The Battle Burdened Mother

You mom's of special needs kids know what it is to fight.  You fought the doctors to speed up diagnosis, you fought the insurance company to pay for therapy, you fought cross town traffic to get to therapy, you fought the pharmacy to accurately fill prescriptions, and you fought the schools to just get fair treatment.  It goes completely against what we are told to do in Ephesians.

"Be completely humble and gentle; be patient, bearing with one another in love."  Ephesians 4:2

So-called "normal" kids have the "normal" path laid out for them.  For our kids who are forging a path against the grain because of their disabilities or differences, we have to forge for them, so they don't have to do all the fighting.

I have no doubt in my mind that our special needs children were placed in our lives, at this time, in this place for us to raise for His purpose.  And I don't doubt that we are to insist that others see the humanity in our children.  Neither do I question if we are supposed to push and push and push and not take no for an answer when we know that is the wrong answer for our kids.  But I see the affects of the near constant up hill struggle I have faced with my kids.  In my marriage.

At the end of a long day, sitting on the couch with a cup of peppermint tea while the house is quiet and I should be calm, and I appear to be calm, just a routine question from my husband can wake the growling dragon that has been tethered inside me all day.  It is my choice whether or not to unleash it on him.

After years of enduring my wrath despite having done nothing to cause it, I have begun telling my husband, "I'm not mad at you, I'm mad near you."  I know I try my best not to offend the doctors I am frustrated with, not to shout at the insurance company in front of the children, not to show my disappointment in therapists my children love.  But I am human.  These aches and pains of raising a special needs child have to come out some time.  But not at my husband.  He loves my kids almost as much as I do (you know noone loves your kids like you do).  And he grieves for them like I do, and he longs to fix everything, maybe even more than I do.

"As a prisoner for the Lord, then, I urge you to live a life worthy of the calling you have received."  Ephesians 4:1

Ouch.  A reminder of that gift of eternal life, that free gift given by Christ for us.  How much hurt was in God's heart over the injustice done to His son?  More than is in ours I bet.  After a day of fighting for our children, for the justice we feel they deserve, but was denied our Savior, God tells us to live a life worthy of this calling.  This calling as a daughter of the risen King.  This calling as a mother of a handicapped child.  This calling as the wife of the man who is bearing this burden in his own way - a way that we don't  understand.  We can choose to curtail that growling beast at the end of the day.  We can find ways to let out our frustrations that don't hurt the ones that we hold dear.  I usually start with prayer, follow up with the Word, and end holding hands with my beloved.  I bet some vigorous exercise helps some of you.  I used to cry in the shower.  Sounds sad, but it helped.  Find something.  Preferably something that draws you two together, not something that puts you at opposite ends of the boxing ring.

 "Be completely humble and gentle; be patient, bearing with one another in love."  Ephesians 4:2

Genetic Testing

I have a friend with nine kids. She trusts that the Lord will 'close her womb' when He is ready for her to stop having kids. I wish I could be that trusting of the Lord's vision for my family. We really do want a fourth, but given that we already have three kids with epilepsy, the odds on having one without are pretty slim. And woe be to the normal child born into our family. I'm guessing an abnormally heavy burden would be on his/her heart as s/he grows up to care for siblings who need it.

I do believe He intentionally put my kids together, either to be with each other, or to be raised by us. When I was pregnant with the third, we only knew that the eldest child had epilepsy. His, was idiopathic, possibly caused by a birth injury or low oxygen during labor. We had no reason to think that the other kids would have the same problem. I didn't have the amnio or Chorionic Villus Sampling, more because I was concerned about the risks than having a strong opinion about the results. My doctors pushed, because I was older, and my father is adopted. I think doctors fear the unknown. I knew the Lord had created these children and I had no cause to worry.

Our second child was diagnosed with epilepsy when she was two. The doctor couldn't believe it. He did another EEG. The shocking part was that her EEG pattern was displaying a type of brainwave that indicated a genetic type of epilepsy. So I have one with epilepsy of unknown cause, and one with an apparently genetic type. All eyes went straight to the baby.

You know how the EEG works, right? You go to a clinic or hospital, get your head wired up and lay in a room for 30 to 60 minutes while your brain waves are recorded. Sometimes you go in sleep deprived, sometimes they ask you to hyperventilate, sometimes they flash strobe lights at you. The technicians are trying to elicit a seizure or seizure response so the patterns can be recorded. It's like taking wildlife photos from inside your house. The cardinals may be outside, but unless it flys by the window while you are holding the camera, you won't get the shot.

