Thirteen Years

Thirteen years ago today we were hovering over our 8 year old daughter's bed, in the PICU at Oregon Health Sciences University Hospital, wondering if she would live through the incessant seizures she'd begun experiencing the day before. She was wearing a diaper because she'd wet herself with each tonic clonic seizure, and in her confusion Rachel kept tearing the diapers off, and asking where her underwear were. We kept explaining, but she just couldn't process anything that was happening.

Rachel would stay in PICU for two days, while doctors and nurses came and went, doing tests, taking blood, changing medications, doing whatever they could to not only make the seizures stop, but try to figure out what was causing them in the first place. We never did get an answer to the cause, and to this day have no idea why our precious child suddenly started having seizures.

Once the seizure frequency had slowed to the point that the doctors felt she wasn't in imminent danger of injury or death, Rachel was moved to a private room in the children's hospital next door, and we would be there for 7 more days. Rachel was given at least 3 seizure drugs while in the hospital, in addition to sedatives. Depakote caused psychosis, and made her see things that weren't there, and believe that her room had a good side and a bad side, and she would panic if anybody stepped into the bad side. One entire afternoon she said only "I love you" to everyone she saw.

I've never cried so much, or been so scared, at any other time in my life.

Once we had two seizure free days behind us, the doctor wrote us a bunch of prescriptions, gave us some information printouts, and sent us home with a child we felt like we didn't know anymore. I could write a book about everything that's happened since then, and even though they've been absolutely the hardest years of my life, and definitely nothing I would ever have imagined, we have survived, my marriage is still intact, and Rachel continues to persevere.

The fact that my child has to live with epilepsy absolutely pisses me off. I want to be all noble, and talk about how this has been a blessing in its own way, but it's not. My little family has been pushed to its limits, we've all been robbed of opportunities and options we would have had otherwise, and sometimes I just need to vent about the unfairness of it all. No, life is not fair. I've always known that. I was certainly not raised with any other expectation. Still, my sweet, sassy, bright as lightning 8 year old did nothing to deserve the 13 years of struggle, the thousands of seizures, the wagon load of drugs, the anxiety and depression, and the isolation that came with this condition.

At age 21, Rachel is still working to catch up with her peers. She'll probably never drive, or live alone. She can't go swimming without someone being there, and we are cautious about her even taking a bath. She's just now really beginning to feel confident about doing things on her own, away from home. We plan outings so that she can practice her skills, and push her comfort limits. Having Stewart by her side has given Rachel more confidence, but she still likes knowing that one of us isn't too far away.

Most recently, we've been able to reduce one of her prescription medications, with no increase in seizure activity, and she's even been able to better cope with the seizures she does have. Rachel hasn't had a full-blown anxiety meltdown in weeks, and though we know that she's not cured of them, we do feel better knowing that she's making progress. We credit her use of two different sublingual cannabis tinctures for her most recent progress, and we are so grateful to live in a state in which we have this option legally.

Thirteen years. I am grateful beyond words that we still have Rachel with us, that the seizures haven't taken her, but we are fully aware that each seizure she experiences has the potential to end her life. Many doctors still don't tell their patients about the risk of SUDEP, which I find unconscionable. Forewarned is forearmed. I might not be able to keep the seizure from happening, but I can take measures to increase her chances of surviving it if I know what the real risks are.

Even on my worst days, I can't help but be hopeful. I can't help but be impressed by Rachel's positive attitude, and willingness to keep putting one foot in front of the other, never letting us see it if she's having doubts of her own. She sees a really good psychiatrist, who is helping immensely, and we are doing what we can to support Rachel's efforts to mature and take control of her own life.

Thirteen years sometimes feels like a hundred, and yet it went by in the blink of an eye, with vague, hazy memories of doctor visits, medication changes, hours spent on the phone with insurance companies, pharmacies, and physicians. A kaleidoscope of images and experiences so vast that I can't imagine trying to bring order to it all.

