Misty watercolored memories.

A week after giving my sister Halley plants and seeds for her garden, it was discovered that I had neglected to giver her adequate planting instructions, resulting in the seeds being sown "4 below the surface of the soil; about 3" too deep. We went to work carefully digging up the seeds, in order to replant them at the appropriate depth, with the hope that they would live, thrive, and multiply in the form of delicious and healthy crook neck squash, zucchini, and cucumbers. It was a joyous moment each time we found a seed, and even more so when we discovered one which had germinated, manifesting signs of life and the hope of the harvest ahead.

Memories are sometimes like those seeds. As humans, we typically enjoy reminiscing, particularly with a loved one, about the past, reliving the good times, commiserating and reflecting on the bad. Once in a while a memory, long lain dormant, will be brought to the surface, bursting into the light of our thoughts, exploding with that spark of joy, like when you find a $20 bill in the pocket of the jacket you haven't worn since last winter, or finally going through the box at the back of the closet labeled "Misc. Junk" from when you moved X years ago, and finding that certain important something that you had completely forgotten about. Sometimes those memories will spark a chain reaction, self-propagating into more and more forgotten memories to reflect upon and enjoy, accompanied with the "oh my gosh, I had completely forgotten about when so-and-so did such-and-such!"

Now, stop reading, and think for a moment about what it would be like, what it would really be like, not to have those memories? Are you reflecting? Now you may continue.

I recently made a startling and frankly traumatic discovery, resulting in the time of this post. See that? Somehow, in focusing on trying to fix the issues that Todd has had since the stroke, the ones that affect his day to day living here and now, I missed the fact that Todd's garden of memories has been laid fallow; nuked with the industrial strength herbicide of brain injury. I don't feel like horrifying is too strong a word to describe it.

I first began to realize it when we recently discussed his class work. I was curious to know how he felt about his ability to learn since the stroke; what difference he felt in relearning old concepts versus learning things that were completely new to him. I was somewhat startled when he said that they were both equally difficult, and both more difficult than before.

It was then that I began to understand just how empty his memory is. I supposed I had had clues before now, little things here and there, more a source for light-hearted teasing than something to be concerned about. Or so I thought. Like needing assistance coming up with Oliver's age (they do grow up so fast, don't they?) or how lone we've been married (it seems like it's been forever! ) or repeatedly telling him about what happened while he was in the hospital, or what it was like just after he came home. (He'd had a traumatic brain injury and slept for a month straight, who would remember?) But it is becoming clear that it's so much more than that. He doesn't remember important times in his life, like graduating (all three times) or our lives together, like the day Oliver was born. Being sealed as a family, or being married.

He doesn't remember meeting me.

There are snippets here and there; fractions of memories associated with the whole, but not much on their own. A red couch. A familiar name. A car. Pictures can trigger pieces of memory, jog recollection here and there, but still in bits and pieces. Then again, they also remind him (and me) how very much he has lost.

We all look with wonder and joy at "Todd 2.0", as his brother Brett has coined it, and see how he has changed so dramatically, and in many ways, for the better. But it isn't any wonder: he has also lost memories of the negative or painful things that shaped that former person, and shaped our relationship. Like my losing our long desired baby to miscarriage on Christmas Eve, the year we lived with his parents ("That must have been a bad Christmas... Wait, we lived with my parents?") Our failed IVF cycle ("What is IVF?") His grandpa's funeral. The bad experience of his mission. His parent's divorce.

While this is an opportunity for Todd to essentially start his life over, as the person he wants to be, and we both think of that as a good thing, it does raise more questions. Will it come back? Can it come back? How much? When? Will he remember experiences he is having and information he is learning now, down the road?

It is necessary to experience pain and sorrow to appreciate the happiness and joy. And sometimes the pain is so unbearable that we wish we could just forget it. But if it came at the cost of forgetting everything would you make that deal?

Yesterday was a great day. To catch you up, Todd is still working at Deseret Industries, and going to school at Salt Lake Community College, doing their media design certificate through the applied technology college portion of the school. It's been difficult for him at times, but he's done it completely on his own. He is doing his school work at home, with his teacher's permission, and has kept up with his work, and works at it every day. I'm really, really proud of his dedication and follow through.

He is still very much struggling with fatigue and his vision trouble. He has an appointment with Moran Eye Center in March to see if there is anything else he can do to improve his vision. He still has trouble looking down, and has gotten "lazy" about using his eyes because it is so difficult. He will just feel around for something that fell, for example. He also complains about his eyes going blurry, and when reading, that the words on the page don't stay still.

The fatigue has been addressed by his psychiatrist multiple times, and we have tried everything from getting more sleep, to not using his CPAP consistently, to just pushing through, to homeopathic medicine and herbal supplements, to drinking caffeine, to taking high-dose caffeine tablets, to the latest: Amphetamines. They started him on a low dose, a pediatric dose, actually, which did nothing at all. Then they upped it to the maximum dose (which wasn't that much higher than the pediatric dose, scarily.) It is a medication that is similar to Ritalin. The dr. got the idea when Todd was talking about medications he's been on in the past, and had tried Ritalin for what we thought was ADHD, and his reaction to it (WIRED.)

He's been on the high dose for a few days now. To be honest, I was half hoping it wouldn't do anything, not because I don't want him to feel right, but because dude, it's amphetamines! It's real drugs! Serious stuff. With serious potential side effects. It made him jittery, but initially said it didn't seem to be doing anything for his fatigue. Until...

Yesterday.

Fridays are our Saturdays, since Todd has the day off. It was really nice weather, so Todd decided to spend some time out in the yard, doing some work that has been on his mind, including poop-scooping, and raking up leaves that fell through the winter. Oliver wanted to go outside too, so we spent the afternoon as a family out in the yard. Todd and I worked on tidying up, while Oliver ran around and played with the dogs and found pine cones.

Oliver got tired, and hungry, so he and I came in. Todd kept working, and moved on to demolition of some old fencing that was left by the previous owners. He got out the power tools and everything. I kept reminding him not to over do it, and wear himself out, but he said he felt fine.

