Baby and James

The other day I picked up Nathaniel and gave him and James a chance to say hi. They ended up holding hands (voluntarily) and it was so cute, I tried to take a picture, but my pictures failed. Here are some failure pictures that attempted to capture a beautiful moment.





Here's Jameser these days:

updates!

Carl and I are watching James this week while my family is on vacation in Florida. It's been chill so far. Yesterday we watched:

- Hidalgo
- When In Rome
- The Lincoln Lawyer
- Sweet Home Alabama
- State of Play

Today we watched:

- Pirates of the Caribbean: Curse of the Black Pearl
- The Adjustment Bureau
- Pride and Prejudice (with Kiera Knightley)
- The Princess Bride
- Night at the Museum

Since all James can really do at this point is watch things, we are stuck watching things all day long. There was nothing really on TV so we took turns picking movies. Bet you can't guess who picked what! ^.~

Nathaniel's been good. He's spent more and more time awake and alert. Right now he's cuddling with his daddy. That's my favorite thing to see.

James has been all right. He's lately been doing this full-body charlie horse thing, where his entire body cramps up. It looks extremely painful, so we've been giving him extra painkiller.

In other updating news, my hair is FINALLY getting to the length I forbade my hairdresser to cut above. I told her not to cut anything above my ears, and oh, I pantomimed, and repeated myself like three times to make sure she understood. And then she had me take off my glasses, and while I was blind she cut the entire top of my hair to be like 1 inch long (NOT EXAGGERATING!).

I cried myself to sleep over it for weeks, and have spent months embarrassed to exist, and I hate looking in the mirror, and I am so upset that I will have to forbid my child from seeing pictures of me and him together from this period in our lives, BUT at last the top of my hair is ALMOST to the point where it touches my ears. It's only been, oh, months and months. Three months. Thirteen weeks. Thirteen weeks of torture.

But the top is almost to where it was before it was sliced by an incompetent hairdresser. And in the meantime I have taken a pledge to not cut my hair for at least a year (besides trims).

Hope your lives are going well!

James, bedsores, armchair

Well, it's Saturday at last. That means that I am spending the entire day with James, instead of just half of it. He has been moaning constantly. And also loudly. I am trying very hard not to go crazy.

His bedsores have been getting better, according to the nurse. We've been trying to move him around more, and we've stopped letting him sit. Earlier this week when the nurse came by, I clarified: whatever changes we have to make for him, to prevent his bedsores from getting worse--these are not temporary changes. The nurse agreed that whatever we have to start doing now, we will have to do for the rest of his life.

So, I think we're going to get rid of his armchair. We just can't let him sit anymore. He can sit in his wheelchair for school and other than that, he'll be in his hospital bed. The hospital bed is nice because we can change his position on it with less effort, and also that's where we change him, so now we won't have to carry him across the room to get that done.

The nurse said that we need to start thinking of James as a frail, elderly man. It's funny because even though he's 24 (25 tomorrow! Happy Birthday, Jameser!), up until recently his body was developmentally something like 12-15. Now it's closer to 90 or something like that, between his osteoporosis and organ failure and whatever.

When he broke his hip and we first got the hospital bed, the guy installing it asked if there was a typo, because it said that the user had been born in 1986. Nope, no typo. The guy expressed his disbelief, noting that the people who use these beds are usually around a zillion years old. In a way, James is almost that old.

It's kind of sad to get rid of his armchair. He's had one for years. Not always the same one, but always one that was designated as his--one that no one else would sit in, for good reasons, next to the TV. One next to his box of baby toys he loves.

This morning my mom told me she thought that he was entering a new phase of his life--one in which the armchair could not have a role. It's sad, but at least he has this nice bed. He's one step closer to where he's going.

james update

Over the past week, my disabled brother James has developed three bedsores.* He's 25 years old, and up until now, he's only ever had one. We caught that first one early on and prevented it from opening.

At least one of these three sores is open--it's hard to tell, because of where they are. All of them are centered around the hip that broke back in September 2009. The pressure is coming equally from the outside and the inside--his bum doesn't have a lot of fat on it to cushion his skin from his bone, so basically his bone is pressing on his skin against whatever he sits/lays on, and since he can't walk or stand anymore, he sits/lays all the time.

