How My Husband is Doing This Spring

Hello there.

The last detailed update about the state of my husband's chronic health problems was about two and a half months ago. There have been a few changes.

We now have another condition to add to the list: low thyroid (most likely due to taking the anti-arrhythmia medication, Amiodarone). This news actually gave us a little hope because Mark can take another medication to bring his thyroid level back up, and maybe that would help how he feels overall.

Since seeing his Endocrinologist, Mark's dosage of Levothyroxine has been upped twice. It has taken many weeks, but he is a bit less tired and bit more hungry.

One step forward....

Something's Gotta Give with Gun Violence

Tomorrow is the one-year anniversary of the shooting at Marysville-Pilchuck High School.

I live in Marysville, Washington (and have two kids in school). It's a bedroom community bursting at its borders with 10 elementary schools, four middle schools, and another four high school campuses.

Children everywhere!

There are not a lot of violent crimes here. Still, on Friday, October 24, 2014, a 15-year-old boy brought one of his father's handguns to school with him, walked into the cafeteria, and shot five of his friends and then himself, all in the head.

Only one of the kids survived. He was the shooter's cousin.

Go Fund Us!

At my husband's behest, I set up a GoFundMe campaign last night.

Hall Home Help

I titled it "Hall Home Help" because we need to do some things around our house. And I enjoy alliteration.

We're going down this path because we tried applying for home equity loans/lines of credit but were summarily denied by three different banks.

Salvaging the Broken Pieces

A year ago today I wrote about feelings my husband was having about his chronic illnesses, his abilities and/or disabilities and his future. It was less than a week before his dialysis access clotted off, which was the beginning of months and months of complication after complication for him....

Bringing us to where we are now. (I realize I still haven't given you all a clear update on how Mark is doing. Will work on that.)

At the time I shared:

...while he's happy for me to get the opportunity to do a little traveling, he is also jealous because he doesn't think he'll ever get to. He went on to say: "Nothing is going to get any better for me. It's only going to get worse.

It's like he knew what was coming.

9 Quotes to Help with Grieving

Ever since the tragic event that occurred in my town last Friday,

I haven't been able to give a darn about anything I would normally blog about.

Between that and the grief and sadness I've already been feeling from

all the changes in my husband....plus all of the family losses my BFF has experienced this year....

I thought I'd share some helpful, inspiring, VALIDATING

quotes about grief and loss. To help myself, and maybe you too if you need it.

How I Feel About Doing a Charity Walk

My husband is a Type 1 Diabetic (juvenile onset/insulin dependent) and has been since the age of nine (he's almost 46). He suffers from many of the complications associated with the disease, including kidney failure, for which he has been on in-center hemodialysis for the last 12 1/2 years.

And that ain't even the half of it!

Over the 20 years we've been together I've had myself quite the education on Diabetes. Heck, I even had Gestational Diabetes (very similar to Type 2) in both of my pregnancies.

But I've also built up a bit of a hard heart and even bitterness toward the idea that the "powers that be" could actually be trying to find a cure.

To me it feels like Diabetes is thought of as just a "condition" MILLIONS of people have to "deal" with, it's completely manageable and "if you just keep your blood sugars in good control you'll be fine".

I hate to burst anyone's bubble, but that simply hasn't been what I've observed about the disease.

Life is Too Short

Life is too short for....

Beating your head up against the wall, never to accept the things you can't change.

That last phrase obviously refers to the serenity prayer:

I live by it. I have a small printout of it in a cheap blue frame on my bathroom wall.

Admitted to the Hospital

It may seem silly for me to think about blogging when my husband has just been admitted to the hospital to treat an infection....

The thing is, he and that are a huge reason why I blog. It is my desire to blog my way through the craziness that is Mark's chronic illnesses. For me/us and for others. It's our story, our journey.

So I will keep writing.

Not My Favorite Cause

Finding a cure for Diabetes is not something I typically get fired up about.

I tend to feel bitter about the chances of anything ever actually happening on that front, so I choose to care about other, more tangible, things instead.