There are so many things I wish I had understood better at the very beginning; that I hadn't been so shell-shocked and consumed with Rachel's daily care that I could have seen more clearly, in time to make a difference in her life today. Woulda, coulda, shoulda, yadayadayada. When we know better, we do better; I know that's true. I try to remember that I'm doing the best I can with what I've got, and I am grateful for all the people in our lives who support us every day. We have an amazing support system, and I know what a gift that is. I'd just love to be able to take our lives for granted, just one more time; to be able to assume that everything will be okay, and the universe is unfolding as it should.

-Kelly

MiyakoCon and Good Days

Big doings in Rachel-world today! A young woman with whom Rach attended middle school decided that she would start up a new anime convention, and today was the day for the first one. We learned about it just this week, and Rachel got very excited, but wasn't sure if she was up to going. She had a couple of seizures this week, and her confidence in her ability to cope had taken a hit.

Yesterday she announced that she really wanted to go, and was super excited, and she was going to just have me drop her and Stewie at the door. Everything went as planned, we made a stop at the ATM, and we arrived at the venue, enjoying the sight of all the young people outside who were posing for pics in their cosplay outfits and colorful wigs.

Rachel only stayed about an hour before calling to let me know she was ready for pickup, and when I arrived I found her deep in conversation with a young man, and they were exchanging Facebook info. Her cheeks were pink, and she had a huge smile on her face. I almost cried with joy. Rachel has so few days that include opportunities to meet new people, and make special connections that when it does happen it's remarkable.

I asked why she didn't stay longer, since it was obvious she was having such a good time, and she said that it was so busy, and bright, and loud, and she had already spend so much money, that she decided to leave while she was still having fun, and not push herself to the point that she panicked and then ruined the entire memory. That made me a little sad, but also very proud of her for being mature enough to recognize her limits, and know when enough is enough.

This has been a good day. :)

Rumination and Medication

On Monday the 15th, Rachel had a regularly scheduled psych appointment, so I had some time alone in the waiting area. After about 30 minutes Rachel brought Stewart out, and asked me to take him out for a break, and then I kept him with me for a few minutes, and we waited together.

While we were waiting, my mind was on many things, but having recently updated this blog, my thoughts veered toward what sorts of things we want to share about our journey.

The only major thing we've not shared here is that Rachel is a medical cannabis patient, and we started this treatment 3 years ago this month. We have tried pre-made tinctures and oils, and homemade products as well. All of them have helped to at least a small degree, but mainly with the rampant anxiety she lives with, and not so much with the seizures.

Our most recent change has been to begin using a sub-lingual with a 1:1 THC to CBD ratio, in an Indica strain, which is very helpful for the anxiety, and for helping with bedtime wakefulness. It was developed and the product created by the wonderful people at Oregon Microgrowers Guild. Rachel has been using it 3 times a day, steadily, for the last two weeks. In that time she's had one very small seizure, and though she's had some anxiety, she hasn't had a meltdown, or even a moderate attack.

We always have hope that whatever newest treatment we're using will be the one that makes the difference in her life; that it will make her life more manageable, and less stressful. The jury is still out on this tincture, but the nice thing about cannabis treatment is that there are so many options, and all of them are less scary than a new pharmaceutical treatment.

Rachel is still taking all of her prescribed medications, but cannabis has allowed her to wean off Klonopin, and we are hoping to make a reduction in her very high dose of Keppra.

This sub-lingual oil is in a healthy coconut oil base, and is kept refrigerated, so that's why it looks like it has white spots. The dosing is tiny, so there is a lot of room to increase. This 1 ml syringe contains 20 doses at our current level, and Rachel is dosing 3 times a day. Because of the low level of THC, Rachel is still able to concentrate at school, and doesn't feel "dopey" the way she does when she has to use drugs like Klonopin.

Please feel free to comment, ask questions, share knowledge, etc., but save your criticism. Rachel is an adult, and none of her treatments are pursued without her consent, which she is fully capable of giving. When you've almost exhausted all the prescription options, and you don't want to just sedate your child into oblivion, you get creative in your thinking, and your mind opens to trying something that humans have used safely for thousands of years. 

We believe that someday soon cannabis will be rescheduled at the federal level, and people all across America will have the option of treating their ailments with one of nature's most helpful plants.

