Wednesday, June 28, 2017

Betty White, the Neverending Pre-Op, the Blackout, and the Lasagna.

Having a rare disease sucks. Having a rare disease that is terminal but so individual that nobody can tell you how long you have left is sort of a mixed bag. I mean, you won't outrun it. You've met the thing that is going to kill you, but you can't apply a statistic to yourself in any accurate way in terms of years, and that gives hope. But having a rare disease that requires some serious invasive testing like a right heart catheter is absolute balls. 

We had everything scheduled and planned. I had to go in for x-rays and blood work and talks with professionals. I was luckily cleared of doing the left side of my heart since everything we've done showed it to be in good shape, so it was just this: we'd go in and get the right side done in the morning. But it required most of my day in a lonely vanilla colored waiting room. Thank goodness I remembered to bring my new Betty White book from the library. 



I actually admire her more, if that were possible, after reading this. It's an account of the things that matter to her along with some personal experiences and some lessons on living a good life. I think people see some of her roles and this stereotype sticks in your head and this fleshes it out in ways only a book can. It was awesome and an easy, fun read. It made the endless waiting between checking off boxes of which medical professional you've seen so far less lonely (also, can hospitals get rid of that? It's like the world's most depressing scavenger hunt). 

I spent the rest of the evening on the verge of tears (invasive testing and surgeries are always scary for me) but taking the kids to the bookstore to play with my husband. I was fighting a respiratory virus and taking care of my toddler who was in the full swing of it and I just could not shake that terrible idea that this could be my last night at home with them. I kind of repeat that line from Doctor Who when I get into that mindset. 

Don't be lasagna. 

It's my mantra for not dying and also not being a serious mess about the whole thing. 




Needless to say, not a lot of sleep happened. A lot of tears and praying, but not sleep. 

And a call we got at 5:10 AM was from the medical staff to inform me that they would not be doing any surgery today.

The electricity was out. 

I'm still not sure how to feel. I'm so frustrated and disappointed because we were right at that point where I might be able to get REAL help and treatment. But, at the same time...

Maybe this was lucky. 

I put in for my records to be transferred to our center of excellence early and for them to do my right heart catheter. In my town, this rare monster called pulmonary hypertension is virtually unknown. And with the addition of my tachycardia, we're talking serious trouble. I'm realizing that all along my pretty wonderful team of MDs have been telling me that they can't handle this here. The catheter was the last step with them and then I was headed this direction anyway. So, I'm attempting to go to the specialist center for the entirety of my care. 

When you're talking about something that affects a very small percentage of the population and is always, in the end, a life-taker, I'm not sure I should have waited as long as I did or for all this to happen to take charge of my medical care. 

It's time I can't get back. 

We even recently discovered that my heart medication is completely counterindicated for person with PH, which makes a lot of sense now, but none of us including my medical team even noticed that before. 

So, here's hoping I find a place where rare is not unknown.

And I'm going to keep trying not to be lasagna. 






Friday, June 23, 2017

The Max and Ruby Birthday Party

My youngest has had two other book-themed birthdays. The first being Harry Potter. One of our physicians accidentally called her "the girl who lived" and it stuck to the point where I referred to her as that before she was born. 


Her second birthday came from her favorite show at the time called "Between the Lions". They don't show it regularly on PBS anymore, but it was about a family of lions who ran a library (it is amazing for pre-and early readers, so if you have one of those, dig up some episodes). We decorated a cardboard book prop with the show's theme and handed out little safari toys at a spray park and she was thrilled. 

This year is the year of small family birthdays, so that's what we did. But, as long as the kids let me, I always do a theme. This year for my youngest we had a Max and Ruby party since it is her favorite right now. Rosemary Wells helped my oldest with her "Yoko" books and my middle son loved reading about "Max". My toddler found some old episodes of the cartoon of "Max and Ruby" and that led to her love of the books. I kind of like it, too. There is something pastoral about the work of Wells. Something deeply peaceful and innocent which carries over into all of her books and it is amazing. 


If you are planning a celebration for a child who loves "Max and Ruby", then look at the author's website. It features an awesome amount of printables like bunny crowns, a pin-the-tail game, and even a banner. You can find all of that at http://www.rosemarywells.com/ under resources.




We made Max's worm cake with chocolate pudding icing and crushed chocolate icing cookies. 


I think she loved it. 



Small birthdays mean time for adventures like the water park. It definitely feels like you're fighting an uphill battle ditching some of the trappings of traditional big parties, but everyone had a wonderful time without the stress, hassle, and cash you have to worry about with big get-togethers. It made us really look forward to the day, which is how I think it should make people feel. 

Even with parties at home with the family, you can plan some fun themed games and with some footwork find exact decorations to your child's liking instead of the big box store stuff, and that's part of the fun, too. 