Then my daughter wrote a short essay on who her role model is. She named her dad, and that she'd like to do something to help find a cure for Diabetes. It made me think.

And my heart softened a bit. If my child cares about something, I do too. I can't not be supportive of my children's hopes and desires. "Supportive" is probably one of the top three things moms are.

I could never in good conscience squash Camryn's idea that she might be able to help in some way. I can't say, "There's no use, dear, it just won't happen. Forget about it."

You don't take away a person's HOPE, no matter what you think.

No Longer a Candidate for Kidney Transplant

I just opened a letter from the University of Washington Medical Center dated March 5, 2014.

I hadn't bothered to open it when it first arrived because I already knew what it contained. Mark's nephrologist had called us into his office to tell us what the UW transplant surgeons decided:

"Your risk of transplant surgery and immunosuppression outweigh the benefit due to multiple medical co-morbidities including coronary artery disease and vascular disease."

"We understand that this is a difficult time for you, but transplant is not the optimal treatment for all patients with kidney failure. Due to your high risk for complications, the physicians feel you will do better on dialysis. Our transplant team supports the best treatment plan for you as an individual."

10 Reasons I'm Grateful for March

Oh my God, February is OVER, you guys. Seriously so glad about that.

Remember this?

That's how I felt about last month. I mean, it had a few good moments (I think), but mostly notsomuch.

So yeah, I'm thankful for a brand new month. It may not technically, actually make any difference, but it does psychologically. It's why I don't hate Mondays. I see them as a fresh start too.

But I digress. Here are the reasons why I think March will be better:

1. February sucked balls.

2. Mark's arm seems to be healing well. The only thing standing in the way of it being used for dialysis is him (he's afraid it will hurt too much).

3. It has now been two years since Mark's worst medical crisis (that shouldn't have been) to date. The one when the doctor told me that might it. They were wrong.

4. The weather should start improving from here on out.

5. Speaking of weather-ish things, spring will begin this month and I love spring.

6. I leave for my very first cruise on the 5th!

7. I'm going on a cruise with my BFF to celebrate the milestone of turning 40 even though I'm not actually 40 yet. We're going RIGHT BETWEEN our two birth dates.

8. I'm going to relax, drink festive beverages, eat delicious food, gaze at the ocean and take pictures of all of it, Instagram them, send drunk tweets then come back here and regale you all with the details.

9. OK, this is really weird, and I can't believe I'm flipping my opinion, but I'm happy daylight savings time will be back. I used to think it was an outdated practice and who are we to manipulate time and all that, and we'd probably be just fine letter things happen naturally. But now, I like the extra light at the end of the day, partly because I can't see shit in the dark and because my son can play outside longer. Maybe I'll change my mind again, but for now I like it. The only downside is getting used to it. ALWAYS throws things off at first.

10. Did I mention my cruise? :-)

Heavy Burdens Take Their Toll

I don't mean to harp on this subject, but suddenly doing a little traveling by myself has brought some not-so-happy things to the surface for my husband..

On the Thursday I was gone for my friend's birthday, Mark spent the whole day alone. He didn't have work, the kids were at school, plus the schools got locked-down due to some police activity and they were both late getting home.

Most of us LOVE having that much time alone. Some never get that kind of time.

I assumed Mark would love it. I thought he might sit around in his boxer briefs and a holey t-shirt playing Xbox and rocking out.

Instead, spending the day by himself only served to give him ample time to dwell on the negative aspects of his life.

"Negative" is not a word I usually use in any sentence that has to do with my husband.

Mark used to be the most positive individual I knew. He taught me about looking on the bright side, focusing on the good and being grateful for what one has rather than what one doesn't have.

He has been my rock and my inspiration in living life as fully as you can under whatever circumstances you have.

But he has been living with Type 1 (insulin dependent) Diabetes for 30 years. Would be 36 if not for the kidney and pancreas transplant he had for six years.

He has had to endure blindness, neuropathy (nerve damage), kidney disease (for which he has been on dialysis for the last 12 years), heart disease (3 heart attacks, double bypass and arrhythmia) and a toe amputation.