Waiting For Rachel

Well, the post title pretty much sums up my life these days. The last couple of years have been so full, and I so wish that I had been better about updating here, and sharing all of the changes with you.

Sadly, Rachel and Jonah split up, but she enjoyed the time she had with him, painful as the end was. There was a lot of wisdom gained from the experience, and she grew in new ways as a result.

Rachel began taking early childhood education courses at the local community college, going half time, and taking Stewie with her, of course. She's currently taking a term off from that, and very much enjoying a Drawing class, while deciding whether to return to school next term, or devote her time to another opportunity.

Expect to see a slew of photos, and minor updates, while we continue our journey, and Rachel continues to expand her horizons. Here are a few recent images, taken at school:

Sometimes Stewart has to wait for Rachel, too. At the dentist, the hygienist's space is really too small for him to be in there, and every now and then he just needs a break from lying on a hard floor, or I'll take him for a walk and break for a few minutes, and we don't want to interrupt class to return him, so we have to wait a few minutes for Rachel to come get him.

Time Keeps Slipping Away

What a year it's been!

Shortly after my last post Rachel graduated from high school. She's our only child, and we've been through so much as a family in the last 18 years, but she is such a light in our lives that it seems like it all went by in a flash.

This whole last year was huge; senior year, Stewart came to live with us, Rachel's boyfriend came back into her life after moving back from Idaho, and then announced he'd be leaving for the Army in May. We crammed a lot into that 9 month school year.

Jonah gave Rachel a promise ring for Christmas, which was huge, and the kids spent as much time as they could together, in between school and dog training, before Jonah had to leave again. 

There was prom...

And a month later it was time to say goodbye, as Jonah left for boot camp...

He did great, and graduated, moving on to AIT in August...

We took a short family trip to the coast after Rachel's graduation, and we bought a one year membership to OMSI. Rachel planned to take a gap year before going to college, because we all needed a break, and because she and Jonah need to know where he's going to be based before deciding what the future holds.

Rachel and Stewart outside the Oregon Coast Aquarium...

October 19, 2013 will be the one year anniversary of Stewart coming to live with us. He has changed our lives in immeasurable ways. He is a wonderful companion to Rachel, loves to do his job, and is just a lot of fun. Rachel is learning every day how to be more responsible for herself, and taking on more duties around the house. 

We stay busy, we have fun, we laugh every day. It could be a lot worse, and we are grateful. 

-Kelly

They Did It!

On October 19, 2012 a wonderful dog named Stewart came to live with us, and to be a partner for Rachel, as she learns how to be an independent adult.

This is their first Hello

Over the next several months, Rachel and Stewie bonded over grooming, and cuddles...

We helped Stewart celebrate his second birthday with a peanut butter and kibble 'cake'...

Stewie even accompanied Rachel to a production of The Nutcracker...

As much as we loved having fun with Stewart, he was here to learn, and to work, so he and Rachel did lots and lots of training, every single day, everywhere they went... 

Still, there is always time for play, and Stewart is a guy that knows how to have fun...

So, Rachel and Stewart have bonded, worked, played, and practiced for the big day that they had their certification testing, where Stewie had to show off all his skills, and Rachel had to show that she knows how to get the most out of her partner...

They nailed it! Rachel and Stewart are now an official Certified Team. Soon Stewie will have his ID card to show off, but this doesn't mean the team is done working. They still train and practice every day, so that they both keep their skills sharp, and are confident when they go out each day.

We have all of you to thank for this amazing gift. Without your help and support, this whole process would have taken so much longer. With Stewart at her side, Rachel can go out into the world with confidence, knowing she has a loving partner, who will stay by her, and alert someone that she needs help in the event of a seizure.

Brett and I can never thank you enough for this gift to us, as well. We are forever grateful. <3

-Kelly

Okay, Mary, Here You Go!

I made a post on Facebook about a thing that happened today, and one of my friends said "Copy and past that into the dog blog!", to which I replied something to the effect of "but I'm sooo busy!" 

