1. It is fun coming back home and staying in the same little room I grew up in, lying in the narrow twin bed next to the same window looking at the same rose-sprigged wallpaper I looked at 25 years ago. It's not quite so fun to lie in that bed with my 8 1/2 year old son who inexorably tosses and turns and scoots me over until I've got exactly 8 inches at the very edge of the bed to call my own. :-) But he sure looks angelic sleeping so peacefully in the early morning light.
2. Today marks the first official day of our sisters reunion. Rosalynde, Naomi, Rachel, Christine, and I (and later tonight, Eva) loaded up our stuff and headed over to the house of a friend of my mom's in La Crescenta. Her family is out of town and they were nice enough to let us stay her for the week for free. We brought along all the little kids (Eva and I are the only sisters currently unencumbered), leaving the older kids 5 and over in the capable hands of my mom for cousins camp.
They spent the day hiking, swimming (my mom is having a swim teacher come and teach the kids every afternoon this week), doing crafts, and having a pizza party and movie night. They will have a blast. It's been so cute the last couple of days seeing all of them lined up in a row in sleeping bags on the music room floor.
Mosey wasn't so sure about things at first. He sometimes has a hard time in bigger crowds of kids, and didn't want to participate this morning. I figured he would have a better time after I left, when he knew he had no choice but to participate and have fun, or be miserable the whole week. Sure enough, he called tonight and said, "Mom, at first I was barely having any fun at all, but now I think it is awesome!" My mom is awesome to take this on.
3. My sisters and I spent the afternoon hanging out, talking, playing with the little kids. Naomi and Rosalynde took their kids to the library story time, and later Naomi and Christine took their kids to the park. I lounged around the house and played with babies and talked with my sisters. I think it is awesome, too. Especially when Christine came home with two grocery bags from Trader Joes filled with all sorts of high-calorie, yummy treats. What the heck, I'm on vacation. :-)
Tuesday, July 31, 2012
Sunday, July 29, 2012
California!
The boys and I are in California visiting my parents. But I better write some things now instead of waiting till I get home, or else I will forget.
We drove this year instead of flying since Southwest failed me and didn't offer any good summer deals to LAX. But it was kind of fun driving, so it's OK. I meant to leave Wednesday morning. But Tuesday I didn't finish getting laundry done until way too late, and I figured getting a few hours of sleep before driving 1400 miles across the country was a good idea, so we didn't even start packing until Wednesday morning, and didn't get on the road until about 1:30 PM. But, it was a very nice drive across Texas. Really! The rain we had this past month resulted in very pretty scenery, even in the desert. And we drove through some pretty spectacular rainstorms which helped keep me awake. :-)
In Ft. Stockton we stopped at the most incompetent Taco Bell ever. First of all, they were sloooow. I've NEVER waited so long in a drive-through. Then, when we got our order, we realized they gave us 2 soft tacos instead of the 3 we ordered. So I sent Joseph in to get the third, and after another long wait he came out with it. Then, as we got on the road again, Mosey said, "Where's my food?" And I realized they completely missed his order as well. So back we drove, and I sent the boys in again (with the receipt) to get our last item. They came back a few minutes later an said that the guy wouldn't give it to them. He said, "Sorry, you should have asked for it the first time you came in. We can't give it to you now." So, I was very mad. I sent the boys in because it was raining like crazy, and there were no rugs inside the store and the tile was very slippery. But I got myself out of the car, made it into the restaurant without breaking my neck, and gave the manager a piece of my mind. It was kind of fun. I'm not sure my kids have ever seen me tell someone off before (in a polite, but firm way, of course). And we did get our item, and the manager came to open the door for us to make sure I didn't break my neck (I made sure to tell him I hadn't come in myself because the floor inside the restaurant was hazardous). All-in-all we ended up wasting almost an hour there. Grrr.
Anyway, we made it to El Paso by 11:00 PM, which wasn't too bad.
The next day we drove all the way to Los Angeles-- about 12 or 13 hours. It was a good drive, no issues. The boys were good. We listened to one whole audio book and started another one. I blasted U2 when I got tired. My boys call it "Rock star music." :-)
We got into La Canada at around 10:00 PM, and I got to see my new baby nephew Jacob! He was all of 10 days old and soooooo cute. Oh man, I love little babies. And big babies (this kiddo was 10 pounds when he was born!) And I also saw 3 of my sisters, 3 nieces, and my mom and dad, but they weren't quite as cute as the 10-day-old. :-)
The last couple of days have been good. The boys have gone swimming and reacquainted themselves with all their favorite places in Grandma and Grandpa's house. I've gotten to talk with my sisters and hold babies. Last night my other sister and her four kids flew in, and my brother and his wife and their four kids drove in, so now there is a really full house.
Today it was so fun to see all the cousins interact. My brother and his family have been in Boston for the past 6 years, and I haven't seen my sister-in-law or any of their kids in four years, so it was a good reunion. I have the best family. We went to church in the old La Canada building and we took up 2 1/2 rows!
This evening my mom officially kicked off cousins camp. She has so much energy, and the kids are all going to have a blast. Tomorrow my sisters and I and the little kids are going to stay in another house for a "sisters reunion," and let my mom do her thing with the big kids. It's gonna be a great week.
We drove this year instead of flying since Southwest failed me and didn't offer any good summer deals to LAX. But it was kind of fun driving, so it's OK. I meant to leave Wednesday morning. But Tuesday I didn't finish getting laundry done until way too late, and I figured getting a few hours of sleep before driving 1400 miles across the country was a good idea, so we didn't even start packing until Wednesday morning, and didn't get on the road until about 1:30 PM. But, it was a very nice drive across Texas. Really! The rain we had this past month resulted in very pretty scenery, even in the desert. And we drove through some pretty spectacular rainstorms which helped keep me awake. :-)
In Ft. Stockton we stopped at the most incompetent Taco Bell ever. First of all, they were sloooow. I've NEVER waited so long in a drive-through. Then, when we got our order, we realized they gave us 2 soft tacos instead of the 3 we ordered. So I sent Joseph in to get the third, and after another long wait he came out with it. Then, as we got on the road again, Mosey said, "Where's my food?" And I realized they completely missed his order as well. So back we drove, and I sent the boys in again (with the receipt) to get our last item. They came back a few minutes later an said that the guy wouldn't give it to them. He said, "Sorry, you should have asked for it the first time you came in. We can't give it to you now." So, I was very mad. I sent the boys in because it was raining like crazy, and there were no rugs inside the store and the tile was very slippery. But I got myself out of the car, made it into the restaurant without breaking my neck, and gave the manager a piece of my mind. It was kind of fun. I'm not sure my kids have ever seen me tell someone off before (in a polite, but firm way, of course). And we did get our item, and the manager came to open the door for us to make sure I didn't break my neck (I made sure to tell him I hadn't come in myself because the floor inside the restaurant was hazardous). All-in-all we ended up wasting almost an hour there. Grrr.
Anyway, we made it to El Paso by 11:00 PM, which wasn't too bad.
