Today I walked three miles.

I feel almost silly writing that down, but for today it is an accomplishment. I’m in my re-building season right now and three miles is progress.

A couple of weeks ago I had sinus surgery. This is a fairly common surgery in general, but especially for people with Cystic Fibrosis.

You can read more about how CF affects different parts of the body – beyond just the lungs – in this post. 

Somehow I always forget how hard it is to recover from a surgery. The first few days I understand but I spent a good week and a half feeling tired and foggy and achy. So of course the moment that I started to feel better I overdid it.

I always do this.

My mom’s voice is forever in my head saying “patience is a virtue” – the mantra she followed me around with my entire childhood. Cognitively I get it. Somehow I can never quite convince my body to sit still though.

Patience.

Patience with myself is so hard. In this particular part of my CF cycle, it is particularly hard because I want to get back to “healthy.” But I take a deep breath and try to give myself some grace.

affiliate links may be included. thanks for your support.

The Season of Life with Cystic Fibrosis

I think of my life with Cystic Fibrosis in terms of seasons. Healthy season. Sick season. And the Rebuilding season. They need better names – but cycle after cycle of these seasons are my life.

Healthy Season

I am going to work hard to not put healthy in quotes every time I write it here, but obviously someone with Cystic Fibrosis isn’t healthy.

It wasn’t until I was about 20 year old that I realized that not everyone feels congested every day of their life. Not everyone has a headache at some point during the day every day. That not everyone coughs, has drainage, stomach issues and a host of other mildly irritating symptoms every day.

It’s a bit embarrassing that it took me that long to figure out, but see here’s the thing: I don’t know any different so it never dawned on me that there are people that wake up in the morning feeling great.

Anyways, Healthy Erin is great. I like healthy Erin.

Healthy Erin has energy. She goes to the gym or for a run every morning. She is organized, smart, patient(ish), and active. She writes stories. She writes blog posts. She plays with her kids and plans creative things for them to do. She loves spending time with her husband and has amazing friends.

Sure there are daily meds and frequent doctor appointments and obsessive attention to the amount of water I’m drinking, but that’s all doable and worth it to feel good.

When I’m healthy I truly love my life.

But then I get sick.

Sick Season

The sick season sucks. I usually start with denial, especially because it almost always arrives overnight and when I have zero time to pay attention to it.

I trudge through the early sick season thinking that maybe just maybe my body will miraculously figure out where that immune system button is and turn it on.

I slow down.

I walk more than I run.

I start to forget things or feel overwhelmed.

I do less writing. I take less photos.

Until I sort of chug, chug, chug to a stop.

And then I sit. And I sleep. And I watch more shows on AmazonPrimeVideo and Netflix than is probably healthy.

This lasts however long it lasts. I’ve learned that there is no rushing it and for the most part I have come to accept it, aside from some underlying guilt for whatever I’m missing and pushing onto my husband’s plate.

But eventually I emerge.

Re-Building Season

As much as I hate the sick season and as much as I feel relief and gratitude every time I start to feel better, the re-building season is rough.

In my world there isn’t “sick” and “healthy.” There is also a middle world. This part of the cycle is where I feel close to better. Feeling completely normal and healthy though takes time. If I rush it I get worse and upset and usually sick again.

I have to start slow at the gym and build back up.

I have to gather all the emails, notices, and papers I missed while I was foggy and get organized again.

I have to catch up with friends and figure out what happened in the world while I was in my streaming comma.

I have to be careful about what I eat to avoid my body freaking out.

I have to take a lot of slow, deep breaths and remind myself that this is just a season.

But slowly, day by day I build back to “healthy.”

GET YOUR OWN DEEP BREATHS SHIRT

Today

Today I went to the gym. I walked on the treadmill for 60 minutes. Next week I’ll maybe try a little running.

Today I wrote and edited a story. It’s not great, but my lovely critique group partners will give me their honest, helpful thoughts and I’ll make it better next week.

Today I have already had 52 ounces of water…and it’s 10:19 am.

Today I’ll assign myself a break at around 1:00 to give myself an hour to rest before I pick up the kids.

Today I get to pick the movie for our family movie night and I’ll read my kids books before they go to bed. I’m thinking the new Vanderbeekers book.

And tomorrow I’ll get up and push myself a little more towards normal.

I know from experience, countless cycles of these seasons, that I’ll feel good again and when I do I’ll make the most of it.

And that’s really the most important thing I’m learning.

I can’t control when the seasons come and go, but I can make the most of the healthy days when they’re here. Until then I will give myself grace.