When he started to lose his light, he came inside and started working in the garage. We still have tons of stuff out there that never got moved in when we moved here, and he's had the goal, since he came home from the hospital to be able to park both cars in the garage (we are borrowing one from Todd's Grandma Drexl, since Todd is unable to drive his scooter anymore.) He made some major headway yesterday.

When we were getting ready for bed, I told him how proud I was of him for all he accomplished that day. He was proud too, and said that he went back out into the garage a couple times just to look at his work. It's funny; I do that too. And then he said words I've been wanting to hear for almost 2 years:

"Today I felt normal."

I about started crying right there. It's been so hard to have him so tired ALL THE TIME, not in the least because I see how hard it is on him. We have had some really great discussions lately about the "reason" for this trial. He's coming to see that his stroke was not punishment for something, and that we have received a lot of blessings in this trial. He's starting to see the positive things that have come from this experience, and the things he, and we as a couple and a family, have learned. I've maintained from the beginning that this experience is necessary to teach something that either he or we couldn't have learned any other way. I'm not one to put words in God's mouth, but something hit me last night with the force of personal revelation. I had the thought that considering his high blood pressure, stress load, and family history, that a heart attack was almost inevitable. And perhaps he wouldn't have lived to tell the tale, like he did with a stroke. Perhaps the experience we are looking at as a trial was actually protection. And perhaps the residual effects he is experiencing now, especially the visual trouble, which I believe will never be fully resolved, are there to serve as a reminder of the things he's learned. To slow down. To be more patient and understanding. To pick his battles. To enjoy the present. To have and show gratitude.

I can honestly say that I am grateful for the things I've learned from this experience, and if this is what I had to experience to learn these things, then so be it. I wouldn't have chosen this, but there is so much in my life to be grateful for. I have a family who I adore. I have a warm roof over my head, food to eat, cars to get us where we need to go. I have an amazing husband who adores me. I have a sweet, amazing son, who brightens my day and keeps me on my toes, and teaches me so much, and gives meaning to my life.

In the words of one of my (current) favorite singers, Paolo Nutin:
I got a sheet for my bed,
And a pillow for my head
I got a pencil full of lead,
And some water for my throat
I've got buttons for my coat; and sails on my boat
So much more than I needed before

Truly we are blessed beyond measure.

Your prayers are needed

The disability management company who pays out on Todd's claim is getting ready to do another review. This entails reviewing notes from doctors Todd is seeing, paperwork completed by us, phone conversations I've had with his case manager, his RTW (Return To Work) plans, and any earnings he's made. I'm always nervous, nay, terrified when they do a review, that they are going to suddenly decide that he's fine, and kick us off disability with no warning. Even though his case manager has reassured me that they won't do that. But her job is to look out for the company, not her clients, as much as they both may claim otherwise. Or maybe it's just my inherited paranoia of "the system." IDK.

I believe this will be the one year review, in which they determine whether or not Todd is able to return to his former career path with less than 40% pay loss. Which at this point he is not. What makes me nervous is that he's not regularly seeing a doctor any more, other than the psychiatrist who is managing his psychiatric medications. All the other doctors and therapists have released him, to be contacted again on an "as needed" basis. And thankfully, they haven't really been needed. Except that it's going to look on paper as though he's back to his former self, which, while he continues to make great strides, is not the case.

At this point, what keeps him from working full-time are first, his fatigue, and second, his sensory reception. If he still had his old job to go back to, he could maybe go back if they were very willing to work with him on his schedule and make adaptive changes to his working environment (like allow him to arrive at work at a later time, take a 2-3 hour lunch so he could rest, give him an office, so that ambient noise wouldn't be such a problem, and allow him to gradually build up to being back full time...) but he doesn't have that job, and trying to find a job in this economy is hard enough without going into it with special circumstances like that.

Perhaps what I'll do is have him make some appointments with his doctors, just so that they have up-to-date opinions of his condition and deficits. While it won't be cheap, it's probably a better alternative than leaving it to chance and getting kicked off disability. Cause getting kicked off disability now would not be a good thing. At all. While Todd is working, making minimum wage 16 hrs a week wouldn't pay the bills. And while Oliver will be starting school, I'm still his (much needed) primary care person, and day care for a kid with special needs would probably cost about what I could earn, not to mention that I don't have the earning potential needed to pay our house payment even in the best of circumstances.

The other thing that we need your prayers on, is our insurance situation. We are currently on COBRA, and while the disability plan and the government have combined to make it affordable to us (Can you believe it? I used COBRA and affordable in the same sentence! There's a win for you, Obama), you can only stay on COBRA for so long, and I believe our coverage will end in Jan or Feb. And I don't know what we are going to do then. Because of Todd's and Oliver's preexisting conditions, I don't know if they are insurable through a private policy. And they are the ones who really need it. The cost of Todd's medications alone without insurance would bankrupt us in a matter of weeks. Not to mention that fall and winter are coming, bringing with them the colds and bugs that can cause ER visits for Oliver.

I'm waiting to hear from Oliver's teacher to find out how many hours a day he'll be in school, so that I can look into finding a job that won't take me away from him too much, and will provide insurance. If anyone know of something, please let me know. He'll be in school Mon-Thurs mornings, but that's about all I know.

First day of school

After a breakfast of smoked sausage, eggs, and wheat toast, and with sack lunch in hand, Todd was off for his first day of school. But first he has to put in his time at work, which means that today is his first day back to 8:00-5:00 since his stroke. We are cautiously optimistic.

He is entering the Visual Media program through SLCC, formerly the Applied Technical College. We don't have many details yet of how the program is run, if it's a "go at your own pace" thing as has been described, or if it's more like a standard 2-year degree. We'll know more this afternoon.

He chose this program after much thought and prayer on both our parts, and we are betting against the odds here. His doctors have told him that because of the nature of his brain injuries, his mind doesn't work the same as it used to, and in his case it affects his ability to think creatively. That's the short version. And that he will probably not be able to be successful at his old job. I, on the other hand, being no expert in the brain as they are, imagine that it could prove to be very good for him to get back to what he did before, and that in relearning his former skill set, that new pathways can be established, prompting further healing, and feeling that much closer to "normal." I suppose only time will tell, but your prayers in his behalf would be much appreciated.

