t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.


Daddy Daughter

I think these are the first shots of Brent and Berks. He doesn't bond quickly with the little bitties, but I think she is starting to grow on him. For the record, when he falls, he falls hard. Brent is an amazing father.


Nothing Says...

...Great Grandma like a long strand of pearls.

Nothing says holidays, like an afternoon at the Nutcracker with the girls.

We had a wonderful time with Grandma, sisters and cousins. Everyone was in pearls.


No Wonder

If this was pushing on one side of your ear drum and fluid was pounding on the other, I think we could all agree it would hurt, and we wouldn't be able to hear. Thank goodness it is gone.

Last Monday we scheduled Ellery's tubes for Thursday. The office called on Tuesday to let us know we could avoid a $250 out-of-network charge if we waited until the following Tuesday. It seemed like a no-brainer to wait. However, the decision to wait was greeted with tears and panic from little Ellery. She was petrified she couldn't hear and in pain. Early Thursday morning we called and our fabulous ENT squeezed her in.

Emmett's tubes went in on Tuesday. He was such a brave trooper. His poor ears were full of pussy fluid and mucous. They also removed his adenoids, which makes the procedure a bit more intense and the recovery longer. He is still quite under the weather. After 2 years of fluid silently sitting in his ears, he should be in a new world. We are hopeful his vocabulary will increase exponentially and his articulation improve.

In 7 days I had 2 surgeries and 4 different doctors appointments. Next week we have 3, but thankfully all with the same pulmonologist at the same clinic. If I just don't think about it, I don't get overwhelmed.


Callista gave a talk in Primary on Sunday. Here is one of her practices. She was very nervous. I was so proud that she staved off the giggles and the tears. She only needed a bit of help. With our life so crazy right now she only practiced the talk for a couple days. The poor little lamb kept saying, "Mommy, when will we be writing my talk?"


A Work in Progress

The absolute best part of this performance are her smiles and finish. Talk about gusto!

She can play this piece much better. She will be performing it again in 3 months at her next recital and for a piano competition.


Veteran's Day

Brent and I have differ and agree in our opinions on the Armed Services. He argues it is no longer a service because the military is paid. They voluntarily sign up, no longer a conscription or sacrifice of time and talents. I disagree. In my eyes it is still a service their pay is no way compensatory to the risk they run of losing their lives.

He and I both agree our country is imposing a specific way of life and government on others which may not mesh with their cultural and religious ideals. We seem to have become a self righteous. In war there is no right side. Everyone is a loser. Regardless of motives or results, war does not please or serve God, only the enemy of all righteousness. There is always a better way. I haven't always felt this way. I used to think you could be on the "right side" in a war. No longer.

Here is a little clip from Ellery's Veteran's Day program with the Elementary School Choir she is a part of.

We also agree our current wars are not defensive but aggressive. I have to believe most soldiers feel they truly are defending freedom and the "American" way of life, they feel is so threatened. They are innocent of motives of greed and power that may underlie things at a higher level.

I was born with my Dad's rosy glasses. Sometimes they serve me well. Other times they don't.

I wish our resources were diverted elsewhere, instead of building up the military-industrial complex. I am a far greater advocate for peace than I used to be. I remember feeling glued to the television, waiting to find weapons of mass destruction. Disillusionment has overtaken my zealousness. Far too many times I am wrong about things to be so bold as to try and impose my way of life on someone else. There are far too many good, peaceable people in the world of all faiths and political ideologies for me to be to pompous and think my vision of the world is correct.


Warm Pasta Salad

In household with no meat and very little dairy, pasta salads are a staple. Winter doesn't have to end the enjoyment. This particular salad is served warm, with crisp, slightly warmed vegetable. It is key to this winter salad not to overcook the vegetables. The zucchini is added raw. It softens just enough when mixed with the hot noodles. If you don't usually use whole grain noodles try them on this recipe! The nutty, earthy flavor of the whole wheat compliments the walnuts perfectly.

