went limp and sat silently on the floor with big fat tears running down her cheeks, while her nose turned red. I think her purple tiara brought it all together. Laura was with me too because we don't send her to nursery because every single time she's gone, she's gotten sick and passed it through the family and I don't do well with illnesses due to my heart. Eva got to sit against the hall wall (I didn't want to make missing class fun), which she did quietly with her little lips quivering, occasionally looking at me from underneath her bangs (which I really need to cut - but she totally used it to be more dramatic), and choking back tears. I finally broke down and let her come sit on my lap. 

The third hour of church started and I took Eva and Laura with me to Relief Society (the women's class). Church is hard for me. I don't feel like I fit in to our congregation very well and the women I'm close to are usually in other classes. I was feeling overwhelmed and tired anyway because my heart really isn't doing well this weekend for whatever reason. I was feeling awkward because I was sitting in a women's meeting with two preschoolers who were supposed to be in their classes. I sat in the back and tried to keep the girls as quiet as possible. They did a really good job, but I still felt badly about having to bring them in with me. 

I was worried that the lady sitting next to Eva was being distracted or annoyed by Eva and was stressing out over that. Then she caught Eva's eye, smiled, and silently handed Eva a copy of "the Friend" (a children's magazine put out by the church). Eva was able to trace the mazes and find the hidden pictures and was so much happier than she had been just sitting there. 

That meant so much to me. I had never seen that lady before. She had no idea who I was. She didn't know how hard it had been that morning to get up and go to church by myself with the six kids. She didn't know that I was feeling guilty because I'm betting the reason Eva won't go to primary is that she isn't familiar with it because of all the time we missed due to my heart. She didn't know I was feeling out of place and wondering if I really should have come to church at all. It almost made me start crying in Relief Society. 

Then the lady who was giving the lesson wrapped it up. Her lesson was on strengthening the family and she had used the analogy of building a house - picking a model, building a foundation, etc, etc. I'm sure she put a ton of work into it and she had quotes and scriptures to go along with each step. She ended it though by drawing an X through the whole thing. She said some days all we can do is three things: breathe in, breathe out, and repeat. And that if that was all we could do, that was enough for Heavenly Father. 

For the first time in a really long time, I felt cared about at church. 

I'm sure that lady has no idea sharing her magazine with Eva meant that much to me. (Her name was Amy Jo if anyone from my ward reads my blog and knows her and can tell her.) I told her thank you, but couldn't explain without breaking down, which I do NOT do at church. I also need to thank the lady who gave the lesson. 

I've always been the one that had everything together. That could fulfill my assignments and had perfectly behaved children and always could be counted on to show compassion to others. It's humbling to be the one who needs the compassion.

Monday, July 6, 2015

Nothing Big

I haven't been able to post regularly for quite a while. I know I need to get back into it because we need some way to be able to look back and remember. All that I've posted in the last year or so has been really big things. Today wasn't a huge important day. It was a really good day though. I've had those a lot more frequently lately and I'm really grateful for it. I need to keep better track of "little" things like today because, in the end, I think those will end up being among the most important things.

I had acupuncture this morning, like I do every Monday. That part wasn't particularly fun, but the kids had a wonderful time swimming at JoJo's while I was there. Then we spent the next three hours hanging out and swimming.

Taco Bell for lunch, eaten in dripping swimsuits at JoJo's picnic table. Swimming with Laura (who managed to fall into the pool twice without floaties today and swam to the side both times by herself in the ten seconds it took me to get to her) and jokingly helping the kids cheat as they played Marco Polo. Talking with JoJo as we watched the kids and played with the littles (including Aubrey, her granddaughter, who Laura calls "my Aubrey"). Hitting up Sonic on the way home to get slushies for everyone because it was happy hour. Letting the kids get Nerds in their slushies. Having Rob get home and get a nap for 30 minutes next to me. Getting to tell the kids they get to stay up late and have a campout in the living room (even more exciting for them because it's a weeknight) because Rob and I were going on a date. Meeting up with Christy & Dan and Susie & Drew for dinner at Red Robin, leaving Megan and Kylie at home to babysit (LOVE that we are at that stage of life!). Having the six of us watch Jurassic World together. Getting home and having all the kids settle down quickly and easily so that we will let them do this again sometime. Except for Laura, who insisted on having me cuddle her to sleep. Getting to talk to Rob for a bit, then scratch his head as he fell asleep.