Mark is understandably weary of it all.

Living with chronic illness is a notorious cause of depression. Yes, let's do heap depressive feelings on top of physical ailments, shall we? Because what's ONE MORE thing?

There are medications for depression and he is on one. He started taking it again after his last heart attack in November. It helps, but as my therapist says, Mark keeps "bumping up against" some rather upsetting feelings.

While I was gone and he was alone, his mind went to the dark places. Where thoughts of his mortality and just how much his health problems suck live.

After I returned home Saturday night, Mark said some things to me. He said that while he's happy for me to get the opportunity to do a little traveling, he is also jealous because he doesn't think he'll ever get to. He went on to say: "Nothing is going to get any better for me. It's only going to get worse."

I thought about that for a moment. While I did insist that he doesn't know if/when he might be able to take a trip, I couldn't argue with the rest. There is no cure for Diabetes, the only way to get off dialysis is to receive a kidney transplant and because he had another heart attack, that prospect is looking even more unlikely than it already had been.

That harsh reality had me sitting on the floor, bawling my eyes out. It breaks my heart into a thousand tiny pieces.

Especially because just as I have been feeling so much better about myself and my life, am working on being Brave and doing things I wouldn't ordinarily do, my soul mate is feeling the opposite.

Where can he find hope?

I have all kinds of answers to that question. I can extol his virtues and remind him of all the GOOD there is left in his life. I can remind him of how much the kids and I love him, that the fact he was able to build a family is in itself such a huge accomplishment and blessing. I can tell him how much other people love him and appreciate what he brings to their lives. I could simply tell him to knock off all the negativity, that it's not allowed....

But you can't make someone feel something they don't. Feelings are what they are. They're not rational and they don't always make sense.

Maybe Mark just needs to work through these "bumps". It's certainly understandable that he is struggling. He has been carrying these burdens for so long. So long. And they're heavy. How much can one person hold before they break? Honestly, he's still doing better than some might, even if a little more negativity is creeping in.

On the other hand, what if he doesn't work through them. What if I can't let go of the guilt that, even with my bad eyes, I am still more able to go off and have fun?

I have no control over so much of this. I think all I can do is continue to love Mark like I always have, and to try and lift the heaviness wherever I can. Maybe I can try to find peace somewhere in there. Hopefully he can too.


Linked with Pour Your Heart Out.

Year in Review: October, November, December

In the movie world, the fourth installment of a franchise might be thought of as a bit much.

But for the purposes of the 2013 Review Extravaganza, it can only be seen as being thorough!

This week's year-in-review post encompasses the most recent three months. One would hope one can remember these easily. Let's see....

October

Oh this was a big bloggy month because I decided to change the name of my online home from just JENNIFER to Dancing in the Rain! I also launched The View From Here series (which, incidentally, I am looking for contributors for, so please click that there link and let me know you wanna)! I love this series so much, and I hope you guys are enjoying it too.

Besides that, I admitted that therapy has been such an amazing thing for me, I claimed to be fierce, asked told everyone to stop being judgy, listed 10 reason I liked being a soccer mom and shared how we helped prepare our kids for medical emergencies.

November

I wanted people to stop being judgy in October, and said we shouldn't be assholes in November. Someone who isn't an asshole is my daughter's role model.

I shared a list of comfy things and why I'm not into holiday gift guides. Then, with help from a reliable source, I put together a post chock full of health care reform info.

Also, my husband had another minor heart attack (yes, really) and I contributed a guest post about the mysteries of blogging to Yeah Write.

December

On the 2nd I shared a fun little exchange between me and my husband, then got super serious about a tough question our daughter asked.

I wrote about good blogger etiquette and blasted my daughter's middle school for being apathetic.

Finally, I shared the adorable keepsakes both of my children gave me in kindergarten and sent you all Merry Christmas wishes!

(Less blogging in December happens. What'r'ya gonna do?)

Joining in on the Review Extravaganza has been so fun!

The first three weeks are here, here and here.

