Thank you for visiting!

Thank you for visiting!

Thursday, April 16, 2015

The flower

We had a wonderful visit last month with our son, his wife, and our adorable little Cecelia! It was, as expected, very hard for Matt, but he did manage to join us for a couple of meals and spent a little bit of time getting to know Cece a bit.

Cece decided Grandpa Matt was pretty terrific and kept lifting her arms and asking him to hold her. He managed to pick her up a couple of times although he couldn't hold her for long. At one point, he was holding her in the kitchen and he had to put her down and lay down on the floor as the cataplexy took over. She looked at him on the floor and decided it would be more fun to play with Grandma for a while. ;o)

The time was tough for Matt, it took him a good week to recover and he missed an important work deadline. But he still declared it was well worth it to get to spend some time with family.

I was very excited to get a couple of pictures of him holding the baby -- I don't think he has held any of our grandkids in the last 7 years or so.

Here he is with our little love:


And her she is again, giving kisses to Brooklyn:


This ends my update to the last blog post I wrote here.

 Except for the story about the flower:

I know it is hard for people who don't live with this disease to understand the constant disruptive impact of narcolepsy with cataplexy. I share these stories to try to help you see how much Matt and others with this disorder have to fight to participate in things that the rest of us take for granted.

Yesterday Matt ran an errand in the afternoon after one of his naps. When he returned, he stumbled in the door, fighting off an attack of cataplexy. This was pretty unusual because his triggers are usually related to spending time with loved ones or experiencing strong emotions.

I asked him if he was okay, and he answered that he had to go lay down immediately. As he tried to make his way to the bed he explained:

the kids across the street had given him a flower.




That was all it took to cause him to go into complete paralysis for about half an hour.

Saturday, February 21, 2015

They're (almost) here!

We are expecting Joe, Denae and Cece to arrive tomorrow afternoon. I am so excited that they are going to stay with us for nearly a week!!

I do feel bad, however, that this is going to be very hard on Matt. The last time we had family stay here, Matt had such a tough time that he only managed to be present with us for part of one meal. The rest of the time he was either sleeping or cataplectic or trying to avoid falling asleep or having an attack of cataplexy.

Feelings of love, tenderness or happiness trigger Matt's worse attacks. The stronger or more frequent the emotion, the more debilitating the attacks are. Think of the feeling you have when you get to spend time with someone whom you love very much, who you have not seen for ages. That feeling (which I am anticipating having in spades tomorrow!) quite literally paralyzes Matt. He starts to feel weak and then he completely unable to move -- he can not move, speak, ore even open his eyes!

This visit is going to be very difficult for him. I am hopeful he will be able to spend a little time with Joe and Denae. And it would be so wonderful if he could enjoy time with adorable little Cecelia.

I can't wait to see her sweet face!


Monday, February 9, 2015

small challenges

Just a quick note today.

We are anticipating a visit with our son, his wife, and their adorable little one, Cecelia. I'm very excited that we will have them here for several days, and looking forward to it very much! I'm sure we will have fun times and great meals together (Joseph is a chef and his wife Denae is quite a good cook also!).

However, there is always some tension leading up to a visit from the kids and grandkids. I stress a bit because I know that having additional people he loves in the house is really hard for Matt. And having the little ones around tends to cause him to go into status cataplecticus -- really long attacks of cataplexy.

He will, due to these horrible health consequences spend almost all of the time that the kids are here hiding out in our bedroom. Working when he can, resting when he can't.

I hate that Matt can't relax and enjoy watching our adorable little Cece toddle around and chase the dog. I hate that he will probably not be able to share a meal with all of us while Joe and Denae are visiting. I hate that he will very likely miss getting to join us for a day trip.

I hate narcolepsy.

Wednesday, February 4, 2015

We're baaaaa-ack! Or something.

I have sorely neglected this blog. Not for days, weeks or months, but for the past several YEARS!

As these past few years have gone played out, Matt's symptoms have gotten worse. And worse. And worse. He's missed weddings, birthdays, and pretty much all of our family gatherings. He has to completely avoid interacting with our grandkids, spending any time he is in the same house with them off by himself in a quiet room, either working on his lap top or napping. Usually both.

Other than weddings, I believe the last family activity that he attended was my Dad's 85th birthday party. He spent the entire time in Dad's spare bedroom, holding court. I would check in with him periodically to see if he was awake and to ask if he was up to saying "hi" to a friend or family member who had shown an interest in trying to interact with him.

As for the weddings, he managed to make it into the room where the ceremony was happening fMor our son Joseph's wedding. But when my sister got married a few months later -- he spent the entire ceremony unable to move from the bed that he had collapsed on as soon as we arrived for the ceremony.

More later, if you are interested.

For now, I'll leave you with this: life has been pretty hard and I just wasn't up to admitting what was happening or sharing our struggle. I was hoping we would win, and I would have good news to share. But we aren't winning. And the struggle has nothing to do with relationships.

Monday, July 4, 2011

"I don't know why she hitted me"

For those of you who aren't narcoleptic, I have a question: do you ever have trouble sleeping? I do. Last night, as I listened to Matt snore away, I struggled to try to rid my brain of the words of young girl who was being examined because of large bruises covering her back. Throughout the exam she chattered away happily with the doctor and nurse, but all the while insisting she didn't know how she got the injuries.

Then, spontaneously, she looked up with a frown and stated simply "I don't know why she hitted me".