It feels like I'm coming back to life. Getting to joke around with the kids again and even having the energy to boss them around again. Making it through the day and still having enough energy to deal with a cranky two year old who just wants to be held.

Christy got sick last Friday and she actually called me for advice. It's been a long time since she was able to do that. It felt nice to be able to fill that role again.

It's really nice to have Susie and Christy nearby. I've loved being able to do family things again with them. Watching them interact with my kids is amazing. I love it when two of us or even the three of us say the same thing at the same time or react the same way. All three of us laughed and snorted in the same places while watching the movie tonight. It's even fun to see our three partners react to the things the three of us do :) In the last several years, I haven't been able to have as much interaction with most my family and it's really nice to feel that connection with Christy and Susie. It feels like a part of my heart that was missing has been returned.

Nothing big, but it was a really good day :) I love being a mom. I love being married to Rob. I love hanging out with my sisters and Drew and Dan.


Sunday, June 21, 2015

So I Don't Forget . . .

I'm hoping I never have to again experience what it's like to be told you have a long term terminal illness.  I'm glad I got the chance to go through it and I want to remember what it was like so that I'll know how to respond to others dealing with similar issues. There are so many parts you never hear about.

No one knows what to say to you. We stopped going to church for about a year because it took me several days each time we went to get over the emotional toll of attending church and seeing the reactions of others. Not that anyone was mean - I don't mean to criticize anyone. I had no idea what to say or do before going through this.

There were the people who didn't know what to say, so they avoided me. It made me feel like a pariah. I tried to stay as invisible as possible and never meet anyone's eyes so that I didn't notice when people quickly looked away or awkwardly ignored me.

There were the people who knew the generalities of what was going on and felt like they should say something, but felt awkward about it. Being asked how things are going when things aren't going well is hard, especially if I didn't know them well. Then I had to pick between being honest and explaining details, and just saying "no change". If I explained any new developments, I got to relive having to go through learning about them myself as I watched the expressions on their face as I talked. I usually just smiled and said that things were the same. The disappointment on their faces with that statement was much easier to handle. Having people who barely knew me, but felt obligated to ask me how I was doing also made me realize all over again how sick I was.

The best responses were from people who obviously cared, who didn't try to sugar coat things or be falsely optimistic. One lady came up to me at church after I had posted a depressing update on my blog. I didn't know her well, but she said "I read your blog post. It made me want to cry. I'm so sorry." That meant so much to me. She didn't ask any more detailed questions, but she let me know she cared. She kept up on what was going on by reading my blog posts. I tried to post any major updates on my blog so that I didn't have to explain it over and over to people. Every time I had to tell someone about it, I relived it.

Another response I loved was "You're in my prayers. Let me know if I can do anything to help." Not asking for additional information. Letting me know they were there if we needed help and they cared.

Basically, the responses that meant the most told me they cared, this sucked, and let me know they were there if I needed them.

Another issue that was hard to deal with was the incredible decrease in energy and capabilities, but no outward changes that made that obvious. I think I've seen more about this online than any other part of having this type of challenge. I didn't look sick. Many people didn't understand what it was like. I lost friends and had family members judge me because I didn't have the energy to go places I "should" have gone or deal with have conversations that required a lot of energy.