Goals and Hopes for 2014

Well, "hope" was my word for 2013, and I think it was appropriate. I definitely felt it, and tried to live it. I sometimes have private goals for myself. I tend to keep them private because I used to be chicken when it comes to accountability. But I don't feel that way anymore, so here goes:

• I'm pretty sure my word for 2014 will be Brave.
• I want to find the key to unlock my daughter's potential in school.
• To keep up, and step up, the healthier choices I've been making for my body.
• Celebrate my 40th birthday with pride.
• Continue seeking opportunities to spread my wings as a blogger.
• Use up my scrapbooking supplies and fill the pages I have left to fill with the photos I have printed that have been sitting in a box for several years now.
• Finish knitting the pillow cover I started 2 years ago.
• Figure out how to take down all the blinds and wash them in the bathtub.
• Do more gardening.
• Volunteer at the food bank.
• Spend another year with my husband.

What about you? Have you started thinking about the upcoming year?

Can I Let My Guard Down?

It has been since March of 2012 that my husband has had a major medical crisis. He's had just a couple of one-night hospital stays for minor issues.

It has taken me 18 months to be able to even start entertaining these thoughts.

I have a slightly superstitious side. A small part of me that thinks maybe one can jinx themselves or something. You know, those moments when you say, "Oops, spoke too soon."

So I haven't wanted to give voice to it.

Can I stop thinking Mark is going to die soon?

The roller coaster ride that is loving someone with chronic health problems makes your head spin. Mine was given a whirl when Mark's heart stopped after bypass surgery. Then it was like a never ending merry-go-ride when he had the arrhythmia, didn't seem like he was going to get better but then did.

I guess I don't think about what, up until that point, was the worst night of my life much anymore. The anniversary of Mark's double bypass came and went the other day but I didn't notice. Three years since the first time I thought I might lose my husband.

I guess that's what happens when something even bigger and scarier, something you had no idea would or could come, rears its ugly head.

In comparison with the aftermath of bypass, Mark's arrhythmia was indeed a bigger, meaner beast. The experience of his heart stopping, being shocked back, several days if sedation with a breathing tube and pneumonia were very traumatic for us both, in different ways.

When Mark came home from that hospital stay, I was prepared for the idea that he would be permanently much weaker. I didn't think he'd work again and wasn't sure if he'd even drive. I still think his personal determination made those things happen. Mark never thought he couldn't, so he did.

Each of these crises have left his legs weaker for some reason that I don't understand. He now always uses a cane to help him walk, gets tired from walking easily and often chooses to use those shopping cart scooters in stores.

His blood sugars still fight with the insulin his pump delivers and he just finished a nearly year-long battle with a few foot sores. He's still on dialysis.

All these things remain, but for crying out loud, MARK IS OK. He might even be better than OK. Now that the foot sores are healed, he is trying to use scooter carts less and has even begun doing some exercises each day.

And then there's the maybe could happen possibility of a kidney transplant.

A glimmer of HOPE.

I don't even know what to do with it. I mean, can anyone out there understand even a little bit how bewildering dealing with all this push, pull, up, down and sideways shit is?

OK so, your husband had bypass and that lasts a long time so he should be pretty good for awhile. Oh wait! Sorry, forgot to warn you about the possibility of developing Ventricular Tachycardia and that it might kill him. Oh shoot, it IS killing him. Better prepare yourself. But wait, he got better! Now let's see if he can have a new kidney!

Head. Spinning.

So I ask, when you've understandably built up a wall to hide from the scariest thing imaginable behind, and then it doesn't happen, is it safe to let your guard down and start peeking out?

That's probably a rhetorical question.

:It's World Gratitude Day!

You can see from the topics I blog about most, that GRATITUDE is one of the biggest.

So how could I possibly let World Gratitude Day go by without a post?

Well, I couldn't!

To me, having a grateful heart, or an "attitude of gratitude", is essential. Because if you can find reasons to be grateful, even in the midst of struggle, your burdens will feel lighter. You will gain perspective. Will be more positive and, I think, happier.