A little background: I participate on a board that reviews the cases of kids in foster care. Once a month I receive a stack of case histories to study prior to meeting with the other board members, parents, a representative of DHS, and lots of lawyers. It would not be hyperbole to say that many of these children's life stories are absolutely heartbreaking. I've been doing this on and off for about 6 years, but that fact never changes.

"I don't know why she hitted me": The statement of a little girl just trying to figure it out.

I don't know why her mom "hitted" her either. By all accounts, this mom loves her kids. She's been offered and has engaged in treatment (including anger management and parenting classes) but continues to remain totally invested in an abusive "disciplinary" style. We aren't talking gentle pats on the bottom here. There are allegations this mom had actually stomped on her daughter's back.

I imagine that this positively sickens you to think about. I know it does me.

Thank God I have never been so out of control that I harmed any of my children physically. Nor have I suffered such severe physical abuse. However, I can point to many times in my life when I have allowed myself to take a course of action that I knew was destructive to myself and/or to my children.

There were years when I absolutely could not be in the same room with their father without feeling so angry that I was constantly on the verge of losing control. And lose control I often did.

I knew without doubt that standing witness to me fighting with their dad was unhealthy and destructive for my kids, but I repeatedly gave in to the negative feelings and acted on them. Most of the time I honestly felt completely unable to stop this cycle. Heck, it remains a struggle for me sometimes even now, despite years of prayers and talk therapy.

Despite the fact that I love my kids more than life itself, I have repeatedly failed to act in their best interests.

No, I'm not suggesting that my actions (or inactions) were as blatantly destructive as those of the mother of this child. I am just "wondering aloud" at the overwhelming power my emotions had over my actions.

As humans, we like to think we are relatively "evolved". But those baser instincts, evidenced by the overriding of cognition by more primitive, "emotional" parts of our brains, suggest we still have a lot of work to do.

I know I do.

More later -- until then, stay safe. And if you have an opportunity to make a foster child's life even the teeniest bit better, please do so :o)

Sunday, March 6, 2011

Mean girls and dust bunnies

Hi all -- Trish here, checking in from that crazy place we call home.

It's been a weird couple of months here -- Matt's symptoms gaining in severity and me crumbling into a erratic mess of emotional dust bunnies. Work has been a bit stressful. And I realize I am NOT nearly as altruistic as I would like to think I am.

Turns out some people just s.u.c.k.

And others are just CRAZY.

Not you, gentle reader; of course not. But they are out there, and they are unavoidable.

You know what, though? All that pressure at work produced something really lovely here at home:
an opportunity for Matt to be my champion.

It's unsurprising, I suppose, that as the symptoms of Matt's narcolepsy have intensified, I have become increasingly responsible for, well, just about everything. Home, housework, family, pup...

... maintaining our relationship with each other. Monitoring and responding to changes in Matt's health, sleepiness, attitude, needs.

But I got slammed with 8 loooong weeks of incredible stress at work. The type of stress that sent my head right back to the that horrible place in California, and the panic-attack producing months of entering the building each day wondering "is this the day that I will be fired?".

Of course where the head goes, the heart often follows. And this time was no exception. That soft and vulnerable bit 'o me followed my smarts right into the dark pit.

And at the bottom of that pit, what did we find? Yep -- you got it: dust bunnies. Nothing left of Trish but about a thousand frazzled emotions scattering this way and that, elusive and completely uncontainable.

But then, my narcoleptic love braved that mess, stepped up to the challenge, and declared "it is NOT OK for people to treat my wife like that!"

And I remembered: I am loved. Matt loves me and he has my back. (grinning widely) And that is so more important, more central to what I want from life, than, well -- just about anything.

So I must send this shout out to the "mean girls" from work: thank you!

I am so very blessed to be loved by and in love with this man. Most of the time I am so focused on holding everything together, we both miss the opportunities that only occur after life seems to have fallen to dust.

And to each of you reading this: I wish you love.  Find it where you can -- but also let it find you!

Monday, January 24, 2011

Maybe not?

Hi all,

Been a bit crazy around here these last couple of months. I've been working a lot with HAS (http://www.hasolutions.org/) and started doing some consulting with OHAC (http://www.ohac.org/). Add the pup, the son who moved back in with us Dec. 1st, two out of town trips, and time spent on a couple of other volunteer commitments and the sum is a crazy (and very tired) Trish. Oh yes, the narcoleptic husband who SNORES very LOUDLY doesn't help ;o) 

A confession about that last bit: there have been many nights when, somewhere around 3 a.m., my pillow has started looking more like a great tool for smothering my Sweetie than for resting my head. No, I'm not going to act on that urge, but I sure do hope he gets his C-pap fixed soon. Or I find some suitably comfortable ear plugs.

I don't mean to complain, just wanted to explain why my posts have been so infrequent, especially of late.

So... in case you've forgotten, let's set the stage: last time we checked in, I shared my optimism about our successful handling our November trip to California. Matt actually managed to make it through the entire Thanksgiving dinner with kids, grands and dad. I thought that, just perhaps, we might finally be figuring out how to live, in public and with family, with this disease.

Wishful thinking, it turns out. The last month and a half have been pretty bad for Matt. I have worried quite a bit that he might need to tweak his meds again. It turns out that he has been worrying about something I hadn't even allowed myself to consider: perhaps he hasn't hit the bottom quite yet. He might actually still be getting worse.

Stay tuned; more later. And this isn't necessarily bad news: more data means more information, and more information brings us closer to more effective treatment. And maybe, eventually, if we are very fortunate: a cure.

But for now, rest assured in knowing that we are OK. We will continue to be OK, and we will continue to be together. This thing is not going to beat us.

Hmmm, I take it back. We are BETTER than OK!