Find All CF Posts Here

I was running up what felt like a mountain in Baraboo WI pushing my kids in a Burley in spring of 2013 when something happened that changed my life.

Note. If you’re squeemish proceed with caution.

My twins were about two and I was determined to get back in shape. I had decided to do a triathlon before my 30th birthday. This is why I was currently pushing upwards of 50 pounds up a hill like a crazy person.

To be fair, I was a new twin mom so in reality most of life felt a little crazy at that point.

I was halfway up a hill digging in hard, my lungs, arms, and legs pumping. Suddenly I felt the urge to cough and up came a huge clot of blood.

Now if you cough up a clump of dark red blood larger than a quarter – call the doctor. That would be the smart thing to do. I didn’t do that. (Sorry mom.) However a week later when it happened again in the middle of the night I was a bit more concerned. I called my doctor’s office in the morning and made an appointment.

It was a general practitioner in a teeny tiny town that noticed the triangle on my chest x-ray a couple of days later and that was how I found myself at almost 30 sitting in a pulmonologist’s office for the very first time.

I often wonder if my pediatrician or asthma doctors had referred me to a pulmonologist earlier if my diagnosis would have been caught when I was a child. For the record, I do not blame them or anyone else. I also do not think that my life would necessarily be better if it had been caught sooner, but I do find myself wondering from time to time.

Regardless there I was.

Negative sweat tests. Broncoscopies. Sputum cultures.

Several months later my Cystic Fibrosis was still not diagnosed, but a very icky infection had been found in my lungs. Long term IV treatment and possible surgery were batted around as treatment options, when suddenly our life changed again.

In 2014, we found out that my husband got a job opportunity in Mississippi. We put a pin in the discussion of treatment options and moved to the Deep South. There after our boxes were unpacked, I began treatment with a new doctor.

Treating the infection in my lung turned out to be much harder than anticipated. I had one horrible side effect after another. 6 PIC lines, a couple trips to the hospital and many IV drugs later, my doctor referred me to another specialist in Texas.

It was this doctor who eventually insisted on a genetic test for Cystic Fibrosis and in 2015 I was diagnosed.

I’ll spare you the lengthy, boring treatment and doctor appointments for the infection in my lung because the short version is that it didn’t really work and driving 5 hours to see a doctor every couple of months is annoying.

In April 2016, a month before we moved to New York City, I had a partial lobectomy (in other words, most of my right lung was removed).

What followed was the most painful rehab of my life thus far. A lengthy hospital stay. Two chest tubes. My lung collapsing several times. Another hospital stay. Bed rest. Saintly parents watching my twins. Two trips to the Emergency Room in two different states. Re-opening of my surgical site. Another minor surgery to repair it. All this as we moved our family from Mississippi to New York.

In other words, a mess.

However, two years and yet another move later, you would never know to look at me that any of this is true. That’s one of the hardest things about Cystic Fibrosis. For the most part it is an invisible disease.

I still struggle to walk up stairs or big hills.

I still do daily treatments and take sick days more than I’d like.

I still see my doctor more than the average 30 something.

I still have scars all over my right side from the surgeries.

But, in general, I’m much more healthy. My lung function is closer to where it was before that blood clot filled run uphill. There is currently no trace of the infection in my lungs. And with lots of careful work, my Cystic Fibrosis is just an annoying thing hanging around that I can mostly ignore.

also read: Giving Myself Grace & the 3 Seasons of Life with CF

This morning I went for a run again. My twins don’t fit in a stroller any more, thank goodness, and I was alone with my thoughts. I’m older now but still just as determined to make these lungs work.

I don’t know what the future holds. The stats on CF are somewhat disheartening but progress is being made every day. The truth is that diagnosis or not, no one knows what tomorrow will bring.

So all I can do is lace up my shoes, take a deep breath and start running again.

I am one of tens of thousands of people who
fight CF every day.
Learn More about How You Can Help Here.

The moment you arrive at Torrey Pines State Reserve it is pretty obvious why this hike makes it onto so many Best San Diego Hikes for Kids and Best San Diego Attractions for Kids lists.

It is gorgeous! And this isn’t even close to the best view.

affiliate links may be included in this post. 

Now I aim to be completely honest here – so I’m just going to say it – the first part of this hike kind of sucks.

You start down here – either park in the lot or on the street just before the park entrance – and then you hike up a hill. You can park at the top but then you’re going to end with the hard part so I don’t recommend that.

So, once you park, you head up a hill. A big hill. Like a super big hill. Not steep for the most part but a long, slow climb up.