The next day we drove all the way to Los Angeles-- about 12 or 13 hours. It was a good drive, no issues. The boys were good. We listened to one whole audio book and started another one. I blasted U2 when I got tired. My boys call it "Rock star music." :-)
We got into La Canada at around 10:00 PM, and I got to see my new baby nephew Jacob! He was all of 10 days old and soooooo cute. Oh man, I love little babies. And big babies (this kiddo was 10 pounds when he was born!) And I also saw 3 of my sisters, 3 nieces, and my mom and dad, but they weren't quite as cute as the 10-day-old. :-)
The last couple of days have been good. The boys have gone swimming and reacquainted themselves with all their favorite places in Grandma and Grandpa's house. I've gotten to talk with my sisters and hold babies. Last night my other sister and her four kids flew in, and my brother and his wife and their four kids drove in, so now there is a really full house.
Today it was so fun to see all the cousins interact. My brother and his family have been in Boston for the past 6 years, and I haven't seen my sister-in-law or any of their kids in four years, so it was a good reunion. I have the best family. We went to church in the old La Canada building and we took up 2 1/2 rows!
This evening my mom officially kicked off cousins camp. She has so much energy, and the kids are all going to have a blast. Tomorrow my sisters and I and the little kids are going to stay in another house for a "sisters reunion," and let my mom do her thing with the big kids. It's gonna be a great week.
Wednesday, July 25, 2012
07/24/2012
1. Happy Pioneer Day! We made "flapjacks" for breakfast in celebration. I had grand plans for cornbread and homemade butter for dinner which didn't quite materialize. Joseph tried his best for the homemade butter, but it was stubborn again and never quite developed into butter. This happened last year, too, and it took about 3 hours of shaking before it finally turned. I don't get it.
2. Piano lessons in the morning. Then the rest of the day was spent in preparation for leaving for CA tomorrow. Brigham and Joseph (Brigham mostly) cleaned out and vacuumed the car (Joseph washed the inside of the windows). And then there was much wailing and gnashing of teeth, especially by 2 boys in particular, and so I sent all three of them to their rooms for an hour to lay down and "rest." Joseph actually said he'd rather stay home and skip the vacation than do any of the list of things we needed to do before we left. I'm not sure what to do about improving the attitude of some of my children when it comes to work. I mean, it doesn't seem normal that kids my boys' ages should be reduced to tears over a list of things like "Bring dirty laundry down to laundry room. Unload dishwasher. Vacuum living room and kitchen." I start to feel a little bit panicked-- one of my MAIN jobs as a mom is to help my boys learn how to work, and I'm apparently doing a pretty sucky job at that.
However, eventually all the laundry got done (and is not sitting in giant piles on the living room table). The dishwasher did get unloaded. I vacuumed the floors myself, but whatever. The oil is changed in the van. However, the bags are NOT yet packed nor is anything loaded into the car.
3. It's now 1:42 AM and I have a nine hour drive ahead of me tomorrow. I need to get to bed.
2. Piano lessons in the morning. Then the rest of the day was spent in preparation for leaving for CA tomorrow. Brigham and Joseph (Brigham mostly) cleaned out and vacuumed the car (Joseph washed the inside of the windows). And then there was much wailing and gnashing of teeth, especially by 2 boys in particular, and so I sent all three of them to their rooms for an hour to lay down and "rest." Joseph actually said he'd rather stay home and skip the vacation than do any of the list of things we needed to do before we left. I'm not sure what to do about improving the attitude of some of my children when it comes to work. I mean, it doesn't seem normal that kids my boys' ages should be reduced to tears over a list of things like "Bring dirty laundry down to laundry room. Unload dishwasher. Vacuum living room and kitchen." I start to feel a little bit panicked-- one of my MAIN jobs as a mom is to help my boys learn how to work, and I'm apparently doing a pretty sucky job at that.
However, eventually all the laundry got done (and is not sitting in giant piles on the living room table). The dishwasher did get unloaded. I vacuumed the floors myself, but whatever. The oil is changed in the van. However, the bags are NOT yet packed nor is anything loaded into the car.
3. It's now 1:42 AM and I have a nine hour drive ahead of me tomorrow. I need to get to bed.
Monday, July 23, 2012
07/23/2012
1. I went visiting teaching today with my new partner Pamela. As we parked, I noticed that there were two cars parked in the driveway in front of me, and I thought to myself, "We should park farther off to the side in case someone needs to back out." But I didn't say anything. And then, halfway through our visit, sure enough our visiting teachee's husband left for work, then came back 2 minutes later and said, "Well, I've just had a wreck." He was backing up and sideswiped Pamela's car. Man oh man, WHY didn't I say anything?? I feel really bad. I saw that coming and could have prevented it, but didn't do anything. Dumb, dumb, dumb.
2. In the afternoon the boys and I went to Highland Lanes to go bowling with the cub scouts. It's the first time I've taken the boys bowling in probably 2, maybe 3 years. They had a great time, and I was struck with how much they have grown up. The last time we went bowling, there were sometimes more tears than pins knocked down. I guess there are some good things about my boys getting bigger.
3. Hair cuts all around tonight. I wonder how much money I've saved our family by doing our own haircuts? I should take myself on vacation. :-)
2. In the afternoon the boys and I went to Highland Lanes to go bowling with the cub scouts. It's the first time I've taken the boys bowling in probably 2, maybe 3 years. They had a great time, and I was struck with how much they have grown up. The last time we went bowling, there were sometimes more tears than pins knocked down. I guess there are some good things about my boys getting bigger.
3. Hair cuts all around tonight. I wonder how much money I've saved our family by doing our own haircuts? I should take myself on vacation. :-)
07/22/2012
1. Our very late night last night resulted in a very late morning this morning. We didn't even make it out of the house until 9:00, when we should have been in our seats at church. Oh well.
2. After church I practiced my violin for a while, Ben went to ward council, and then we both took a nap. The boys went out to the back patio to demolish pieces of wood with a pick-axe. You know, your typical reverent Sabbath-afternoon kind of activity. I'm thinking we need another lesson on keeping the Sabbath Day holy. :-) Mosey also lit a bunch of matches and melted candle wax on the table. And there was altogether too much Civilization-playing. What happened to my no-computer-game-Sunday rule? I'm thinking Ben and I need to give ourselves another how-to-enforce-good-Sabbath-Day-behavior lesson. Kind of a parent-fail for the day...
3. I went ahead and made the rest of the Sabbath Day even better by being even more awesome and driving Joseph and Mosey both to tears in making them finish the practicing they didn't do on Friday afternoon before dinner. Why do some of these things seem so important and necessary at the moment, and so dumb afterward? Oh well, I guess I can try again next week.
2. After church I practiced my violin for a while, Ben went to ward council, and then we both took a nap. The boys went out to the back patio to demolish pieces of wood with a pick-axe. You know, your typical reverent Sabbath-afternoon kind of activity. I'm thinking we need another lesson on keeping the Sabbath Day holy. :-) Mosey also lit a bunch of matches and melted candle wax on the table. And there was altogether too much Civilization-playing. What happened to my no-computer-game-Sunday rule? I'm thinking Ben and I need to give ourselves another how-to-enforce-good-Sabbath-Day-behavior lesson. Kind of a parent-fail for the day...
