Sunday, February 26, 2017

When She Tried to Shame Me At Costco

Orson, age 3, and me pregnant with baby Ruby in 2015

It started as a very pleasant shopping trip. I had met my husband at Costco with our 3 year old son to do a little shopping and have lunch. Much to my delight a sweet friend was also there eating lunch with her three and one year old sons waiting for their tires! My husband went back to work while I stuck around to finish lunch with my friend. My cart was of course nestled in close to our table in the well known Costco food court.

As I heaved myself up out of the welded in bench to table set up, very ungracefully at 6 months pregnant I was stopped in my tracks by another shopper. All I had to do was lay my hands on the push bar of my giant Costco shopping cart for this lady to lay into me with all kinds of opinions and advice.

She began to tell me that she was a registered nurse and knew lots of really smart things about optimal nutrition for children and that the food in my cart was unfit for consumption. She said that I was hurting my children by purchasing such food. She told me that I had made some bad decisions and should really think twice about the kinds of things I let my kids eat.

She wasn’t quiet about it. She wasn’t nice about it. She had laid in wait at her own nearby table (and hey if she was there eating anything from the Costco food court herself lets be honest is she really one to lay judgment on my shopping cart?) just waiting to see which mother at the table eating pizza with three boys was going to stand up and claim that cart. She was ready for either one of us to fess up to buying…….a jumbo sized container of cheese puffs.

Yep that’s what she was shaming me for. Cheese puffs. That’s what she decided to verbally attack an ungraceful pregnant woman for.

How did I react? Well I was definitely shocked. I had no idea that my purchase would ever cause such alarm and anger in another person. My reaction was an attempt at explaining myself to this impassioned registered nurse but I found myself mumbling and speechless. I ended up walking the rest of the way to the car getting angrier and angrier with each step. Orson my three year old asked, “Mom why was she so mad about the cheese puffs you bought me?”

What this impassioned registered nurse didn’t know was that my three year old son was losing weight and uninterested in eating much of anything. What she didn’t know was that on top of losing weight at the age of three, which of course isn’t typically ever a positive thing that he also has Cystic Fibrosis which makes his pancreas non-functioning and his digestive system in general trashed. What she didn’t know was that Orson was weeks away from getting a g-tube placed and since birth was never an exceptionally eager eater so when we pass the JUMBO sized barrel of cheese puffs in the Costco and he expresses and interest in eating those I gladly put them in the cart.  

So as I’ve taken many deep breaths over these past two years since this happened and thought about this woman who knew nothing about me but wanted to shame me for my decision I immediately think of the friend I was sitting with at lunch that day.

She came to my house not long after my attempted shaming. Maybe I should call it the Costco cheese puff shame fest….OK so my friend came to my house not long after the Costco cheese puff shame fest and brought to my door a surprise. What could it be?

Well of course my sweet friend brought me a GIGANTIC barrel of cheese puffs from Costco. She then handed me a wonderfully encouraging note she had written about my family. She said that she was shocked at the fellow shopper’s behavior and wanted me to know that I’m doing good things and not to think about the angry impassioned registered nurse a second longer.

This is another example from my life when Heavenly Father sees the bump in the road coming and gets all the right people there at the right time to smooth things over. Was it a coincidence that I had my shaming witnessed by a friend? No way! Have we ever run into each other at Costco again? No way! She was there that day to witness my bump and be my smoother. I’m grateful to know that I’m not alone in my struggles ever and that God loves me and watches over me and my family.  

PS – In my mind since the Costco cheese puff shaming of 2015 I have mentally rehearsed several kind return responses to the registered nurses attack. Also in my mind she has asked for my forgiveness of her harsh and out of line verbal attack and I have given it. All is well with this stranger, in my mind of course.  

Sunday, February 19, 2017

You Might Be A CF Family If......

I really enjoyed Letterman's top ten lists and miss them. My husband sneaked a radio to listen to sports at night when he was a kid and I sneaked into the living room to watch David Letterman's top 10 list. Sometimes I didn't even have to sneak, I'd just sit next to my Dad and watch. So I've been mulling over this list below for a while. This list is more of an inside joke for other CF families in the world but I got a kick out of writing it. I kept changing it, probably could have made it a top 20 list, but here's my try on a little Letterman top ten list.