As to working, they moved his hours to all mornings, starting at 8:30. Or it might be 8:00, he couldn't remember. I advised him to assume this morning it was 8:30, in order to get that little bit of extra (much needed) sleep, and take the "it easier to get forgiveness than permission" approach. And be on time from here on out. The great thing about this program, run through the LDS Church, is that their goal is the same as ours. For Todd to be able to support his family. Therefore, they have told him that he only has to work a minimum of 8 hours/week to remain in the program. As Todd said, we're not married to the money he's making there (though it's been REALLY nice) and the important thing is for him to get the training and get back on his feet. So for now we're giving it until the end of next week to see if the 8-5 is going to push him just enough, or burn him out, before he has them cut his hours back.

He works until 12:00 today (or maybe 12:30?) and class starts at 1:00, so if you want to call and wish him well you have a very small 30 min to 1 hour window in which to do it, but I know he would appreciate the well wishes, and knowing that people are behind him and rooting for him.

Happy Survivalversary

One year ago I got a call that Todd was very sick, and had been taken by ambulance to Jordan Valley Hospital. Oh, you mean VERY sick. I had no idea how sick until I arrived, and learned that he was unable to communicate, open his eyes, etc. Todd's dad met me there, and someone came eventually and took Oliver, the first of many times that I can't remember where he was or who he was with. Thankfully I knew he was safe and loved and cared for, and at that time, that was all the thought I could spare.

One year ago I truly didn't know if Todd was going to live or die. And the hospital staff wasn't super helpful either. I remember asking one Dr. "He is going to wake up eventually, isn't he?" And her response was "I hope so." They didn't even know what was wrong with him, and we heard everything from pneumonia to meningitis to epilepsy. But not stroke, because "he didn't meet the typical picture of a stroke" in that he was young, couldn't communicate, but could squeeze with both hands.

One year ago I was faced with the definite possibility of my life changing very drastically and very tragically. One year ago I didn't have the faintest clue how I was going to get through the terrifyingly unknown future.

If you could have told me one year ago where our family would be today, I'm not sure I would have believed you. I don't think I would have dared hope. From the darkest time in our lives, we have come through to an increasingly bright future.

Todd lives. He is here for me to hold and love, and to raise Oliver and teach him. He can eat. He can swallow. He can talk and communicate. He can understand. He can bathe and dress and shave and brush his teeth. He can stand, he can walk, he can drive. He can take out the trash, mow the lawn, vacuum, make the bed, clean up after Oliver. He can get himself out of bed, and get himself up and moving. He can WORK!

He still struggles with fatigue, and with his vision, and therefore, sometimes, with his balance. He still has difficulty in communication, both expressive and receptive. There are still glitches in his brain. He still has trouble integrating his senses, and thus they can overwhelm him. It has been a long road back, with big leaps at first, then smaller and smaller steps. There have been many dark times, with regressions and plateaus, but he has continued to improve.

Things happen for a reason, and some changes have been for the better. Even he realizes that some of the changes in him could not have come about any other way. He has been tempered in every respect. He is slower, more careful, thoughtful, and deliberate. More considerate and kind. More prayerful. The important things remain intact, like his loyalty, his work ethic, his love of others. He was always a good husband, but now has become a great one.

Today my heart is filled with gratitude. For the many prayers and fasts and works that were performed in our behalf, which carried me when I couldn't cope on my own. For good neighbors, good friends, and great family. For the doctors, nurses, therapists and aids who work tirelessly in their professions. For my faith and testimony which got me through the hardest moments. For the many, many blessings which were in place long before we knew we'd need them. And most of all, for Todd. For not giving up when that would have been the easiest thing. For his hard work and endurance. For his love, his strength, his companionship, his courage. I'm so grateful that, for what ever reason, Heavenly Father didn't see fit to take him Home last year. I, too, have grown over the last year, and we have grown together.

I love you babe. Truly, madly, deeply, and forever.

Family vacation, attempt #dos

We took a little trip, the three of us.

After making it through a week of hell, in losing one of our dear friends (my best friend) to a pulmonary embolism, and the ensuing funeral, we hurriedly packed up our crap and headed out as one car in a five-car caravan to a family reunion in Yellowstone.

Attempt #1 at a family trip was back in Jan, when we went with Todd's family to southern Utah for his niece Kamry's baptism, which was successful only in that we all made it back alive. It was not fun, relaxing, or enjoyable. Todd had melt downs, didn't get enough rest or quiet, I was single-parenting a kid who still needed naps and wasn't getting them, (and refused to sleep in the car) and we were packed into a condo (albeit a nice one!) with 9 other people.

It's amazing what a difference 6 months can make. Oliver has grown up a little, and can get by for a few days with no nap (because he still stalwartly refuses to sleep in the car) and Todd has by now had several important improvements which made it far more possible for all of us to enjoy ourselves, including:

• his medications being stablized
• getting quality sleep using his CPAP consistantly
• reduction in needed sleep down to a manageable amount (around 12 hrs)
• increased attention span
• ability to see his limits before he reaches them, and give himself breaks/time outs (usually)

We stayed in a cabin with one of my little sisters and her family. We had a bed. We had electricity (which was vital for running the CPAP so Todd could sleep, so I could sleep, and a loud fan so Oliver could sleep.) We had a bathroom. We had a refridgerator. Yes I know, not technically camping, but it was the closest I think this family will get for the time being. And maybe ever.

We drove through Yellowstone, saw some buffalo (and did not approach them or get gored), watched Old Faithful errupt, oogled some construction vehicles (Oliver's favorite part) and broke some federal laws (in our defence, though apparently it should be obvious, there were no signs posted about not walking on white sand.) We rode our bikes, and toasted marshmallows, and threw rocks in the lake (I skipped one 5 times, a personal record) took Oliver on a motor boat (LOVED it) ate a lot, talkied while we walkied, and celebrated Todd's birthday with a heart attack on the cabin and surprise brownies and ice cream.

I took very few pictures, and even less video. I wish I could have, but life is what it is, and at this moment in mine there isn't much room for documentation. So hopefully we made some good solid memories.