There was an email that used to go around (before Facebook) that went something like:

I wish I didn't have to clean the dirty dishes. But I'm grateful I have dishes, and the food to cook that dirties them. I wish I didn't have to do the laundry. But I'm grateful my family and I have clothes to wear....

You get the idea.

Ten Things I Am Currently Thankful For

1. Quiet time - either in the morning when the kids go to school or when I'm alone out on my walks (except for the music in my ears). Either way, it's time to think. I can concentrate. Right now, I am trying to write this post with The Muppet Show in the background. Loudly. Really, Miss Piggy....

2. My friends - really good friendships take time and effort, but it's worth it.

3. Less clutsiness - For awhile there I was hurting myself every time I turned around. I could try to blame my bad eyes, but the truth is, I've had bad eyes for 20 years now and I'm not always as clutsy as I was being. I nearly killed myself running into, and falling over, the open dishwasher door. I STILL have a bruise and welt on my right shin.

4. Doctor Who - which has been keeping me amused and entertained this summer while all my other shows have been on hiatus.

5. Mark's foot - I am thankful that the sores my husband has been trying to get healed on his left foot are now, in fact, healed after about 11 months of weekly podiatry appointments.

6. My parents - my mom for the way she is TRYING to take care of my Grama, even though it's not going the way she hoped it would. She loves her mom and she's trying and I appreciate that. My dad for the way he deftly changed the subject and made AJ stop thinking about scary zombies when we mistakenly thought we could watch World War Z as a family. Oops. (We did not watch the whole thing.)

7. Sleeping bags - I have a 7 1/2 year old little man who is still having a hard time sleeping in his own bed all night. But he is too big to crawl into our bed now. A friend of mine told me about what her parents did for her. They laid a sleeping bag on the floor next to their bed for her. I did this for AJ and he's doing better. Sometimes he comes in, lies down on the bag and then decides he'd rather go back to his bed.

8. My therapist - I feel I got so lucky finding him, that he's so close to my house. The man is like "Ninja Therapist" the way he subtly, simply just says something that triggers a light bulb moment for me. I've been seeing him for less than a year, but he was already helped me so much. So much.

9. The new Gmail setup - the way they have separated my emails into separate tabs is genius. Of course at first I was all WTF did you do Google? Just like how everyone freaks out whenever Facebook makes changes. But now that I get it, I like it!

10. My husband - The one thing I am always most grateful for is that stupid man I married. And right now, because his health is stable, he is doing some exercising (crazy!) and we are trying to see if he might still be able to receive a kidney transplant. I did not expect any of this just a short time ago. There is always hope.

Of course also my children and my home and so many other things.....but this was a list of 10, so you know.

When I told Mark about World Gratitude Day he asked, "Why isn't it just Thanksgiving?"

Oh dear, "Because America isn't the ENTIRE WORLD."

At the End of the Day

Just last week I confided to a couple of my friends that regardless of how much I generally wear my heart on my sleeve, I still think there are a few things I can't, or shouldn't, say.

Also, I do get very tired of harping on the stuff I deal with. It is what it is.

Of course, though, a big reason I blog is to air it all out, to share my life perspective. For the benefit of GETTING IT OUT,  and if, perchance, someone in a similar situation came here and felt like somebody understands....

Life is a mixed bag. A big, jumbled, tissues, chewed bubblegum, hair clips, chap stick and change in the bottom MESS of a bag.

There are things that you make happen, whether intentionally or not, and things that happen TO you.

For example, wanting to have a child. I wanted that and made it happen. On the other hand, my eye problems happened to me. That was not something I wanted.

I'm not sure how to categorize my husband's health problems.

I met him as a visually impaired Diabetic. I married him as a sighted kidney-pancreas transplant recipient. Now, and for the last almost 12 years, Mark is a Diabetic on dialysis with multiple heart conditions.

Mark and I made the transplant happen. But the rest of it? Happened to him/us. No one wanted any of it. No one wants any of it.

They say it's not what you're given but how you handle it that matters. I tend to agree. More on that later.

