3 and a half

Dear Kay,

You are 3 1/2 today! It feels very strange saying that because after you accepted the fact that your birthday meant you were no longer two (which you resisted for a few weeks) you decided to skip year 3 and go right to 4. I assumed it was a phase, but here we are 5.5 months later I still have to tell people you are 4...in June...or else face the wrath of a child who has been called the "wrong" age. It feels like I am going back in time saying you are only 3 1/2.

Your age is not the only little fib you tell (and believe with your whole heart) these days, you also are convinced that you are fluent in French (on top of English and Spanish). Now, to be fair you know more French than I do, but counting to ten and saying a few catch phrases hardly counts as fluent. The other day I overheard you telling your 2.5 year old cousin (who has never said a word of French in his life), "J, I haven't heard you speak French in a while can you say, bon bon?"

Speaking of language, your understanding of Spanish had exploded these last 6 months. Unfortunately, I can't take any credit for this development. Your father speaks to you only in Spanish. Actually he does it so well that the other day when he slipped and said something to you in English you shouted, "But dad, you don't know English!" I guess you never noticed that your dad and I only speak English to one another.

My favorite part of the day is when you first wake up. You shout from your bed every morning between 7 and 7:30, "Is it morning?" When I shout that it is in fact morning, you crawl into our bed to snuggle before we start our day. You have always been a snuggler and that has not changed. You love showing affection and I call you my little romantic because you come up with the most sappy lines to show your affection and I love it!

Like all kids you age you have an active imagination and love to tell stories. You like to talk about when you were a grown up and I was little you took care of me. You also love to talk about made up memories from when you were a "tiny baby". The other day you told your Nana that you had a pet squirrel when you were younger and you went into great detail about this supposed pet from what it ate to where it slept. You also apparently had a run in with an alligator when you were a baby which doesn't say much for my parenting skills.

I am always saying every age is my favorite, but I absolutely love the relationship you and I have developed and continue to develop as you get older. You feel like my partner in crime and I feel thankful every single day that I was lucky enough to be your mom.

Love,
Mom

Leaving Your Child for a Hospital Stay

Ask a CF patient how CF effects their life you will quickly realize that CF effects every single aspect of their lives, including their family. In Kaylee's short life of 3 years I have been in the hospital 3 times. I know many CFers leave their children much more often or for longer periods of time, but I thought I would share my experience of being hospitalized with a small child at home.

My first hospital stay as a mother was when Kaylee was around 1 1/2. This was my longest stay (seven days) and was the most soul crushing experience I have had as a mother. My husband worked a lot when she was younger and I had never been away from her so I was worried how she would adjust to a whole new routine and one that did not include her mother.  I spent most of my stay worried about her, wondering how she was coping, and longing to be with her. She was too young to talk on the phone, visits were hard on her because hospitals are boring, and I had trouble feeling like I was connecting to her. The hardest aspect was that despite trying to simplify what was happening to explain it to her, it was beyond her scope of understanding. I remember thinking that a hospital stay could not get any worse than that particular stay and in most aspects I still agree with that thought.

This most recent hospital stay (8 days) was difficult on the whole family, of course. However, as Kaylee gets older and can understand and process better it is a little less traumatic for everyone involved. She is still too young to realize that most people do not have to go to the hospital and has no idea how serious Cystic Fibrosis is so those extra concerns and worry are both something I have to really tackle yet. She was able to visit everyday and had fun coloring, eating all the good hospital food, and watching too much TV. We spent most of the afternoon together and although saying goodbye was hard, we still got a lot of quality time together. Past hospital stays were hard because she got restless and bored so visits were uncomfortable for all of us. We wanted to be together, but the setting just didn't make sense for such a little kid.

As Kaylee has gotten older sleeping over at her Nana and Papa's house is seen as the ultimate weekend. She was able to sleepover with Nana and Papa a few times while I was inpatient which made the stay so much easier on her (and me). With her grandparents she doesn't feel like she is away from mommy who is in the hospital, but rather having the best sleepover ever. As she gets older I can see this being our saving grace again and again.

I am not going to pretend an 8 day hospital stay is easy on a toddler or her parents. It is hard! So hard! There were tears on all ends and when it was time for her to go home it felt traumatic for her (which was traumatic for me... mom guilt!!), but we were able to stay connected and find fun and laughs in the hospital too. 

Hospital Schedule

I often have family and friends ask what I do in the hospital all day. People often don't realize how busy CFers are when they are in the hospital. Treatments come every 4 hours around the clock and can take 30-40 minutes to administer. Add strange medication schedules, early morning blood draws, staff coming in almost every hour, and we often go home feeling sleep deprived!

6:00am- My nurse brings my acid reducer which I take and promptly try to go back to sleep.
7:30am- breakfast arrives along with my vitamins and meds.
8:00am- treatments. This means if breakfast is late or I decide to asleep in I don't get breakfast until it is ice cold.
11:30am- lunch arrives.
12:00pm- treatments.
2:00pm- I try to hop on the exercise bike for about 30 minutes if I don't have anything else going on such as pfts, x-rays, etc.
4:00pm- treatments
6:00pm- dinner
8:00pm- treatments
9:00pm- After treatments I try to have a snack, take Orkambi relax in the dark. I don't usually bother sleeping yet because the nurse is back by 10 to change my IVs and give me my night meds.
10:00pm- IV bag change and night meds.
10:30pm- Finally time to sleep!
12:00am- Treatments...AGAIN!
4:00am- I am supposed to have another set of treatments, but I usually decline these because I want to get at least 5 hours of sleep.