People made comments to us about having our priorities in the wrong place as I kept working, but didn't attend church. I HAD to work. Even though we have wonderful insurance, copays add up fast. Plus we have six kids. Kids are expensive. Rob couldn't work two jobs and run the house and take care of the kids. We needed the money. Also, attending church emotionally crushed me due to the reactions of others. My clients had no idea what was going on and the people at work who knew about it reacted in ways that helped, rather than hurt. I guess working with a bunch of therapists was helpful in that area :)

Other judged me because I worked, but slept  most of the time I was home with my kids. I had one doctor tell me off for continuing to work, telling me I was cheating my kids out of something vital. SHE had quit her job and stayed home with her kids and it turned out to be what she needed to do, so of course it was what I needed to do. I didn't know how to respond to her, but fortunately didn't have to see her very often after that. I'm glad she was able to figure out what was best for her, but that was not best for me. As I mentioned before, we needed the money. Also, we have half a dozen young children. I didn't have the energy to do the things they wanted to do. All I could do was sit and cuddle them and read to them or watch TV, which I did. But they didn't want to do that all day and I didn't want them to do that all day. Our babysitter did the things I used to do that I wanted them to experience. She took them to the park and played outside with them and taught them to bake cookies and made playdoh and did arts and crafts with them. Rob and I put a lot of thought into me working and it was the best balance for us. It also helped emotionally for me to work. I couldn't do many of the things at home that I had done. I couldn't do the laundry and organize the clothes and toys and clean the house. I still could do some things - like balance the check book and pay the bills. And I cooked some nights. At home, I was surrounded by things I wanted to do and couldn't do. That is hard. At work, I could sit for hours and talk to clients and see that I was helping them, and on top of that, I could make enough money that Rob didn't have to work a second job and was able to stay home with the kids at night and on the weekends.

One of the very hardest things for me was watching people that I hadn't seen for a while as they noticed the differences in me. I was never in denial about what was going on with me. I always took my meds and watched my diet and went to my treatments. But I avoided thinking about it unless I HAD to. Also, as we learned about what was going on with me, we learned in stages, so it built up gradually, with big hits when I'd have a doctor's appointment or get test results. Maybe it was worse because I read people for a living, but some of the worst times for me were watching people who had known me before I got sick as they saw just how sick I was. That brought the sides of my carefully constructed box that I kept this issue in crashing down. This is in no way saying any of them did or said anything mean, but it was really hard for me to live through. I'm sure it was really hard for them to live through too.

Which brings me to something else I had never thought about before going through this - how this influenced Rob and the kids. I think the beginning of my illness was much harder on Rob than it was on me. The meds they were starting me on were so strong, that I slept through most of those months. Rob had to go through suddenly losing me, almost like having me disappear into a coma. He had to deal with the kids' questions and fears and he suddenly had to jump into being both mom and dad. And he did all of this not knowing when my heart would decide to give out, taking me away permanently.  I don't know what else to say about that. That part makes me hurt more than anything else I've typed.

Another thing you don't hear about is the time you lose. I remember a friend telling me that she had to go to counseling after battling cancer for two years because of the overwhelming grief over the loss of those two years. There are so many, many thing I missed that I will never get back. I don't remember Laura's first words or first steps. I missed holidays and birthdays and milestones. I lost the person I was - I don't think most of my kids even remember that person. Laura is so used to me sleeping that when she sees me, she always responds with "Mommy! You woke up!" I know I gained so much going through this and I wouldn't go back and change it, but the price is very high.

Saturday, June 20, 2015

Stress Test Results

My new cardiologist decided he needed to see how my heart functioned on it's own and what specifically was working and what wasn't. He took me off my primary medication for 48 hours and did a regular echo and then a stress echo.

An echo is an ultrasound of my heart. A stress echo measures how your heart functions when your heart rate is raised, so they put me on a treadmill and got my heart rate above 156 beats per minute, then had me lie down and quickly did the echo before my heart rate slowed.

