Thursday, December 18, 2014

Misbehaving Lungs and New Ideas

Two posts within a month?! Look at me go!

My lungs decided that since I told everyone in writing that they were behaving well, they were going to prove they still control things this week. Go figure. I'm currently nebbing some albuterol and hyper-sal while hoping to get some exercise in to get things moving this morning. My chest is super congested, and if I'm not better by tomorrow then I'm calling in some reinforcements (aka oral antibiotics). I don't want to leave it til the weekend where it's harder to get in touch with my care team.

On a happier and more exciting note, I have started working on my new book idea. Technically, that's nothing new for me as I tend to start a lot of books. I even get to the middle usually with my book ideas before they fizzle apart and get stored in a folder of "come back to in another 20 years or so" projects. This usually happens because I'm not sure where to go past the middle or the climax. I am terrible at wrapping the loose strings up together in a nice, neat package, and it results in many failed attempts. I still marvel at authors who appear to create endings so seamlessly. I'm not one and never will be, I'm afraid.

This time, however, I actually have the ending already figured out. I know every party of where this story will go, and while I will not hold my characters to following this preconceived timeline of events, I also will be able to guide them along to the finish line should I need to do so.  I'm pretty excited about that fact. I think this may end up being the first novel I actually finish, and it's in a different genre than I usually write as well which is also exciting. Stepping out of my comfort zone in two different ways will hopefully prove more successful than my previous efforts. I usually love to write fantasy and dystopian lit, but this time around I chose realistic fiction. It will still be a YA story, and to me that's important. I feel YA stories allow for more growth and emotion in the characters without it seeming like unusual behavior. Growth, change, and out-of-character behavior is exactly what happens during the teenage years, and it makes for great emotional writing.

With that, I'll sign off of here and keep working on my protagonist and detailing my outline a bit more.

Wishing you all a peaceful and blessed Christmas week!

Wednesday, December 10, 2014

Still Doing Well

I know I have been quite sporadic when it comes to blog posts, and it has been far too long since I have shared anything. To be honest, life has been quite crazy around here, and the time for me to blog is quite limited to even non-existent. I'm trying to make a commitment to myself to update once a month at least, even if it is very brief. I have received several e-mails in the past few months asking if I am okay because readers worry when a CFer goes dormant on a blog for awhile. I appreciate their kindness, and I don't want to worry anyone so I plan on holding myself to this goal as much as I can.

With that said, there isn't much going on CF wise for me which is a fantastic thing to be able to write. I pray it stays that way each and every day. I am now almost 19 months out from having my first child, and my lung function has remained stable around 83%. There are days when I am better at getting treatments in than others, but for the most part I am quite compliant. When I miss a treatment, I work hard on adding one the next day or even in the middle of the night. Some days are easier than others to achieve this, but 100% compliance is a goal I consistently strive to achieve. I attribute my good health to my consistency, my great CF team, luck, good hand washing, and having a very active 1 1/2 year old.

Yes, the light of my life keeps me on my toes day in and day out. She is loud, opinionated, stubborn, generous, loving, kind, and incredible. She has the best personality, and while the traits above can be quite challenging, I also love seeing her testing boundaries and pushing limits. She is becoming her own person, and it's the greatest joy in the world to watch. We are still struggling with a dairy allergy, but we hope she will outgrow it as time goes on. She is a tiny peanut and most people can hardly believe she is even one because of her size. She's our little love, and that is just fine with me! Sydney's favorite activities right now are reading and doing puzzles. We spend hours each day working on different puzzles and reading dozens of books, and I can't tell you how much it warms my heart to see her love both. We try to limit TV time to just when I am doing my treatments, and we are pretty particular about what she watches. Right now the only actual show we allow is Daniel Tiger. I love that it teaches morals and skills on managing emotions. Hopefully as she grows we will continue to limit TV time as we are now.

18 month photos and Christmas photos as well.


Turning the corner to a harder topic, I wanted to update those of you who have been following my sister's journey with Stage IV colon cancer as well. In the last month, she has started with hospice care. She is at home, and we continue to enjoy many days with her as we make new memories and relive older ones together. She ran out of treatment options as each chemo quit working, and her liver was too damaged to pursue clinical trials. It was and still is a hard mountain to climb as we wrap our minds around the future, but we spend time each day feeling grateful for the time we are given and the moments we can share. Thankfully, hospice has made her quite comfortable which gives her more time to spend with family and dear friends.