3. I went ahead and made the rest of the Sabbath Day even better by being even more awesome and driving Joseph and Mosey both to tears in making them finish the practicing they didn't do on Friday afternoon before dinner. Why do some of these things seem so important and necessary at the moment, and so dumb afterward? Oh well, I guess I can try again next week.
07/21/2012
1. Archery in the morning. Joseph's coach really likes him. There's something really great about someone else recognizing the awesomeness of your child. :-)
2. Took Joseph to Walmart with me, and then to Buck's Bike Shop to look at new bikes. Joseph really wants to buy a new bike, and has been saving up money. However, the only bikes he can really afford are cheap Walmart bicycles which I'm afraid are not going to last. So we went to the bike shop and the guy there got a couple of different bikes out for Joseph to try. They are great bikes, and yes, a lot more expensive. However, Joseph does have a birthday coming up. Hmm... I sat outside watching him ride around-- it was 99 degrees and maybe not the best choice I could have made, as it wiped me out for the rest of the afternoon.
3. In the afternoon we went down to Zilker Park with our friends Melissa and Scott to see "The Sound of Music." I was an idiot and didn't ask about handicapped parking, so ended up parking way up away from the stage, making my poor 4-week-post-partum friend wheel me all over creation in 99 degree heat trying to figure out how to get me down to the stage. Finally we figured out my stupidity, meanwhile taking up all the time we were going to use to go out to eat before the show. Instead we ended up going to McDonalds, which the kids probably enjoyed more anyway, but I felt bad. Stupid wheelchair. As it was, when I parked in the handicapped area, it was easy to get to the stage, and the boys and I really enjoyed the show. The Daniels made it 1 1/2 hours until intermission, which I thought was really impressive with their crew of four kids under 5, including a one month old. :-) I am so glad that my boys like doing things like this. It's not really Ben's scene-- he was going to meet us for dinner and then go home. As it was, we spent so long trying to figure out parking, that he ended up just going back home, so he had the evening to himself. His comment to me on the phone: "I have a hard time understanding why anyone would even want to do this." :-) Ben is not a huge broadway musical fan, if you couldn't guess.
We ended up getting home shortly before midnight, which was a VERY late night for the boys. But one I think they will remember.
2. Took Joseph to Walmart with me, and then to Buck's Bike Shop to look at new bikes. Joseph really wants to buy a new bike, and has been saving up money. However, the only bikes he can really afford are cheap Walmart bicycles which I'm afraid are not going to last. So we went to the bike shop and the guy there got a couple of different bikes out for Joseph to try. They are great bikes, and yes, a lot more expensive. However, Joseph does have a birthday coming up. Hmm... I sat outside watching him ride around-- it was 99 degrees and maybe not the best choice I could have made, as it wiped me out for the rest of the afternoon.
3. In the afternoon we went down to Zilker Park with our friends Melissa and Scott to see "The Sound of Music." I was an idiot and didn't ask about handicapped parking, so ended up parking way up away from the stage, making my poor 4-week-post-partum friend wheel me all over creation in 99 degree heat trying to figure out how to get me down to the stage. Finally we figured out my stupidity, meanwhile taking up all the time we were going to use to go out to eat before the show. Instead we ended up going to McDonalds, which the kids probably enjoyed more anyway, but I felt bad. Stupid wheelchair. As it was, when I parked in the handicapped area, it was easy to get to the stage, and the boys and I really enjoyed the show. The Daniels made it 1 1/2 hours until intermission, which I thought was really impressive with their crew of four kids under 5, including a one month old. :-) I am so glad that my boys like doing things like this. It's not really Ben's scene-- he was going to meet us for dinner and then go home. As it was, we spent so long trying to figure out parking, that he ended up just going back home, so he had the evening to himself. His comment to me on the phone: "I have a hard time understanding why anyone would even want to do this." :-) Ben is not a huge broadway musical fan, if you couldn't guess.
We ended up getting home shortly before midnight, which was a VERY late night for the boys. But one I think they will remember.
Saturday, July 21, 2012
Houston report
OK, it's been a week since I've updated my blog and a lot has happened.
To make a long (long) story short, here's the facebook update I posted from my hospital room on Thursday afternoon:
My MRI is clear! For anyone who was waiting to hear, this is great news. No progression of my MS for four years, thanks to the miracles of modern medicine. I wouldn't recommend a bone marrow transplant for a fun time, but I'm sure grateful i got this second chance at life. After 4 days, 4 doctors' visits, 1 MRI, 1 leukopheresis, 3 blood draws, 4 IVs, and 1 spinal tap, my appointments are done and i don't have to come back to Houston for another year!!! Yay!!
Now for the nitty-gritty details that probably no one really cares about, but I feel compelled to write anyway. :-) There are pictures, too!
Last Saturday evening, my sister Rosalynde and three of her children drove down from St. Louis. It is a long 12 hour drive with a 3, 6, and 8 year old, especially when the portable DVD player broke partway through the drive. But they are good sports and made it here just fine.
On Sunday we went to church. I had to leave partway through with Mosey who had a bad stomach ache. I was very worried it would turn into a stomach virus and wreak havoc with our trip to Houston, but after a few hours he was back to himself. We ate lunch, packed our suitcases, loaded up the car, and headed out to Houston in the midst of a huge downpour.
The drive to Houston was fine, once we were out of the rain. In fact, it was downright beautiful, after all the rain we've had the past few weeks. And having my sister to talk to mostly distracted me from the mounting anxiety I usually feel as I get closer to the city.
We stayed in a Best Western-- actually the same one I stayed at four years ago when I went in to get my central line placed and my first apheresis. What a difference four years makes!
On Monday morning the kids enjoyed their beloved hotel breakfast, and then went swimming for a couple of hours before Rosalynde and I left for MD Anderson. We got a call that Rachel (our little sister) was finally in labor! Happy news for a stressful morning.
I got blood drawn at the fast track lab, and then hung out in the Sun Dial for a couple of hours until my appointment with Dr. Popat. Meanwhile Rosalynde took the kids to a park, then to lunch, and then settled them into our hotel room watching the National Geographic channel before coming to join me.
Everything was fine with my appointments. They got me in to see Dr. Popat as fast as they ever have-- I was done with that appointment in an hour, which is truly a miracle.
MD Anderson is a hard place for me, which makes me feel like a jerk, because I realize how very fortunate I am compared to all the other patients there, especially the ones waiting at the 8th floor fast track lab and the stem cell clinic. That's partly why it's hard for me-- to be so dramatically confronted with the pain and sadness of so many people. Not one of them wants to be there. But everyone was nice, the volunteers in the Sun Dial hospitality room were as nice as ever-- one cute old man in particular was very solicitous of me and got me ice water and a pillow so I could lay back and rest on the chair I was on.
Anyway, after seeing Dr. Popat and checking in at the apheresis clinic to get checked out for my leukopheresis on Wednesday, we went back to the hotel and picked up the kids and went to the water wall. That is one of my favorite places in Houston.
Of course, with all the rain we've had, the big grassy area in front of the water wall was muddy, and before long 3 out of the 6 children were pretty well covered in mud. Oh well. :-)
Here are some pictures. Some kids were less excited than others to pose for pictures. :-)
The kids enjoyed a rousing game of "Red Rover" before we left the park. And no one broke their arm-- bonus!