We planned on staying until Saturday and rolling out after breakfast, but an unforseen storm threatened to blow some of our group's tents into the lake. So they packed it up Friday night, and as we were planning on caravaning with them the next day, and were already mostly packed thanks to a mix up in reservations, and as we had by that time had all the fun we could stand, we headed out as well.

We got to Pocatello, which was about the half way mark, by about 1:00 am. Todd had driven the entire time, and was doing well, but I didn't trust either of our abilities to stay awake for an additional 3 hours, so we wound up in a Best Western room with another sister and her family, and can I just say....

Best $50 we've ever spent.

We had a lovely comfy bed with a poufy comforter and feather pillows, soft water, AC, Bath and Body Works toiletries, and best of all, a decent night's sleep. For most of us. Oliver woke up at 5:00 coughing, wheezing crying, screaming, and threatening to perfom his own special version of Old Faithful, so I was up with him for an hour or so sitting in the bathroom and doing breathing treatments. Everyone else was so dead to the world they didn't even hear him.

The next morning we woke up late, had an amazing (free) breakfast of waffles, doughnuts, cereal, juice, hot cocoa, buiscits and gravy, eggs and bacon. Best continental breakfast ever! Then we went swimming in the pool, which was great, since I hadn't had a chance to use my brand new bathing suit. Oliver loved it like a fat kid loves cake. He wasn't scared of the water at all, and it was nice and warm. He held on pretty well while Todd and I swam him around, he didn't cry when I dunked him under the water, and even put his own face in the water several times, without crying. He drank more than his share of pool water (just don't think about it) and got some great exercise and balancing practice standing on the steps up to his shoulders in the water. And even loving it as much as he did, he didn't cry when we told him it was time to go.

After we checked out we went to find a shady place to eat our picnic lunch (pita sandwiches and all kinds of camping type goodies) and ended up on the lawn of an LDS meeting house. We felt right at home. Especially when Oliver threw up all over the picnic blanket. Just like at home.

We made it home just in time to drop off some stuff, unload bikes and head out to Herriman for briskett and smoked beans and the most delicious ultimate strawberry tall cake at Todd's brother's house, when Oliver started wheezing again, and we had to pack it up early. We picked up the pups, who were having a sleep over at Papa Al's, and got home in time for bed. Thanks to a dose of steroids and the inhaler, Oliver seems right as rain, though behind on sleep, today. Todd is putting him down for a nap, and if I'm not mistaken, is probably taking one himself. Which is precicely what my plans are next.

And that, my friends, is that.

Service project, anyone?

I had a conversation the other day with one of my sisters about the ability to ask for help, which most people, myself included, are not so great at. But by necessity I've learned how to do it a little better over the last year. But I need a little more practice. And yep, the Thelins still need help.

We desperately need help with a couple of things. They are things that Todd v1.0 would have typically been able to do by himself or with my help, but Todd v2.0 is having trouble getting up the wherewithal, and getting organized to do it, I'm clueless, and we don't have the money to hire it out. So if anyone has expertise (or some experience, or even just willingness to learn by doing?) and wants to earn some brownie points (and hey, I might just throw in some actual brownies to sweeten the deal) we could sure use some help with:

• Our sprinklers. Heads being replaced, a broken pipe fixed, basic stuff like that. We've never had sprinklers to deal with before. We did manage to get them turned on, figured out what zone is what, and even changed a wire to hook up one zone that was miswired. All by our selves! But the knowing how to fix stuff is beyond our realm of combined capabilities.
  
• Hooking up ceiling fans. We bought fans just after we moved in last year, then Todd had his stroke, and I didn't want to install them in case we had to put the house back on the market. Turns out that we are blessedly able to pay our mortgage, for now, so they need to be installed before we wind up roasted and basted in our own juices. I think the fans need to have another wire run, because we just have light fixtures there now, and I want, if at all possible, to have both the light and the fan on dimmer switches. I know, picky picky.
• And if you happen to have an aerator, or know some one who does, our poor lawn, which, crappy as it looks, is actually immensely improved over last year, needs it badly. So that when our sprinklers are fixed, the water can actually get down in there.
  

If you can spare a few hours to help with any of these things will you please call either Todd or me? Thanks for your continued help and prayers. With God, and with good neighbors, family, and friends, all things are possible.

Good bye, ranks of the unemployed, hello ranks of the under employed

I can't write a ton because, well, on top of it also being my first day back s a solo parent (you wouldn't think it would be this difficult an adjustment) I'm also sick as a dog. Or maybe a pig?

But Todd is working. He started today. He's working at Deseret Industries, (hereafter referred to as the DI) which is a thrift store/vocational rehab/humanitarian center run by the LDS Church, for those of you unfamiliar. He will be cashiering, and working 4-5 days a week, from 10-4:30.

This morning he got up and out the door on time, completely on his own, no nagging from me whatsoever. He drove today, but since the location is so near our house, he has plans to ride his bike on days when it's not raining or too warm, so he'll be getting some exercise to boot.

He will also probably be starting at the Applied Technology College. He's finding web design to be extremely difficult now, and will probably need to change directions career-wise.

I'll write more when I can think without it hurting.

What's been missing

We had a highly enjoyable time visiting with Todd's brother Tim and his wife Allison, who came for a week plus over Easter. It was a blast hanging out with them, and spending time with family, and was made even better by the return of Todd's spirits for the duration. It's been ages since I saw this smile:


Todd and Tim watching Electric Dreams. If you've seen the movie, you know that it's not really funny, but it's kind of a family cult classic. I've also witnessed how Halo 3 seems to bring back some of the "old Todd" in listening to him play with his brothers. How I love him! How I've missed his vibrant, vivacious, passionate personality! I find it very interesting how the stroke and life afterward has moved his personality from one end of the spectrum to the polar opposite. Both are good, the exuberance and the quiet contemplation. I just wish I could have both. Put them in a bag and shake them up. Redistribute. But like most things, it's a case of you don't know what you've got 'til it's gone, I guess. Hopefully I've learned the lesson, and some of the "Old Todd" will start creeping back in again.