Now to be fair, ever since I had that huge part of my lung taken out hills have been hard for me. Part of why I like to hike so much and love California so much, is that forcing myself to walk up these things, while hard, is super helpful for strengthening what is left of my sad lungs.

Even still, those of us that didn’t have a partial lobectomy were also struggling up that hill.

Hang in there through that climb, it is worth it.

The views from the top are spectacular. On a clear day you can see ocean for miles.

I am fascinated by the west coast landscape right now so I loved every bit of this hike. The ocean. The rocks. The foliage…

At the top there is a small nature center and there was also a Ranger outside the bathroom (port-a-potty) area. My kids immediately started asking him questions about the different things on his table.

They walked away (many many many minutes later) with new knowledge about the animals in the hills of San Diego. Learning thru adventure for the win!

We also got our handy bird guide that has since been used on several hikes at the nature center.

So bird guide, new knowledge and rested legs (and lung) in hand we headed down the mountain.

All the way down the views were spectacular. I’ll spare you the hundreds of pictures I took but it was amazing.

Follow the Kid Friendly San Diego Facebook Group!

The hike down is definitely doable for little legs. My kids are good hikers at this point (my twins are 6) but I think most kids about 4 and up could handle the walk down. I would probably have attempted it with my kids when they were three but especially the uphill part would have been a struggle.

At the bottom you are rewarded with a stunning beach.

also read: rock field trip to Torrey Pines and activity ideas

The hills, the rocks, the water, the beach. This was pretty much my version of heaven. A busy heaven – because this is a super popular park, but it was amazing.

also read: 52 things to do in san diego with kids

We walked along the beach back in the general direction of the car taking our time the whole way.

My kids loved hopping on rocks and wading into the little pools of water.

I took more pictures and just marveled. Truly. What a beautiful place we get to call home for a while.

We ended at the beach in front of the entrance. My kids couldn’t resist a splash in the (freezing cold) Pacific. And really after all that hiking they had earned it.

Good Things to Know about Torrey Pines

In conclusion, here is what you need to know before you hike at Torrey Pines.

• Wear comfortable shoes.
• Be prepared to go uphill.
• Bring water for going uphill and for the sun.
• Wear sunscreen.
• Stop at the bathroom at the top.
• The top is also a good place to stop and have a snack.
• Be prepared for kids to want to get wet at the bottom.
• It is awesome

If you’re looking for a hike in San Diego I definitely recommend this one. It is one we will do again.

Learn More about
Having Adventures with Kids in My Book!

My watch said it was only 9 am as I shifted on our lumpy couch to better situate myself between a rumpled pile of tissues and my squirming three year olds. It was one of those crappy CF days when I woke up congested and coughing and more equipped to watch an entire season of something on Netflix than to be a parent.

The three year old closest to me stretched into my space, leaning her head against my shoulder with a gentle moan, and I could tell that their patience with my lethargic morning was coming to an end.

I needed a game plan.

If only my head would stop pounding long enough to remember an activity idea. Have you had a morning like this?

affiliate links may be included. thanks for your support.

Parenting is a hard job on any day, but what happens when someone is sick?

Whether it is you or your child, having a sick person in your house changes everything. Energy is low, patience is low and neediness is high. Sick days – especially when I am sick – are when I truly drop into survival gear. My goal is simply to get through the day with as little crying and as much hydration as I can manage.

How do you survive sick days?

In our house, sick days usually mean a huge increase in tv. This is not something I feel overly comfortable with as a mom, especially once our twins start feeling a little better.

This is the hardest stage for me.

They aren’t well enough to leave the house, but they aren’t sick enough to need to lie down and get extra sleep. I feel even worse about it when I am the sick one.

Potentially more difficult than having a sick kid is having a sick parent.

Unfortunately because I am a mom with Cystic Fibrosis this comes up much more than I would like. There are a lot of days that I have low energy and low creativity and I hate for my kids to be sitting around like lumps because of me.

read also: how to parent when chronically ill

Over the past couple of years I have slowly started gathering simple materials and activity ideas to have on hand for these days. I am sharing our favorites below. I also asked some blogging pals and some fellow mamas to share their favorite sick day activities so you would have the most well rounded list possible. Hopefully if you pin or bookmark this – the next time you have a sick day it will be an easy survival resource.

First – My criteria for a sick day activity?