Because sometimes I get disheartened, even angry, about what we've been given.

Did I ask for a sick husband because I married him knowing the possibilities?

I don't think so. Even when two people getting married are both perfectly healthy and they say the vows "in sickness and in health", they don't really think about the possibility of sickness. And perfectly healthy people can develop health problems down the road.

When you get married and say those vows, though, you sign up for it all. In our case, "it all" is a lot. Not as much as some, but more than most.

I didn't want to be worried all the time. I didn't want ever to be faced with the idea of being a young(ish) widow. I didn't want to deal with nasty low blood sugars that take everything out of both of us. I didn't want to feel like hospitals are my second home. Regardless of how informed I may or may not have been on my wedding day, I didn't bargain for the disease(s) to lead to a loss of intimacy with the love of my life. I didn't want every cough, sneeze, ache and pain my husband has to make me think about worst case scenarios. Every. Single. Time. I didn't want PTSD because my husband has had to be shocked back to life on more than one occasion.

To know the itemized cost of resuscitation. How much a life is worth. Around $346.

I never wanted to feel helpless sitting at home because I cannot simply jump in the car and get to wherever Mark or one one of my kids is at a moment's notice. I never wanted to feel like this life, these limitations, are holding me back, that there are things I simply cannot do. That because of all this crap, I have so many worries, and I hesitate. I question. I fear. I am damaged.

And yet. And yet I am happy.

To know true and abiding love. To be a mom. To have sweet and generous family, and caring friends. My little house and big, fat cat. That I'm not totally blind, and that, despite everything he's been through, Mark is a fighter.

How we handle the things we've been given? I can now hold my head up and own that we do it with courage and grace. Because having to wage war on the crap life throws at you gives you the perspective to truly appreciate the good. To focus on it. To nurture it and help it grow BIGGER than the bad.

This is what we try to do every day. Sometimes we're not successful. But mostly we are.

So yeah -- and I'm saying all of this as much for myself as for anyone else -- we have to deal with some tough stuff. Sometimes it really sucks. There are things missing; things we want but can't have. I will never sugar coat it.

But we have the most important things that at the end of the day are all anybody really wants. And we CHOOSE to let those things fill us up.

Stay This Way

My husband has been basically OK for over a year now and a thought occurred to me the other day.

If things could stay the way they are right now indefinitely, I could totally live with that.

Sure, he's diabetic and on dialysis. He has an implantable defibrillator and needs to use a cane to steady himself as he walks due to nerve damage in his feet.

But he's alive, able to continue working some and present as a father. This is more than I expected after his hospital stay a year and a half ago.

Then, I thought he could very well be on borrowed time. We were talking about making goodbye videos for the kids and even choosing songs that would adequately express things he's felt in his life that we could play at his service.

Slowly, very slowly, as time has passed and Mark has been holding his own, we have let go of those fears, for the most part, and just continued living. Living in the moments, with no expectations, with immense gratitude.

__________

Last week I published a post about my new friends, Steve and Tiffanie, who are were about to undergo a living donor kidney transplant. Unfortunately the infection that got in the way left a couple of wounds in Steve's belly that need to heal before they can go forward. Surgery has been put out for up to a month now. This is very disappointing. Necessary, but frustrating.

When I was writing about Steve and Tiffanie, I had no idea the curve ball that was about to be thrown in our direction when we visited with a kidney transplant doctor at the University of Washington just a day later.

Mark received a dual kidney and pancreas transplant back in 1996. We met in '94, so I was there for all of that. Two years later we got married, and two years after that we had our first child.

When Cami was 18 months old, in late January 2002, Mark's transplanted organs failed. He had to go back on dialysis and insulin. He was re-listed for another transplant at UCSF because that's where we lived at the time (and where he received the first transplant). When we decided to move to Washington, UCSF sent his files to UW where they took over his case.

Shortly after our move we made our first visits to the UW transplant team. They gave us some bad news, however. They told us Mark had a very high antibody count to a majority of the population due to his first transplant, and this would make it very difficult to find him a good match.