ESPECIALLY if it's book themed. 

I wonder if my last child will like Arthur enough for us to do this in the next few years...




Saturday, June 17, 2017

Best Fictional Dad Award in Horror.

One of the best characters I have seen in horror was via the comic collection by Scott Snyder called "Wytches". If you haven't read this yet and are a fan of scary things, you do yourself a disservice by not picking it up. 


Wytches aren't your played out Halloween spooks, either. They are almost like a natural disaster, part of the background in the creepiest way possible. Twisted-faced and bloodthirsty and unrecognizable, the monsters in this story are terrifying. And nearly unstoppable. 




The dad award goes to the character who tried, for the sake of his daughter, to fight them and the people he cared about who had aligned with them out of fear and convenience. Charlie can and will sacrifice everything for his little girl, even in the most unimaginable circumstances. 

But he's not some super hero or angel. He's portrayed as believably human and trying to be better. It's one of the best depictions of a dad and I promise it will haunt you longer than the rest of the story for that reason. 

I am always reminded that I am really lucky in who I love and who chose to love me back. My husband is a great husband, but beyond that, he is a wonderful dad. That strength he has is something our children lean on, and his heart is something we know we can always count on. That's immeasurably beautiful. It's the stuff legendary fictional dads are built on, and we have it in our real life. 



Whether this day is for celebrating the dad you were born with, the ones who came into your life by other means when you needed them, or the one who you share your children with- Happy Father's Day. 

My daughter's card for her dad. 



And, yes, Rick Grimes is on the Best Dad in Horror list. I went with a less familiar character, but he deserves honorable mention. 



Wednesday, June 14, 2017

Landmarks On The Journey

We made it through another school year, well the kids more than made it through. They bloomed. 



There is some controversy around charter schools, but the truth is, while not a magic fix-all to our state's education problems, they are a vital part of the solution. And for our family, they have been irreplaceable. 

I try not to brag or overshare their accomplishments because honestly none of that belongs to a parent-they earned it, not us. And awards are not milestones of being a student or a kid, it won't make them successful in having them or unsuccessful not to have to a single one. But, I'm sharing these because they are finding out who they are. 



My son can do math in his head that amazes, he is learning to believe in himself (he was passed over many times in public school as being nothing but quiet, which was terrible) and what he enjoys (construction, planning, daydreaming and math). My daughter has a college reading level and is finding her sense of humor and imagination a big part of her personality. It's the best part of growing up-finding those things you are both good at and love. And I am so proud of them for that and so thankful to have a local school which has allowed that to blossom. It is more work, however. And expensive with uniform pieces, but it is worth it. 

It does feel longer somehow now, the hours which school takes from them. It might be the curriculum is more rigorous, it might be that they are just growing up. But this summer so far all I have wanted to do is hang out with them. I don't miss them being gone so long and so often and I was heartbroken to find my inbox full of school uniform coupons and supply lists already. 

I'm going to try to enjoy them as much as possible. 

Especially because my heart catheter surgery is just around the corner.

They want now to do both my left and right side, but depending on how my next consultation goes, I'm leaning toward just the right. I don't think I can handle more than that mentally, though physically it may be okay. It's a diagnostic test, but an invasive one with real risks. It is, unfortunately, my ticket to the final pulmonary hypertension diagnosis and transfer to the center of excellence in my hometown. I keep telling myself this is my best chance at survival. 

My toddler browsing the heart operation booklet we were given. 

I have written down "10". Like it's magic. Because I hope it is. I need at least another ten years with my family. Ten years to enjoy and raise my children. 10. I need that 10 at least. And though this surgery is scary, I know this is part of the journey to getting my 10. 

In the meantime, I'm hoping my heart and lungs behave.
After seeing MD after MD, I'm both exhausted and starting to be eaten away at the talks of death and illness. I need a break and something else in my life to focus on. Summer makes me happy. It's lovely to have everyone home together and be able to go out and do things. I need more of that. I really do. 

Suffering a terminal illness comes with really bad days. Often they are triggered by feeling terrible, but sometimes it's that someone in your support group passed away, or a care provider hears your diagnosis and cries (thanks for caring, truly, but you breaking down isn't doing much for my morale), or you have to have talks with those you love about what happens when you die. And each time that happens it hurts so deeply you feel like you can't breathe anymore (or, maybe it's actually my lungs, who knows...). 

I'm not a positive-thinking believer (half of that new age stuff appears to be about fighting your emotions or being in denial), but I am trying to study stoicism, and that has helped. I think some ability to look at the bright side or at least focus on goals is still helpful, at least, for me, and in the near future I am going to attempt to make an affirmation board to help me stay grounded on those terrible days. 

My kids' chalk drawings would make pretty lovely affirmation pictures...