So, here's the post:

Today was a big day for Rachel and Dog. The trainer came to put them through their paces, in hopes of being able to give a 30 day notice for certification testing. They have just a couple of things to perfect, but overall are looking very good! The notice is going in, and the team will have 30 days to work, work, work on their weak points before the trainer comes and does a video that will be turned in to Paws for review. Our hope is that they will be certified before graduation, and we can have a big certification/graduation celebration.:)

Yes, this is a Big Deal, and we are both excited and nervous. Recently, another friend asked when we'd most recently updated, so I ran over here to look. Yikes, December 28th was over 3 months ago. That's a really long time in the blogiverse, but I know we have some folks who been following along from the beginning, and we owe to you to at least try and keep you up-to-date.

It would be so much easier to be excited about blogging if I could share more about Dog, and when the team passes their certification test, I'll be able to do just that, with tons of pictures, and fun stories.

Until then, here's a pic of Rachel and Dog enjoying a sunny afternoon, and some bonding time.

Training is never really finished. Even once they're certified, they will still have to practice commands, and do seizure simulations on a daily basis. Every day, until it comes time for Dog to retire. They will also be re-certified every two years, so must keep their skills sharp.

Rachel will graduate from high school in June, her boyfriend is going into the Army at the end of May, and she's working on her certification with Dog. This is a very busy and stressful time for all of us, but she's the one being graded. Rachel is holding up really well under the pressure, but has experienced a few more seizures than average lately. Fortunately, they seem to be much less impactful, and she's only had one anxiety attack in the last few months.

Dog has become a good friend, and a source of comfort and support for Rachel. He goes where she goes, though he won't be attending Prom next week. He's getting the night off as he hasn't learned how to dance yet, and Rachel happens to have a very handsome human date. I'm not really looking forward to trying to explain to Dog why he can't go, and keeping him from pacing a rut in the floor until Rachel gets home.

So, there's my big, long over-due update. I do apologize for the huge gap, and I would promise to do better in the future, but I think we all know that I can't be trusted, so I'll just say that I will try and remember to update at least once a month. Feel free to leave a message if you want to know something. I will get a notice, and get back in here. :)

-Kelly

We're Still Here and All Is Well

Hello again, everyone! We're still kicking, and Dog is still with us, and training is going well.

Rachel has been working hard at both school and training, so was very ready for her two week Winter Break, which we are now halfway through. She was hugely surprised when her boyfriend presented her with a promise ring for Christmas, as he will be going into the Army in the Spring, and they are committed to weathering the separation.

Dog's training is going well in most respects, and he's learning more all the time. We have begun alarm training, and though he's motivated and wanting to work, he's having a hard time with the lanyard he's supposed to pull. We've surmised that because the cord is black, and flat, he can't see it well, and has a hard time getting his mouth around it.

We have a plan to replace the black cord, with a bright yellow nylon cord, and put a big blue bead on the end for him to grab. I did a ton of internet research, hoping to get clues to which colors dogs see best, and it looks like yellows and blues are the best. We're hoping to get that sorted this weekend, so that training can really move forward, and he won't get so frustrated and confused.

So, for those of you who are still checking in from time to time, I apologize again for the amount of time between entries, but I can't promise I'll get any better anytime soon. Rachel still has another semester of high school, and then right at the end of the year she'll be working on certification with Dog, her boyfriend will be leaving for the Army, and she'll be preparing for graduation. Things are about to get real around here.

Rachel experienced an increase in seizure and panic activity for the first couple of weeks that Dog was here, but then had a lovely 4 week break, which was such a gift. Dog is sweet, and bouncy, and playful, and we love him, so we very much hope the team continues to do well, and will be certified soon.

I'll leave you with a photo of Rachel and Dog taking a walk in the park, on a gorgeous Winter day...

-Kelly

I Know, I Know...

I am a truly horrible blogger. Dog has been with us since Oct. 19th, and you're just now hearing about it. If you are on Facebook, you've seen some of what's going on around here, but we can't openly share his identity for some time yet, so I'm afraid you'll have to patient awhile longer.

I do have a few photos that don't give away too much, but I'm even nervous about sharing those. I simply don't want to do anything that will mar Rachel's chances of keeping this fantastic resource.

