Wednesday, January 22, 2014

The Year of the Couch Is Over

On New Year's Day, 2013, I was praying for a fresh start.  I wanted to wake up and find life to be bright and full of hope.  For things to be easier.  I quickly realized (see this post) that the difficult things in life aren't simply removed by a new date on the calendar.  In fact, sometimes when you think you're at the end of your rope you don't realize how long you'll actually be stuck there clinging.

Yet in this first month of 2014, I feel like I have turned a corner.  The darkness has been overcome.  2013 - my personal year of sitting on the couch has come to a close.  It is time to get up and start living again.

Ahhhh...hear me taking deep, joyful breaths.

Monday, April 29, 2013

Day 6 of this Crazy Diet

Ok - so this is hard.  

Why wonder Birdie hates the diet, the nutritionist and probably me at this point.  I'm hungry - yet not.  I'm irritable.  My head doesn't hurt per say but I feel like there is a vice from temple to temple.

And brain fog - let's just say, "Brain, what brain?"

Day 6, it got bad for me yesterday.  Birdie day 2.  Wonder how many more days until somebody feels fabulous.  How about just no more stomach aches for Birdie?

She woke up in severe pain this morning.  It hurt to stand up.  She's back in bed after her protoniz, carafate, benzyl cocktail.  She should sleep away the worst of it.  It's actually time to check in and see if she feels up to 8th period.  I did put a little cinnamon on her sweet potatoes last night.  She needed the carbs and she detests them.  Who knows if it was that or the pear/mango smoothie?

Stomach Pain

Birdie has been struggling for months.

Her stomach started hurting January 5th and hasn't let up yet.  Some moments have been awful.  Some have been hopeful.  At this point - it's just been long.  And frustrating.  Can you imagine how frustrating it is when your child is balled up in pain and the best thing you can do for her is sit beside her and hold her hand?

Let me be clear - that pretty much stinks as a health care plan.

I have learned more about the digestive track and heard how much is unknown about the digestive track than I ever thought I would.  And I'm also really sure I've barely cracked the book on this learning curve. Birdie is in that lucky group that all her tests come back normal. Except for a low white blood count (that no on ever worries about) and a major weight loss for someone so slim to begin with. Birdie's GI specialist at Children's has told us many times that 90% of stomach pain is never diagnosed. As in they don't know exactly why a stomach hurts so bad.  They just know it hurts.  The good news is they believe you that it hurts.  So they give you an acid reducer, Myralax, tell you to get up at a normal time, exercise, do fun things, go to school.

Ummm, did anyone listen to how bad this is?

She has pain 10 minutes after eating.  You can see her double over in pain as the food gets to her stomach. She is pale and listless - whether from the ongoing pain or what. She isn't herself. Her brothers keep asking me if I've noticed how pale she looks - like I could miss it. Mornings are awful.  She wakes in pain. It takes a while for that to ease. Nights from half and hour to an hour after dinner are awful. She wakes several times a night in pain. All that pain causes her to avoid eating, which leads to the weight loss. The doctor says she's constipated.  She goes everyday, but he always feels poop in her colon. When you have trouble eating and getting food in, it really messes up poop coming out. Her endoscopy showed beautiful tissue, but also found food in her stomach and small intestine.  She had eaten over 12 hours before. That led to an initial diagnosis of gastroparesis. The thought at that time in February was that it was caused by a virus and would eventually heal (although I kept reminding everyone that she was on a high dose antibiotic when this started). At that time she was starting to improve a small amount.

Further testing a few weeks later showed a perfect gallbladder on ultrasound and good motility with a barium x-ray series. Liquid flowed through the stomach and small intestine quickly and did not show any Chrons. Yet why all the pain??? At that point the doctor spoke of putting a feeding tube down Birdie's nose if she didn't start gaining weight.

Birdie currently has four medicines in her arsenal.  I must give them some credit. Periactin has been the life saver.  It has increased her hunger - imperative for her to regain the weight she loss. It helps block pain receptors between the gut and brain. This further enables her to eat.  It also makes her sleepy.  What a gift it is for her to sleep through the night without waking from pain.  Doesn't always work, but this is a great pill in my book.

However, even with these medicines, she still has daily constant pain and episodes of severe pain.  She can't even think about making it through a school day.  She's on homebound instruction and sometimes barely makes it through one of those sessions.  At this point her eighth grade year is slipping by as she tries to sleep through it.  She really wants to be back at school with friends again.  She wants to feel like talking to other kids and that she has the energy to walk from class to class.

Yet we're not getting there this way.

So I finally went to plan B.  Or maybe I should just call it step 2, because I think the solution to her problems will be a combined effort.

I called a holistic nutritionist.

And that is several posts in itself.