The first echo (non-stress), showed what every echo I've had has shown. My ejection fraction (EF - the percentage of blood pumped out with each heartbeat) was 45%. (Normal is 65%, although as long as it's about 55%, it's considered within normal range. Once you get down to 35%, you have to take blood thinners because your blood starts to clot.) This doctor showed me exactly how my heart was working. Your heart is divided into four  chambers by muscles, and with each heartbeat, the muscles on the outside of your heart contract, while the muscles on the inside expand, making each chamber much smaller and forcing the blood into either the next chamber or into your body. The muscles on the outside of my heart were contracting, but not as much as they should. The muscles on the inside weren't expanding nearly at all. He showed us the top view of one of the chambers of my heart, and we could see the thin light gray circle of muscles contracting during each heartbeat and the big black pool of blood in the middle. It was nice to be able to actually see and understand what was happening.

Then he brought up the results of the stress echo. He told us that during that test, my EF was 65%. My heart worked perfectly. He brought up both results so we could see the difference. The biggest difference was the view of the individual chamber. The first echo had shown a pretty thin gray circle and a huge black pool in the middle; the stress echo results were completely gray (meaning the whole muscle was working).

He thinks what I had was actually viral cardiomyopathy and I've healed from it. The medications I'm on are so strong, it didn't show up when I healed. The side effects I've experienced in the last several months have been from the medication. The medications slow my heart down, so every time I would be active enough to get my heart working, the meds would shut it down.

I can't just go off the medications. It took them six months to get me up to the doses I'm on, and that was rushing it because I was doing so poorly. It's going to take him 6-9 months to get me down to the doses he wants me on. Because of how this has affected my heart, I will have to take low doses of my two primary medications for the rest of my life. I will never be back to where I was before this happened, but I've been functioning at 5-10% of what I used to be, and stepping those medications down should allow me to get a significant amount of my energy and abilities back. We don't know what our new normal will be, but at this point, functioning at 75-80% of where I used to be would be an amazing blessing :)

After my first appointment, he took me completely off one of the three medications I was on for my heart and my energy levels jumped to about 20%. After this second appointment, he halved the medication I'm on the highest dose of and my energy levels have soared (for me - I'm still probably only at 30-40% of where I used to be, but it's better than I've felt since before I was diagnosed).

Granted, feeling that much better led me to push myself all week and I've crashed three times so far today, leading Rob to sigh and roll his eyes because I can't do anything halfway :) He's told me I need to stay in bed tomorrow. *sigh* I'm not good at taking things slowly.

I can tell I'm getting better because I'm noticing all the things I want to change around the house. Rob says having me feeling better is worth having to clean like I used to clean, and replace the dining room table and couches, and rearrange rooms, and redecorate. We'll have to see if he still thinks that after I actually start doing those things instead of just talking about them ;)

I'm not sure it's really sunk in yet for either of us. We've told the kids that I'm getting better, but it's going to take 6-9 months for me to get there. It just feels so weird. The hell and heartbreak we've spent the last two and a half years going through are over. This is not going to kill me. I'll get to watch my kids grow up. Rob and I will have a chance to do the things we've always wanted to do as we grow old together. I get my life back. I get to be able to do things with my kids and Rob and my friends.

I can now officially say I'm a heart disease survivor :)

I think I'm going to start working towards running the Boston Marathon :)

Wednesday, June 3, 2015

Heart Update - 2nd Opinion

I haven't posted updates because it's  been hard to talk about.

In February I went back to my cardiologist. He did another echo and told me that my EF is still at 45%, which is what it was when I was diagnosed. I had gotten much worse and while they managed to improve on where I had been at my worst, I haven't gotten any better. He said there was nothing else they could do for me except to just keep checking it, have me stay on my meds, and wait for it to get worse so we had to take more drastic measures.

That was really hard to hear, so we didn't talk about it to very many people.

We've been planning on getting a second opinion for a while, but finally made it into another cardiologist's office today.

I was misdiagnosed. I don't have postpartum cardiomyopathy. He says we'll never know for sure what caused my heart failure, but it was probably either medication (the meds I was put on during my pregnancy with Eva) or a virus (if you've ever seen the movie "Beaches", that is what Barbara Hershey's character dies of).

