Favorite Books --of a 9 year old boy

When he was little we began to fill the tiny child sized bookshelf.  He loved to be read to.  He loved to thumb through the colorful pages of his books on his own.

When he was an infant I read to him from the Bible often, and we read Paddington Bear.  When he was two I read him The Wind in the Willows.  He doesn't remember either.  As he grew we continued our Bible reading and we read aloud Charlotte's Web, Christie's Old Organ, The Little Woodchopper, The Hidden Rainbow.

We talked about them and great lessons grew out of those most wonderful stories.  Though for me those are sweet memories of time spent with my oldest child, he doesn't recall them at all, or the conversations we had.  Some he has since reread on his own.

The little bookshelf one day overflowed.  We filled another, larger, one.  We grew even more selective about what we allowed to occupy a precious space on the shelf.  We got rid of anything that could be classified as twaddle (n. books that are silly, foolish, trivial, nonsensical, insignificant).

Finding quality literature for little boys is not always easy, but it is certainly possible.  It does take time and effort to filter out that which is valuable from that which is merely popular.  The time and effort is well worth it...

...That small boy who used to lay with his head tucked on my shoulder, night after night, listening to story after story has just turned nine, his head now at my shoulder as he stands beside me.

As I type, my eye glances at his father's bookshelves, filled to overflowing.  Mine look much the same.  Apples don't fall far from the tree.  Our younger sons' following in the footsteps of their oldest brother.  They are apples from the same tree.

As Isaiah, the boy now nine, was nearing this birthday I asked him for a list.  A list of his 25 favorite books.  One's he has read all on his own.

He said, "Sure Mom!  I will put them in order of my favorite for you!"

I smiled.  He began.  Days passed and I asked, "How's that book list coming?"

"Well... Ok", he replied.  "I'm having trouble.  I think I'm done and then I think of another one I really liked.  I keep drawing arrows because I can't decide what should be first and what should be next!"

I told him to forget the order and just write down what he would consider his top 25 as of today.

He struggled, admitting that he's read so many great stories.  Stories that have stretched his comprehension, expanded his vocabulary, developed his spelling ability, and impacted his play.  Stories that have sparked a love of adventure, taught him about right from wrong, fact from fiction, and have clued him in to what life may have been like in times past.

Having just turned 9, here is his list...
The list he could narrow to only 27.

The Holy Bible


The Chronicle's of Narnia by C.S. Lewis


Alice's Adventures in Wonderland by Lewis Carroll


The Boxcar Children by Gertrude Chandler Warner
(The original series, volumes 1-19)


Rascal by Sterling North


The Swiss Family Robinson by Johann David Wyss

Buffalo Bill by Mary R. Davidson

Shiloh by Phyllis Reynolds Naylor

Justin Morgan Had a Horse by Marguerite Henry


Dolphin Adventure and Dolphin Treasure by Wayne Grover


Stone Fox by John Reynolds Gardiner


The Sugar Creek Gang by Paul Hutchens



On The Banks of Plum Creek by Laura Ingalls Wilder



The Littles by John Peterson


Homer Price by Robert McCloskey


Ben and Me by Robert W. Lawson


The Borrowers by Mary Norton


The Little Woodchopper by anon.


Ralph S. Mouse Collection by Beverly Cleary


The Sign of the Beaver by Elizabeth George Speare


Stuart Little by E.B. White



My Father's Dragon by Ruth Stiles Gannett


The Trumpet of the Swan by E.B. White


Peter Pan by J.M. Barrie


Black Beauty by Anna Sewell


The Little Pilgrims Progress by Helen Taylor


The Imagination Station by Paul McCusker (an Adventures in Odyssey series)

*We highly recommend offering children the original, unabridged versions of any book.  They are the author's original work and are undiluted.  They are often far richer than any abridged, or early reader versions.  See in the column on the right the article, "What is Twaddle" bookmarked on Delicious, for a better understanding.