Todd's still struggling with the sleeping issue. He sleeps from about 10:00 pm to about 11:00 am. He's driving himself crazy with it too. They are considering a couple of different medications to try to help, but I'm not convinced that that is the answer. Rittalin? Really? We have to go there?

Oh, and the Voc Rehab thing was kind of a joke. The meeting lasted all of 30 minutes. Todd left feeling even more discouraged, and we went back to the assumption that it would be up to us. We will have to create a program ourselves, and whatever help we can get from VR, from Disability, from the Church, we'll take, but we're pretty much going to have to rely on ourselves and our inginuity, and the Lord for this one. Todd will be meeting with our Bishop on Tuesday to discuss employment with the Church, in their Voc Rehab program with Deseret Industries. Because Todd is a highly educated person, I anticipate (and dearly hope) that he will be useful in a greater capacity than stock and donations. Office work, training, management, operations, perhaps. I wish I could go with and be his advocate, because he's likely to just do whatever, and not promote himself and his strengths, abilities, and tallents, and that simply won't do.

What today holds

Today Todd meets with his Vocational Rehab councelor, to set up his IPE (Individual Plan for Employment.)

This is a very good thing, which he had to qualify for, but in that is a two edged sword. On the one hand, it's great because they will help him to decide what he wants to do in the future, and find something meaningful and fulfilling to him which he is capable of, and provide him with the services to meet those goals. On the other hand, the letter was quite a shock to him, making it painfully clear that he is "most significantly disabled" (for the purposes of the VR program.)

Personally I don't consider him to be "most significantly disabled" in anything. Mildly disabled, or moderately so at the utmost. Sure he still struggles with things, but he's mobile, can take care of himself, and even Oliver for a bit occasionally, communicate, drive, and yes, work, eventually. But it was a shock for him to read that. I reminded him that it was for the purposes of the VR program and that that is a good thing, because it qualifies him for the program. But in my eyes, and I'm sure in everyone else who knows him, he's more Able than disabled.

So I know it's been what, 9 months now? But please keep us in your prayers. For Todd, as he goes to this meeting and starts the program, and as he continues to struggle through dealing with his deficits each and every day. And me, to have the patience and compassion and strength to continue to help him, and continue to keep going.

What it's like in Todd's brain

I've recently been chided for not updating the blog, and I apologize.

First of all, a clarification of the last, cryptic post. We found out at the cognitive testing that Todd is very close to being ready to begin re-entry into the work force. Now, before you go getting a giddy and excited, understand that this doesn't mean that he's "cured" or completely recovered. And it by no means indicates that he's ready to hit the work force running.

Rather, it means that he's entering the next phase of therapy, with employment being a tool. He is to start very small, with basic employment skills like showing up on time, accountability for tasks, interacting with managers/coworkers, and the like. He will continue to work with his OT as he encounters stumbling blocks, and continue to move through more and more challenging occupations. You see how this is going to be a very tenuous, difficult, and frightening (for both of us) stage. How to obtain basic employment? How much to disclose? How to plan and train for and move ultimately to an entirely new career? How to pay our bills while we work toward that?

The reason I was so cryptic about it before was that I didn't want to risk posting something on here, and it some how getting back to his disability insurance that he was ready to go back to work, and have him get kicked off his disability policy, and us wind up with no income whatsoever, and no way to pay our bills, with Todd still not able to go back to work, and me still needing to do and be everything at home. (Though, don't get me wrong, Todd is very helpful, and does quite a bit at home, and is a huge help.)

We've learned that his policy includes a return to work plan, such that he can work, and as long as he works part time, and makes less than 20% of his former salary, it will not affect his disability pay out. As he starts to earn and work more, it's based on percentages, until he reaches 80% of his former salary. That's the basic gist of it, to my understanding.

Todd is now driving, and has no restrictions, which has been an enormous relief. Taking himself to therapy has enabled us to get Oliver back on a semi-normal schedule, so he's happier too. And it's nice to be back in the passenger seat. And this is a big step one to returning to work.

Todd went to an orientation for Vocational Rehab, and was left in doubt of how much they would be able to help. He was in with cancer patients, amputees, and parolees. From what we understand, Voc Rehab people tend to have a hard time helping people with brain injuries like Todd's. They do great with people who have obvious physical impairments to working, but when it comes to the finer cognitive deficits, they kind of don't know what to do. He's still planning on meeting with the counselor, so we'll see.

The biggest things he's still struggling with are fatigue and clarity (or lack thereof.) He still sleeps about 12 hrs a night, and is still tired all day long. More so if you add anything extra on top. Like appointments. Family get togethers. A rough day with Oliver. Staying up too late. Illness. You can see how that will be a big impediment to working.

He feels like he's trying to think through a fog, like everything takes longer, is harder, and more taxing. He mentioned that he has brief moments of clarity though, which is very encouraging. The Dr. pointed out that with his speech, he started off not being able to say anything. Then he could get a few words out, but they didn't make any sense. Then he gradually started making a little sense, but most of the time it was still nonsense. As he progressed the balance shifted, and most of the time he made sense, but still had many times when he didn't, and it was made worse but fatigue and exhaustion. Now he pretty much makes sense all the time, but there are times when he gets what he's trying to say just the tiniest bit confused. The Dr. anticipates that his thinking will do likewise, and become more and more clear as time goes on. He may still have some lingering foggy patches (our experience talking to other brain injury survivors indicates this is so) but in general he will probably get to where those are relatively few and far between. There are no guesses as to how long this will take, however, and it's this nuance of thought that makes him unable to work.

Take a moment to sit back and close your eyes, and imagine staying up all night, then taking some NyQuil or Dramamine, or getting drunk, perhaps, and if you're female, add in some PMS or pregnancy emotionalness, and feeling like that each and every day, with no respite, and you'll have a notion of what Todd deals with every day.

And then imagine trying to work.

Cognitive testing, round dos

I'm very negligent in my posting, I know. Todd did go back in for repeat cognitive testing a few weeks ago. It went well, we were very happy with the results. And I'm so sorry to be cryptic, but I can't really give you any more details than that until after we consult an attorney. So if anyone knows one who has expertise in insurance or disability, please let me know. We'll be deciding on one to retain after Christmas.

