No longer confined to the sidelines

I’ve been on Trikafta for just over two months now, and I feel like it’s been a bit of a disappointment when I’ve said that my day-to-day life hasn’t changed that much. This drug is supposed to be “life changing” after all.

Well, yesterday we went sledding and at one point, my nephew was waiting for me at the top of the hill so we could sled down together. So I ran up the hill to meet him.

Did you catch that? I ran up a hill!

If you know me, you know that I don’t like to climb hills, even when I’m “hiking.” And I don’t run. Ever. For any reason. It’s just too painful.

But yesterday, I ran up that dang hill more times than I can count. I didn’t collapse or nearly vomit from coughing, and my lungs didn’t hurt or feel like they were seizing up. I felt fine!

Although at one point, I did sit down at the top of the hill and cry because I was hit with a startling realization. I wasn’t watching from the sidelines as I so often do. I was able to run and play with my kid for the first time that I can remember. Do you know how crazy that is?!

Last night as I was putting Morgan to bed, I felt tears on her cheek as I kissed her goodnight.

“Oh, no, honey. Why are you crying?” I asked.

“Because you ran up a hill,” she sobbed. Then she assured me, “they’re happy tears.”

This. Is. Life. Changing.

Kissing cousins

Morgan and Logan
Have I ever mentioned how much Morgan loves her cousins? Sure, they get on each other’s nerves and sometimes we have to make them apologize for punching each other in the face or nearly biting a hole in Logan’s back (okay, maybe that one is specific to Morgan). But when it comes right down to it, these kids are best friends. I’m just so happy that Morgan will be able to have the kind of relationship with her cousins that I got to have with mine.
But we should probably put a stop to their open-mouthed kissing before too long.

A very special man

Have I ever told you that I have the best Grandpa in the whole world?

Growing up, Grandpa was my biggest fan. I remember planting a corn seed in my kindergarten class and giving the tiny sprout to my grandparents. My grandpa planted it in his backyard and was so proud of the little corn stalk it grew into. So very proud, in fact, that he had a little photo album that documented it’s growth.
Years later, we’d come across the pictures of that cornstalk and he’d say with a grin “Do you remember that? That was special.”

My cousin and I used to sneak into Grandma and Grandpa’s bedroom and dress up — Niki as Grandma, right down to a sock-stuffed bra and bright lipstick, and me as Grandpa with one of his hats on my head and pillows in my shirt to mimic that big, round tummy of his — and we’d put on silly skits or sing and dance for them. I don’t know how Grandpa really felt about it, but he always made us feel like he loved it, and he treated us like total STARS.

I think he must have attended every horse show I ever rode in. I was easily embarrassed back then, and I remember feeling my cheeks burn every time he’d shout “Jenny SUE!!!” from the stands at the top of his lungs. But he wasn’t trying to embarrass me, he just wanted me to know he was watching. He also used to set up barrels in his backyard so that my horse and I could practice running the pattern. He’d watch me ride around, waving to me and snapping pictures. I think he was the ONLY one who whole-heartedly believed in my (short-lived) dream to become a champion barrel racer. He promised that he’d shout my name from the stands at the National Finals Rodeo someday. Sorry we never made it there, Grandpa.

My grandpa was creative; he’d make all sorts of carnival games out of  wood and bean bags, or bowling games out of empty coffee creamer bottles. He collected things, sometimes really strange things; the walls of an entire room of their old house were covered in hats, and somewhere there is a jar with a bunch of our (his grand kids) teeth in it. He used to randomly tell me, “Come out to my shed, there’s something I want to show you.” Sometimes it was something interesting like incredibly old, tattered newspapers, other times he just needed someone to compliment him on how well he’d stacked the firewood.

