Posts

Holding My Breath

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This post has nothing to do with waiting on a hurricane.  The East Coast is certainly holding its breath right now and I pray that it won't come our way.  But for me, since the beginning of August, I have been holding my emotional breath, waiting to hear the results of my son's genetic testing.  I was told at that visit that he probably did not have mitochondrial disease because he was doing so well compared to what he should be doing; simply put, his previous degenerative diagnosis was wrong.  And genetic testing has progressed exponentially in the past 10 years, so an update was due. After three months, no answer.  After four months, I decided to call.  No news is good news is not the case when waiting on results like these.  As it turns out the report had just come across the doctor's desk which I had mistakenly called directly and so got to hear the results firsthand. My 21 year old son with development delay, significant speech deficit, digital arthrogryposis (con

What's Behind Pajama Day--

Friday was pajama day at our home school.   We usually don't do that.  My boys never enjoyed pajama day when they were attending school, and I don't really understand the premise. I am always in a better mood if I am prepared for the day, not looking like I never wanted it to start in the first place.  But last Friday was different.  I was tired.  So very tired.  I had a headache, and I simply didn't want to face the day.  It was raining for the fourth day in a row, so the dreariness made it even more conducive to a day of "doing school" from the master bedroom. We started with breakfast in bed, then did everything that I help with from the master bed.  I arose only to prepare a teapot to replenish my hot tea supply. The boys, however, got dressed; they did their work online; they played outside; they ate lunch in the kitchen, but I just couldn't muster the wherewithal to leave the bed. Was it just the weather, the beginnings of a migraine?  No, that usu

Christmas Spirit

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gift-giving This year Christmas has been different for me.  For several of my friends who have lost loved ones this year, this Christmas will be different in a more profound way.  For me, it's just the death of Santa.  My boys no longer pretend to believe in Santa, and I have only bought two toys for each of them under $20 each.  No Legos, no showstopping gifts, just twelve days of gift-giving things we "need" like a new belt or better fitting bike helmet, a jacket for school or an alarm clock.  It has been fun to get small thoughtful gifts that they have mentioned they need--or knowing what they like to do--would enjoy having: a tape measure, a better pencil sharpener, a wireless shower speaker.  It has given us time to appreciate each gift and has helped keep the focus on Jesus, the greatest gift. song-singing Another new tradition I have enjoyed this year is our couch time devotional  Hallelujah: A Journey Through Advent with  Handel's Messiah . We have

Swallowed up by Life

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Being swallowed up by something has a negative connotation for me.  Being overwhelmed or devoured so that you lose control or are at the mercy of something else: think Jonah and the whale.  The busy-ness of back to school or a particularly busy time at work can certainly swallow us up.  We can be swallowed up by a storm, media-induced or meteorological. We can be swallowed up by grief.  For this stay-at-home, home-educating, mom of an exceptional needs son, my quotidian mind-numbing cares sometimes swallow me whole.  my peaceful place this summer But I have been reading 2nd Corinthians and Paul's use of the phrase, "swallowed up by life" intrigues me. The context is that though we don't want to be rid of this earthly body, we desire to be further clothed in the righteousness of Christ so that what is " mortal may be swallowed up by life " (5:4b).  That sounds a little scary to me.  However, Paul goes on to say that the one who prepared us for this ve

To Fully Attend

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"To attend" can mean to be present, to deal with, to occur alongside.  Often I am concerned with the first definition, being fully present each day so that I can better teach my children as a profitable moment arises or giving my undivided attention to the particular moment which enables me to see beyond myself to the needs of others.  But tonight as I am digesting two days of instruction on education after our Classical Conversations practicum and one day of training in PECS (Picture Exchange Communication System), a system of communication for those with expressive disorders, I am thinking of the sense in which attend means to listen .  I listen to my children differently on different days .  Sometimes it takes much concentration and focus to listen to the story of an imaginary character and his numerous escapades.  Other times, I delight in the creative details. Sometimes I hear the frustration and pain behind the complaint.  Other times, I am annoyed by the complain

"Noche Oscura"

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Maybe because my younger boys like Batman and maybe because I have been feeling a spiritual dryness for an unparalleled period in my life, the phrase "dark night of the soul" has been echoing in my head.  Interestingly enough, the phrase "noche oscura," or what is commonly known as the "dark night of the soul," comes from a poem by the 16th century Spanish poet, St. John of the Cross. He did not intend it as we think of it today--a time of difficulty and spiritual impoverishment.  He was writing about the soul's journey to God.  The dark for him is our unknown destination with an unseen God. His "noche oscura" was joyful for God redeems. . .  A few weeks ago, I finished Elie Wiesel's book, Night , telling of the Holocaust horrors he, his father, and his fellow Jews experienced in the concentration camp and work camp of Auschwitz and Buchenwald near the end of WWII. After reading his harrowing account, my own sorrow was made heavier, b

Feeling Fine

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My daily mantra, echoes the Little Engine's--   "I think he can. I think we can. I think I can" --as I care for my adult-child with extraordinary needs, home school my younger two boys, live wife to my husband the pastor. But since July 21st, a couple of days after my eldest had spinal fusion surgery, the internal cheerleader was drowned out by the realist vacillating between hopeful and hopeless, more often landing closer to the -less side: "I don't think he can. I know I can't. There's no way I can. How in the world will we ever?"  And I would like to type something like, so I prayed and realized that Philippians 4:8 is true for me:  "Through Christ, I can do all things." Or I learned to trust in God in bigger ways than ever before and I have a peace beyond understanding.  But I am not there yet.  Don't get me wrong.  I know God is bigger than any difficulty we face.  I know there are things other parents are dealing with that ar