Because of the place where the sores are, they're pretty much impossible to keep clean. Since I've been the James Watcher while everyone else has been working at the new house, I try to keep people on top of changing up his position, but it's hard because I'm usually alone with him, and at nine months pregnant, and also given his contagious disease, I can't really lift him or help him out much myself.

We told his school to move him around more, but I don't know if they actually are. He's in his wheelchair for travel and school between 8 am and around 5-6 pm every day. That's a long time to sit the same way.

This morning, James escaped from his bed. He sleeps in a bunk bed that we put a kind of gate in front of, so it's like this giant crib. This morning, the gate was on the floor and he was kneeling kind of a ways away, toward the corner of his room. For a kid who can't walk, it was pretty impressive. We have no idea how he did it.

He's been having a series of hard days, and understandably so, given the bedsores. People do die of those. He's been breathing funny, also, and he's been extra zombie-ish. It's sad to watch.

The other day, Heather took this very nice picture of James:



I think it's a great picture of him. Probably the best that we have from this stage of his life. My poor buddy.


* DO NOT LOOK AT THE PICTURES AT THIS LINK EXPLAINING BEDSORES. THEY ARE SO GROSS. JAMES'S ARE NOT THAT BAD AT THIS POINT, DON'T WORRY!!!! DON'T LOOK AT THE PICTURES!!!! James's sores are currently at Stage II (but of course Wikipedia picked Stage IV photos to show. Gross).

discovering sib stuff

I was so excited for Saturday last week, because I would finally have a chance to rest. No joke: peeling wallpaper for 8 hours a day is HARD. Especially when the wallpaper is 30 years old and comes off in little half-centimeter strips. Of course, I forgot that my "rest" would come in the form of taking care of James, which is, oh yeah, totally not restful ever.

Anyway, while I was watching him, I decided to search online for resources for the siblings of the disabled. It's something I've thought about a lot recently.

The other day, I talked to my mom about what it was like to raise typically-developing kids along with a kid like James, and what she wished she had known about raising us with James.

Nothing she said had anything to do with us. She wished she had known how to make a giant size crib for James. She wished she had known how to deal with taking him to the hospital on short notice. How to deal with his teachers. Et cetera. I kept on saying, "but that has nothing to do with your other kids, Mom." And she would say, "Oh, I guess you're right. Hmm. I'll have to think about that." The whole conversation kind of validated a lot of things I've suspected over the years.

So anyway, I started googling. I found about 9 separate articles/websites dealing with "sibling" issues, and then the further you go back in Google, those 9 websites just cycle through. So there's really not a lot out there, at least that I have found so far.

But I did find this really useful website, and this site, which seems to be targeted toward younger kids, but which has a great list of stuff about sibs on the home page. I found a Facebook group for siblings. I applied to join.

I learned that I and my younger siblings are called "sibs." It's the slang term for, obviously, typically-developing siblings of the handicapped. There are approximately 7 million of us in the United States (and 1 million in the UK, which seems to have way better sibling resources than the US does, for reasons I don't understand).

Finding this stuff--even though it's just nine websites and a Facebook page--has been eye-opening. Not all of it is helpful to me. I'll admit I was pretty annoyed to find that most of the sib pages I found were targeted toward sibs of those with ASD. But I guess there are way more people out there with ASD than there are with orphan diseases like my brother has.

I have been seeing that sibs of people with less severe handicaps than my brother have similar issues to me. It's, again, eye-opening. So many of us feel that guilt, and that anger, and frustration, and I never would have known. It's like this page explains,

Until siblings meet other siblings at sibling groups they often believe that they are the only ones. It is not enough to point out another sibling and say that "He or she also has a brother with autism". Siblings need to hear other children talking about their experiences of family life in order to really know that other people understand what it is like for them.

I guess in retrospect it would be obvious that most siblings of the disabled share similar stresses--who will take care of the brother today? Tomorrow? What will happen if my parents die or get sick and my sibling still needs care? Etc. But I always felt pretty alone in those concerns until I started reading other people's stories.

I thought it was interesting that every single site I found noted the role of the oldest sister in the care of the disabled sibling. Every site mentioned it at least once, how the oldest sister in normal families is usually the one to care for the aging parents, and how that same sister in "specially blended families" (of typical and disabled siblings) ends up taking care of the parents AND the handicapped kid too.