Lurch. Herman Munster. Andre the Giant ... and me

Somewhere during the discovery process, the researching of medical journals and websites trying to make sense of a strange list of symptoms, the diagnosing of myself with the rare disease, acromegaly, I googled "Acromegaly" in Google Images.

Go ahead... I'll wait... you know you're curious...

Some of the first photos are of Andre the Giant, Fred Gwynn (Herman Munster), Carel Struyken (Lurch), and Richard Kiel (Jaws from the James Bond movies and Mr. Larson in Happy Gilmore), all of whom have/had acromegaly.  There was also an unfamiliar woman I didn't recognize who kept appearing.

I later learned that her name was Mary Ann Bevan, and she, too, suffered from acromegaly.  After her husbands death in 1914, she sought a way to earn a living to support herself and her four children.  She entered, and won, a "ugly woman" contest and was, as a result, hired by Coney Island and Ringling Bros. as a sideshow performer until her death in 1933.  To this day she is known and remembered as "The Ugliest Woman in the World".

One modern telling of Bevan's story quotes this,

"The reason she had this ugly appearance is because she had Acromegaly, a disease making you grow rapidly."

As a woman on the cusp of being officially diagnosed with such a rare disease as this, that is not a comforting statement.  It is also a bit humbling to be in such company, and to be able to relate to, and to empathize with, other "freaks of nature".

By the time I had surgery, I felt like Fiona (the green ogre from the Shrek films).  My face had grown so swollen I could see my cheeks and nose.  The day of surgery came and I spent a week on the neuro. floor of the hospital.  Somehow, patients and nurses would find their way to my room.

One lady in particular, a patient that the doctors wanted discharged because they could find nothing wrong with her, even though she was convinced she was dying, was inspecting me before I had even woken from the anesthesia, or rather, what felt like a drug induced coma.  She wanted every detail of my bizarre illness.

I'm not sure I knew my name at that moment, and I couldn't speak well through the tubes and the packing in my nostrils, but she was convinced that her daughter must have had what I had.  She came close to examine my face as I lay there.  She asked to see my feet.  I didn't have the energy to send her away (nor did I have the energy (or the desire) to remove the blanket and show her my feet!).  She asked if my brain still worked.  I tried not to laugh, because it hurt as I said, "I hope so!".

It was the circus.  I was the sideshow.  If I had ever wondered what it was like to be "that person", I wonder no more.

I've never been high maintenance.  I'm more  tom-boy than  girly-girl.  Vanity has never been my thing.  How thankful I am, and how thankful that God looks on the heart more than on the outward appearance.

But the LORD said to Samuel, “Do not look on his appearance or on the height of his stature, because I have rejected him. For the LORD sees not as man sees: man looks on the outward appearance, but the LORD looks on the heart.”

(1 Samuel 16:7 ESV)

Isn't that what matters most?  The heart? 

If we are to do all things in Jesus' name,  giving thanks to God the father through Him, then I assumed I had better put more effort into the condition of my heart than the size of my shoes.  I needed to learn to be thankful for the gift of illness.   

I needed to learn to give thanks in all circumstances, this one included.  To learn, again, to trust the Lord.  To learn, in case I didn't know already, that my identity is in Christ and not in my physical condition, not in my outward appearance, or in what others thought of me.

 “There is no greater mercy that I know of on earth than good health except it be sickness; and that has often been a greater mercy to me than health…

It is a good thing to be without a trouble; but it is a better thing to have a trouble, and know how to get grace enough to bear it.” ~Spurgeon

I don't yet know why God allowed for me to have this tumor, this ugly disease.  I know not why God chose to heal me.  The latter of which perplexes me more.

The tumor is gone, the disease is gone.

The effects of the disease remain, many of them irreversible, and will likely always stay and serve as a reminder of the year I had the excuse, "I have a brain tumor" for every dumb thing I said and did, but they will serve an even greater purpose.