Then the heart problems began. One cannot go through transplant surgery if their heart isn't strong enough. Mark would have an abnormal heart stress test and be deactivated from the transplant list. Then he'd have a stent placed and a normal stress test, and be reactivated. This happened a few times.

Mark had a heart attack and eventually double bypass, after which he was obviously deactivated from the transplant list again. Then the arrhythmia in March 2012. All of these heart problems happening over the course of TEN years, plus the uphill battle of those darn antibodies....and you can imagine how we felt about the prospect of a new transplant.

It was not on our radar.

It was so not on my radar that when UW called and asked Mark to come in for an appointment, I figured the most likely thing they'd say was that they didn't feel he was transplantable anymore and needed to go ahead and just remove him from the list.

But that's not what the doctor said in her cute Irish accent.

She asked us if we would be open to a kidney only. Her reasoning is that doing both a kidney and pancreas is so much more complicated and dangerous, especially considering Mark's heart problems. She said she needs to see a CT scan and a dopplar study of Mark's legs. She needs to check for decent blood flow in order to safely hook up a new kidney.

Pretty sure we looked like deer caught in headlights.

You're telling us there's still a possibility Mark could have a kidney transplant and get off dialysis?

The doctor asked us how we felt about that. Mark said he would still prefer to receive a pancreas too, but he wouldn't turn down a kidney only. She turned to me. I said I feel like a new kidney would be a big improvement and something is better than nothing.

But wait. Really?? Could this really happen?

We have to have those tests done, but apparently yes, it is still within the realm of possibility.

I'm trying not to get ahead of myself until we know for sure if we can go ahead. Like, does this doctor know enough about Mark to be saying these things? What if she's completely wrong?

But if there was ever a time to be hopeful, I think it's now.

When someone else is going through something you've gone through

Your ability to feel real empathy is triggered.

I'm experiencing this right now as one of my best friend's brother-&-sister-in-law prepare for a living donor organ transplant. My friend's husband's brother will receive a kidney from his wife.

The circumstances are very similar. Steve is an insulin dependent diabetic who has many of the same complications Mark does. Retinopathy and kidney disease are just two. Steve and his wife Tiffanie are also young like us (ish).

I've not personally given my husband an organ (would that I could!), but Mark and I have been through the transplant process (cadaver donated). The myriad appointments and tests, waiting on pins and needles for the go ahead, preparing for surgery, waiting through the procedure itself, learning the hospital like the back of your hand, getting to know your new best friends called nurses, watching lab results like a hawk, getting used to the effects of immunosuppressants, cheering for urine, doing laps with an IV pole around the transplant floor. The fear and worry. The giddy excitement and pure joy upon hearing the transplant was a success.

When Steve and Tiffanie came down (they live in Alaska) for a consultation with the transplant team back in April, I got to sit down and talk with Tiffanie. I felt an immediate connection through shared experiences with our husbands. And our feelings about those experiences. There was so much head nodding. I knew we had to be connected so I friended her on Facebook right away, and subsequently asked my friend about how Steve and Tiffanie were doing every chance I got.

Now that they're here preparing for the actual transplant I find myself feeling nearly as anxious, ansty, nervous and concerned as I would be if it were Mark. They've hit a road block with an infection that must be treated before the transplant can be done, and surgery has been postponed for two weeks.

Of course they are keeping their chins up and staying positive, but I know the frustration that is also there. When things like this happen it becomes so hard to see the light at the end of the tunnel.

One might wonder if I'm jealous at all. I am not. I am rooting for them with everything I've got. I am so excited that they are able to do this, and that Steve will be healthier. It's not as if Mark hasn't had this same opportunity before. The fact that his transplanted organs (kidney and pancreas) stopped working after only six years is no one's fault.

I could never begrudge anyone who is able to receive an organ transplant that enormous gift and blessing. I want it so badly for anyone who needs it, and I feel very frustrated, no angry, when someone loses their life because they didn't get one. Like our friend Cindy who recently passed away waiting for a liver.