Training has been going well. The first week was sort of rough, while we all got used to Dog, and he got used to us and our schedules. We had to make a change to his sleeping routine, but it's working out well now.

Rachel has been working hard, and learning how to bond with Dog, which is something that is work for her. She's not terribly demonstrative, though we love on her all the time, but she's working on changing that. She's learning to use an authoritative tone, which we call "mom voice", and that does make a difference.

Just today, we took Dog out in public, on a short trip to the county dog licensing office, where he was licensed for 3 years, and they waived the fees because he's a service dog. I wasn't expecting that, so we used part of the money saved to buy Dog a new toy. He was a star when we took him out. He loves his working vest, and is better behaved when wearing it. His heel work is fantastic, he stayed in a down/stay beautifully while we waited, and he made us proud.

Rachel and Dog are napping now, after their big adventure into the world this morning, but I'll leave you with a couple of pics...sorry we can't share his face yet, but we hope it won't be long before the team is certified, and we can show you how gorgeous he is.

Dog loves the view out the front window

Dog looks spiffy in his work vest, and loves to wear it.

-Kelly

I Wonder What The Hamster Will Think

We've been running around, cleaning out Rachel's room, shopping, doing research on vets, etc., and totally forgot to update the blog with the news that Rachel's dog should be here sometime next week! We got the call over a week ago, and my head has been spinning ever since.

The dog has finished his training, and once all of the arrangements are in order, we'll get a call from our local field rep to set up a time for his delivery to Rachel. 

This is me, freaking out just a little. O_0

We've now got food, food bowls, a brush, poop bags, seat cover for the back seat of the car, and just need his bed and a few simple toys, like a Kong and a Nylabone. No treats besides his regular food, at least during the bulk of his training time, from what I understand.

We'll have a lot to learn, but we trust our rep/trainer to walk us through it all. In the meantime, we clean and organize, and try to remember what it's like to toddler-proof a house. It's been a long time, and we are accumulaters of 'stuff'. Rachel is really digging in to the piles in her room, making some hard choices, and cleaning out to make room for his crate, and pick up stuff that he might find tasty. We're a bit concerned that the hamster (or her droppings) might fall into this category. :/

So, that's all for now, and I promise to try harder to remember to update when the dog actually arrives, but things may be a bit crazy around here for awhile. At least it'll be in a good way.:)

-Kelly

Ants In The Pants

Here we are, on October 1st, and with any luck Rachel will have her dog by the end of the month. We haven't yet received a phone call confirming how things are going with training, or when the dog will actually arrive, and I'm going to be an antsy mess until we do. 

Rachel had 4 seizures over the weekend, and though they weren't really big ones, we still couldn't help but hope that having her dog would somehow help make the process easier for her. We are very much looking forward to Rachel having her furry buddy to cuddle up with when she feels lousy.

Once we get the confirmation phone call, and know that everything is a go, we can begin to plan, and shop, and prepare. We are really looking forward to that, because then it will seem real. Right now, it's still a probability, and not a given.

Thanks for your patience with my lackadaisical blogging style, but there really hasn't been much to share the last few weeks. We're just waiting for word. I will certainly update when I know more.

-Kelly

The Light At The End Of The Tunnel Is A...

Seizure Response Dog, and it's coming straight at us.:)

I've been agonizing over this post since Rachel got a phone call a few days ago, letting her know that a dog had become available, and would likely be here by the end of October.

O_o

There have been few times in my life that have actually rendered me speechless. This time, I was speechless, and sobbing at the same time. Poor Rachel thought something was really wrong when I handed her the phone, so she could hear for herself. 

We are beyond thrilled, and grateful, and nervous, and, and, and...

Still, it's not a done deal yet. The dog needs to finish its training, and then pass a final physical before it comes to live with us. After that comes several months of team training, with our local trainer, and then a certification test. Once the test is passed, Rachel and the dog will officially be a team.

So, we can't share specific details about the dog, like its name, but I think it's safe to share that it's a golden retriever, which many Seizure Response Dogs are, and male. Believe me, as soon as we can, this blog will be inundated with photos and updates.