But one of my favorite thing about this pasta salad is my children can pick through it quite easily. One doesn't really like the olives, the other doesn't prefer nuts. They just work around it. It tastes great with all the flavors blended together, but is mild enough to be enjoyed by even fussy children.

Unless of course we are talking about Emmett who really won't eat anything on any given day.

Warm Winter Pasta Salad

(From the "Very Vegetarian Cookbook")

12 oz whole wheat rotelle

12 thin asparagus spears

2 small zucchini's, chopped

3 green onions, chopped

1/2 green olives or kalamata, quartered

1/2 c chopped walnuts

parmesan cheese

real salt and fresh ground pepper

extra virgin olive oil

Cook pasta as per directed. Toast walnuts in a cast iron pan for several minutes on medium high heat. Steam or blanch asparagus for 2-3 minutes. Immerse in ice water. Cut in 1 inch pieces. Drain but do not rinse pasta. Pour olive oil over pasta. Toss with parmesan cheese to taste (I just use a few tablespoons of a strong fresh cut for flavor). Stir in zucchini, asparagus, olives, green onions and walnuts. Add salt and pepper to taste.


Roasted Butternut Squash Soup

A rainy day, a Saturday filled with raking leaves, pulling down dead limbs from trees ready to slumber, these all reminded me of my favorite savory, fall squash soup. I came across the inspiration for this soup at a sampling table at my local grocer almost 6 years ago. I've tweaked it a bit over the years as my cooking and dietary habits evolve. Here is my most recent version.

Roasted Butternut Squash Soup

1 head garlic

Extra virgin Olive Oil

SeaSalt and Freshly Ground Pepper

1 bunch fresh sage

2 medium onions, quartered

4 carrots, quartered

2 ribs celery, quartered

2 T maple syrup (honey or agave work as well), divided

2 lbs butternut squash, peeled, seeded, and quartered

1 quart organic vegetable stock

½ c cream (optional)

Preheat oven to 300 degrees.

Line a cookie sheet with parchment paper and drizzle extra virgin olive oil on.

Place garlic cloves, onions, carrots, celery, and squash onto the parchment paper.

Drizzle with more olive oil, 1 T maple syrup and sprinkle with sea salt and ground pepper.

Let the vegetables roast until edges brown and squash is tender, about 2 hours. You can slow or speed this process by modifying the temperature.

When vegetables are roasted, remove from oven. Squeeze garlic out of skins and use a knife to remove the squash skin.

In a large pot, add the broth, remaining maple syrup and chopped sage. Bring to a low boil and add roasted vegetables.

Lower the heat and simmer, uncovered, about 20 minutes.

If you have an immersible stick blender, puree the soup in the pot.

Otherwise, let the soup cool and working in batches, puree it in a food processor or blender.

I prefer a very smooth texture and use my Blendtec.

Refrigerate soup overnight. Usually we have some the first day too! Just before serving, return soup to a pot and bring to a simmer.

Add cream if desired, or just have some on the table, and salt and pepper to taste.

Garnish with cream and sage leaves.

This is best served with my Scrumptious Honey Whole Grain Cornbread. My children and husband had gobbled the entire pan, save a scant row, before the soup was on the table. They finished off the rest for breakfast this morning.


Denver Road Trip

Somethings we have to do as Mothers and Fathers, just about rip our hearts out. In fact, they can be downright painful. We wish so much we could trade places, and understanding with our little ones. We want to wrap our arms around them at the right moment and find the right words to talk them out of a locked bathroom at the hospital. The last 5 months have been that way with my big girl...
...and my baby girl.
Thankfully, this little boy is just happy to be alive and doesn't seem to know too much about what has been going on.
And this one, I worry about too. For so many different reasons. I don't worry about bronchiectasis and lung transplants, but I worry about the burden of being the only "healthy one." My sweet little pip who, hasn't needed a doctor since she was 6 months old.

Life took us to Denver last week. We packed 4 kids and Grandma in the car and headed through the mountains. Denver is the closest Center of Excellency for Pulmonolgy, and more specifically PCD. A presenting pulmonologist, I met in St. Louis at the PCD Conference, practices at Denver Kids. We spoke at length about the children. With his, and our local pulmonologist's blessing we took all three children out to Denver to participate in a diagnostic research study.