I can empathize with Tiffanie's thoughts, feelings, motives and fears where the health of her husband is concerned. Beyond that, however, I am in awe of her sacrifice of one of her own kidneys in order to improve Steve's quality of life. She is a strong and determined woman and I admire her.

I find myself getting emotional about it, actually. I started this post hoping I could explain why, but I keep finding myself stunted in finding the words. Suffice it to say, I -- Mark and I -- GET IT. All of it. On so many levels.

I cannot emphasize enough how important it is for each and every individual without some sort of pre-existing condition to be a registered organ donor! Not only that, but to keep an open heart and be willing to donate a loved one's tissue and organs if ever presented with that choice.

Filled With Gratitude

If I could only move through ignore get over let go of set aside the anxiety and worry I feel thinking, "when will the other shoe drop?", I could maybe actually just be HAPPY that things are OK right now.

I am happy.

I am so very grateful that my husband is still with us.

After all that he's been through, I look at him lately and am filled with gratitude and happiness.

He is AMAZING.

Not in the off-handed way people use the word "amazing".

More like this, quite literally:

There are so many instances when he could have died. Times before I even knew him, let alone since. He has been fighting to live for SO LONG. And so far, it's working.

Diabetes has not been kind to Mark. It seems that no matter how hard he tries he is plagued by one complication after another. This isn't likely to change. He will probably never get another transplant and the disease will continue to take its toll.

Now, though? Right now? He's doing fairly well. He is constantly struggling with his blood sugars, made more difficult by insulin antibodies and electrolyte fluctuations due to being on dialysis....

But he is holding his own. He is happy and living his life as fully as possible. Still working, taking care of everyday things, cooking, being a dad, husband, son, friend, handyman...MARK.

I am so grateful!

I'm just so happy he is HERE.

It is a gift. An AMAZING gift.

I will never, ever take it for granted.

Connecting with Pour Your Heart Out, The Happiness Project and iPPP.

Perceived Expectations

There is a big issue stuck in my head.

It is the perceived expectations of me as pertains to how I handle my husband's health problems.

How I carry myself through being the wife of a chronically ill man.

That I must always be strong. I cannot crack under the pressure. That I must just slap a smile on my face, stay positive and upbeat all the time. And that I will be judged if I don't.

But no one, not one single person, has ever said to me, "Jennifer, if you ever lose your shit, I won't respect you anymore."

On the contrary, all I've ever been told are things like "I admire you", "I don't know how you do it", "you're so strong" and even "you're amazing".

Further, I am told that I am allowed to feel whatever I feel, that I'm allowed to cry and scream if I need to. My friends tell me to "let your freak flag fly!"

Yet I remain reserved. I worry that if I do any of that, it will scare the hell out of everyone. I feel this responsibility to hold it together, for the most part, for others, because I perceive that they look to me for their own strength.

I am well aware that I am not the only person affected by Mark's health problems. It hurts his parents very much. It hurts my mother to see me dealing with such difficult things and it hurts my father because he and Mark have become real friends. Our friends are affected. Mark's co-workers worry about him. Mark is a very charismatic guy and he is well-liked by all. It hurts everyone that he and I have to go through so much.

And my kids! My son hates it when I cry; he gets very concerned. Whenever Camryn hears there might be something amiss with her dad, she frantically asks WHY? and "does he have to go to the hospital" and "will his heart stop again?"

Oh MY heart. I think for my babies, I do have to maintain my composure as best I can.

But for everyone else? I feel that I have to let go of this responsibility I feel for THEIR feelings.

How can I possibly have the energy to babysit other people's feelings? I don't have it.

I work every day at holding this family up, staying positive, finding joy, having fun. Appreciating what we have and relishing in it.

But I get weary. I get negative. And sometimes I need to cry.

That has to be OK. I need to feel like it's allowed.

Don't expect anything of me other than that I will always push on. If you see me down, know I will get back up. I'm stubborn like that.

And all I will expect hope of you is a hug. A smile. A prayer. A joke. A tissue. Leeway.


Linked with Pour Your Heart Out.