Surprisingly, this pretty much sums up everything that has happened between April and now. We have been going through the days and enjoying family and friends as much as possible. As much as I love blogging and writing, I love spending each second I can with loved ones and my sweet little girl even more. It may mean less updates and less time to hone my writing skills, but I know that all too soon I won't have the time to spend with my sister, and my daughter will end up in school (much too soon for my liking) so I cherish each moment I have now. I will try my best to keep you all updated more frequently, and thank you again for those who have reached out to me to make sure all is well. It amazes me how kind and wonderful my readers are, and I am sincerely grateful.

I hope everyone has a wonderful Christmas and very happy New Year if I don't manage to update before then! 

Thursday, April 24, 2014

I'm still here!

Hi all,
Sorry for the massive gap between my posts! I have been relishing in mommyhood, and I have neglected my blog! Although my last post was in December, there really hasn't been much going on aside from staying inside due to the frigid/snowy winter and enduring a few bouts of illness.

Sydney is just over 11 months now, and she somehow keeps getting cuter and cuter each morning when I go to pick her up out of her crib! She says a few words (mama, dada, baba, lala, and good), crawls around the house like crazy and loves to laugh or make other people laugh.  Two months ago, she was fitted for a DOC band to correct her plagiocephaly (flattening of one side of the head) due to the torticollis she developed in utero. She wears it 23 hours a day, and she does great with it. She had facial and ear asymmetry so it was important that we pursued the band, and we are already seeing improvement! She also is still in physical therapy every week, but her range of motion has improved significantly!

Here she is in her little doc band!
As for my CF, things have been going pretty well. I have sadly missed a handful of treatments over the past 11 months, but I'm committed to regaining my 100% compliance streak. I am currently on Cipro to fight off a cold (which of course has traveled to my chest) I picked up from my daughter, and I'm hoping it kicks in soon because I'm tired of feeling miserable! On a positive note, my diabetes is in wonderful control! My A1c at last week's appointment was 5.7!! I'm pretty proud of that number!

As I start to have a much more rigid routine with Sydney, I am really hoping to get back into reading/commenting on other blogs. I have missed catching up with my CF friends, and I can't wait to find out what has been going on in their lives! This winter/spring has seemed incredibly difficult on our community, and I hope all of my cysters and fibros are doing well.

With that, I will end this post and go read some updates from friends! :)

Thursday, December 12, 2013

A Letter to My (Almost) 7-Month-Old Daughter

My dearest Sydney,

It's been awhile, and I've missed a few months of letters to you, but today you are napping peacefully in your car seat after dropping Daddy off at work which means today I have time to write.

I'm not sure how time has flown by this quickly, and this is the first year in my life where it's two weeks before Christmas, and I don't feel like it should even be December yet. Life has been moving at a quick pace for awhile now, but since you were born time began flying at an exponentially fast speed.

Because of this, I find myself sneaking in extra cuddles and kisses, forgoing my dirty dishes and laundry, and just staring at you while you sleep. And you know what, that's okay. It's okay because you won't be little forever, and you have already changed so much since birth. If I had spent those precious  moments cleaning then I wouldn't have quite as many memories and photos. Children have a way of drastically changing one's priorities. That's a good thing.

In fact, I've been putting off my chores to cherish memories a bit more than normal in the last few weeks because you have begun to start wanting more and more independent time. You want to be on the floor, in your jumper, or sitting beside me on the couch rather than be cuddled in my arms. You still enjoy house tours and us carrying you, but you'd much prefer chewing on Sophie while lying on your stomach and staring at the Christmas tree.

My independent girl.

Your desire to do things on your own already blows me away. Feeding times are now you holding the bottle with your feet or hands (you still can't tip it up enough at the beginning which means we hold it for you, but it must be held discreetly or you will get upset that we are helping you) while you lie on the floor (because mom's arms just aren't a cool place to be anymore), and play time means less interaction with me and more interaction with your blocks, rings, and balls.