Cardiac rehab is usually pretty successful with those issues . . . if done in the first 3-6 months after the condition develops. We're two years past that point (although if it was the meds from my pregnancy with Eva, then we're four years past it and it wasn't discovered until it was two years too late). At this point, not only would my insurance not cover cardiac rehab, but it wouldn't make a difference.

EECP was a huge waste of time because it doesn't even treat this type of condition and I shouldn't have been sent there. Those seven weeks were hell and it took me weeks to recover from that and now I find out that I shouldn't have had to go through any of it.

He thinks my PVC (when my heart would contract before filling up with blood, making me skip every third beat) was actually caused by low potassium levels that were due to being on lasix. The medication I was put on to treat the PVC makes you retain potassium, so it just balanced out the effects of the lasix. He took me off that med (I stopped using lasix months ago because of my reaction to it).

I'm going back next week for a stress echo and he's taking me off my beta blockers (the med I'm on the highest dose of) for 48 hours before the test. He is checking to see which parts of my heart are not functioning correctly. He's also checking to see what my heart does when I'm active as opposed to at rest. This will let him know what dose of the beta blockers I actually need to be on. My previous cardiologist didn't consider any of those questions.

Hopefully all of these things will help improve my ability to function. The bottom line is the same though. This isn't going to get better. The damage is now permanent. This new cardiologist is fairly confident that if we stay on top of it, he will be able to maintain my current levels for quite a while. We're fighting for time and we're trying to improve my quality of life as best we can.

Now I just need to figure out how to adjust to this and put a positive spin on it, because that's what I do.

We've adjusted so that I no longer have to do many physical chores around the house. I have a job that has very low physical requirements. The older two kids will be home next year (long story - they will be attending an online charter school), which makes it easier for me to sleep in or rest when needed. Almost all of my symptoms didn't show up until after I started medication, so maybe they will decrease significantly if my medication levels are decreased.

I wish this would go away, but I don't wish it never happened. This has been one of the hardest things we've ever gone through, but it has made a huge difference in our lives. It has forced me to stop doing everything for everyone, which not only allowed my kids and Rob to have the chance to step up, but also taught me to start letting people do things for me. It's really hard for me to let people in and that is something I am still working on. It reset our priorities and forced us to figure out what was important.

I wouldn't pick for this to continue. I keep hoping that somehow magically I will be able to heal from this. I know that the human body is so complex that the best the medical world can do is make an educated guess and that anything is possible. They told us we could never have children and we had six in ten years. Rob says the best way to make me do something is to tell me I can't do it.

All that being said, if this doesn't magically disappear, I'm sure years down the road I will be grateful for the lessons I learn from it. It sucks, but if it had to happen, I'm so glad it happened now. We got to have six amazing children (my heart won't make it through any more pregnancies), I have my degree and a job that I love that I can still do even with my heart, Rob has a job that has really good insurance and benefits and that can totally be left at the office. I have amazing friends who love me and are happy to be able to help me.

One of my friends on facebook posted a link to something written by a woman who's husband was killed a month earlier. Towards the end of the post, she stated "Option A is not available. So let's kick the $&^% out of option B." I can totally do that :)

I shared my emotional first aid kit with my women addict's group this week. Part of it was a poem I had on my wall when I was in college. It seems to apply here.

God,
Before He sent his children to earth
Gave each of them
A very carefully selected package
Of problems,

These,
He promised, smiling,
Are yours alone, No one
Else may have the blessings
These problems will bring you.

And only you
Have the special talents and abilities
That will be needed
To make these problems
Your servants.

Now go down to your birth
And to your forgetfulness, Know that
I love you beyond measure.
These problems that I give you
Are a symbol of that love.

These monuments you make of your life
With the help of your problems
Will be a symbol of your
Love for me.
Your Father.

~ Blaine M. Yorgason

Monday, June 1, 2015

Getting Back Into Things

I keep waiting to have time to actually catch up on everything I've missed, but that never seems to happen. If I don't just jump forward to where we are, I don't think I'll ever post again. 