• Materials I have on hand.
• Zero to 5 Minutes of preparation.
• Low energy

24+ Activities for Your Next Sick Day

1. Contact Paper Collages
This is one of our favorite activities and there are a million ways to create a contact paper collage. Find whatever you have on hand and some contact paper. Tape the contact paper sticky side up to a window, wall, or table. Put the other materials (leaves, collage scraps, newspaper, string, etc) in a basket nearby and you are done!

2. Lego Bath
This idea from Busy Toddler is genius. Legos (or duplos) and a nice warm bath. What else do you need to feel better and be occupied?

3. Pipe Cleaner Loops
Have pipe cleaners? That’s all you need for this fine motor activity from P is for Preschooler.

4. Stickers
Stickers are magical are they not? All you need is some stickers and paper or small notebooks and you have a simple, engaging fine motor exercise.

5. Muffin Tin Memory Game
Muffin tin? Check. Cupcake liners? Check. Small objects? Check. You are ready to play this game on Teach Me Mommy.

6. Board Games
This is an easy way to have some fun without needing to prepare anything. The older my kids get the better board games work for passing the time.

7. Lacing
Lacing is a great fine motor activity and only requires to materials. Some string and something to thread – beads, washers, or pasta, like in Teaching 2 and 3 Year Olds’ activity.

8. Color Sorting
Grab some construction paper and then your kids do the rest of the work in this sorting activity on Pleasantest Thing.

9. Tinkertrays
This is something you will want to create beforehand but once you have a tinkertray this is an easy activity. Place the tinkertray on the table with some construction paper, cardboard, styrofoam or some other base.

10. Sewing Spool Stacking
This idea from Rhythms of Play requires only one materials, but could easily engage little ones. 

11. I-SPY
Pleasantest Thing has some great FREE printable I-Spy pictures. Print them out and then snuggle and play.

12. Tape
Toddlers seem to find tape magical (post it notes as well). The younger the child the more basic this activity can be. For a tiny toddler, a roll of tape is all you need. Just stick some piece to a surface and let them unstick and restick to their heart’s desire.

also read: when does the easy part of parenting start?

13. Shaving Cream
If you don’t mind a little mess, shaving cream is calming and easy. Spray some on a cookie sheet or highchair tray and let your kid play. A bath afterwards is just more calming fun.

14. Take a Bath
Extra baths are one of our favorite sick day activities. My kids love water so they will happily sit in the tub for an hour for no reason. As a bonus, baths tend to help you feel a little better. For some extra – still low key fun – add some DIY foam trains to your bath.

15. Glue Stick Collage
Glue sticks require far less clean up than liquid glue. This Shape Art activity is one of our favorites and requires construction paper, scissors and only a tiny bit of prep.

16. Duplos and Legos + Challenge
My twins love to build and I love the idea of building challenges. Sunshine and Hurricanes has some FREE printables so you don’t even have to come up with ideas! The only other thing you need is a bucket of legos or duplos.

17. Digital Word Games
Childhood 101 has a great collection of literacy online games.

18. Collections
Have your toddler make a collection. This is a great activity if you, the parent, are sick. It keeps them busy for a while, but you don’t have to do much, if any, moving around. You can make any sort of collection. Nature collection. Small things collection. Pick a color and make a collection or better yet build the whole rainbow.

19. Playdough Cookies
All you need is playdough and cookie cutters. Have your kids “bake” you all kinds of treats while you sip tea.

20. Listen for Birds
This might sound so weird, but I like to plan at least some of our sick day outside. After a whole day inside we all start to get super crabby and this can often be fixed with just an hour or so of fresh air. Lay a blanket on the ground and listen to the birds or spot shapes in the clouds.

21. Marble Run with Cardboard Tubes
All you need is: cardboard tubes, painters tape, and a ball or marble for this fun STEM activity from Little Bins for Little Hands.

22. Write Mail to Someone
Set up a simple invitation with cards or paper prepared for letter writing and invite your child to draw or write a message for someone.

23. Drawing Prompt
These are one of the easiest things to set up and often engage our children for a lengthy period of time. This Fall Tree Prompt is one of the first I made, but you can look at my other Instagram feed for more ideas.

24. Read.
I don’t personally think there is a better sick day activity than reading, as long as you don’t have a terrible headache. You probably can’t read all day or you will go hoarse, but grab a stack of books and snuggle on the couch or lay on a blanket outside to get some fresh air and spend some time reading. Audiobooks are also another great source of entertainment if you do have a headache or simply can’t read another book. Here is a list of some of our favorite audiobooks.

What did I miss? Comment below or email me at erin@bambinitravel.com with your go-to sick day activities and I’ll add them to the list.

Click to Read More about Parenting with Cystic Fibrosis