So when the time comes throughout the day when you start getting fussy, rubbing your eyes, and pulling on your ears, I run to you and swoop you into my arms eager to cuddle you close to my heart. I snuggle you into me, give you a pacifier, and watch as you stroke my shirt and drift into sleep. And I breathe. I breathe in your scent, and I feel my chest move slowly up and down as the comfort of having you near me overwhelms me.

Watching you transform from that cuddly newborn to an increasingly mobile and self-soothing infant is beautiful and hard all at the same time. I wish these snuggly days would last longer, but I so thoroughly enjoy watching you learn and grow. I have a sneaking suspicion that this feeling will forever stay as I continue to watch you change and develop into a beautiful young woman. So I live in the moment, and I enjoy those close times together as thoroughly as I can. I know they are fleeting so I grasp each one I can get. I believe you will be one of those little girls who must do it all on her own and simply doesn't have the time to cuddle with Mommy or Daddy too often.

But for today you are (almost) 7 months old. And at 7 months, I still get to cuddle and hold you throughout the day. I still feed you (sort of) bottles, and I still help you with sippy cups, grabbing toys, and eating food. So what are you doing at 7 months?

Well, we've covered that you like to feed yourself, but you are also sitting with complete control on your own. You catch yourself if you tip to the side or backward (most of the time), and you rarely cry if you fall over. As of last night, you pushed up on your hands and knees and began rocking in order to get to the wrapping paper rolls Mommy had left out on the ground. You succeeded in moving three feet to get them, and you threw a tantrum when I took you away. You are starting to really babble, and your favorite thing to say is "inga" over and over again. You will say "da da" occasionally when we ask you to, and sometimes we SWEAR it sounds like you say "I love you." You are currently sleeping in Mommy and Daddy's room more often than your own because of the pesky eczema which keeps you up and scratching throughout the night. Your favorite toys are Sophie the Giraffe, your links, and books. Oh do you love books. And your favorite food is carrots. At your 6 month appointment (about a week ago), you measured 26 1/2 inches and 14 pounds 4 ounces. You are growing like a weed, and we couldn't be happier.

I can hardly believe the changes you have made just in the last month, and I am so looking forward to the changes the New Year will bring. I'm imagining you will be almost crawling by Christmas, and that means I will probably lose even more cuddle time. That's okay though because you are doing just what you're supposed to do. I just hope you know that Mommy is always going to be here for those snuggles. Even when you're a grown adult.




I love you so much, baby girl!

Wednesday, October 9, 2013

Those Peaceful Moments



Last night as I relaxed with my daughter on the couch, her chest rising and falling so peacefully from the sleep which finally found her, I felt that overwhelming sense that all would be okay. We haven’t had the easiest of weeks since we are battling teething, a growth spurt, and stranger anxiety all at once. We’ve had more fussy times than happy times, and if I go to put Sydney down or walk out of her line of sight, there is often a meltdown. But in that one instant, I hear her soft sigh of contentment and see a flicker of a smile cross her lips, and I know that it will all be fine and that tomorrow is a new day; my heart is filled with joy and serenity. 


Sunday, October 6, 2013

Days like these...

The house is a complete mess.
The dishes are stacked a mile high in the sink.
Halloween decorations are tucked in a bin still.
We ate Subway for dinner.
It's after midnight, and I'm just getting my second neb/vest in for the day.
My sugar has bottomed out three separate times today.
My cough feels gross, and I'm beyond exhausted.

It's days like these where I feel guilty that my daughter has a sick mom. A mom who has to conserve her spoons for the important things and has to worry about how much sleep she has gotten. A mom who has to sit attached to machines for an hour (or more) each day and who takes a ridiculous number of pills. A mom who struggles to walk up and down the stairs sometimes, and a mom who wakes her daughter up with coughing and hacking. 

Cystic Fibrosis slows me down in ways I hate to even admit. I have so many fun ideas, places to go, things to see, but they often get pushed aside because I need to do a treatment or take a nap. My daughter is 4 1/2 months old so for right now it's okay, but it's not going to be easy for her to understand when she's 4 or 5 years old. I just pray there's a cure around the corner. I really need this cure. I need to be here for my daughter as an active part of her life.

Vesting with my baby girl!
Please...please let there be a cure...