We can't thank our 'village' enough for everything you've done for Rachel. This dog is going to make her life better, and bring down her parents' stress levels, in a huge way. There is a lot of work ahead, but it will all be worth it.

-Kelly

The Dork Lord Returneth

She doesn't update her blog very often, but when she does, it's usually entertaining...

Ninjas Are Random

-Kelly

A Little Heart To Heart

This is going to be just a short follow-up to the last post. I didn't want too much time to pass before recording the conversation Rachel and I had regarding all of the stuff I mentioned in the last post about school, SSDI, and the medical power of attorney.

I sat down with her today to briefly discuss the basics of those things, and lay out the pros and cons of the SSDI filing, as I know them. There are simply too many things that I myself don't understand yet, but I wanted her to know just what was on the table, and how much she's going to be responsible for, in just a short 5 months.

Rachel is not in any way mentally impaired on a normal day. She passes all the school benchmarks, though she has to work harder to get there. Her impairment comes from the seizures themselves, and side effects of medications. She is slightly socially impaired, and rather naive in some ways. In others, she regularly surprises me with her insights. 

What this comes down to is that I've been putting off having this conversation with Rachel, because I was worried about what her reaction would be to the SSDI possibility, and what that would mean for her. I was worried that she would see that as marking her as permanently broken. We do not see our daughter as broken. We see SSDI as a way to help Rachel be independent, in the event that she's not able to hold a steady job. 

Our goals for Rachel's life haven't changed from what they were when she was born: We want her to have every opportunity possible, no matter her level of ability. We hope she'll be able to go on to college, have a fulfilling job, and a loving, stable relationship. Our hangup over asking for help, or trying to be completely self-sufficient, has to be set aside in the quest to do what's best for her. 

So, my little update became a full-fledged post. I guess I had more to get off my chest than I thought.

-Kelly

In Which She Rambles

This may be a rather stream of consciousness post, I'm not sure yet. Mainly, I just don't know where to start today.

Summer break has been good, but will be over with the first day of school, on Sept. 4th. In a way, I'm ready to get on with it, get it over with, and get this kid graduated. In another way, there is so much about to happen with her that it's sometimes overwhelming, and I just don't know what should be done first.

Rachel will be 18 in January, which means she'll be the one in charge of decisions having to do with school, and her education plans, etc. It also means that we'll have to prepare a medical power of attorney, just in case she's unable to make decisions for herself at some point, and we need to really consider the possibility of SSDI, though that can wait until she's out of school, and we get a better idea of whether she'll be able to maintain a job with her seizures and anxiety issues.

One of the problems we have is that Rachel's seizures seem to always be changing; frequency, type, manifestation, time of day, and so on. Always unpredictable. Just when things seem to be settling into a somewhat predictable rhythm, everything changes, and we're set off balance again.

Just this week, she's developed a new aura, where she feels like she's twisting to the side, and feels dizzy. Her right hand has also started to shake at the beginning of some seizures, which is completely new. Rachel has a left temporal focus, so right-sided movement is to be considered within the norm, but anything new makes me nervous.

Rach and I are in the habit of taking walks in the downtown park on a regular basis, and feeding the squirrels. The other day we decided to walk up the Derby track there, and we were making good time, and were almost at the top, when Rach stopped, saying it was hard to breathe. Usually I'm winded first, so I was surprised, and then I noticed she was blank in the eyes, so I got her steered over to the curb, and sat her down just before she began to cry, and the seizure was full-on. This was the first time I hadn't brought my entire purse (with meds, magnet, and at least tissues), so had nothing to wipe up drool with, and we both ended up looking as though we'd spilled water all over ourselves. Fortunately, she was able to walk again after about 10 minutes, so we came right home, and Rach had a long nap.

So far this month there have been 6 seizures, whereas last month there was 1. This in itself has become something of a pattern, but not one we can ever count on, of course. About the time we do, everything could change.