Grandpa was stubborn. He was grumpy. He was bullheaded. He was proud. He would randomly break out in song, “Oh Lord, it’s hard to be humble when you’re perfect in every way. I can’t to wait to look in the mirror, cause I get better looking each day!” But everyone who really knew him, knows that it was all a facade. He had to be rough and tough on the outside to protect that delicate, sweet soul he had on the inside. Undeniably, Grandpa had an ENORMOUS heart and when he loved, he loved so fully. Take Kirby, for example: he was a cocker spaniel that my uncle brought home to my grandpa. Grandpa insisted that he wanted nothing to do with “that damn dog”. But in time, he decided he kinda liked Kirby and eventually the two became best friends. When they went out to dinner, Grandpa would stash some food away in a napkin and take it home to his buddy. Not only did Kirby get to sit on the front seat whenever he rode with Grandpa in the truck, he also got to come inside when Grandma wasn’t home. (Was that secret out of the bag, yet? Did I just nark on Grandpa?) When Kirby died, Grandpa was heartbroken. For weeks, the mere mention of Kirby’s name brought him to tears.

While he loved all his grand kids, he absolutely adored his granddaughters. He hugged us more often… had a little more patience with us… let us get away with a little more. We were his special girls. He used to ask if we wanted sips of his beer or coffee saying, “it’ll put hair on your chest” or occasionally “it’s what makes me so sexy”.
I don’t know if he ever understood that I didn’t really want hair on my chest.

A few years ago there was a church meeting that my grandma couldn’t go to (I think she was sick). When I walked in during the opening song and saw Grandpa sitting there alone, I quietly sat in the chair next to him, slid my arm around his and laid my head on his shoulder. Neither of us moved until the song ended. Since that day, there have been several times that Grandpa has told me how special that moment was to him.

My grandpa didn’t seem like an old man to me. Sure, he was hard of hearing and didn’t get around quite as well as he used to, but for an 80 year old man he was in awesome shape! Part of me thought he would be around forever. We all used to joke that he was just too stubborn to die.

Several weeks ago, my Grandpa started feeling ill. Last Tuesday he was diagnosed with cancer in his colon, liver and spine. Five days later he passed away peacefully, surrounded by loved ones.

It’s hard to explain the way I felt seeing the man I once thought was invincible laying in a hospital bed, weak, frail, and exhausted. It was such a comfort to know that although his body was languishing, his soul was still larger than life. He was Grandpa right up to the end — winking at the nurses, insisting he wasn’t staying in that bed… just as ornery as ever!

Because he was so heavily sedated (not because he was in pain, but because he kept trying to escape) the last time I was able to speak to him was the night before he passed. He wasn’t very coherent even then, but was experiencing occasional lucid moments in which he could respond by squeezing a hand or mumbling a few words. Before I went home for the night, I took his hand and leaned in close to him. I told him that I loved him and was really, really going to miss him. He opened his mouth as if he was trying to say something.

“I think he’s trying to say he loves you too,” my grandma said. But then, clear as day, my grandpa whispered to me, “You’re special“.

People have asked if I’m okay, if I’m really handling this alright. The truth is, yes, I’m okay. I’m sad and I’ve cried a LOT. I’m really going to miss my friend. I’m heartbroken that Morgan won’t have the chance to know her great-grandpa the way I did, or even remember him most likely. I’m concerned about my grandma and how she’s going to cope without her partner of 46 years. But mostly I’m just so damn grateful for the memories; grateful it was a peaceful passing and that he’s in a better place; grateful he’s been reunited with his loved ones on the other side.

Thanks for all the good times, Grandpa. Thank you for making me feel special, and thank you for being special. Thank you for always sneaking me cookies and sips of your Dr. Pepper. Thank you for telling me I’m beautiful. Thank you for loving my girls. Thank you for all the memories. I love you “with all my heart and half my gizzard”.

Like I said before you left, it’s not goodbye, it’s see you later. Since I know there are going to be a lot of people up there and I might have a hard time finding you, I’ll be listening for that familiar tune “Oh, Lord it’s hard to be humble“.

And I have a feeling I know just what you’ll say when you see me… “Jenny SUE!!!”

——-

For those of you who knew my Grandpa
and may be interested in reading his
obituary, you can do so here.

Days like today

I cherish days like today when I find myself surrounded by loved ones, good food and laughter.

Days when late birthday parties are thrown because a pesky hospitalization got in the way of a proper celebration for my little one.