Top 10 Signs You Might Be A Cystic Fibrosis Family

You Might Be A CF Family If:

10. You get excited when Miralax goes on sale.

9. Your kid is best friends with the school nurse.

8. You require two gallons of half and half per week.

7. You know what it means to “flush the line.”

6. You carry applesauce with you wherever you go.

5. Your collection and variety of sizes of syringes makes you proud.

4. You’ve mastered the art of getting a baby to swallow the contents of 4 pills in the dark, in a movie theatre, at the zoo, mini golfing, camping, and many other strange and exotic places.

3. You have several creative uses for IV split gauze, or even know what IV split gauze is. 

2. Your kids aren’t allowed to flush the toilet until you inspect their poop.

1. You know what a “virtual line” is at Disneyland, and you dream of it at the grocery store.

Now to the business of the rest of this weeks blog post. I wanted to highlight some of my favorite pictures from this week.

First off we have baby Ruby, who is talking and interacting so much lately that we probably shouldn't call her baby Ruby anymore but we won't stop and you can't make us. She was indulged in some necklaces this week and we had to tackle her to get them off for bed time.
 Secondly we had a clinic visit this week, always quite the adventure. Also happened to be the day I figured out how to use the "My Story" on Instagram which I have had fun with. I snapped this picture during Orson's PFT test. He isn't quite old enough for them to get a reliable number but they have wanted him to practice for the past year. Here he is huffing his heart out into this computer to test his pulmonary function. His big sister Maelee is in the background intensely cheering him on. She has just finished with her test and knows the seriousness of the PFT test. After all Maelee knows her PFT's are what landed her in the hospital and what got her out. Its serious business. I love the look of intensity that they both have in this picture. Its a perfect summation of the feelings these CF people feel as they are measured and weighed in so many areas constantly.
 This was a sweet picture taken on clinic day as well. Some sort of special connection happens to siblings who get stomach x-rays together.....and I don't just mean the shared radiation exposure (sorry that may have been an inappropriate joke). Really though a strange and wonderful blessing of having more than one kid with the same chronic disease is that they have the opportunity to see the journey from many points of view. I love to see them cheering for each other knowing very well what the other one is going through.
That's all folks I hope that you enjoyed some sweet pics from this week. Stay tuned for upcoming blog posts about the two weeks I created an inordinate amount of work for myself and my husband by picking the wrong word, and how we try to keep our one non-CF child as connected with these three who share 4 hour doctors appointments and hours and hours of treatments together.

Sunday, February 12, 2017

Maelee's Mountain

Right after Maelee had her surgery a couple of weeks ago everyone in the family got sick with colds to different degrees. Maelee’s symptoms of late have been a very persistent very challenging cough. I assume it’s part allergies, part healing from the surgery, and part pseudomonas (which they found in her results of the bronchcoscopy). She has difficulty controlling it because it’s one of those back of your throat itchy, swollen, non productive coughs that just stay and stay and OVER stay their fair share of a welcome.

One morning this week we were driving to school and I decided try to be helpful and fulfill my role as a mother and give her ideas of what to do to help her cough. I said something like, “you need to try and help yourself not to cough as much as possible like taking sips of water and blow your nose.” Then she turned to me and said, “Mom you sound just like the kids at school. They tell me to go away and not to sit by them because I’m coughing too much and that they don’t want me to sit by them. Well I’m really trying Mom but its hard.”

At that point several thoughts and emotions ran through my mind. First, I felt so ashamed that I had said anything to her in a way that made her think that her cough was something she could choose to start or stop. I had judged her, assumed really that she could control it. I wasn’t as empathetic and kind as I should have been as a person and especially, ESPECIALLY as a mother. My attempt at trying to help, just confirmed what others had said in attempt to hurt. She works so hard to keep herself healthy and is blessed enough to have “no cough” at her “baseline,” and when she does get one it’s absolutely not something she can control.

I asked for forgiveness and then helped her think of a plan to combat this cough. Now as she fulfills her role as a daughter, naturally we will have a difference of opinions on the “best” plan but I can do a better job at being an empathetic person and mother as I talk to her about her trial and help her be successful to overcome it instead of making assumptions as I did that morning in the car.