Same thing with an EEG, if nothing happens during the recording of the brain waves, the doctor might not have any evidence to help determine if you have epilepsy, much less, what kind. I've been told that there is about a 50/50 chance of catching abnormal brain waves in an EEG. A negative EEG doesn't necessarily mean the patient doesn't have epilepsy.

So, now we have one child with one type of brain wave, a second child with fantastic luck on the EEG recording a different type of abnormal brain wave, and time comes to check the baby. Lo and behold she has the same type of pattern as the second child. It looks like they both have the same type of genetically inherited epilepsy. While the first child dodged the bullet on that, he still developed epilepsy anyway. So of course the recommendation is genetic testing. Why, that would answer so many questions, wouldn't it. Wouldn't it?

After extensive discussions with our very understanding and eager doctor, he agreed that no matter what the genetic testing showed, it wouldn't change the prognosis or treatment of the kids. But I know how I feel about having more kids. I feel broken and sad, and know that I won't have more because I am afraid of having more children with a chronic ailment. As much as I love and adore these people, as hard as I try to not let them feel different, I am still fearful of having more. I don't want to saddle my kids with that knowledge until they are ready to handle it. And what if they choose to not want that information. You can't just put the toothpaste back in the tube, right? So we have made the decision to not have genetic testing on the kids. When they are grown, when they are married, maybe they will make those choices for themselves. But I'm not going to put another label on my kids. Not if it doesn't help heal, help treat, help cure. I just don't see anything helpful about it now.

Vocab of The Hound of the Baskervilles

In the previous post, I gave an overview for the homeschool mom of The Hound of the Baskervilles by Sir Arthur Conan Doyle.  As promised, vocab by chapter.  In the vocab list for The Call of the Canyon, I expected my son will cover one chapter every three days, but the chapters in this volume are much smaller, so I combine two chapters of vocabulary this way:

Day 1: Look up vocabulary for Chapter One and Two (neatness counts!)
Day 2: Read Chapter One and Two
Day 3: Write 15 sentences with selected vocabulary words from Day One
Day 4: Look up vocabulary for Chapter Three and Four
Day 5: so on and so forth until the book is complete, five weeks later 

As in The Call of the Canyon, there is a reference to "making love" which in this era meant not much more than sitting on a park bench cooing like love birds.  You might want to go over this with your child before s/he hits that part.  Another lovely opportunity to discuss what is acceptable behavior in our teens, and what our culture brainwashes them into believing is normal.

Chapters One and Two
Bulbous   Ferrule   Piqued   Convex   Erroneous   Fallacies   Inference   Amiable   Astutely   Fulsome   Dexterity   Forgery   Monograph   Resignation   Grievously   Carouse   Betwixt   Wench   Anon   Bemused   Squires   Twain   Amiability   Scion   Bewailing   Inquest   Eccentric   Corroborated   Cardiac   Organic   Prosaic   Tenant   Impassive   Indorse   Untenanted   Sparsely   Trivial   Chimerical 

Chapters Three and Four
Impenetrable  Realm   Spectral   Hitherto   Diabolical   Vestry   Flippantly   Obliged   Congenial   Seclusion   Immaterial   Acrid   Convict   Singular   Bewildering   Inquest   Coherent   Baronet   Pugnacious   Expedient   Cajoled   Tariff   Utmost   Speculation   Trifles   Vengeance     Languid   Loiterers   Benevolent   Wily   Sauntering   Reverence 


Chapters Five and Six
Articulate   Conjunction   Ample   Insignificant   Venerable   Entailed   Endeavor   Besmirched   Proposition   Wrung   Sovereign   Rueful   Conjectured   Audacious   Injunctions   Bias   Imprudent   Exalted      Comrade   Bramble   Waning   Equestrian   Ferocity   Wanton   Commutation   Atrocious   Sombre  Discern   Balustrade   Dias   Copses   Melancholy 

Chapters Seven and Eight
Efface   Pallid   Erroneous   Propitious   Excursion   Credulous   Placid   Reproved   Cordial   Grazier   Interminable   Irretrievably   Tinged   Irresolution   Induce   Monoliths   Scarred   Antiquarian   Disapprobation   Choleric   Furtive   Cunning   Surmise   Conjecture   Concealment   Belated   Unmitigated   Conscientious   Incriminating   Personification