Todd has been doing well. He is close to being done with speech therapy (will continue to see her as needed on a consultation basis) and has started the long road back to driving. He took the written test and got 100%, and will hopefully be able to take the road test tomorrow with his OT.

Keep him in your prayers, he's so anxious to get back to driving, and it would help our family SO much if he could drive.

A humble thank you

To our anonymous benefactor, who left a card on our doorstep the other day with a generous gift. I'm going to assume that you read this blog, and wanted to thank you publicly. It WILL help make our Christmas merry. A thousand thanks from our whole family.

Progress check, thanks to visitors

We had family in town for Thanksgiving, from both of our families, which was a perfect opportunity for some outside perspective for me. None of these family members have seen Todd since before he had his stroke, so I was very interested to see how they found him now, as it's pretty difficult for me to see the incremental progress, being with him nearly every moment of every day.

I'm afraid that I kind of jumped on them for input, and I hope I didn't come across as insensitive or rude, but as I've told so many people, I don'thave the time or energy, or emotional wherewithall to beat around the bush, or worry about causing offence (or being offended, so don't worry, it does go both ways) or picking up on social cues or body language, or any of that. But the verdict was that he is changed, though not necessarily for the worse. That the stroke has aged him, or perhaps a better word would be matured him. He's slower, in movement, speech, and thought, and more deliberate. Which, if you knew Todd pre-stroke (or Todd v1.0 as his brother likes to call him) you would know that that isn't necessarily a bad thing. Todd's family kept forgetting that he had a stroke, and needed special consideration in things like noise level and physical labor. (Of course, they made every consideration, it was just hard to remember that he wasn't just tired, or on NiQuil or something normal like that.)

Todd has been making amazing strides lately. He gets himself up every day at a reasonable hour (before 10:00 a.m.) and I don't have to nag him to get out the door. In fact it's back to being pretty even as to who is responsible for making us late. Because we were never punctual people to begin with.

Each of his therapists are amazed at the progress he's made. He didn't see them much for a couple of weeks, due to illness (theirs and ours) and one was on vacation, and in that time he progressed a ton, though we didn't really see it at the time.

In talking to one of my sisters-in-law, I realized that I have a hard time quantifying Todd's progress, so I'm going to give it my best shot. In addition to the waking himself up (without an alarm by the way, which is more huge than it probably sounds) he can:

*Complete tasks with his therapists with relative ease that just a month ago were very difficult, both in the cognative ability to think it through, and generally stay on task with out getting distracted (and when he does, can redirect himself to get back on task.)

*Stay on topic in a conversation. When he does get tangential, it's a much smaller leap for outsiders to follow, and he's usually able to get himself back on track, or explain how he made the leap.

*Work on the computer. He has been doing a lot with our computer, and with my brother-in-law Devin's help, has replaced the power supply and hard drive, reformatted and reinstalled everything, backed up everything, and has been working on thelins.org, his family website, of which he was the web master. Other than the occasional hiccup, he's done great.

*Understand that some of the difficulties that he faces (like with crowds and noise) may never go away completely, but he is learing to compensate for his defacits in productive ways.

We hosted Thanksgiving Dinner for my side of the family at our house, and, well, it was a lesson in what not to do. It was just too much, for both of us, really. Oliver too, for that matter. But we were able to take some lessons from it, like that Todd really does need rest breaks, often, and needs to take them before he feels like he needs one. And that ear plugs are a good thing. And that we won't be hosting that many people again. At least, not for A LONG time.

The next big things on the horizon are getting him back behind a wheel, and repeating his cognative testing. In the next two weeks his OT will check out a student driver car, (the kind with the extra "just in case" set of brakes) and begin the steps to approve him to drive. They will approve him in incremental steps, for example, if he does ok with her, he may be able to drive on city streets, in the day time, without the radio, and with only me in the car with him, and move on from there.

The cognative testing will be done on Dec. 8th. We are hopeful that he will be approved to go back to work, but we know it may still be a little while. But things are progressing. I feel a lot more positive than I have in a long while.

The other perspective that I'm very interested in is when Todd's mom Sue comes to visit for Christmas. I know that she'll be amazed at how well Todd is doing, and she's really the only person who can give me an update from the perspective of someone who has seen Todd since his stroke, but not for a while. She was here for the month of August, basically from the time Todd was well enough to go home from the hospital, so I'm very interested in the progress that she sees.

I'm certain that all the prayers that are still offered in Todd's and our family's behalf are being heard, and the blessings are felt. I'm so grateful for all of you and your support. I'm grateful for the power of God's holy priesthood, and having worthy holders of it in my life, who were able to give not just one, but MANY blessings each of which independantly promised Todd's full recovery, which we are seeing in action before our very eyes. God is good.

We are still alive

This is a cross post from my other blog, but since that one's private, and I thought this pertained to this blog as well, I'm posting the same thing on here. If you read both, please forgive my redundancy.

It's been forever since I updated this blog. Or Todd's stroke blog. We're here, though. Still alive. We haven't dropped off the face of the earth, and we don't hate you. We've just been involuntarily booted off line for a while.

Our hard drive crashed, and we stopped breathing for a second (or a couple days) thinking we'd lost everything. Everything. All our pictures. Thankfully, Todd was able to recover it, the hard drive had not completely failed, but we went ahead and bought a new one (along with a new power supply) so that we could sleep a little better at night, knowing that all our precious data was safe and sound. Merry Christmas to us. Then we had all the fun of new installs, etc, and yadda yadda, we're finally back on line.

And thank goodness. I was starting to freak out, not being able to do my on line banking. Et Cettera. I wish I were one of those people who could disconnect and be happy about it, and go about my day buisily saving the planet or what not, but I can't. I'm not. I (heart) the internet, peeps. Can't live without it. And now that we're back on line I can tell you some good news.

Todd was awarded Long Term Disability through his (former) employer. It's not enough to live on, but it's enough to pay our mortgage. And he will receive it as long as he is eligible, until he's 65, if need be (which it won't, right? Right?) They will also help with him with returning to work, or vocational training should he not be able to return to his chosen career (it's called Vocational Rehab, I think.) And, as our caseworker pointedly told me, as a caregiver to a brain injury survivor herself, they have benefits for caregivers too. I'm guessing in the form of crisis hotlines, or counceling, or some such.