The consequences of the disease are a constant reminder of the healing power of Christ, of his grace and mercy.

They are a reminder of what could have been, and perhaps more importantly, a reminder of what was, what is, and what should be.  They are a reminder of what is to come, as we will one day be made new.

Lastly, they are a reminder that I am one-in-a-million.  Just 3-4 people per million population are diagnosed each year with acromegaly.  Fewer than that are "biochemically cured" each year.

...Therefore, I'll assume that truly does make me one in a million.

Charm is deceptive, and beauty is fleeting,  

but a woman who fears the LORD is to be praised.

(Proverbs 31:30)

Acromegaly - God's Provision & Surgical Treatment

The continuation of Acromegaly - The {Self} Diagnosis.

Prior to having the diagnosis in hand, I had done my research.  I knew that surgery to remove the tumor was by far the best option for treatment.  The initial neuroendocrinologist I met with in Boston concurred.

Thankfully, a good friend of ours is a surgeon.  He had been working at Children's Hospital in Boston and had relocated to the Washington D.C. area just weeks prior to my having been diagnosed.  He said he would ask around and find the surgeon most highly qualified for the specific type of surgery I needed.

Shortly after, he contacted us with a name, and had already sent a letter to the surgeon on my behalf.  The surgeon most highly recommended was Dr. Edward Laws.  He was internationally known as the top pituitary tumor surgeon, having performed more than 5000 pituitary surgeries, more than any other surgeon in the world.  Given that my research had clearly shown that the outcome of this delicate surgery was highly dependent on the skill and experience of the surgeon, this was the guy I wanted.  Miraculously, he was in Boston.

It was then that we began to experience God's hand in what would be a surreal several months.

Within a few short weeks, in early December, I was able to meet with the surgeon thanks to the letter sent on my behalf.  He evaluated the MRI and the hormone levels, in conjunction with the symptoms.  He agreed that surgery was the best option.  We very much liked him and he was highly confident that surgery would be successful.  He wanted me scheduled for surgery right away.

At the time, Dan was essentially without a job and we feared not having health insurance to cover the surgery. With Christmas around the corner, we reluctantly scheduled surgery for mid-January.  In many ways, brain surgery was the least of our worries last year.  Christmas came and went.  There was no Christmas tree, there were no lights.  Just packed moving boxes, and memories of years past.  We didn't dare dream of what the years ahead may bring.  We inched forward, one day, one step at a time.

The day of surgery arrived.  We had brought the kids to my parents the day before, and I was up early making sure all the bills were paid and things were ready.  There was a knock at the door.  I asked Dan to get it, knowing that it was Brian, his good friend from college.  Dan hadn't wanted to ask anyone to be with him the day of surgery but I didn't want for him to be alone, especially should something have gone wrong.  I had emailed Brian, asking if he would come.  He agreed, and drove up from Connecticut to be at our house by 4am to surprise Dan and to travel with us in the snow to the hospital.  Dan was relieved to see his friend; his brother.  We arrived at the hospital at 5am, surgery was scheduled for 7am.

That snowy January morning was peaceful, albeit a bit sad.  We knew the surgery was necessary, and had been told plainly that without it I would likely die before age 50 of complications of the disease.  We knew the chances of a successful surgery were highly in our favor, but the surgery was not without great risk.  We had prayed that God's will be done.  We trusted that our sovereign God would do what was best, for his glory.  We knew that God's will may not have been for me to return home...

All prepped for surgery and waiting with Dan and Brian, Dan's friend Steve, a nurse, arrived.  He had gotten there early to surprise Dan and spent the day also.
The anesthesiologist arrived.  She gave her little speech about what she would do, and asked if I had concerns.  I simply told her, with a smile, that "I have an irrational fear of vomit", so to go ahead and give me the anti nausea medicine so as to prevent a reaction from the anesthesia.  Everyone laughed.  She commented on how calm we all seemed.  That was the last I remember, other than an intimidating glimpse of the operating room.