Chapters Nine and Ten
Reproached   Gesticulated   Haughty   Peremptory   Displeasure   Rueful   Brusquely   Conjectures   Upshot   Cultivating   Floundering   Agitation   Warders   Unmitigated   Crevice   Vile   Tor   Indelibly   Abortive   Spectral   Distrait   Abetting   Faculties   Atone   Deluged   Sodden   Morass   Pittance   Connoisseur   Cavalier

Chapters Eleven and Twelve
Delicacy   Retiring   Almoner   Torrent   Rendezvous   Inconclusive   Incessant  Abhor   Reticent   Magnates   Warren   Effigy   Incredulity   Urchin   Toiling   Furtive   Indignation   Decanter   Dissuading   Incisive   Contrived   Tenacity   Vehemence   Piteous   Precipitous   Paroxysm   Ruffianly   Roisterer (in the book as Roysterer)   Afoot   Juncture

Chapters Thirteen and Fourteen
Perceptibly   Recital   Dictated   Precipice   Sensational   Analogous   Reverential   Loath   Fulfillment   Void   Hampered   Halted   Admirable   Ambush   Serrated   Inexorably   Inert   Hackles   Delirious   Vulnerable   Insensible   Feeble   Endangered   Doddering   Defiant   Baulk   Swathed   Weal   Mottled   Hale  Peninsula   Quagmires   Miasmatic   Undulations   Perilous   Morass   Fathomed  

Chapter Fifteen
Atrocious   Barrister   Purloined   Consumptive   Disrepute   Infamy   Entomology   Ingenious   Finesse   Diabolical   Penetrate   Coincide   Specious   Infernal   Lair   Accomplice   Grotesque   Expedient   Audacity   Instructive   Elucidate   Waning   Confidant   Lisping   Reproach   Implicating   Fidelity 

The Hound of the Baskervilles

If you have read some of my other posts you know I have been working hard at compiling my 9th (10th?) grade son's literature curriculum for the year.  Most packaged curriculums only offer snippets of books.  I'd rather my kids read really great books in their entirety!  In my mind, the purpose of good literature is to transport the reader, to give the reader a new perspective to interpret his own life, and to spend time in imagination.

When I was a young student, I loved being in the middle of a book, and going to bed at night and dreaming about what those characters would do.  It sparks creativity.  If you only read a portion of a book, how can you develop a sense of the characters enough to imagine their responses, or to recreate their world in your head?

Also, it seems that most homeschool recommendations by grade level far exceed the grade level a corresponding public school student.  My son has only been out of public school three years, he's not reading at a college level yet.  I had to select books for him that he could understand and enjoy, not that he would struggle to get through and glare at me between chapters, which brings me to my next selection for this year.

I started The Scarlet Letter and Wuthering Heights earlier this summer, but they proved to be a little too Victorian and wordy.  You know how those first few chapters are spent trying to just get used to the rhythm of the language?  Well, not so with Sir Arthur Conan Doyle's The Hound of the Baskervilles (found on gutenberg.org).  In fact, I think that having completed that book, it might be a good stepping off point into other more challenging Victorian works. We'll see how it goes.

The language and style in this novel was about on par with Burnett's The Secret Garden, but the material was more mature, and there were more words that may not be known.  I'll provide a vocab list separately.  It was a fun run through the moor with enough twists and turns to keep the reader occupied without getting too confused.

I will say, for you Christian Homeschooling moms (of which I am, too) there may be some concern about the "man of science" position of Sherlock Holmes.  This is the first Holmes book I have read, and I didn't find it to discount faith at all.  The premise is that Holmes is presented with what sounds like a legend, an evil hound patrolling the moor at night to bring down the Baskerville empire.   Holmes discounts anything he can't quantify, thereby drawing conclusions from evidence not rumor.  Not a bad object lesson for teens in my opinion. 

In fact, I found a few quotes I thought opened some doors for conversation in morality and faith, like:
"The world is full of obvious things which nobody by any chance ever observes", which to my mind brings up the obviousness of creation and nature itself and the denial by so many of a singular creator.
and
"The work to a man of my temperament  was mechanical and uninteresting, but the privilege of living with youth, of helping to mold those young minds, and of impressing them with one's own character and ideals was very dear to me", spoken by a former teacher.  Really?  Is that the job of an educator?  To impress them with the teacher's character and ideals?  Or to impress them with the textbook writer's ideals?  Or shall we be impressing Christ's own ideals on our children?
and the very thought provoking:
"A lucky long shot of my revolver might have crippled him, but I had brought it only to defend myself if attacked and not to shoot an unarmed man who was running away."  This statement about pursing a known murderer, an escaped convict, yet Holmes would only shoot him in self defense, not to take him down like an animal on the hunt.  Interesting perspective.  You can go so many different ways on this to share your family's perspective on protection of the family versus protection of the whole.  The rights of man, the guilt of us all.  So much you can do with that little thought.