On the upside, we've received another $150 in donations! Every bit brings us that much closer to Rachel's dog, and I can't tell you how much having that help will mean to Rachel as she moves forward to adulthood, and independence. :)

-Kelly

Big Things

After my last update I got very busy picking berries, making jam, managing our household, and then we had visitors from out of the country. Brett's father and stepmother came down from Canada, and we had a few days where we spent every hour we could with them. It was lovely, and then they moved on to the coast, and the cottage they'd rented there.

The morning they left, we got them packed up, and then we drove down to my Mom's for her annual family BBQ. The next day, Monday, was quiet and lovely, but I had a bunch of chores to catch up on, and then Tuesday we all joined Brett's folks at the coast for the night. That brings us to Thursday, when a friend of Rachel's showed up on our porch unexpectedly, and hung out with her for a couple of hours, so we dragged him out with us to do our shopping, lunch, etc.

And now it's Friday again. Now I can see why my fatigue levels are what they are. If this kid complains on the first day of school about having done nothing this summer, I don't know what I'll do.

In the middle of all this activity, I had occasion to help out a long-distance friend with a problem she was having. I got it taken care of, and then moved on to the next thing, but a few days later she thanked me by reaching out to her extended friends, and imploring them to help out with Rachel's dog fund.

As a result of her effort, and a sale of more garlands, in a span of 3 days, we received $730 in new donations! Check out the thermometer. ---->>>> :) The first donation was from the friend I'd helped out, and I cried. Then more started rolling in, and by the time the 4th donation had reached the mailbox, I was a mess. I am so glad to have the people in my life that I do, whether they live near or far, or I have met them in person or not. These aren't just pixels on a screen to me; every one of my friends is real, and I love them.

Jam-making came to an abrupt halt when our visitors arrived, and I'm having a hard time finding motivation to begin again, but I have a bunch of berries to use before they get freezer burn, so I'd best get a move on. Still, this will be a much smaller effort than last year, when I canned almost 200 jars. It's just too much for one gimpy person.

So, as is often the case, I close this entry with gratitude. There is so much good in our life, and even on the bad days, we know we have friends; people who genuinely care, and want us to do well.

Thank you all so much-Kelly

Mid-Summer Update

Hello again, everyone!


I hope you've been enjoying your summer so far. The first few weeks of break were quite busy here, with lots of visits to family, the county fair, and picking berries for jam, among other things.


We've seen a couple of donations come in this week, and we'd like to thank you all for continuing to check in with us, and share our story, and our blog, with your friends. This truly is one of those 'it takes a village' things.


A week ago we happened to be hitting up some garage sales, and met a lovely young woman named Heather, who kindly offered to help spread our brochures around to her group of friends and acquaintances. It's always so touching when we meet someone new, and they feel called to help out in this way. Thank you, (((Heather))).:)


If anyone else would like to share our story by placing brochures in their community, please just drop us a line at raisethewoof4rachel@gmail.com. We will get those shipped out to you in a jiffy.


It seems like school was just out, and already we're seeing ads for back to school sales, and Rachel's online school has shipped her supplies for this year.  As anxious as we all are for her to finish high school, we'll have a lot of planning to do this year, as Rachel turns 18, and that brings up certain legal issues and paperwork that will need to be taken care of, in order to ensure that we can continue to make decisions for care, in the event that Rachel isn't able to.


These are the kinds of decisions, and concerns, we never thought we'd have to consider when Rachel was a little girl. It's amazing how one's life can change in the blink of an eye. Now every plan for her future is filled with what-ifs, and we can't predict from one day to the next what might be happening with her. So, for now we simply work on getting through the day, week, or month, and then take it from there.


Our next adventure this summer is the annual family BBQ, and we're all looking forward to seeing our extended family, and spending a fun day, just being all together, eating, and playing in the sun. We hope that you are making the most of these good days, too.


-Kelly

Ahhh, Summer!

I hope you've all been enjoying your summer as much as we have. We recognize that a lot of folks have been suffering under massive heat waves, and high temperatures, and hope that they're getting a break soon.


Summer in Western Oregon really begins in July, and we're having a lovely streak of days in the 80s. Brett has been bitten with the fishing bug, so we've been doing a bit of scouting for likely fishing holes, and he's been trying out a few different lures, baits, and techniques, hoping to hit on the 'the thing'. So far no fish, but hope springs eternal.