After rinsing off as best we could using water from the fountain, we headed over to the Galleria for dinner at the food court, and then went back to the hotel.
Tuesday morning I was the most nervous. I had my neurological workup with Dr. Hutton at 9:30. Rosalynde took me over there and helped me calm down so my heart rate wasn't through the roof when the nurse took my vitals. :-) Everything went fine, though. The neurological testing they did (25 minute timed walking test, math/memory test, dexterity peg test, and then the regular neurological physical exam) went smoothly, and apparently showed no change from a year ago. They drew about 20 vials of blood for who knows what mysterious research purposes, and then I was free to go. There is no logical reason for me to get so anxious and nervous for these appointments! I know that, but I can't control it. The only snag was my 100 meter walking test. Dr. Hutton has let me video this at home for the last couple of years. So last Thursday night I set up my video camera and set off on my 10 lengths of the family room and hallway. But on my last lap, I lost my balance and had to lean up against the wall, which would technically cut off my distance at 77 meters. However, this has happened before, and I just waited a couple of days and tried again with no problem. The trouble this year was that I didn't get a chance to try again before we had to go to Houston. I hoped Dr. Hutton would just give me a pass, but I knew he wouldn't. However, he is letting me try again at home sometime over the next month and send him the video via email so I don't have to drive out there again. Thank goodness.
After my neuro appointments, we went back to the hotel and picked up the kids. We stopped at Krogers to pick up some groceries for lunch, and then drove down to the Houston Museum of Natural Science. We had a picnic in front of the museum, and then spent the rest of the afternoon enjoying the museum. It is a great museum! We watched the huge Foucault's Pendulum knock over a few pegs, went through the dinosaur hall, the energy hall (which was really cool-- it was all about oil drills and wells and refineries and I learned so much!), and the gem hall (which was especially exciting when the power for the entire museum went out while we were in the precious gems vault and left in the pitch black until the emergency generators kicked in). Then we went down to the basement to see the real Egyptian mummy (which was pretty thrilling for my boys who have been on a Rick Riordan kick this summer). Before we left the museum (just before closing), Jack and Brigham took a ride on the gyro-something-or-other which looked terrifying, but was apparently fun for them. It's this giant gyroscope in which the boys were strapped in and then sent on a whirling and tumbling ride before finally coming to a stop. After watching a few of these rides, none of the other kids were too keen on giving it a go. :-)
Here are some pictures.
Brigham was having a very serious conversation with this Zebra. :-)
That's Mara, Miles, Jack, and Brigham watching museum-goers down below. At one point (not here), the kids were all watching the giant pendulum from an upper balcony when Miles the monkey climbed up nearly to the top of the railing and about put me into cardiac arrest. Three year olds are scary!!
After the museum, Rosalynde dropped me off at Texas Children's for my MRI and then took the boys home to the hotel for pizza and a movie. My MRI went just fine, aside from the nurse messing up on my IV and having to poke me several times in the hand. Ouch. I'm a pro when it comes to needle sticks, but I still do hate getting IVs placed in my hands. It just hurts. But the MRI was fine-- just over an hour this time, so not too bad. I got to watch the first half of "Enchanted" on the super-cool movie goggles. Then I was done and Rosalynde came to pick me up and I had another appointment checked off my list!
Wednesday morning was my leukopheresis at MD Anderson. Rosalynde dropped me off at 8:30, but in more typical MD Anderson fashion (at least on the 8th floor of the main building), it was more than an hour before the nurse was ready to get me all hooked up. Rosalynde got the kids settled at the hotel and then came and sat with me through most of the procedure. In the leukopheresis, they put IV's in both my elbows, drawing blood out from one arm, circulating it through a big extraction machine where the stem cells are filtered out, before going back into my other arm. They had to circulate my blood volume only one time, so I was hooked up to the machine for a little over an hour-- not enough time to get bone-chilled-cold like I did when they did the stem cell extraction before my transplant. The worst thing about it was the giant needles in my arms-- I couldn't bend my arms at all lest the needle puncture through my vein (makes me shiver to think about it), and by the end of the procedure my arms were killing me. But again, conversation with my sister made it all go so much faster than it would otherwise have. :-)
After that, we left MD Anderson for the last time this year (yay!), and headed back to the hotel to pick up the kids and drive over to the Houston Space Center. This ended up being the highlight of the trip for my boys, and it was really, really cool. I had been one other time-- about a million years ago when I was 17 and my family drove out to Houston to drop me off at Rice University for my freshman year. It was pretty cool coming back again, this time with my own children. Joseph loved it, especially the tour of Mission Control. The Space Center has lots of great exhibits and films and presentations. The kids all got to see moon rocks and walk through a mock-up space shuttle and ride in a flight simulator. The flight simulator was a bit too realistic for Mosey who kind of freaked out when it turned upside down the first time. Poor kid was pretty upset at the end of the ride. Happily the other kids thought it was great. There were TV screens showing the people inside the simulators, and it was really fun to watch Joseph and Jack and Brigham pretty much having the time of their lives. :-) We stayed until the very bitter end (I love feeling like we got our money's worth) before heading out by way of the gift shop where Mosey relieved himself of some of the money burning a hole in his pocket by buying a model Saturn V rocket which he has been playing with nonstop ever since, so I guess it was $3.50 well spent.
Here are some pictures:
Stair-step kids! It was so fun to see this gaggle of kids all together. I sure would have loved to have had a few more. These kids could just about pass for siblings I think. Poor Miss Mara was totally outnumbered this trip, but it didn't seem to phase her. She is a cool girl.
Brigham and the moon rocks. In the picture below, he's touching a rock from the moon. Cool!
Here are the kids on the tram tour to see Mission Control and Saturn V.
These cute kids got to sit up in the front car with me, since I was in my wheelchair.
Rosalynde took the other kids in the second car with her. Jack and Joseph were pretty inseparable this trip. :-)
I'm pretty sure these three are up to no good. :-)
Mosey with his camo hat and his bat, both of which have been going everywhere with him recently.
Can you tell how excited Mosey was to be posing for a picture on his mom's lap? I'm attempting to put myself in at least ONE picture per trip, so Brigham was nice enough to take this one for me.
Mosey trying on a space helmet and trying out his newest weird face. :-)
After our day at the Space Center, we drove back toward the medical center, stopped by Taco Cabana for fajitas and then went back to the hotel to eat and watch Star Trek. I was so tired, but it was a fun day.
Thursday morning Rosalynde and her kids headed back up to St. Louis. We went down to the lobby for one final hotel breakfast together before Rosalynde loaded up her car, strapped in her kids, and braved the drive back home. Jack and Elena were going on a Welch family church history tour the very next day, so Rosalynde HAD to get back to St. Louis that night. I know all the kids would have loved one more day together, but it won't be long before they see each other at Cousin's Camp at my mom's house.
Her drive back home ended up being rather grueling as her GPS took her a different route in which they got caught in a THREE HOUR traffic jam when the interstate was shut down in Arkansas before they got to the Missouri border. They left at 8:00 AM and didn't get back until 1:00 in the morning. They did so well, though-- those kids are all super-heroes and my sister is a saint.