My daughter is asking for some computer time, so I will update with vocabulary later.  It wasn't as thick in challenging words as The Call of the Canyon, so I may do this book before that one this year.


Who am I?  Find out on my bio page.

Does Your Child's Disability Define Them?

I hear from a lot of mothers, this claim that they won't let their child's disability define who they are. What really surprises me is how many Christian mothers tell me this. Children with congenital disabilities or deformities. "I wont LET this define my child". Why not?

I know I have the unique perspective of a mother whose three children were all born with a congenital disability. (I won't even go into the term "disability" here.) It is impossible for me to NOT see that these three little people were put together in this time and this place for His glory. If you only have one, maybe you feel it was a fluke. Maybe you think you are being tested or you screwed something up. But when you have three as I do, you get to see there is purpose behind this arrangement.

But to you, mother of two "normal" healthy children and the one with all the hardships and challenges, physical therapy, occupational therapy, speech therapy, medication once, twice, three times a day, to you my dear, I know you may feel something went terribly amiss when your child was created. I am here to tell you no.it.did.not.

I crochet, it is kind of a fog clearing thing. When everything is confusing, I can battle with a pattern that makes no sense, stick with it, work through it, and get to the result I thought I was never going to find. I wish life worked that way. So of course, Psalm 139 is a favorite of mine. It says God knit us together in our mother's womb. He knew me before my mother did and He knew my child before I did. He made my child the way He wanted. Migraine, Epilepsy, ODD, speech delays, all of these things He knew before my kids were even born! He knew what He was doing, and I can trust that.

So I come back around to being defined by a disability. If God created your child the way he is and wanted him to be that way, why would we want to fight against it? I'm not saying our kids shouldn't work up to their potential, and get every opportunity they deserve, but epilepsy makes my kids creative. They see the world so very differently from other people who have just one perspective. Epilepsy makes my kids compassionate. They are so loving and generous to people in need, people hurting, people scared, because they know how that feels. Epilepsy makes my kids introspective, and a well examined life is lived so much more fully.

We live in a world full of fake beauty, false success and empty riches. People living their lives to acquire and accumulate often don't see how empty their lives are until the end. Facing people, children especially, with disabilities brings a humanity to overachieving automatons and hopefully shines a light on what is worthy, what is valuable, what is important in life.

Bless your children, and bless you, mom of the handicapped child. You are doing important work for your entire community, not just for your own family. See why I care at my bio page.

From the Garden

I had lots of tomatoes sitting around the house to somehow go with the risotto I made tonight.

My dad bought some hydroponic Santorini tomatoes to go with our Christmas dinner last year. I liked them so much I tried planting the seeds. In December.

Now, July, it is the biggest plant in my yard. I kept it inside, stunted to about two feet, until Good Friday. These plants are the most humongous I have ever planted. And productive? Oh, yes!

A little basil, balsamic and pepper, and I was a very happy momma.

Vocab of The Call of the Canyon

I'm sure this is fascinating reading for the random visitor.  But for you homeschool moms out there like me compiling your own work, a la Charlotte Mason here is my selection of vocabulary for The Call of the Canyon by Zane Grey (available for free on Gutenberg.org).  Here is how this will play out in my lessons:

Day 1: Look up vocabulary for Chapter One (neatness counts!)
Day 2: Read Chapter One
Day 3: Write 15 sentences with selected vocabulary words from Day One
Day 4: Look up vocabulary for Chapter Two
Day 5: so on and so forth until the book is complete, six weeks later.

I don't usually do questions, we have conversations about the book.  I occasionally use questions as a jumping off point to write some argumentative narrative.  I may add those questions in a later post.  I'm thinking of using this as a place to start conversations about marriage and cover biblical responsibilities. 


