Wednesday, September 19, 2018

whoomp! there it is



i recently had a friend text me and say, i’ve noticed when your having a hard time you withdraw...said friend is  also a therapist and at times will analyze and call me out. but i don’t mind, she’s always right, and she always helps.
truth is i have been in a funk.
i have been in limbo with my own health and lungs status. two full weeks where i was possibly going to be admitted. back and forth (educated) decisions resulting in 'well let’s try this’, ‘it could be this’....all of which have been correct and i am seeing improvements. (yay.)
however, during that waiting period it is hard to be hopeful. actually, it's easy to be hopeful, but i hold back feeling that hope. because if i brace myself, the sting isn’t as bad when they say i "need to come in for a clean out.” so, i kept all my bags packed. i lived out of suitcases for two weeks in my own home. i didn’t want to unpack just to turn around and repack the next day.
the CF community has seen many difficulties recently. on being a key Cyster (@claire.wineland @clairesplacefoundation) of our community passing in an unexpected way. a woman of much influence and dedication to speaking openly and positively about our disease. she is a beautiful, strong light and it stung when her light left to shine somewhere else.
i watched as multiple friends were being admitted. it almost felt like there was a plague.
my psyche and mental health were struggling. anxiety, frustration and depression.
i simply am frustrated it’s not an equal ratio of my efforts and results. quite frankly it doesn’t even feel like a 10:1 ratio; efforts:results. this can be overwhelming. it can be tiring, in fact i am tired. everyday. all the time. i still take 2-3 hour naps daily. what used to be an indicator that i had an infection brewing, now seems to be part of a new normal. i only have about 5 hours of functioning before my body is like, “no. no more. i need to recharge if you want me to go on.” it’s like i live two ‘mini days’ in every 15 hours i am awake.
anyway, i kinda took an unintenional break from everything. commitments fell through. i haven’t written since july. i’ve been inconsistent in my social media presence, as well as updating you. you, who are so invested in mine and my families health. i appreciate you dearly, and i am sorry.
sometimes i am envious of my friends who have lung transplants. they have a new light to them. a look of relief. a release from the demands of frequent hours of daily lung treatments. i know lung transplantation by all means is not easy, and is not a cure. it’s basically trading one disease for another. learning to manage something new and something as grand as foreign organs in your body is no easy task. but sometimes i just want to breathe. i want to be able
to laugh without going into a coughing fit. i want to be able to rough house with my kid at any moment; instead of responding to his plea, “let mommy do a treatment first, then i can wrestle”. only to then be able to participate a few short minutes before being depleted.
guys this is open, this is raw, this isn’t my usual postings or my usual mental view. i have been in a funk. but this has been my truth. i am human. we are all human. i have bad days. we all have bad days.
but during my bad days, i have had many hours to reflect and my conclusions are often the same. gratitude. sure, i might not be seeing a 10:1 ratio of my efforts to improve my lung status, or even maintain where they’re at, but i AM alive. i AM breathing, even though i am also coughing. i AM watching my son grow up, even if the view is often while sitting next to my treatment machine. i AM making memories with my husband. i am here. and frankly what more could i want? nothing. my greatest blessing, my greatest gift, all of my gratitude lies in the fact that God does here my prayers...i am still here on this earth, still breathing, and that is a luxury.

Xx,
    M

Tuesday, July 17, 2018

RED...


**Warning: post discusses blood and main contain possible triggers for individuals.

"Red... the blood of angry men!"
"Red... I feel my soul on fire!"
                                                 - Les Mis

Red... the pigment of hemoptysis.
Red... the hue of blood.

I hate hemoptysis. It frickin' scares me. The feeling of the bubble(s) popping in your airways, feeling the blood building up, seeing it in your spit cup, trash, sink, tasting it in your mouth, I hate it.

Coughing up blood never gets easier. You don't "get used to it." Its terrifying when it seems to not be stopping. It's difficult to keep a clear head, to think properly. To accurately judge the scenario and make proper decisions on what action is needed. This takes practice. It takes strength. It takes concentration. Try to imagine yourself doing critical thinking if this was happening to you.

It's utter relief when it does ease up. Relief, knowing your not going to drown in your own blood. I've never needed a cauterization to stop a bleed -- thank the heavens. But I do have many friends that have needed multiple cauterizations. And I have friends that have moved to Heaven because, the pooling was faster than the help that could arrive.

I hate hemoptysis.
Red... the blood of angry lungs.