What seems "non-invasive" to an adult can be petrifying to a child. We spent 9 hours at the hospital on Thursday. We came close to falling apart at the end of the day, but we muddled through it somehow. Holding your child and whispering comfort as they are bound tightly in a blanket lying on a table is wretched. As Ellery and Emmet, each in turn, looked up at me sobbing with fear filled eyes, I barely held it together. Thankfully that procedure was only minutes.

These visits are hardest on Ellery. She is so smart, she isn't fooled for a moment about what is going on. She listens and absorbs. We know she is internalizing this, and I feel so unequipped to know the right way to help her process all this information.

Beyond the emotional stress, she has been battling severe ear pain for two months now. Her clogged tube is unresponsive to oral and topical antibiotics. Finally, this week her tube will be replaced and hopefully that will offer her some relief.

I felt the trip was successful.

Most telling was a test which measure Nitric Oxide levels in their nose. This one was a little fun, because with a squishy probe up their nose, they got to blow on party favors. This specific test is not available in Utah. Actually all four children were tested. A person with PCD is likely to have levels below 100, while the average person has levels above 800. Sure enough, Ellery, Emmett, and Berkeley averaged between 25-35, while Callista topped out in the 900's. I guess that particular test works.

Ellery's lung damage is consistent with Primary Ciliary Dyskinesia (PCD). Her right middle lobe and the corresponding area in her left lung both show significant damage, and permanent collapse. Her lower lobes are beginning to show signs of bronchiectasis, a permanent widening and damaging of the airways. However, her lung function remains excellent! Her body has found ways to compensate. These results from her CT scan were not better and not worse than what the doctor sees from PCD children of comparable age.

We had reassuring news from Emmett's x-ray. It showed no significant abnormalities. He will receive a CT scan here in Utah however, so all the doctors have a firm grasp on the progression of his disease.

The visit reaffirmed, PCD is a disease not well understood, even by the specialists. There were no good answers to my biggest questions. Those questions that weigh silent and heavy in my mind. What will life look like for Ellery, for Emmett, for Berkeley in 15 years? In 30 years? In 60 years? Will there even be 60 years? No answers.

And so I try to take hope because they don't have cystic fibrosis. I try to take hope as they are growing and developing into beautiful, unique individuals. I try to take hope they will be "lucky ones" not on a lung transplant list, or at least never needing their turn when their name comes up. I try to take hope that they aren't in the hospital dealing with pneumonia or psuedomonas or mycobacteria. I have much to be grateful for.

Now... on a lighter note...
A highlight of the trip was spending time with my kindred spirit Jessica. We ate dinner in her home (and that is truly what it felt like, not just a place a mom, dad and kids live), used her washing machine, laid out on the couch, and watched the children play. Our visit ended with a joint trip to the children's museum.
I love that not a single child in this picture is looking at the camera. Classic.

I wish I could spend hours upon end as a fly on her wall observing the tender, instructive way she interacts with her children. I have so much to learn from her.

And a final note...

Nothing against Berkeley, but I told Brent, I think I should have stopped at 3 children. This trip seemed to reinforce, I am teetering on becoming a frazzled, out-of-control mother. I cannot be on time for anything anymore, I seem to forget about every responsibility I have, and Emmett called 911 in the hotel room (remember this was right after we checked into the hotel with the children's hospital rate). Disaster.

My mom was so helpful and wonderful to have with us. She tagged along everywhere without complaining. We couldn't have done it without her. We even got to share a laugh on the ride home. Ellery gazing out the window cries out with excitement, "Daddy, Daddy, did you just see those two horses? There was a horse on another horses back. Dad can you believe that? What was that silly horse doing?" The adults in the car couldn't stop laughing. Poor Ellery was so adamant, she thought we didn't believe her. We didn't share with her why we couldn't stop snickering. We will save that lesson for another day!


Starting Early

Emmett: Checking out the ladies at the Roller Rink

...or as Brent said, maybe it was the bike.