It was pretty depressing to discover, but also kind of validating. The responsibilities I have faced are unique because of my role as the oldest sister in this family. I appreciated that at this site they emphasized the importance of including both sons and daughters in planning regarding the handicapped sibling.

Anyway. I realized as I was reading these sites that I have several friends who find themselves in the same situation I do, with a dying or chronically ill or just plain disabled sibling. Hopefully the few sites I linked can be helpful to you guys, too.

the sweet babysitter

So I'm not really supposed to be lifting my brother, because I am pregnant, but unfortunately, my mother isn't supposed to lift him, and neither is my dad, really, all for health reasons. And Carl doesn't get home until 7:30 now, so James would be stuck in his chair--which he hates--for something like 4 hours if I didn't lift him.

I used to be able to lift him alone, and actually I could even carry him across the room by myself as recently as October. But then everything happened and now I'm not supposed to and also I'm so tired now I can't work out for an hour a day, so oh well.

Anyway, when I get home, the first thing I do is take off my shoes and then the babysitter and I move James from his wheelchair to his armchair, which he likes way better. It's hard for me because I haven't been working out, and I'm tired, and now I have kind of a belly bump in the way, and it's shifted my center of gravity, and also my ankles are super dumb and so sometimes they roll while I'm lifting him and then he almost drops and I have to wear an ankle brace for a few days.

Today, the sweet babysitter asked if she could lift my brother's torso. It's the harder part to lift. One person typically takes James's legs and the other person his torso, and the torso is hard because he resists there and he's heavier there. You need more control and more strength to do it. I always take his top when I'm lifting with a babysitter because our babysitters are in middle or high school and I feel bad for them. Also I guess I think I must be stronger than they are, which is manifestly ridiculous because we're all like 5'4 here, for crying out loud.

But yeah. I was feeling so discouraged this afternoon as I drove up to the house, and as I entered I asked myself how I could stand to do this for ANOTHER day, and I thought about just parking and taking an hour-long walk around the lake. But then I decided I had to be a grown-up and go take care of my sick brother.

When the babysitter offered to lift his torso, I almost cried.

After we moved him, I wanted to hug her.

Honestly, she did it kind of wrong. He ended up twisted and sideways in his chair, and I had to go back and readjust him and so on, but it didn't matter. That one act of service was just the most thrilling moment of the day. It reminded me of my visiting teacher saving the day that one time. It was so wonderful.

Song playing in the background:

the weekend

Over the past three days, my hand has developed this bizarre and unwelcome spastic tendency. Randomly one of the muscles in my thumb will start to shake and tremor, and as far as I know I can't stop it. Last night I spent some time just holding onto that muscle and squishing it down so it couldn't do anything, but then it just started affecting my middle finger instead. I just googled and apparently muscle spasm things are common in the third trimester of pregnancy. Guess we're just about there, folks. Almost, at least.

Funny thing from the weekend:

Carl came home from church and started making some lunch. He got out a plate, some pieces of bread, honey, peanut butter. Then he went to the pantry and starting putting together the g-tube and funnel that we use to feed James.

"What are you doing?" I asked him.

"Making lunch," he said. And looked down at the g-tube. "For myself. Uhh..."

Needless to say, he did not end up eating his sandwich through the tube. This is what happens when we're left alone with my brother for so long!

amazing service

This happened a few days ago, but I wanted to share this story. I haven't blogged in so long, it's like the dams have burst and now I have to get all my blogging out! So tolerate frequent updates until I've gotten it all out of my system. :o)

Last week, my mother was out of town for her uncle's funeral. I think for a normal family, this would have been fine, but my family--my parents, my husband and I--work together every day to care for my terminally ill brother. Having just one member of our team missing can be a big deal.

Fortunately, even though my father and husband had work and my mother was out at the funeral, I had one precious resource to call on: my visiting teachers. For those who don't know, visiting teachers are kind of a trademark of the Mormon church. Every woman in the Church is assigned two visiting teachers, who come visit her once a month with a spiritual message and an offer of service. Typically, I can't think of any particular ways for my visiting teachers to serve me, but this time, I could. I asked them if they wouldn't mind taking turns stopping by the house in the afternoon, to help me move my brother out of his wheelchair. Since my brother is as big as I am, and also I'm five and a half months pregnant, it's not that easy to just lift him out of his giant wheelchair and position him safely and comfortably in his hospital bed or armchair.