When kids can walk around in nothing but a diaper all day long and nobody cares.
I love days like today when we eat too much, then sit around enjoying each other’s company and soaking up the sunshine.
When sweet moments are shared between mama and baby.
I adore days like today when I have absolutely nothing to do except relax.
When uncles and cousins help open birthday presents.
When chubby cheeks are plentiful and there is just so much love in the air, you can almost taste it.
Then, to top it all off, I get to go home and play peek-a-boo with my sweetheart.
Days like today are good for my soul.
Days like today are the exact reason I need to be home instead of cooped up in a hospital room hours away from here.
Days like today heal me.

A life of value

I’m currently re-reading a book by Jodi Picoult called ‘Handle With Care’. I think the book is intended to stir up emotions and pull at your heartstrings which, I assure you, it does successfully. (Which is, perhaps, why I’m reading it for the third time.) It is the story of a little girl born with osteogenesis imperfecta, also known as brittle bone disease. Her parents file a wrongful birth lawsuit, claiming that the defect should have been detected before birth and spared them the heartache and overwhelming expense of raising a child with such severe handicaps. A wrongful birth lawsuit implies that, if the parents had known during the pregnancy that their child would be born with significant impairments, they would have chosen to terminate the pregnancy.

There is the logical part of me that acknowledges the expense that comes with any handicap. Doctors, hospitals, prescriptions, medical equipment… the list goes on. These things are all very expensive, and not always covered by insurance. And, generally speaking, the more severe the handicap is, the more expensive it is. There are children born with severe impairments who will never be able to live on their own; who will be dependent on their parents as long as they are alive. What happens to those children when their parents die? Who will take care of them? How will they cover medical costs?

The logical part of me understands how a wrongful birth lawsuit could be viewed more as a medical malpractice suit (the doctors should have picked up on something), filed in order to get money for the child’s healthcare; to ensure they will have a means of being cared for even after their caretakers are gone. I understand how the suit could be filed for money, not out of greed or with the honest wish that the child was never born, but out of desperation. When other options have been exhausted, a lawsuit of this type can be a way to pay for medical costs. The logical part of me gets that.

But the emotional, more sensitive part of me hears the words “wrongful birth” and cringes. How could any birth, any life, be considered wrongful?

The book mentions how, over the years, wrongful birth lawsuits have been filed, and WON, by parents of children born with diseases like spina bifida, downsyndrome and even… cystic fibrosis. I looked it up, I did the research, and these cases do exist. I was dumbfounded. Even if these cases were filed by the parents for monetary reasons with only the best of intentions, in order for these cases to be won, SOMEONE- the judge, or perhaps the jury- had to believe that these children were better off having never been born. To me, it’s ridiculous to think that the life of someone with CF, my life, may be considered by some to be a life that’s not worth living; that it may be too limited or perhaps too expensive to be considered worthwhile.

So, I’ve been thinking over the past few days: what constitutes a life of value?

I can’t answer that question for everyone, but I’m fairly certain I’ve found an answer for myself. My life is definitely worth living. My life has been truly blessed. My life is full of love and laughter and beauty. I’ve been taught to love and trust and care. I’ve learned to have faith and believe in prayer. I’ve been hurt and I’ve cried. I’ve laughed and danced and played. I’ve fallen in love. I’ve created another life. I’ve lost people close to me. I’ve had schoolwork, jobs and friendships. I’ve felt the sand under my toes by the oceanside and heard the wind rustling through the aspens high in the mountains. I’ve roasted marshmallows over a campfire and fallen asleep under the stars. I’ve picked wild flowers and seen rainbows and smelled the rain. I’ve looked into the eyes of my baby girl and seen myself. I’ve loved and been loved by an incredible extended family. This life I live is so incredibly FULL. I honestly couldn’t ask for anything more.

I’m so thankful that my parents, even after having a child born with cystic fibrosis, knowing they both carried the gene and knowing the odds of having more children born with it, chose to continue having children. I’m so grateful they believed–and taught me–that limitations and trials don’t make a life insignificant. I’m also grateful to God for allowing me to experience all the things I’ve been able to, and for His constant blessings.

I suppose I have a hard time stomaching the idea that any birth could be a “wrongful birth”, because I cannot imagine my own life being any more fulfilling.