For the next hours, I underwent endoscopic transsphenoidal surgery (surgery performed through the nose and sphenoid sinus to reach the pituitary).

This part of the brain was among the hardest to reach, but recent technology allows the surgeon to perform this surgery with the use of microscopic lights, cameras and instruments inserted through the nose with great accuracy.  The surgeon watches what he's doing on a large TV, as he cuts through the sphenoid bone and accesses the tumor at the base of the brain.

In my case, the tumor was hanging on the carotid artery, attached also to the pituitary gland, just mere millimeters from the optic nerve.

As I was rolled into surgery, into the bright and sterile operating room I was praying that God would not allow the surgeon to sneeze.

When I awoke hours later in the recovery room, I was first thankful to be alive (God must have answered that one last prayer).  I opened my eyes for a brief moment, just long enough to realize I had not lost my eyesight.  Death and blindness the most obvious and immediate risks.

Someone told me as I was beginning to wake that the surgery was successful.  The surgeon had removed the tumor, and my pituitary gland was intact.  Great news, as that meant neither radiation nor hormone replacement therapy would be necessary.  I could hear Dan's voice.  I felt as though I'd been hit by a mack truck, yet was joy-filled for grace enough to live another day.

After a week in the hospital, I was discharged and instructed sternly to lift nothing heavier than a loaf of bread for eight weeks.  This proved slightly difficult with a very large 18 month old, and needing to pack for an upcoming move.

In the days that followed, the risk of diabetes insipidus, carotid artery damage, cerebral spinal fluid leak, meningitis, and excessive bleeding remained, but lessened with each passing week.

To be continued, once more...

Acromegaly - The {Self} Diagnosis

Yeah.  I know, right?  Acro-what!?

...The story of how I came to be diagnosed, in the fall of 2010, 
with a rare disease called acromegaly (ak-roh-MEG-uh-lee).

On our wedding day, now more than eleven years ago, I was athletic, petite, small-framed.  The white strappy sandals were a size 8.  The ring Dan placed on my finger a size 6.   I was 21.

At 23 I delivered our first child, 7lb. 6oz. Isaiah.

At 26 our second son, 6lb. 3oz. Elijah was born almost four weeks early.

With each pregnancy, or so it seemed, I needed new shoes. New shoes in bigger sizes.   I blamed the pregnancies, the extra weight, and the shoe companies for not keeping their sizes consistent!

At age 27 I had my size 6 wedding band cut off during a terrible experience with poison ivy.  I blamed the ivy and again the extra weight.

At 28 Dan had my engagement ring resized for me as a gift.  I hadn't been able to wear it in several years because it had become small.  It was resized to two full sizes larger than the original.

At 30, the engagement ring would no longer fit on my finger.   The child we were expecting was miscarried at 7 weeks.

With age 31 came the delivery of our third child.  An 11 pound infant born just five days past his due date.  Yes.  That does say 11 pounds!
Sweet Noah came into the world nearly the size of a toddler, delivered naturally and drug free just as his brothers were.  It was a perfect delivery, minus the hemorrhaging that followed.

Just a week or so before his birth I asked the midwife, "how big do you think he is?"  She responded, "well... I'd say no more than 8 pounds, but they've done studies that have concluded that the mother's guess is almost always the best guess".  I cringed and said, "Oh No!  He's HUGE!"  She laughed and sent me on my way.

Noone expected him to be as large as he was.  The midwife's only conclusion was that I must have had gestational diabetes even though I had passed the screening.  The midwife called a few weeks later asking it if would be OK that she have her picture taken with Noah at my six week post-delivery check up.  It was the largest baby she'd delivered in 30 plus years as a midwife.