For now, vocabulary:

Chapter One
Aloofness   Myriad   Blanched   Strife   Pealing   Enveloped   Perplexed   Wretch   Induce   Degradation   Looming   Squalid   Uncouth   Perusal   Blight   Blunting   Ponder   Adjoining   Transatlantic   Enterprise   Abeyance   Vigilant   Crass   Quaint   Consumptive   Vista   Crude   Espied   Incredulously   Dispelled   Languid   Affronted   Soliciting   Patronage   Discordant   Phonograph   Laconic   Spigot    Torrent   Intermittent   Partake   Squalid   Sordid   Dilapidated   Apathetic   Incalculably 

Chapter Two
Abated   Gorge   Intimation   Glades   Bisected   Eddying   Unscalable   Singular   Disengage   Fagged   Lithe   Drawling   Antagonistically   Divest   Solicitous   Wan   Tenderfeet   Cardinally    Squalor   Affronting   Juncture   Emanate   Twinge   Conducted   Assailed  Queried   Billets   Suffice   Permeated   Fissure   Strained   Dispelled   Manifestly   Pallid   Inarticulate   Disheveled   Requisite  Audacious  Pirouetting   Coquette   Prevailing   Affronted   Proffered   Reticent   Confide   Chiseled    Unplumbed   Betrothal  Verge   Opaque   Tumult   Intangible  

Chapter Three
Primitive   Waxing   Intimation   Susceptibility   Privation   Assuredly   Donned   Loquacious   Gnarled   Rampart   Desecrating   Potent   Taunted   Daunt   Precluded   Scrupulously   Boughs   Inscrutable   Verdure   Constricted   Scudding   Averse   Usurping   Instructive   Imperiously   Arraigned   Ravenous  

Chapter Four
Propitious   Deviation   Feigned   Mollycoddle   Bestrode   Alacrity   Manifested   Acute   Aspect   Sparsely   Somber   Mirth   Resentment   Hobbling   Disclosing   Aghast   Assimilation   Endeavored   Ludicrous   Enamored   Eloquently   Petrifaction   Derived   Genially   Privation   Adjured   Mitigating   Eminence   Effulgence   Ethereal   Coalescing   Cavalcade   Plight   Pommel   Thwarted   Abject 


Chapter Five
Acrid   Insatiable   Hombre   Laconically   Inimical   Listless   Divine   Expulsion   Furtive   Scant   Verdure   Entail   Antipathy   Barren   Confounded   Illimitable   Annihilating   Infinitude   Succumbing   Denuded   Lenient   Baser   Motliest   Stolid

Chapter Six  
Sloughing   Ignoble   Tumultuous   Impassive   Pathos   Epithet   Cynosure   Inscrutable   Repose   Elude   Soliloquized   Repudiation   Laconically   Enigmatically   Antitheses   Barren   Verily   Contrarily   Rift   Oblivion   Inarticulate   Deceit 

Chapter Seven
Discontent   Germinate   Intimations   Conscientiously   Query   Surety   Inhibited   Sylvan   Virility   Dissociate   Blighting   Unalterable   Inscrutable   Presaged   Boggy   Mien   Fastidious   Ignominy  Miasmas   Shirked   Desultory   Callous   Fidelity   Transfigured   Actuated   Impondering   Articulation   Abased   Strife 

Chapter Eight
Poignant   Firmament   Lambent   Transient   Recurrent   Tedious  Palatial   Prodigal   Throng   Devitalized   Labyrinthine   Harmonize   Diverting   Inaugurated   Fastidious   Gyrated   Disparagingly   Valiant   Indolent   Effete   Imbibed   Thronging   Congenial 

Chapter Nine
Sentimentalist   Melancholic   Inexorable   Arraignment   Erroneous   Begetting   Knave   Reciprocated   Aghast   Farcical   Frivolous   Guise   Sentiment   Engendered   Perusal   Pathos   Oblations   Discordantly  Poignant   Subterfuge   Laboriously   Rancorous 

Chapter Ten
Edifice   Dissimulation   Contempt   Abasement   Commensurate   Dalliance   Portent   Inimical   Vaunted   Discordant   Dubiously   Dawdle   Aloof   Morbid   Insidiously   Havoc   Ostracized   Trenchant  Prattled  Incalculable  Derided  

Chapter Eleven
Innumerable   Pinyons   Escarpments   Precipitous   Abeyance   Mesas   Rending   Shackles   Gesticulation   Staccato   Loath   Denizens   Abnegation   Infinitesimal  Guileless

Chapter Twelve
Augmented  Coalesced   Maelstrom   Aberration   Irreparable   Insidious  Cataclysm   Sublimity  Inured   Maladies   Strenuous  Garments   Pondering   Motley   Fortitude