The other good bit of news is that our COBRA insurance has FINALLY been reinstated, so we can start billing all Todd's spendy drugs to the insurance company again. And be reimbursed for the $1000+ we've paid out of pocket this month. Yep, like the 2-month supply of one that I was lead to believe he'd be on long-term, and was rapidly transitioned off of. And several others that we paid for before I had the good sense to start filling in week-or-less incraments. You survive a stroke, but then the cost of the medications will kill you with a heart attack. Can you say $20 per pill? F'reals. And oh yes, COBRA is not cheap. But we only put Todd and Oliver on it, and part of the LTD package includes them paying some of Todd's portion, so really, we're pretty lucky. We're not paying the most you've ever hear of. Though it's still not cheap. And hey, if you know anyone who takes Lyrica, Depakote (generic) or Depakote ER, send them my way. We can trade for something. Say, money, for example. I'm not saying I'm a drug dealer, but if we have it and don't need it, and you need it but don't have it, well, it seems silly not to work out something to our mutual benefit, no?

So, the good news I suppose is that our savings will last us a little longer. There's still this dreadful day of recconing looming out there in the murky future, on which a decision will have to be made about what to do about the ever dwindeling savings, and lack of gainful employment, but I've given myself until after the first of the year to acknowledge it. Because there's just no way I'll be able to get throught the already hectic and stressful holiday season (made moreso by said dwindling and lack) if I also have to worry about finding a job, and all the logistics that go along with Working Mommy, Disabled Daddy, and Special Needs Son. Ug. And here comes the panic attack, right on cue.

I thought I'd apply for WIC, since we have no money, and strangely still need to eat. I guess I should have gotten on the ball sooner though, and done it before the LTD was granted, because now apparently we make too much money. I suppose I should be happy that even living off disability we are above the federal poverty line, but it just puts us back into that damned if we do, damned if we don't situation that has plagued us since Todd's stroke. We don't make enough to be self sufficent, pay all our bills, but we make too much (or have too many "liquid assets") to receive any aid from the programs that we've been paying into since we were 16. This is why people declare bankruptcy, and forclose on their homes.

At the risk of this post being a total downer, let me reassure you that we DO see the blessings. We have been blessed beyond measure, and recently another blessing was brought to our attention. We met a wonderful guy at LDS hospital, who happenes to be a survivor of a nearly identical stroke. However this man has suffered more physical imparement, and has no use of the left side of his body, and as such, is confined to a motorized wheel chair. Which Oliver, incidentally, thinks is just about the coolest thing since Yogurt. We had the opportunity to get to know him better, and meet his wife at the Brain Injury Support Group (which was fabulous, by the by) and decided that we need them to be our friends. When we got home that night, Todd and I were talking about getting together with them, and it struck us that it wouldn't be possible to invite them to dinner at our house. For starters, there are at minimum 4 stairs to even get into our house. Add to that that the bathrooms are either up or down a full flight fo stairs, and it hit us. How lucky are we that, with all Todd's dealing with, he has full use of his body. He can go up and down stairs no problem. Feed and bathe and dress himself. Heck, we raked and bagged leaves this morning. I can't even begin to think of what we'd be facing if Todd had suffered the physical affects of the same stroke, just after purchasing this stair-ridden house.

So blessed? Yes. Beyond measure. Thankful? Very. Still in need of lots and lots of help? Um. Yes.

Stay tuned for a very sad and pathetic post of things that we could really use help on. Cause this one is too long and already depressing enough. And I'm tired, and going to bed.

Dang it, I forgot to take pictures!

We all managed to get out of the house by 10:00 today, which I'm pretty sure is a record of late. Unfortunately we were headed out to get to a Todd appointment which was at, you guessed it, 10:00. Fortunately it was with a therapist who happened to have the morning free, and was kind enough to consent to moving the appointment back to 10:30. Oh yes, and we were still a few minutes late. But it was all good. Oliver had a great time playing in the waiting room again, and gave lots of hugs to Diane, the secretary, who adores him. And he didn't break anything. Or throw up.

Got home and had some lunch, then Oli went down for a nap, and Todd and I worked in the garage some. Schlepped some boxes into the house, moved some stuff around, and then Oliver woke up, so that put an end to the productivity, at least where I was concerned.

Todd, on the other hand, rocked it. His slave driver, eh hem, therapist Heather came to our house for today's session to check him off on doing man-things required around the house, such as mowing the lawn. Thankfully, even through the snowstorm which had blanketed the mower for a morning, it still worked, and Todd was able to successfully mow the entire front lawn, thanks to some help, in the form of gas, from a neighbor down the street who happened by at an opportune moment (thank you, Doug!) We truly have the best neighbors. He also lent us his weed whacker, (is whacker spelled with an h? Wacker? Whacker? I dunno) so that we can edge the grass, mow down the nasties on the side of the house, and 86 the ground cover creeping out of the cracks in the drive way. However, that will probably be my job (or that of some helpful person who may stop by at some point looking for something to do. Hint hint, fathers :) ) Todd also got out a ladder and trimmed away the branches of the crazy alien bush/tree thingie that is trying to escape from the neighbor's yard, and which was scraping against the side of the house and giving me the willies at night. And he didn't fall off the ladder or cut his arm off. He did scare Heather and I though with a comment about seeing if he can find a hedge trimmer to borrow to trim back some more overhang further down. However at our terrified and "is he talking crazy? He's got to be talking crazy" looks, he reassured us that HE would not be using it, but volunteered his dad to wield the mini chainsaw. So if anyone has one of those, can we borrow it for Todd to NOT use?

Soon after Heather left, it was time for dinner, so I grabbed Todd tacos (Tuesday is Taco night at our house, thanks to Del Taco's 3/$1 deal!) and then Oliver and I went to the church for enrichment night. Hurray for nursery! I had a good time (though I still feel as anxious as a new kid in 7th grade) and Oliver did fine, I think.