As for us, after breakfast we went back up to our room, got all packed up, and then I left them in the hotel room and wheeled myself down the street to the Baylor Clinic (it was so lucky-- our hotel room was right next door) for my lumbar puncture. I got there at 9:30 for a supposedly 10:00 procedure, but they didn't get me into the room until more like 11:00. I had been hoping I'd be done by 12:00, so I could get back to the hotel room and check-out, but that was not to be.
The lumbar puncture was fine. It's not the most comfortable thing in the world, but the doctor did a great job and the headache wasn't too bad. They are super-strict though, and made me stay lying flat for TWO HOURS after the procedure. That's a long time. And I have to say, it's a pretty awful feeling to be laying on a hospital bed, being wheeled out to recovery for a mandatory 2 hour period, and to suddenly realize that you have to pee. :-) Thankfully, I had a nurse who took pity on me and let me up into my wheelchair to use the bathroom after only 20 minutes.
The very best part of the day came when Susan, Dr. Hutton's research nurse, came to pick up the vials of spinal fluid. She came bearing excellent news of my MRI-- no changes from last year! I had been so nervous all morning long-- not because of the spinal tap, but because I knew I'd be getting the results of my MRI (Susan told me she'd have them by Thursday when I talked to her at my Tuesday neuro appointment). My heart was going a hundred miles an hour when I heard her come into the room. But it was blessedly good news, and even more blessedly, I don't have to go through the torture of waiting for days for the phone call from the nurse telling me my results. As soon as she left I was on the phone to Ben and my mom to tell them the good news. I felt like a thousand pounds had lifted from my shoulders.
Meanwhile, my friend Stephanie arrived from Austin and picked up my boys from the hotel. She took them to lunch and to Half-Price Books (my boys love and adore Stephanie because she always treats them to something special), and then came back to Baylor to pick me up. The clinic would not let me leave without a driver coming to get me, and in fact they were pretty annoyed with me that I hadn't brought her with me to the appointment. That seems crazy to me-- she was supposed to sit there for four and a half hours in a hospital just so she could drive me home? The nurse was very stern, lecturing me that I really should have brought my driver to the clinic WITH me, and she'd have to talk to the radiologist to see if she would go ahead with the procedure or make me reschedule. Whatever. The first spinal tap I ever had was just in Dr. Hutton's office-- I sat up, leaning against a pillow, he put the needle in, got the fluid, I lay back down for 15 minutes, and then walked out of the doctor's office and drove myself home. So it seemed like all the precautions here were a bit of an overkill. But I was pretty sore afterward, and it was nice not to have to drive home myself, and even nicer because I got to talk to my friend all the way back home.
Our drive home was uneventful except for one quick backtrack to the hotel to pick up my crutches that had accidentally been left in our room (thankfully we hadn't even gotten on the freeway before we realized they were missing). On our way out of Houston we stopped at Sonic for a celebratory cream slush, and pulled in front of our house at around 6:45 PM. I was HOME! No more Houston for another year!
To make a long (long) story short, here's the facebook update I posted from my hospital room on Thursday afternoon:
My MRI is clear! For anyone who was waiting to hear, this is great news. No progression of my MS for four years, thanks to the miracles of modern medicine. I wouldn't recommend a bone marrow transplant for a fun time, but I'm sure grateful i got this second chance at life. After 4 days, 4 doctors' visits, 1 MRI, 1 leukopheresis, 3 blood draws, 4 IVs, and 1 spinal tap, my appointments are done and i don't have to come back to Houston for another year!!! Yay!!
Now for the nitty-gritty details that probably no one really cares about, but I feel compelled to write anyway. :-) There are pictures, too!
Last Saturday evening, my sister Rosalynde and three of her children drove down from St. Louis. It is a long 12 hour drive with a 3, 6, and 8 year old, especially when the portable DVD player broke partway through the drive. But they are good sports and made it here just fine.
On Sunday we went to church. I had to leave partway through with Mosey who had a bad stomach ache. I was very worried it would turn into a stomach virus and wreak havoc with our trip to Houston, but after a few hours he was back to himself. We ate lunch, packed our suitcases, loaded up the car, and headed out to Houston in the midst of a huge downpour.
The drive to Houston was fine, once we were out of the rain. In fact, it was downright beautiful, after all the rain we've had the past few weeks. And having my sister to talk to mostly distracted me from the mounting anxiety I usually feel as I get closer to the city.
We stayed in a Best Western-- actually the same one I stayed at four years ago when I went in to get my central line placed and my first apheresis. What a difference four years makes!
On Monday morning the kids enjoyed their beloved hotel breakfast, and then went swimming for a couple of hours before Rosalynde and I left for MD Anderson. We got a call that Rachel (our little sister) was finally in labor! Happy news for a stressful morning.
I got blood drawn at the fast track lab, and then hung out in the Sun Dial for a couple of hours until my appointment with Dr. Popat. Meanwhile Rosalynde took the kids to a park, then to lunch, and then settled them into our hotel room watching the National Geographic channel before coming to join me.
Everything was fine with my appointments. They got me in to see Dr. Popat as fast as they ever have-- I was done with that appointment in an hour, which is truly a miracle.
MD Anderson is a hard place for me, which makes me feel like a jerk, because I realize how very fortunate I am compared to all the other patients there, especially the ones waiting at the 8th floor fast track lab and the stem cell clinic. That's partly why it's hard for me-- to be so dramatically confronted with the pain and sadness of so many people. Not one of them wants to be there. But everyone was nice, the volunteers in the Sun Dial hospitality room were as nice as ever-- one cute old man in particular was very solicitous of me and got me ice water and a pillow so I could lay back and rest on the chair I was on.
Anyway, after seeing Dr. Popat and checking in at the apheresis clinic to get checked out for my leukopheresis on Wednesday, we went back to the hotel and picked up the kids and went to the water wall. That is one of my favorite places in Houston.
Of course, with all the rain we've had, the big grassy area in front of the water wall was muddy, and before long 3 out of the 6 children were pretty well covered in mud. Oh well. :-)
Here are some pictures. Some kids were less excited than others to pose for pictures. :-)
After rinsing off as best we could using water from the fountain, we headed over to the Galleria for dinner at the food court, and then went back to the hotel.
Tuesday morning I was the most nervous. I had my neurological workup with Dr. Hutton at 9:30. Rosalynde took me over there and helped me calm down so my heart rate wasn't through the roof when the nurse took my vitals. :-) Everything went fine, though. The neurological testing they did (25 minute timed walking test, math/memory test, dexterity peg test, and then the regular neurological physical exam) went smoothly, and apparently showed no change from a year ago. They drew about 20 vials of blood for who knows what mysterious research purposes, and then I was free to go. There is no logical reason for me to get so anxious and nervous for these appointments! I know that, but I can't control it. The only snag was my 100 meter walking test. Dr. Hutton has let me video this at home for the last couple of years. So last Thursday night I set up my video camera and set off on my 10 lengths of the family room and hallway. But on my last lap, I lost my balance and had to lean up against the wall, which would technically cut off my distance at 77 meters. However, this has happened before, and I just waited a couple of days and tried again with no problem. The trouble this year was that I didn't get a chance to try again before we had to go to Houston. I hoped Dr. Hutton would just give me a pass, but I knew he wouldn't. However, he is letting me try again at home sometime over the next month and send him the video via email so I don't have to drive out there again. Thank goodness.