Xx, 
       M 

Photos of my family on better days.
Evening sailing on Lake Pleasant, Arizona.







Wednesday, July 11, 2018

LAKE PLEASANT




Our family loves water. Whether its a day on the lake out boating, visiting the Pacific Ocean, or a man made lake in the Arizona desert, thirty minutes north of our home. 
We love it. 
We are happiest here.


Ric and I fell in love around water. 
We got married next to water. 
We honeymooned in water (Oceanside, CA.)



Our sons middle name; translated in one of the two Japanese Kanji it represents, 
is Ocean.




Yesterdays lake day was just happiness. 
I truly mean that, despite what Hawke's face tells you in the photo -- he was simply grumpers we (read Mom) asked for a moment on land for a family photo. 
He is our fearless fish.
We are the happy Sherman's.

Xx, M

Saturday, July 7, 2018

HAWKE TURNS THREE

My sweet boy, Happy Third Birthday! 
You are the light of my life. 



I was talking with your Bama about making medical decisions and personal choices 
on what will increase somebodies "quality of life". Having a child, is one that could be argued in either direction. For your Mom, choosing to have a baby; choosing to have you, has absolutely been the best decision. The fulfillment you have brought into my life is more than I had expected. "My cup runneth over" is the perfect phrase to describe my heart with you apart of it. The happiness I experience with you is beyond measure, more days than not, my cheeks hurt from smiling so much. The only other experiences where I can say "my cheeks hurt from smiling" are on your Mom and Dad's Wedding day and our families Sealing Day. 

You are your Dada's best friend. You two are peas in a pod. I love observing both of you play for hours. Interacting, using your imaginations, going on adventures. You want to do everything your Dada does, and you WILL do it. You are his shadow and I couldn't have picked a more perfect Man for you to emulate. Continue to strive to be like your Dada and success will follow you.

---

Your third birthday theme was a "Rhino" (Dino) Party.
You think Rhino's are Dinosaurs - totally understandable.
And you're favorite Dinosaur is the Rhino (Triceratops & Rhinoceros).




We have amazing friends and family that helped to pull off this great Party.
I couldn't have done it myself. But we can't let this day pass without saying how grateful I/we am for where my health is where it is right now. That I did have the energy to pull this off.

Special thanks to Papyrus Prints for designing the invitation.

Special thanks to my friend; Liz Harvey, for brainstorming Rhino party ideas and making decorations with her talents and skillllzzz.
(Including the tree in this background)






Special thanks to @CurlyCoCreations on instagram, for designing the Dino Posters for your party.


                                 
I actually coordinated the color theme and entire party around these designs! Super sad when I had it printed  and there was no lime green paper available for the stegosaurus :/

Special thanks to Rocklynn and her art as a face painter. We were so lucky to have you!



Special thanks to @JoJosCreations, on Instagram for making your custom Birthday Cake and Rhino Cookies.






Special thanks to Dada for creating your Rhino Piñata all by himself. 
He amazes me every day.






Special thanks to Bama, Papa, Auntie Tole and Dada for helping make and finish up decorations the night before celebrating.


Special thanks to Lindsay Lindstrom (@the_lindstrom_life) for creating this BEAUTIFUL, AMAZING video for us to remember this special day forever.  I will forever remember your face as you walked into your party, in awe; turned and screamed,
 "My MOM!" while you ran my way.
You have a knack of making everyone you love feel special.



                                                                   We love you, Linds.



Special thanks to @LanellLeonePhotography for capturing this party through lenses and angles I'd never be able to snap.










ARE YOU KIDDING ME, DINOSAUR HAIR?!
 Give me aalllll those heart eyes.







Special thanks to our Tyrannosaurus Rex, who came as a last minute decision.
You were the absolute highlight of the party!






Hawke, your Birthday Party was spectacular - nothing short of who you are.
We love you like crazy!





Xx, Mom & Dad

------------------------------------------------



To everybody who helped, Thank You! I couldn't have done it without all of you.

We threw this whole party on a budget of $200. Would you like to learn how we did it? Leave some feedback and comment if you want a blogpost on: "How to plan a party on a student budget".


Here is a link to my personal Pinterest Account that has all of our ideas. Sadly, some we didn't get enough time to try. Man, we had a lot of fun! 

Here's a direct link to the board:
HAWKE'S DINO BIRTHDAY PINTEREST BOARD

SITE DESIGN BY RYLEE BLAKE DESIGNS