So all in all, a highly successful day. Cause did you notice that there was no mention in there Todd taking a nap? Nope!

Back on the grid

We got the used phone my mother-in-law sent today, and got it charged up and connected, so Todd once again has a phone. And I can once again call him from the store/car/preschool/basement. Such a relief. It's been ridiculously difficult for the last little while without us both having phones, and no house phone.

Thanks Sue! We'll try really hard to keep it out of the dog's water this time.

The cold hard facts

Last night Todd went in for his sleep study. He'd argued with me all day about it, and kept trying to get out of going with excuses like "Oliver's sick" or "You just want me to go because you can't stand the snoring." Both of which were true, but I had to insist that he go for his own health. Our neighbor, who came over to assist Todd with a blessing for Oliver, finally convinced him of the benefit of getting it taken care of sooner than later when he told Todd about a friend of his who now has heart trouble and has to be on oxygen 24/7 because he didn't.

So off we went to drop Todd off at the ICH Sleep Disorder center, which is in a little house by Fashion Place Mall. Then Oliver and I returned home for a fun night of single-parenting a sick kid. Miraculously, Oliver went to bed after eating some yogurt, and slept all night. I, on the other hand, didn't get much sleep, and 5:30 A.M. came knocking awfully early.


Especially when I woke up to this:


Snow, people! And it's not even half way through October! With current energy costs I had high hopes of being able to tough it out and not turn on the heat until November. But with a sick kid, and now snow, it's time. And of course we haven't been able to get space in the garage to park the car yet. There's space, but it's not all together. We'll work today on combining those chunks of clear space, and see if we can't get a spot big enough for one car and one scooter. I'm hoping and praying that we get another warm spell before winter hits in earnest. I knew this storm was coming, but we still weren't able to do all that we needed to do to winterize the house/yard. Today sprinklers must be dealt with, next week I must look into adding insulation in the attic, getting that space in the garage, and if it dries out, mowing the lawn one last time before getting the mower emptied and stored.

Despite the snow, we made it home without incident, and Todd headed straight back up to bed. We should get the results of the study in about 4 weeks. Nice.


I, on the other hand, will not be getting any more sleep, because Oliver decided that he's up for the day. At least he seems to be feeling better.

Gratitude

Someone recently commented on my personal blog that a remark I made to her in a time of need really helped, and it helped me to know that something I did/said helped someone else. To that end, I hope that what I have to say will help someone else in like manner.

I've been thinking a lot about gratitude lately, and I have a lot to be grateful for. Recently I went to the credit union branch to deposit a check that was given to me, and when the teller handed me the receipt showing the current balance, I was amazed. It brought tears to my eyes to see the generosity that people have shown to our family. I know who a couple of you are, but I won't mention names or specifics on here because I don't know who to thank for the anonymous contributions. But I wanted each of you to know that I am grateful, and that it has helped us tremendously. As the bills have now started coming in, I'm flooded with relief and humility when I'm able to just write out the check. Well, I pay on line, but still. To know that I don't have to stress about where that money is going to come from, it's just there, thanks to you wonderful people, waiting to be used. Thank you, each of you, from the bottom of my heart.

I also have been aware lately that many, many people are reading this blog. Just the fact that you read means a lot to me, to know that you care enough to check the blog. I've added this site to my Google analytics, so in a few days I should have some stats to report. Should be interesting, and I wish I'd done it a long time ago. Ah well. However the point is that because so many of you read, including family, friends, coworkers, ward members, neighbors, etc, I wanted to publicly thank some people specifically, to recognize them, let them know that they really did help, and made an immediate impact on our family, and my ability to cope with the present (on going) Trial.

My sisters. Especially Tali and Halley. When the chips are down, there's no one I'd rather have on my team. They were my right and left hands when Todd was first hospitalized, fetching and carying, tending Oliver (for days at a time) watching the dogs, getting Todd's stuff from work, setting up the trust fund, and myriad other tasks that I just couldn't have done myself.

My mother-in-law Sue, without whom I would certainly have been shipped off to the funny farm long ago. For coming, and staying, and cooking and cleaning, and tending, and listening, and understanding, and advising and helping. 2

My Neighbors, Jan and Jim. Saints in the truest sense of the word, I'm telling you. Thank you for being allert to something being not right at our house, and caring for a couple you'd barely (if ever) met. For checking our mail, keeping our garrage opener, watering the lawn, and for sitting by me in Relief Society.

Our Hometeacher and former Elders Quorum President, Jason. For checking on us, mowing the lawn, and just being there.

Our dear friends, Misty and Jake. I couldn't ask for better friends. For pinning me down and making me take the time to go to the temple. For watching Oliver, letting the dogs out, and for listening to me complain.

Our wards, past and present, especially Anne and Kathy for organizing them, for all the dinners both at the hospital and in my freezer. "That there shal not be room enough to receive it." Very nearly.

And Everyone else, for the prayers, the fasting, putting our names in temples around the world, and the continual support and love. Please know that each and every night we pray for all of you, and ask for the choicest blessings in your behalf. Please know that you made a difference.

Just a quick FYI

For the time being, if you need to call Todd, you'll have to call my phone, as his now out of commission, until we buy a new one. Side note, anyone have an old Verizon phone we could use so we don't have to buy a new one? It should be an old one that you really don't need back, as it's highly probable that it will one day meet the same fate as it's predecessor, that of Death by Dog Water.

The joys of Two.

Don't ask me what the draw is, but for some reason Oliver finds it fascinating to abscond with random articles (sometimes his own toys, books, shoes, sometimes random household junk, sometimes small electronics, i.e. cell phones, PDAs, PSPs, remote controls, cordless mouses...) and scurry stealthily up to our master bathroom, where the dogs water was safe for a blissful 3 seconds, and make like Michael Phelps. But here's the weird part. He then grabs the little swimmer out and pulls up his shirt and sticks it, dripping wet and cold, on his bare belly.

???

Yeah. Either that, or sometimes he just sucks the icky disgusting dog-backwash water off.

Oh, and while I'm on the subject, if you're at our house, you might want to leave your valuables in your car. Unless they are waterproof. Or you are looking for an excuse to get a new one...