After my neuro appointments, we went back to the hotel and picked up the kids. We stopped at Krogers to pick up some groceries for lunch, and then drove down to the Houston Museum of Natural Science. We had a picnic in front of the museum, and then spent the rest of the afternoon enjoying the museum. It is a great museum! We watched the huge Foucault's Pendulum knock over a few pegs, went through the dinosaur hall, the energy hall (which was really cool-- it was all about oil drills and wells and refineries and I learned so much!), and the gem hall (which was especially exciting when the power for the entire museum went out while we were in the precious gems vault and left in the pitch black until the emergency generators kicked in). Then we went down to the basement to see the real Egyptian mummy (which was pretty thrilling for my boys who have been on a Rick Riordan kick this summer). Before we left the museum (just before closing), Jack and Brigham took a ride on the gyro-something-or-other which looked terrifying, but was apparently fun for them. It's this giant gyroscope in which the boys were strapped in and then sent on a whirling and tumbling ride before finally coming to a stop. After watching a few of these rides, none of the other kids were too keen on giving it a go. :-)
Here are some pictures.
After the museum, Rosalynde dropped me off at Texas Children's for my MRI and then took the boys home to the hotel for pizza and a movie. My MRI went just fine, aside from the nurse messing up on my IV and having to poke me several times in the hand. Ouch. I'm a pro when it comes to needle sticks, but I still do hate getting IVs placed in my hands. It just hurts. But the MRI was fine-- just over an hour this time, so not too bad. I got to watch the first half of "Enchanted" on the super-cool movie goggles. Then I was done and Rosalynde came to pick me up and I had another appointment checked off my list!
Wednesday morning was my leukopheresis at MD Anderson. Rosalynde dropped me off at 8:30, but in more typical MD Anderson fashion (at least on the 8th floor of the main building), it was more than an hour before the nurse was ready to get me all hooked up. Rosalynde got the kids settled at the hotel and then came and sat with me through most of the procedure. In the leukopheresis, they put IV's in both my elbows, drawing blood out from one arm, circulating it through a big extraction machine where the stem cells are filtered out, before going back into my other arm. They had to circulate my blood volume only one time, so I was hooked up to the machine for a little over an hour-- not enough time to get bone-chilled-cold like I did when they did the stem cell extraction before my transplant. The worst thing about it was the giant needles in my arms-- I couldn't bend my arms at all lest the needle puncture through my vein (makes me shiver to think about it), and by the end of the procedure my arms were killing me. But again, conversation with my sister made it all go so much faster than it would otherwise have. :-)
After that, we left MD Anderson for the last time this year (yay!), and headed back to the hotel to pick up the kids and drive over to the Houston Space Center. This ended up being the highlight of the trip for my boys, and it was really, really cool. I had been one other time-- about a million years ago when I was 17 and my family drove out to Houston to drop me off at Rice University for my freshman year. It was pretty cool coming back again, this time with my own children. Joseph loved it, especially the tour of Mission Control. The Space Center has lots of great exhibits and films and presentations. The kids all got to see moon rocks and walk through a mock-up space shuttle and ride in a flight simulator. The flight simulator was a bit too realistic for Mosey who kind of freaked out when it turned upside down the first time. Poor kid was pretty upset at the end of the ride. Happily the other kids thought it was great. There were TV screens showing the people inside the simulators, and it was really fun to watch Joseph and Jack and Brigham pretty much having the time of their lives. :-) We stayed until the very bitter end (I love feeling like we got our money's worth) before heading out by way of the gift shop where Mosey relieved himself of some of the money burning a hole in his pocket by buying a model Saturn V rocket which he has been playing with nonstop ever since, so I guess it was $3.50 well spent.
Here are some pictures:
Here are the kids on the tram tour to see Mission Control and Saturn V.
Rosalynde took the other kids in the second car with her. Jack and Joseph were pretty inseparable this trip. :-)
The whole gang in front of Saturn V. It is so unbelievably HUGE.
After our day at the Space Center, we drove back toward the medical center, stopped by Taco Cabana for fajitas and then went back to the hotel to eat and watch Star Trek. I was so tired, but it was a fun day.
Thursday morning Rosalynde and her kids headed back up to St. Louis. We went down to the lobby for one final hotel breakfast together before Rosalynde loaded up her car, strapped in her kids, and braved the drive back home. Jack and Elena were going on a Welch family church history tour the very next day, so Rosalynde HAD to get back to St. Louis that night. I know all the kids would have loved one more day together, but it won't be long before they see each other at Cousin's Camp at my mom's house.
Her drive back home ended up being rather grueling as her GPS took her a different route in which they got caught in a THREE HOUR traffic jam when the interstate was shut down in Arkansas before they got to the Missouri border. They left at 8:00 AM and didn't get back until 1:00 in the morning. They did so well, though-- those kids are all super-heroes and my sister is a saint.
As for us, after breakfast we went back up to our room, got all packed up, and then I left them in the hotel room and wheeled myself down the street to the Baylor Clinic (it was so lucky-- our hotel room was right next door) for my lumbar puncture. I got there at 9:30 for a supposedly 10:00 procedure, but they didn't get me into the room until more like 11:00. I had been hoping I'd be done by 12:00, so I could get back to the hotel room and check-out, but that was not to be.
The lumbar puncture was fine. It's not the most comfortable thing in the world, but the doctor did a great job and the headache wasn't too bad. They are super-strict though, and made me stay lying flat for TWO HOURS after the procedure. That's a long time. And I have to say, it's a pretty awful feeling to be laying on a hospital bed, being wheeled out to recovery for a mandatory 2 hour period, and to suddenly realize that you have to pee. :-) Thankfully, I had a nurse who took pity on me and let me up into my wheelchair to use the bathroom after only 20 minutes.
The very best part of the day came when Susan, Dr. Hutton's research nurse, came to pick up the vials of spinal fluid. She came bearing excellent news of my MRI-- no changes from last year! I had been so nervous all morning long-- not because of the spinal tap, but because I knew I'd be getting the results of my MRI (Susan told me she'd have them by Thursday when I talked to her at my Tuesday neuro appointment). My heart was going a hundred miles an hour when I heard her come into the room. But it was blessedly good news, and even more blessedly, I don't have to go through the torture of waiting for days for the phone call from the nurse telling me my results. As soon as she left I was on the phone to Ben and my mom to tell them the good news. I felt like a thousand pounds had lifted from my shoulders.
