‘…and Miles To Go before we sleep…’

     On to a New Day, and I can’t stand the’waiting…’ Waiting for research to catch-up, for a windfall to blow our way, for helps, for new friends…just HELP…

     I have tripped over a cluttered floor,in my soft Flannel Pajama, with Day being night, and night being Day, I wish I had a wardrobe of soft-Flannel or Terry jump-suits.

I have come once again to this place of expressing myself. However crude, however ‘Un-polished’ it is my safe-haven. against this Bohemoth who haunts us, My son and I. He asks each day…’What now Mom…?’ I am supposed to know the answers…all of them. I have just discovered, after all these long years, we are little known. Can you imagine,we have spent a lifetime in and out of Research Wings, and we are…Little-Known! So what that equates down to is, we have yet to find help, Practical help.

     I have written a television show for exposure and awareness, and in so doing, I have realized more than before…We need it all ‘Desperately’. We belong to a kindred of souls, spread out around the world, all with the same label-Smith Magenis, and all with varied symtoms so extreme, as to warrant finding not one particularly like any other! I was given a deadline that kept me up half the night, to desperately write for our cause…our helps…did that do the trick? …We wait…and see…and, It is Maddening.

     My son is vacumming and dusting in preparation of a film crew who may or may not choose to visit out tiny ‘Habitation’    …”Dear God, answer this prayer, let my son get all the helps and answers that he needs?’

We are 24 years past those long walks atop of Portland, and years into Sleep-deprivation, dying relatives, and little or no support  from High School years. They were for me, an excersize in bashing my head against a wall. My son played Football, Hall Moniter where he became fast-friends with students and teacher’s alike, and he read via an inter-active Computerized reading program, which after watching it work was removed. I fought and attended meetings to be mocked about not enough data, to warrant the time…I was half-asleep amd exhausted, and after watching all my son’s reading and weight lifting and football removed…after the depression and brokeness that he was sent to cleanup the School yard in garbage detail…I was then, sent a book on Sleep-Deprived Parent’s and how I was a terrible Parent! 

Yes, at this juncture we need exposure!Parent’s are wandering desperately for an answer that will pin-point this catastrophic Genetic Disorder, being onboard, and the helps of therapies to offer the families as well as the afflicted child their best lives. (Please let us get picked)!

      I hope my writing was persuasive-enough, that my son’s pictures were persuasion enough,that the other Mom’s symptom’s were enough…for we all …have ‘Miles to Go Before we sleep…!’

    

‘All Thing’s of a ‘Special Nature…’

     It has been my privilege, and my private-pain to walk alongside a Miracle. A Baby, who was not  expected to live…a Boy for whom there was little known, and now a Young man of 24. My son…My joy, My anguish!

     And this is ‘Our Blog’ this…empty page…Ours, and our time to speak! For there remains, those  hidden things afflicting people,(& our home is one of roughly 200 in the world.)!                                            As yet, we have no ‘known’   massive websites, no Telethon’s, and no helps. A tiny site on the web…which no physician, that we have ever met, has even known about…It is the description of The rarest Syndrome known to mankind-’Smith-Magenis’…and the only one in which the affected families…’Fail to sleep for life…! (Sleep Deprivation, a known form of torture…is one of it’s blaring signs!)

www.prisms.org.  describes what has emerged as That ‘Goliath, that I would do battle with, battle for my baby’s life, battle for his rights, and battle’s now, for his sustenance and every need.

     My son is at 6 feet tall, an enigma. He was supposed to ‘Fail-to-thrive…’ He wasn’t to live…I was told to not risk having him at all…that  he might be violent, he might have no brain, he might, he might, They were careful to roll out the ‘red carpet of Spectre’s’ and send me downtown just to hear out the abortion clinic counselor…’just in case…’…My son was the cause of this ‘Preacher’s Daughter’ educated into the inherent wrong of hasty abortions; to then, walk for weeks a top Portland, Oregon– walk and agonize I did…wondering, no…screaming out, where was God…any God!      It came to me, after two weeks of pacing The Japanese gardens, there, in the form of a little Buddhist Master. You all know the portraits…little short men in Rice hats…(all of them Mr. Miagii in cognito!) One approached me overlooking lazy Koi below, and asked…May he be of any service to me…?

     Can you just imagine that…? A Buddhist approaching a Nazarene Preacher’s Daughter!? I thought to myself…certainly a Buddhist could be of no help to me…but, I was wrong. He asked why I seemed so troubled, and in an instant I had told him.

In reflections, I wonder why he bothered to speak to such a one as myself…Surely in agony of soul…but in spirit, haughty and arrogant…The type of unkind ‘Religious Piety that Dams the whole World…Oh how I loathe that attitude these days!

    ” So…how does anyone choose Life or Death for an unborn child…?’ ( He made a sound much like Miagii)

“Ayish…” and just lowered his eyes. So, I asked again, thinking he hadn’t heard my question…’How does one choose life or Death…?’ I was desperate, desperate for a response…heartbroken, alone and desperate…!’

     “Oh that one easy,” and a smile spread across his face that instantly smoothed his wrinkled skin…”When choosing life or death…Always choose Life!”

How could I have missed it? It shot through me like a knife…and took my breath away…I smiled at the pond below, and knew…My answer had come.  I looked to my right, where my little Japanese friend had just been, and poof, he was gone. 

I only remember repeating lines from the Wizard of Oz…’My they do come and go in a most extraordinary way don’t they…! I chuckled, patted my belly, which was staying! YES, YES to life…and I was off…! 

 

     So, today, I am once again troubled. We are alone, just the two of us. We have outrun the majority of symptoms of Smith-Magenis…but we-are-alone…! My Preacher/Father rejected me, his only daughter, and then my beautiful son, as well. He is gone now. and the others, all of them…rejecting my little enigma, as we struggled on throughout the fearful years, and all the exhaustion.

     Last Christmas, we lost my mother, and my son’s supposed Grandmother…she would never have anything to do with this baby…with almond eyes.  She walked into my room right after he was born, and said…’Somethings wrong with him…He’s got a berrel  chest and those almond eyes…just not right’, she’d said. To me… he was beautiful! His smile lit up the room, and he was more than ‘all there…’ He was an Angel with a broken Wing…just a sweet little baby boy…rejected ( I cannot count the hot tears over that)!

 

Just as he is today. Six feet tall, a Gourmet cook, and I am 24 years of tired for it all…and, we are alone.

This is my celebration of our  triumphs, and my page…to scream about being forgotten, to cry…if theres reason, and to invite others who may hear something familiar…something of a Special Nature…’ to join us.

 

 We’ll write more of our journey..in the folowing days and months…for now…’Ode to all things Special..’!