That same year, I injured my knee walking in the park.  It swelled so badly it could not physically bend.  My leg was blue.  X-rays revealed that it was fine.  It was "just osteo-arthritis" according to my doctor.  "Take some vitamins" she said.  "Take vitamin D too as you're a bit deficient.  You are fine.  Just a busy homeschooling mom with three boys!"

I went home having filled a prescription to reduce the swelling, thinking "who at age 30 has arthritis this badly!?".

I returned to the doctor, insisting that it was necessary to pursue the cause of the strange symptoms.  The feet that had seemed to grow yet again, the aches and arthritis and the increasing fatigue, the constant sweating, muscle weakness, facial changes (cheek bones, hat size, tongue, teeth and jaw changes), constant swelling and water retention, increasing blood pressure, sleep apnea...
The eleven pound infant born the year prior was the major clue that something more was wrong.  It was not as simple as a vitamin deficiency.  I wasn't as old as I'd felt.  It was more than being a "busy mom".
Of all the lovely symptoms the fatigue was the worst.

Given that there is a family history of autoimmune disease, that seemed a logical place to start.  The doctor tested for anything she could think of that could cause fatigue.  She tested for lyme, she checked my thyroid function.

Everything came back negative.  She said, "what else?"  She ran a few more tests.  As I was leaving she said "if there's anything specific you find that we should test for, let me know!".  The second round of tests came back negative.

I began to make lists of all the odd symptoms.  Many I had initially excused as a result of my "old age", the result of an extra 40 pounds or so that had accumulated, or the result of pregnancy.

When the list seemed complete, I scoured the internet.  I called the doctor and requested one more round of tests.  I wanted my growth hormone levels tested and my cortisol as well.  She said, "those are fine!"  I asked how she knew and her response was, "Those are so rare!  You don't have a rare disease!"  I pushed. I said, "If you aren't comfortable running the tests I need to ask you to refer me to an endocrinologist".

Her response was, "I will.... but you are wasting his time".

She referred me to one in her practice and I met with him shortly after having made the appointment.  At the first visit I made a point to not tell him what I thought the cause of the symptoms to be, but simply handed him my long list of symptoms and said, "I feel old, fat and lazy".
He asked about my shoes.  My size 10 sneakers.  He asked about my wedding band.  The band that was now a size 8 and stuck on my finger.  He said he wanted me to head to the lab for some tests.

When he handed me the lab slip and I saw what he'd ordered, I asked, "couldn't two shoe sizes be caused by extra weight and three pregnancies?"  He smiled, knowing I knew what he was testing for, and responded in his chinese accent, "No.  Not that much!  This is very abnormal!"  The tests he had ordered were the tests I had requested of the initial doctor.

Several weeks later I returned for the results.  My growth hormone (GH) levels were elevated so a longer, more conclusive test was scheduled and a test was also done to check the Insulin-like Growth Factor 1 (IGF-1) levels.  The levels of both GH and IGF-1 were again quite elevated and an MRI revealed the cause, but because the doctor had only seen acromegaly once before in his life long career as an endocrinologist, he did not feel comfortable confirming the diagnosis.  I was sent to Boston.

The neuroendocrinologist in Boston confirmed what I already knew to be true.  I had acromegaly.  A rare disease in which a hormone producing adenoma secretes an overproduction of growth hormone causing excessive growth throughout the body.  When the tumor begins in childhood the result is gigantism.  In adulthood, when the bones have fused prior to the development of the tumor, the result is acromegaly.

In my case, as in most cases, the adenoma was found in the pituitary.  It was also attached to the carotid artery and next to the optic nerve at the base of the pituitary gland.  {The pituitary gland is an endocrine gland about the size of a pea at the base of the brain.}

In English, the cause of the disease, the cause of all of the symptoms, the cause of the bone and tissue growth, the cause of the 11lb. newborn (or rather the cause of gestational diabetes), the cause of the fatigue and muscle weakness, the possible cause of a miscarriage, was a brain tumor.

 ...To be continued...