Rain Showers and Orkambi

"Maybe we will see a rainbow" my 3 year old shouted with eyes wide at the thought.
My dad and I exchanged glances. While smirking I replied, "Maybe" not believing it one bit.
It hardly rains in the summer. We haven't seen rain in four months or so, but a recent drizzly day made its way into the end of summer leaving my daughter with the optimistic belief that she would see a rainbow. It was true the rain had stopped, but the sun was still hiding behind dense clouds and evening was quickly approaching. My daughter had a date with my father that evening and I was hoping the excitement from the date would be enough to make her forget the disappointment of a rainbow that would never be.

I started Orkambi today. The day I found out that Orkambi was approved, my application was accepted, and the pharmacy was preparing to ship my pills to me I was filled with a multitude of conflicting emotions. I am an optimist by nature, but a realist by life experience. My heart kept shouting, "This is a dream come true! Your body will be functioning more normally than it ever has before. This is what you have been waiting for" But my brain kept shouting just as loudly, "But the benefits are minimal and your lung function is already so low." My heart would rebuttal, "Improvement is not the point, stability is what matters. " The fight between my jubilant heart and my practical cautious mind roared on throughout the week

This morning I woke excited and anxious for the postal carrier. And once the meds were in my hand around 9am I suddenly felt nervous in a way I haven't felt in so long. This was the moment of truth. All the potential benefits and all the potential let downs were running through my mind. I wanted so badly to let my optimism take over my cautious mind, but I was equally concerned about being disappointed. I sat there for a long time before swallowing my first pill. It is okay to hope for the best, I kept telling myself. It is okay to be optimistic for once and believe that good things, no matter how small, are coming your way.

I could hear the giggles and high pitched voice of my little girl running up the front steps. I greeted both her and my dad at the door with a big smile. Before I could even ask how the date night went my daughter, hardly able to contain her excitement shouted, "We saw a rainbow, mommy! We really did!"

Forgetting Enzymes

CFers take enzymes every time food passes our lips. It is so engrained in our daily routine that we often take them without much thought. It is so routine that there are times we may wonder, "wait, did I take my enzymes already?" It happens to me more often now that I have a little one that distracts me during meal time, but let's be real, it happened often enough before kids. Recently, my dad found the perfect solution to this annoying problem at the local pharmacy.

 

His great find is a lid that goes on regular prescription bottles (the translucent orange kind) and keeps track of how much time has passed since the bottle was opened. So let's say you ate breakfast at 7am and you sit down for a snack at 10am, but you can't remember if you already took your enzymes. You can take a peak at the lid and if the bottle says 3 hours have passed since you opened it you know you better get swallowing. And if it says 1 minute, you are good (as long as you didn't accidentally place your napkin on top of your pile of enzymes by accident not that I have ever done this ehem).

The downside is they don't fit on the plastic Zenpep bottles, but if you have CF you probably have a few extra orange bottles on hand (or will once your next shipment of prescriptions arrives) that you can use. These were clearly from Rite Aid, but I assume most major pharmacies have the exact same product. Hopefully this will answer the age old CF question of, "Wait, did anyone see me take my enzymes?"

A Green Tomorrow

To plant a garden is to believe in tomorrow.

- Audrey Hepburn

I started my first vegetable garden 5 years ago, in pots that were much too small, outside my apartment's front door in a much too shady and busy walkway. Throughout the day I would move the pots holding my precious tomatoes and peppers to wherever the sun was filtering through the branches of an overgrown pine tree. It was the worst conceivable place to grow a garden, but that little potted garden that gave me a total of three tomatoes and two stunted bell peppers ignited a passion in my soul that I have never been able to shake.

Today, the first sight you will lay your eyes on when you go in my backyard is a large display of raised beds that is home to everything from asparagus to watermelon. My mornings and evening are spent tending to my garden and my kitchen is home to the rewards these plants offer in return for my care and attention. It seems at times my daughter was raised in the vegetable garden and the age of two can rattle off facts about garlic scapes, and the importance of ladybugs, and that melons have both female and male flowers.

I always found it funny that so much of my life is avoiding thoughts of the future, a future that statistics and doctors assure me won't be long. Yet, I spend my time on a hobby, a passion, an obsession that is all about forward thinking and constant planning for the future. The seeds I so careful sow in the ground in spring comes with so much hope of thick green vines heavy with melons that will fill my stomach and soul mid summer. I cover my strawberries today to protect them from tomorrows ravishing birds. Asparagus is planted with the hope that in three years time I will have spears to grace my dinner table.

If you ask me about the future of my garden you will grow bored and restless long before I stop chattering on about expansion, and artichokes, and aphids. If you ask my about my future, the future of my health and my life you will be greeted with a harrowing silence. You will see an empty vastness in my eyes so foreign in a woman still in the prime of her adulthood.

The garden is a way to plan for the future and put my hopes and dreams into a tomorrow that feels so uncertain. Somehow it feels safer to make plans for my plants than for myself. If I never get the harvest of cherries it is much less heartbreaking than never seeing my daughter get ready for prom.

So for now I carefully tuck seeds into the soil so that in two months from now the ground will be stuffed with plump carrots. And as for what lies in the future? The carrots are all I can be certain of.

Clean and Care Free

You know that feeling you get after filling your gas tank? The relief when that little voice that keeps nagging, "your tank is getting low" and "don't forget you need to fill your tank soon" is finally quiet? That voice that you didn't even consciously know was bothering you until it is finally gone?

Yeah, I get that same freeing relief times ten when I know all of my nebs are clean and dry!