Many other things I’ve witnessed Maelee do while she’s been in the hospital and in recovery have made me marvel at in my opinion how difficult it is to be Maelee. One thing I cringe at every morning is how many pills she has to swallow before she can eat her breakfast. The reality of this part of her life hit me the hardest after she’d had surgery and finally got to eat. Here she is swollen and wounded from the procedure and finally its time to eat, but before she can, she has to swallow 5 enzymes, an antibiotic, and a Tylenol. It’s a heavy load to bear for her to know that yeah she could skip the pills but if she does she’ll get major stomach cramps and diarrhea. It’s a burden.

While reading a book (The Orphan Keeper, by Camron Wright) right after Maelee was in the hospital I read this quote, “Your own mountain is blocking so much light that all you can see is darkness…You are not alone…I’m not suggesting it makes the pain easier but it does perhaps, make walking a little less lonely.” Now of course this message was delivered friend to friend in an entirely different and non-related scenario to Maelee’s in the book but it was such a beautiful way of expressing what Heavenly Father has given to us in the gift of His son Jesus Christ and in the gift of families.

From head to toe I want to do everything I can as a mother to help Maelee’s mountain be less lonely of a walk, but if for some reason I can’t OR if I make a mistake in my efforts I want her to know that our Savior Jesus Christ knows how it feels. He knows what she feels. He loves her enough to have felt all of her pain and sadness and struggles. Even the ones she doesn’t ever tell her mother about. He knows and he will be there to walk with her through all of it.

Sunday, February 5, 2017

Being The Kind of Girl Who Laughs Through A Funeral

Recently in a classroom full of female friends from church we were all asked to give an answer to the question, “What do you do when you’re at an emotional low point to pick yourself back up?”

At the time it felt like my mind suddenly became a blank slate. I had no response. Then I really wanted to pipe in and say something to support my friend who was giving the lesson so I said, “music.” Which is very true! I have since my obtaining of a smart phone just last year learned to thoroughly enjoy my Pandora app. Particularly 90’s County Radio (because I like that I know the words to every song from my years of listening to American Country Countdown with my sisters in our garage converted bedroom on Sunday nights) and Hawaiian Radio (because my brother currently lives in Hawaii and it makes me think of him and because I have no idea what they are saying but it’s beautiful and relaxing non-the-less).

But later on as I was thinking about the amazing job my friend did teaching the class I realized that really in the moment of a true emotional low for me I don’t turn on music. I laugh. I should have known to give this answer. I’ve always been the girl who laughs at the corny jokes. My husband says that’s one of the reasons why he was attracted to me when we first met because I laughed at all of his jokes. He thought he never knew he was the funniest guy ever but after he met me he realized he was, until he realized I was just a laugher.

For instance, when my kids have been in the hospital (surprisingly this has only been 5 separate times in 10 years with 3 kids with Cystic Fibrosis, indeed a blessing) and Frank and I are taking turns one of us at home and one of us in the hospital those nights when I’m at home are hard for me. I come home from being hospital parent and fielding medical professionals and keeping the spirits of my kid up to jumping into the action with the kids at home who are worried and anxious and out of their routine as well. By the time I get the home kids in bed and I have that moment of silence when I know they are finally all asleep it hits me.

The emotions I have been ignoring all day by taking care of my family all catch up and tap me on the shoulder at the same time. Since I am alone I can choose right then how I answer the question my friend asked in her class, “What do you do when you’re at an emotional low point to pick yourself back up?” A quick reflex is to just sit there and sob wallowing in my sadness and worry. I have definitely done that on many of the nights, but I hate crying because I have a hard time stopping especially when I’m alone. So the next thought that comes to my mind is that I need to laugh. Not at something new that I’ve never seen, but I need to laugh at something familiar that I’ve laughed at before.

Thankfully I have a handful of television shows that never fail get me to laugh out loud. Plus since I’ve seen them before I can clean the house and do the dishes waiting for my que to laugh with my favorite extremely well written characters in television.

The laughter clears my head and I can think rationally though my emotions rather than surrendering to the panic of it all. I know that laughter is the way I have been blessed with to get me through my difficult moments in life. I mean heck I laughed so hard with my last pregnancy watching one of my shows that it made my water break! So it’s definitely my thing, laughing I mean not giving birth. I’m grateful that God wants me to have joy and blesses me with opportunities to receive that joy!