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.

1.30.2011

Wintering in the South Fields



 A breathtaking herd of Elk are wintering in the South Fields.  The kids and I spent the weekend at my parents, and joined others from all over the valley to gaze at these amazing creatures lumbering around my parents and sister's properties.




 The Elk come seeking nourishment, their resources depleted in their own harsh environment.  I can relate.  It was a good respite.  Ellery enjoyed the distraction of cousins and grandparents and lots of food.



I had a rejuvenating and comforting telephone call with Brent's aunt, a family therapist.  She helped me sift through some of my emotions and provided me with some valuable insights on how best to interact with the children.  Not only do I benefit from her expertise but also her love and prayers.



I am also doing some research on my own into helping children, and the families they belong to, cope with chronic pain.  I always feel better when I am proactive.  Maybe part of my problem in coping has been I wasn't tapping the right resources yet or searching diligently enough on my own.  I don't like feeling helpless.  It is easy to feel helpless when so many things are out of my control.  But little things like doing my own research and learning new parenting strategies specific to my children,  I can feel them starting to empower and strengthen me.  A fresh pasture to nourish in.

1.26.2011

Cast Your Burden

My sweet little Emmett using his vest.  The percussion vest helps the children move the mucus out of their lungs.  It looks so benign in this picture. 

The smiles from this little man are one of my small slivers of light right now.

I think in my life I sincerely thought, and professed, to understand things I really had no clue about.  Life keeps teaching me how much I don't know.  I guess that is one thing I do know.  Maybe I have mentioned this before? My ignorance seems to be a glaring reality I am consistently confronted with.

What I am trying to understand is what do the scriptures truly mean when they say, "To cast your burden on the Lord?"  

What does that literally mean for me, when everyday I am the one who has to carry this load and raise these children?  And I am so inept.  I just have no idea what to do.  They are so young.  So malleable.  Mother's make a difference in the lives of their children.  I just don't seem to know how to be the right mother for my children.

I don't think the Lord is unfair.  I never worry about justice or equality.  I try not to compare my crosses to anyone else's, because in honestly probably most people look at my little family and think we are on some sort of cake walk.  It is hard to really know what is going on in people's lives.  


video
Emmett wanted to video himself, so he could hear his voice.  This gives you an idea of how vigorous this shaking actually is.  Don't be disturbed, but to be honest I started bawling the first time I saw a child having this treatment.


I am grateful my battle is over of finding out how and why my children's health is different.  That was an enormous hurdle.  Unfortunately, the hurdles just keep getting bigger.  I don't trouble myself with why, only how.  How should I move forward?  How can I do this?

We are taking the family away for awhile.  Somewhere warm and healing.  If it works, next year it will be much longer.  I always try to be elusive about when we leave, for privacy, and since I am so erratic with my blogging anyway it will be hard to know when we are away...

I feel like this trip is a final lifeline.  Our family needs some emotional and physical healing.  We are blessed to be able to have the means to try this.  These are hard times and many can not.  The children and I are trying to play Pollyanna's "glad game."

Ellery just can't seem to fight off her lung infection (an x-ray last week at the pulmonologist confirmed an infection), severe ear pain.  She is having horrible side effects to her antibiotics despite huge doses of probiotics.  She can't walk because of the cramping.  We have 3 days left.  The only thing I can think to be glad about is after this horrible cramping ends maybe she will feel better and her ears will feel more manageable.

1.20.2011

The Minute to Win It Party


Way to go Derald on your network television debut!


 It was a little loud, and a little wild, but we had a great time celebrating and enjoying the suspense with Derald and a bunch of his friends.  Mom wasn't too bad either.

1.18.2011

Minute to Win It

If you are bored, tomorrow night, my always eligible little brother will be on primetime network television.

You can catch him as the dashing contestant on Minute to Win It on NBC.  I think it airs at 7pm MST.

My mom also makes her primetime debut.  And he wants everyone to know for the record, they picked out his wardrobe.

Here is the link for the trailer.

It's all been top secret.  So the family finds out tomorrow if he won anything.
Ellery has been in excruciating ear pain almost 24 hours a day for nearly 9 days straight.  She can sleep only 5 or 6 hours in a 24 hour period.  She spends most hours crying and pleading for someone, usually me, to take this horrible pain away.  Often it only subsists for an hour or two on any given day, with some days a little worse and some a little better.