Meanwhile, my friend Stephanie arrived from Austin and picked up my boys from the hotel. She took them to lunch and to Half-Price Books (my boys love and adore Stephanie because she always treats them to something special), and then came back to Baylor to pick me up. The clinic would not let me leave without a driver coming to get me, and in fact they were pretty annoyed with me that I hadn't brought her with me to the appointment. That seems crazy to me-- she was supposed to sit there for four and a half hours in a hospital just so she could drive me home? The nurse was very stern, lecturing me that I really should have brought my driver to the clinic WITH me, and she'd have to talk to the radiologist to see if she would go ahead with the procedure or make me reschedule. Whatever. The first spinal tap I ever had was just in Dr. Hutton's office-- I sat up, leaning against a pillow, he put the needle in, got the fluid, I lay back down for 15 minutes, and then walked out of the doctor's office and drove myself home. So it seemed like all the precautions here were a bit of an overkill. But I was pretty sore afterward, and it was nice not to have to drive home myself, and even nicer because I got to talk to my friend all the way back home.
Our drive home was uneventful except for one quick backtrack to the hotel to pick up my crutches that had accidentally been left in our room (thankfully we hadn't even gotten on the freeway before we realized they were missing). On our way out of Houston we stopped at Sonic for a celebratory cream slush, and pulled in front of our house at around 6:45 PM. I was HOME! No more Houston for another year!
Thursday, July 12, 2012
07/12/2012
1. I went out of my room this morning to find Brigham hard at work cleaning the kitchen. UNASKED. He did a really good job of it, too. He is such a good boy. I sat down at the kitchen table to slice up some bananas, and when he saw the pile of banana peels on the table, I could tell that he was sad I was messing up his beautifully clean table. That made me so happy. Know why? Because one of my biggest goals for having the boys help out more around the house is for them to feel more ownership of the house-- to care about keeping it looking clean, because they were the ones who cleaned it! And it's working! At least, for Brigham.
I did wash off the kitchen table again after I was done with the bananas. :-)
2. Brigham was also the first to get all his practicing done. He's fully embraced the idea of getting work done first so he has lots of uninterrupted time to play.
3. In the afternoon I took the boys and Natasha down to the boulder park to explore. On the way to pick up Natasha, I gave the boys strict instructions NOT to do anything stupid, and to keep a close eye on Natasha to make sure she didn't get hurt. There is a lot of water down there, and a huge waterfall pouring down the boulders. I haven't seen it, but I can imagine it could be dangerous, and that makes me nervous because I can't be down there, and can't supervise or help if someone does get hurt. Joseph assured me he had a pocketful of band-aids just in case. :-) The didn't get hurt and spent almost 2 hours down there, climbing around, finding snake skins, picking flowers, and getting very, very wet. Mosey found the coolest looking walking stick/staff down there. I'm glad they went, and wish I could have gone with them!!!
4. The boys have all been getting along pretty well recently. Except for some instances of passive aggressive stuff that is hard for me to know how to deal with. This morning, Joseph and Brigham were drawing. I think Brigham was drawing a robot, and Joseph was drawing a battleship. From what I could tell, they got into a "discussion" about the plausibility of the designs they were making, mostly questioning the plausibility of the other's design. :-) So (and I'm practicing piano with Mosey at the time, so I'm not really sure how it went down), Joseph drew this passive-aggressive picture and gave it to Brigham:
Not surprisingly, Brigham ripped it up.
Then Joseph got mad, saying that Brigham ripped up his drawing. So Joseph got another drawing of Brigham's, and scribbled on the back of it. Which didn't help matters.
Then Joseph made another drawing:
And at this point they came and got me involved. I didn't see the first drawing (it was in the trash), or I might have changed my response. Anyway, I got mad at both of them and told them they are not allowed to rip up or scribble on any drawing except ones they made themselves. Which seems reasonable, except that I believe Joseph did actually give that first drawing to Brigham.
Anyway, this kind of picking on each other is frustrating and makes me sad. I want them to be sunshine and love and happiness toward each other all the time. Is that too much to ask? :-)
The cartoons are pretty funny. I told Brigham he should be flattered, because Joseph obviously believes that Brigham is a genius, and is better than everyone at everything. I don't think he was buying that, though.
I did wash off the kitchen table again after I was done with the bananas. :-)
2. Brigham was also the first to get all his practicing done. He's fully embraced the idea of getting work done first so he has lots of uninterrupted time to play.
3. In the afternoon I took the boys and Natasha down to the boulder park to explore. On the way to pick up Natasha, I gave the boys strict instructions NOT to do anything stupid, and to keep a close eye on Natasha to make sure she didn't get hurt. There is a lot of water down there, and a huge waterfall pouring down the boulders. I haven't seen it, but I can imagine it could be dangerous, and that makes me nervous because I can't be down there, and can't supervise or help if someone does get hurt. Joseph assured me he had a pocketful of band-aids just in case. :-) The didn't get hurt and spent almost 2 hours down there, climbing around, finding snake skins, picking flowers, and getting very, very wet. Mosey found the coolest looking walking stick/staff down there. I'm glad they went, and wish I could have gone with them!!!
4. The boys have all been getting along pretty well recently. Except for some instances of passive aggressive stuff that is hard for me to know how to deal with. This morning, Joseph and Brigham were drawing. I think Brigham was drawing a robot, and Joseph was drawing a battleship. From what I could tell, they got into a "discussion" about the plausibility of the designs they were making, mostly questioning the plausibility of the other's design. :-) So (and I'm practicing piano with Mosey at the time, so I'm not really sure how it went down), Joseph drew this passive-aggressive picture and gave it to Brigham:
Then Joseph got mad, saying that Brigham ripped up his drawing. So Joseph got another drawing of Brigham's, and scribbled on the back of it. Which didn't help matters.
Then Joseph made another drawing:
Anyway, this kind of picking on each other is frustrating and makes me sad. I want them to be sunshine and love and happiness toward each other all the time. Is that too much to ask? :-)
The cartoons are pretty funny. I told Brigham he should be flattered, because Joseph obviously believes that Brigham is a genius, and is better than everyone at everything. I don't think he was buying that, though.
few more pictures
Here are a couple of more.
I took these on the night of the 4th, and I like the moody feel of them.
This is from last weekend when we got our new books for this coming school year. The boys will have read all of these by the time the school year ends! Joseph was so excited to look through everything. He's already started on the first book assigned.
And here's Mosey in his new camouflage hat. He made that lego helicopter he's playing with. Mosey loves, loves, loves legos and can build really great things.
I took these on the night of the 4th, and I like the moody feel of them.
This is from last weekend when we got our new books for this coming school year. The boys will have read all of these by the time the school year ends! Joseph was so excited to look through everything. He's already started on the first book assigned.
And here's Mosey in his new camouflage hat. He made that lego helicopter he's playing with. Mosey loves, loves, loves legos and can build really great things.
picture pity party
I didn't get any good shots of my family on the 4th of July.
One of the things I really hate about MS is that I miss all the good pictures I could take. There are a couple of other mommy-bloggers that I follow who post the most wonderful photographs of their lives, and I get so jealous. I want to take pictures like those. I want to make have those memories (and for me, pictures are essential for preserving memories). I can SEE how to get the good shot, I just can't GET there, and it is so maddening.
On the night of the 4th, we spread out a sheet on a strip of grass on a slope just below where the orchestra was playing. It was a good spot, but I couldn't get around on my wheelchair at all because there were hundreds of people all around. Finally I sat down on the sheet, and then I really was stuck. Any pictures I took had to be taken from right where I was. So, no good pictures. Just super boring face shots. Ugh.