A friend posted this on facebook and I thought it would be fun to see how the kids answer :)

Without any prompting, ask your child the following questions, and repost exactly what they say:

1. What is something mom always says to you?

Megan - Don't lie
Kylie - Clean up
Beth - Help Megan and Kylie babysit
Jack - Don't fight
Eva - Do not have an accident (potty)

2. What makes mom happy?

M - Being a mother 
K - Spending time with us
B - When I get good grades, which is usually
J - When I don't get in fights when she's gone
E - Babies

3. What makes mom sad?

M - When I fail classes
K - When we're hurt
B - When I don't clean
J - When I get into fights
E - When I have an accident (potty)

4. How does your mom make you laugh?

M - By teasing Daddy
K - Tickle me
B - Say "don't smile"
J - When you tickle me
E - Tickle my feet

5. What was your mom like when she was young?

M - A lot like me
K - You didn't watch TV 
B - Smart
J - Like Beth
E - You wore necklaces

6. How old is your mom?

M - 37
K - 37
B - 38
J - 34
E - 11

7. How tall is your mom?

M - 5'10"
K - 5'5"

B - 5 feet and something
J - Almost the size of Daddy
E - Huge

8. What is her favorite thing to do?

M - Hug Dad
K - Take care of us
B - Spend time with us
J - Spend time with us
E - Make cookies

9. What does your mom do when you're not around?

M - You talk to abused people and try to help them at your therapist office
K - You work
B - You do what you do
J - I don't know because I'm not around
E - Go to work

10. If your mom becomes famous, what will it be for? 

M - Being Supermom - you can juggle six kids, a career, and a failing heart
K - A cooking show
B - Singing or a cooking show
J - Being the best mom
E - Painting

11. What is your mom really good at?

M - Singing
K - Taking care of us
B - Being a mom
J - Being a mom
E - Painting

12. What is your mom not very good at?

M - Not protecting us
K -  I can't think of anything
B - Being a bad mom
J - Being a bad mom
E - Let me think . . . 

13. What does your mom do for a job?

M - Therapist for drug use
K - You're a therapist and a stay-at-home mom
B - You're a therapist
J - You're a good mom
E - To drive and to cook

14.What is your mom's favorite food?

M - Lobster
K - Soup
B - Lobster and Greek food
J - Shrimp
E - Lobster and salami and fruit and bacon and bubble gum and candy

15.What makes you proud of your mom?

M - That you're a good mom
K - That you're my mom
B - You're a great mom
J - When you get us presents
E - 

16. If your mom were a character, who would she be?

M - Belle from Beauty and the Beast because you're pretty and you sing really pretty
K - A mom on a show
B - A mom on a show
J - Supermom
E - A supermommy hero

17. What do you and your mom do together?

M - Go shopping and do mani-pedis
K - Go swimming
B - Hug
J - Mommy dates
E - Wrap presents

18. How are you and your mom the same?

M - We have a lot of the same traits like the same eyes and the ability to talk to our dads a lot
K - We both have dark brown hair
B - We're both smart and we both get A's a lot
J - We are both in the same family
E - We are in the same family

19. How are you and your mom different?

M - You were an A student, but I've been struggling with my classes
K - You're older than me
B - You have thicker hair
J - You're a girl and I'm a boy
E - Because you're good at taking care of all of us and I'm good at taking care of Laura

20. How do you know your mom loves you?

M - Because you tell me every night
K - You tell me you do
B - You're always there for us and you congratulate us
J - Because you do mommy dates and you treat us like we're very important
E - You're always there to take care of us

21. What does your mom like most about your dad?

M - The fact that he almost never gets mad at you
K - His beard
B - He's nice
J - He's her husband
E - His glasses and his hair

22. Where is your mom's favorite place to go?

M - Home with your family
K - Home
B - Anywhere that we are or that your friends are
J - Home
E - Going to Miss Jojo's house with us

23. How old was your Mom when you were born?

M - 23
K - 26
B - 28
J - 30
E - 01