We did CT scan of her ears/head yesterday and learned that her mastoid bone has become almost solid in response to years of severe middle ear infections.  A normal mastoid bone is full of air sacs which help relieve pressure in your ears and sinuses.  Because Ellery's bone is solid now, it could be the cause of her extreme pain, anytime she has fluid in her tubes (which is always).

She learned some techniques yesterday to help relieve some of the pressure from her eustachian tubes, and they seemed to have helped a little as she had a great afternoon and a relatively good night.  By far the best in a week and a half.  We are hoping to avoid mastoid surgery for her.

I am hopeful she can become functional again, and that yesterday was not just a small reprieve but we actually turned a corner.  She sees her lung doctor tomorrow, to assure she is not suffering from any lung exacerbations, and we are having some family counseling on Friday to help us all with the anxiety and pain.

We may opt to have her tubes removed.  Maybe they are disrupting a pressure gradient.  As they do not drain, they don't provide her any relief.  (Emmett and Berkeley's tubes drain daily.  I spend 20 minutes 1-3x a day pulling mucus from their ears.  Annoying, but it keeps them from being in pain, and allows them to hear.)

Brent was out of town last week from Wednesday through late Saturday night.  It was arguably the hardest 4 days of my life.  Living with a child in constant severe pain is heart wrenching and exhausting.  I can't describe it but maybe you know.  Maybe you've had that feeling where your heart physically hurts, aches from sadness.   Her siblings feel the effects as well.  Each in different ways.

And yet during this time I have my angel friends watching over me.  A sister in law who came to my door early Saturday morning when Ellery hadn't fallen asleep until 3:45 am, with bagels.  She left.  And then showed up 10 minutes later and took Callista and Emmett for the day.  Amanda who let my children play for 5 hours at her house and offered more.   She even kept Ellery distracted and in minimal pain.  Marie, over in an instant to watch the children while I made a pharmacy run.  Jill who showed up at my house at 6 am so I could go for a run, I ended up not being able to leave Ellery, but she was there. I am certain I am forgetting someone but I am still in a bit of a delirium.

Thank you.

1.17.2011

A Small Moment


I was so grateful for a peaceful moment today.  A moment to look out my back window and see this.  And then another moment to appreciate it.  It was a tender mercy from God.


My little Ellery had a peaceful afternoon without pain.  I am praying it lasts.  Her doctors are praying it lasts.  We have all been praying for inspiration.  It may have come today.  We will see what the night brings. I'm not sure I have it in me to repeat the last 8 days and 9 nights again.  I felt my heart being wrenched.  Today the grip loosened, and I could breathe.  We all could.

1.12.2011

Who's got Tonsils?

video

Guess who this audio is?

Callista!  She can snore with the best of them.  When she heard this, she told me she was going to plug her nose when she sleeps.

1.10.2011

First Solids



At 7 months I finally broke down and gave her solid food.  She devours it.  I guess she was ready.

Was this the same baby I thought had all the hair?  What happened?  It hasn't grown yet.  Sigh.

1.07.2011

Blowing out the Candles


Thumbs up on my first Yellow Cake!  Thumbs down on the La Jolla Groves restaurant.  Oh well.

1.06.2011

Flowers, Friends and Food


Brent gave me flowers once a week for six months when we started dating.  I am so lucky to have him.  He spoils me enough to make me feel pampered, but not too much, because he knows I don't like spending money or feeling like I am high maintenance.  I'm not into jewelry or fancy furniture, but I love a nice bike, a great yoga mat and of course flowers.

And who can beat 5 running girlfriends who show up at my house with amazing food galore for a celebratory luncheon.  They are as thoughtful and sweet as they are fast.  And they are really fast!

And... we have a babysitter tonight.  We are going out to dinner for the first time in a year.


Birthdays aren't so bad.  Thirty-three has got to be easier than 32.

...ps  it makes me feel guilty all these nice people wishing me happy birthday on facebook.  i should probably check it more than every 4 months or so, and I could be one of those nice people too.  thank you for all the b-day wishes.