Fortunately, my amazing VTs stepped in to save the day. On Friday, one of my VTs (we'll call her Terry) stopped by to help me move J. He had soaked through his diaper and all his clothing, and he just looked miserable. When we started to move him, he started to cry, so I ended the operation and tube-fed him some pain meds. We waited for a minute and then moved him to the hospital bed in the living room.

I told Terry, I can't change J anymore. I'm pregnant, and I know for a fact he harbors diseases that could kill my baby. Immediately, Terry offered to do it. I was amazed. Changing the diaper of a grown man is unpleasant in the best of circumstances, but on top of that my brother's hamstring contracture means you have to change him while his knee is essentially glued to his torso. And again, he's kind of disease-riddled.

But she just did it. She did it all. She changed him, and together we cleaned him and changed all his clothes--again, a difficult task when the guy is 5'4 and hypotonic and has a knee practically glued to his chest. But we did it all. He helped us get his shirt on, too. It was a really interesting moment: Terry seemed so happy to be able to provide that service for J, and J seemed so happy to be able to provide service for us, even if it was only in the form of him pointing his arms so his sleeves would go on better.

After he was all set, the three of us just sat together for a while. It was a unique moment. I've thought about it a lot since, and about the importance of service, and how even when service isn't very fun or enjoyable, it's always rewarding when it's been given with a cheerful heart.

Anyway, that experience really touched me and I wanted to share it with you. I think I learned from J that anyone can serve--even the most handicapped kid around can help get his arms into sleeves--and that service happily given is the best kind of gift around. I am so grateful for my amazing visiting teachers!

explaining my older brother

Since any blog I write will necessarily have to deal with my older brother, here's what you need to know.

My older brother, James, is 24 going on 25. He was born with a chronic degenerative metabolic defect that doctors still haven't diagnosed. He has seizures every few minutes, and has for years; he eats through a g-tube; he can't talk or communicate in any really specific way (although he does smile when he's happy and look like a grumpface when he's not. I guess that counts as communication?).

In September 2009, he fell at his day care and broke his hip, at the ripe old age of 23. He had a hip replacement, and was able to walk shortly afterward, but then the pain medication they put him on caused some adverse reactions that required a few surgeries and a long hospital stay. One of the reactions was an hours-long seizure that left his left hamstring in a permanent contracture. Needless to say, he hasn't been able to walk since. In recent months, he's stopped bearing weight on his other leg, either, so my darling flamingo brother has even left his flamingo days behind. He still goes to his same day care, in his giant wheelchair, and then he comes home and watches TV from a hospital bed until he goes to actual bed.

James's life expectancy is short. Pretty much every single year, doctors say that he has one more year, or a few more months, to live. They've been saying that for, oh, about 24 years, so we don't really listen to them on that count anymore. Still, recently we put James on hospice, which has been amazing. We are so grateful for hospice! As hospice itself says, it's really not a service for everyone (which is a pretty good thing, when you think about it). But for the people it's meant to serve, it's fantastic.

We don't know how much longer he'll be with us, and to be honest, we're all praying that it's not too much longer. He's in pain, and there's not a ton of hope that that will change, and we believe in Jesus Christ and the power of His grace through the Atonement and the Resurrection. I know that while my brother's life on earth requires him to suffer, one day he will be blessed with a perfect body, through the grace of Jesus Christ, and that he and I will be able to rejoice in our relationship as brother and sister forever.

I don't often think about that, because it usually makes me cry, but I really do cherish that knowledge. It is so amazing to me that through Heavenly Father's Plan of Happiness, my brother and I--along with my other siblings and my parents--can be reunited someday, and that my brother will finally get to know the joy of having a body that functions. I am so excited to hear him speak for the first time, and to hear him sing. He's always loved music and I'm sure that he's inherited some of the musicality of my father's side. Sometimes when a song comes on TV, he'll tap his toes to the beat, even despite the pain in his legs. This is a guy that loves music. It will be so cool when he can actually dance.


me and my brother