Tuesday, April 23, 2013

Master of Peace

Simon replied, "Master, we have been working all night long and caught nothing.  Yet if you say the word, I will let down the nets" (Luke 5:5).
Master - such power and peace in that word. I can sit and just rest in that word.  Simon is acknowledging Jesus' authority - not just his theological and God given authority but also a knowledge of fishing, something Simon has been doing not only all night, but his entire life.

Each time I read this verse, the word "master" pulls at my heart. It is a balm to my trials and worries. It's an ahh moment. I can rest in the knowledge that he is master, not me.

Simon's first sentence also makes me laugh. I can so relate. "Dude. We have been doing this ALL night. There's nothing to catch. Don't you know, we know how to fish."

Sometimes in life we are not prepared to listen to good advice. Sometimes we have heard it all and then some. With Jocie's illness, so many people have a suggestion. Have you tried gluten free? Have you had your air ducts cleaned? Have you tried a specialist? Is her specialist the best in the nation? Have you heard of probiotics?

And that's without reading the internet.

(And believe me - I so wish a probiotic pill or additive would clear all this up. She's been taking probiotics for years. I don't notice a difference at all. Yet, then I read there's so many different kids of probiotics. Aiyaya!!!)

I know they just want to help. Shoot - I am looking for an answer. But sometimes you just want to say - yes, I've tried it. It's NOT working. Just fix it.

Then there's Simon's second sentence. It matches with his acknowledgment of "Master." "Yet, if you say the word, I will let down the nets."

There is hope and reassurance in this verse.  Jesus is master of not just our spiritual lives but the whole package. He knows how to do our jobs so much better than we can imagine. He actually IS the love we share with others. It's the acknowledgment and release of control to Jesus that brings the peace I so desire.

Lord - when I am tired, frustrated, and out of my own options let me turn to you.  Lord, let me keep my eyes on you even before I run out of my own strength.  I am so limited.  You are so powerful.  Lord, be my peace and strength.  Amen.

Friday, April 19, 2013

Headed to Hogwarts!

Yesterday, John's welcome packet for WPI arrived.  He read the entire letter aloud to me.  His eyes were glistening and his voice shook just a tiny bit with excitement.  He then opened the welcome booklet.  A few pages in he looked up and said,

"This is like going to Hogwarts."

That is one of the best things I've heard in the last year.

I am filled with love and excitement and peace and joy for our dear boy. It assured us that this long road to a college decision ended where he dreamed. I don't think there was any other way John could have conveyed how happy and pleased he is with his decision and the road ahead. Chris burst out laughing with joy himself when I repeated the story to him. Oh, happy, happy day!

Sunday, April 14, 2013

Treasures from My Walks

The moss turns green first in the spring.

The largest pileated woodpecker I've ever seen.  It was huge I tell you. I'd say almost 18 inches long if not bigger.  I loved seeing it, and I sure am glad it was pecking on a dead tree in the woods rather than our eaves.

Busy, busy squirrels full of energy and spring excitement.

Three deer that stood and watched me this morning.

Snow flakes that fell on my nose and eye lashes the first day of spring break.

Seeing thousands of trout lilies.  I even saw some of the first blooms.

Another woman doing her yoga stretches by the large turn in the creek.

An eagle gliding above the park as I entered.

A man allowing his very nice dog to run free and occasionally chase the squirrels in the woods.  There was such beauty in their relationship and the freedom to let a dog run knowing she would return.

How spring exploded this week with this bout of unseasonably warm weather.  Cherry and pear trees are blooming, the grass has greened up, and leaves are quickly sprouting.

Jumping from rock to rock up the creek.

Taking what must be a deer trail off the walking path to the creek.  I found the hoof prints where the deer cross the creek and climb up the bank.  I found signs of geese and then finally in a curve that forms a large quiet pool, the geese.  I walked further and found a huge area of sand and pebbles.  Just ten yards from the path everyone walks each day is a totally different landscape never seen.

Sitting on a rock in the middle of the creek this morning, seeing the sun filter through a newly green tree branching across the creek and glitter off the water as it tumbled over rocks upstream.  From my perch I could look up and downstream as the creek gently curved in both direction and flowed over many other rocks.  I was overwhelmed by the beauty of rocks, water, moss, sunlight.   

Peace.  I have found peace.

Saturday, April 13, 2013

Who Knew?

Birdie is a writer.  She's always liked writing stories.  One of her favorites was her version of The Mitten by Jan Brett that she wrote and re-wrote starting at age 6.  But recently she shared what she's been writing for her own Fan Fiction page.

I read it with my mouth wide open.  She gets it.  She writes with great detail that brings you into the story.  Me - I'm just journalling.  She Writes.

Who knew that was there???

I shared this new discovery with her oldest brother.  He just took it in stride and said, "Yeah, you guys made some creative kids."

That we did.