This weekend is the Marion County Fair, and my cousin will be having a booth promoting her rescue; Goodfellas Pet Rescue. Rachel and I will be volunteering a few hours each day, so come by the Americraft Building at the Oregon State Fairgrounds, learn about how to adopt a wonderful dog, and say hello.


I decided that I wasn't completely thrilled with my custom window paint, so changed it today, and now my back window looks like this:

If you see us out and about on the streets of Salem, be sure and give us a honk and a wave.:)


Rachel's been having a good break so far, though there was a week in June that had more seizures than we've been seeing for awhile. Still, the panic attacks haven't been as impactful, so that's something to be grateful for. School will be starting again before we know it, and this is her last year of high school, so it will be busy. We're trying to cram as much fun into summer as we can, and hope you are, too.


-Kelly

Happy 4th Everyone!

Happy US Independence Day, everybody! I hope you all have a fantastic day, no matter how you choose to celebrate.


I was thinking today that it's been just over a year now that we learned Rachel was officially a client of Paws With A Cause. What a year it's been. We've had so much support, and met some wonderful people. Even so, we're really hoping to get funding wrapped up by the end of the year, so that Rachel will have her dog next year.


We've had a long, wet spring in Oregon, but this week the weather really turned to summer, and I was finally able to wash the car, and do a little enhancement to her appearance:

With luck, we'll continue to have dry weather, and the paint won't come off for some time. We plan to stick brochures under the wiper when we park the car in public, and really hope to get some good feedback that way.

Thanks so much for your continued support and encouragement, and please continue to share this blog with your friends.

-Kelly 

School's Out For Summer!

Happy Summer Solstice, everybody!


I'm always torn about this day; on the one hand I love it because it's the official first day of summer, but on the other I'm a bit sad because it means that the days start getting shorter again. Why can't I just enjoy the first part, and not worry about the rest? ;)


School is finally out, and Rachel did quite well this semester! An 'A' and 4 'Bs'! We are very pleased with her performance. Rachel's anxiety levels are so much lower than they were last year, and that makes it easier for her to concentrate and focus.


Today we'll be packing up her school books, and getting them shipped back to Connections, so they can send out her materials for next year. Just one more year of High School. As hard as some of the last several years has been, it still seems to have just flown by. Our little chick will be ready to fly the coop sooner than we're ready for, I think. Really hoping she gets her dog by the time she graduates, so she can do some training, and be able to safely move on with her life.


I know I haven't written much lately, and for that I apologize (again!). The end of the school year was hectic, and we were enjoying a long seizure-free spell, which I really didn't want to jinx by saying anything about it. Sadly, that came to an end on Sunday, when Rach had a seizure. The rest of the day was fine, but at just after 5 a.m. on Monday, she had another, and then about 30 minutes after having her morning meds, she felt sick and needed to vomit, which caused yet another seizure. Vomiting and seizures really do not go well together, and can be very dangerous. Fortunately, she didn't aspirate, but quite a bit did come out her nose. We had hope that would be it for the day, but at about 5 p.m. there was yet another seizure. Epilepsy really sucks.


Tuesday was much better, but we stayed close to home, just in case, and there were no more problems. We finally determined that the problem might be with an antibiotic that she's been taking for an infection in her eyelids (I know, if it isn't one thing, it's another), so we've spaced out the time between her regular meds and that one, and made sure she has food on her stomach when she takes it. It seems to be working, but we'll be watching for any problems.


So, I think we're all up to date now. Oh! I almost forgot to share that we received a lovely donation from a couple of very special ladies. Shout out to Jen and Carol! We had the distinct pleasure of becoming acquainted with Carol just a few months ago, during a time when she was facing a serious struggle of her own. Sadly, she lost her battle a couple of weeks ago, but she reached out to us in a tangible way, giving her love and support, and never lamenting her own fate. She was brave, loving, funny, talented and optimistic. Her daughter Jen is a lovely reflection of her mother, and we are blessed to call her friend.


-Kelly