I mean, it's not like I'm going to lack in photographic evidence of my kids' childhoods, I know that. But I really love photography, and I love getting the perfect angle, the shot that really tells the story. And 90% of the time I can't do it. I love the idea of taking a photo a day, but since I'm confined to the SAME height, and the SAME stupid route around my house in my wheelchair, my options for photographs are very limited. Good photography is all about finding the right angle, the right vantage point, the right light. And doing that requires you to be able to MOVE.
My boys do awesome things outside that I can't get to. Today they went down to the boulder park which I am sure is the very most beautiful it ever could be with all the water we've had. I can imagine the pictures I could take there! Not to mention actually getting to be with my children out there in nature instead of waiting for them in my car.
I've adjusted pretty well to my limitations with MS. I can still do a lot of what I could do before, even if it is differently. And I hate even to complain because I know how very much more I could be limited. And maybe I will be someday, and thinking back on these days as the "good old days."
But there are some things I haven't adjusted to. I'll tell you want I miss the most. I miss running. I miss it so much. I look at everyone around me who *can* run, and I can't understand why they don't! :-) I miss the quiet of the night, the time alone to think. I miss experiencing the different kinds of weather. I miss all the things there are to see and smell (it's interesting how scents are so much more noticeable at night when visual input is reduced) on a 6 mile loop through the neighborhood or on trails. I miss pushing my body to go faster. I miss the feeling of exhilaration when you really hit your stride. I miss sweating! I can't ever get hot enough to sweat, because if I do I'll be collapsed on the floor unable to see or move. I miss running a lot.
(On a side note: I had a dream the other night about running-- it was a variation on a theme I have in lots of dreams-- I suddenly realize I *can* walk, and I wonder why I thought it was so hard before. But in this dream, I realized that even if I couldn't walk, I could run! I wondered whether I'd be allowed to run for my walking test in Houston instead of walk. :-))
And the other thing I really miss is photography. Taking the kind of pictures that are really satisfying to me is physically exhausting, and often simply physically impossible.
So, that's my pity party for tonight. I should just stop looking at those other blogs that make me so sad. But I probably won't, because I love beautiful photography.
Anyway, here are my pathetic attempts at pictures of my boys on the 4th of July:
Mosey is the king of weird faces. It used to be Brigham, but Mosey's got him beat. :-)
One of the things I really hate about MS is that I miss all the good pictures I could take. There are a couple of other mommy-bloggers that I follow who post the most wonderful photographs of their lives, and I get so jealous. I want to take pictures like those. I want to make have those memories (and for me, pictures are essential for preserving memories). I can SEE how to get the good shot, I just can't GET there, and it is so maddening.
On the night of the 4th, we spread out a sheet on a strip of grass on a slope just below where the orchestra was playing. It was a good spot, but I couldn't get around on my wheelchair at all because there were hundreds of people all around. Finally I sat down on the sheet, and then I really was stuck. Any pictures I took had to be taken from right where I was. So, no good pictures. Just super boring face shots. Ugh.
I mean, it's not like I'm going to lack in photographic evidence of my kids' childhoods, I know that. But I really love photography, and I love getting the perfect angle, the shot that really tells the story. And 90% of the time I can't do it. I love the idea of taking a photo a day, but since I'm confined to the SAME height, and the SAME stupid route around my house in my wheelchair, my options for photographs are very limited. Good photography is all about finding the right angle, the right vantage point, the right light. And doing that requires you to be able to MOVE.
My boys do awesome things outside that I can't get to. Today they went down to the boulder park which I am sure is the very most beautiful it ever could be with all the water we've had. I can imagine the pictures I could take there! Not to mention actually getting to be with my children out there in nature instead of waiting for them in my car.
I've adjusted pretty well to my limitations with MS. I can still do a lot of what I could do before, even if it is differently. And I hate even to complain because I know how very much more I could be limited. And maybe I will be someday, and thinking back on these days as the "good old days."
But there are some things I haven't adjusted to. I'll tell you want I miss the most. I miss running. I miss it so much. I look at everyone around me who *can* run, and I can't understand why they don't! :-) I miss the quiet of the night, the time alone to think. I miss experiencing the different kinds of weather. I miss all the things there are to see and smell (it's interesting how scents are so much more noticeable at night when visual input is reduced) on a 6 mile loop through the neighborhood or on trails. I miss pushing my body to go faster. I miss the feeling of exhilaration when you really hit your stride. I miss sweating! I can't ever get hot enough to sweat, because if I do I'll be collapsed on the floor unable to see or move. I miss running a lot.
(On a side note: I had a dream the other night about running-- it was a variation on a theme I have in lots of dreams-- I suddenly realize I *can* walk, and I wonder why I thought it was so hard before. But in this dream, I realized that even if I couldn't walk, I could run! I wondered whether I'd be allowed to run for my walking test in Houston instead of walk. :-))
And the other thing I really miss is photography. Taking the kind of pictures that are really satisfying to me is physically exhausting, and often simply physically impossible.
So, that's my pity party for tonight. I should just stop looking at those other blogs that make me so sad. But I probably won't, because I love beautiful photography.
Anyway, here are my pathetic attempts at pictures of my boys on the 4th of July:
07/11/2012
1. More RAIN! Our backyard is a big mudpit. Joseph loves it. All the boys went out for a couple of minutes after it first started, until the thunder and lightning started in earnest. Brigham and Mosey went inside, and Joseph and Sandy stayed under the back porch to enjoy the show. Sandy is not a bit afraid of thunder. It surprised me a little-- I'm kind of scared of it!
2. Earlier in the day, Brigham and Joseph had a great idea for how to get some quick cash.
Brigham chained Joseph to a tree, and then held a sign saying, "Pay me $300 or I will not let him go."
Sadly, our part of the street is not well-traveled, and it got awfully hot before any of the passersby decided to take pity on poor Joseph. So they went back inside and played Civilization for a while. :-)
3. When Ben got home yesterday evening he took Joseph and Mosey on a bike ride (well, he was running, and the boys were riding). All the rain has the stream down in Bull Hollow really, really full. I wish I could get down there! The boys said there is a massive waterfall and the only way around is to climb up on some cliffs to get up around it. On second thought, maybe it's a good thing I couldn't get down there... The boys came home with SOAKED shoes. Sandy was soaked through and through. Mosey was so excited about it. He went on and on about how cool it was, and how he takes the outside for granted until he really sees how awesome it is.
2. Earlier in the day, Brigham and Joseph had a great idea for how to get some quick cash.
Brigham chained Joseph to a tree, and then held a sign saying, "Pay me $300 or I will not let him go."
3. When Ben got home yesterday evening he took Joseph and Mosey on a bike ride (well, he was running, and the boys were riding). All the rain has the stream down in Bull Hollow really, really full. I wish I could get down there! The boys said there is a massive waterfall and the only way around is to climb up on some cliffs to get up around it. On second thought, maybe it's a good thing I couldn't get down there... The boys came home with SOAKED shoes. Sandy was soaked through and through. Mosey was so excited about it. He went on and on about how cool it was, and how he takes the outside for granted until he really sees how awesome it is.
Subscribe to:
Posts (Atom)
