holding

in every house
sorrow dwells
behind every door
in every house
there is a place
where sadness sleeps
in our house
my son's ventilator's
thrum and woosh
sets a rhythm
for a melancholy dance
into his room
out of his room
we bring liquid in
we take liquid out
clean linen in
soiled linen out
sterile dressings in
bags of garbage out
he breathes us in
we wait for him
to breathe us out
tubes go in
tubes come out
people come
people go
still
he has breathed us in
he will not breathe us out

in houses
everywhere
each day
people lie dying

we who live
inside them
also die
a little
every
day

sorry again

the 1st laptop that died - died because it fell on the floor
the 2nd laptop that died - the screen light somehow quit
the 3rd laptop that died - first the battery quit then the wire sparked and quit
they were all handmedowns and quite elderly
they will be missed

the desk top works but I can't see or hear Sonnyboy in here and all our overlap time goes to Hubby for his job search

thanks for all the nice comments and good wishes

I will try to visit

gotta go

sorry

I just wrote a thousand words and some how deleted them . Too upset.

part next

OK I'll see how far I get today. Sonnyboy is awake and watching NOGGIN.

So Sonnyboy has Klinefelters Syndrome(extra X) and parts missing (VATER Syndrome) and brain damage with seizures. He is very small and fragile and they send us home with no help and no referrals for anything except about three doctors appointments per week for the next few months. I started making phone calls and got him into an infant program with our local UCP.(united cerebral palsy association runs infant programs for all at risk infants). We were unsatisfied with the amount of therapy they were able to provide so we also used our insurance and had him in private OT,PT,Speech and computer. By his first birthday he still did not even have newborn skills and was sick and in the hospital almost every month. During the next few years we found out he had terrible allergies to foods and substances. He had multiple medical treatments and additional surgery. They told us he probably would never sit by himself let alone walk.
It was very discouraging. The older boys were 10 and 2 1/2 when he was born. Thankfully I had very supportive parents and some wonderful friends. Sonnyboy's care was consuming. Husband #2 read somewhere that 95% of marriages with a seriously ill child break up. We worked very hard to take care of all 3 boys. We worked very hard on our marriage. We worked very hard not to down the drain financially. We worked...

and it seemed as though all our hard work was paying off. Sonnyboy came off seizure medicine. Started holding his bottle at three years, started walking at four years, stopped getting sick once we had him allergy tested. The older boys were doing well in school and socially. Our marriage was fragile but intact. We lost some "team" members, most notably my Dad. We were paying our bills. We went to contract on a house and then...

They dropped 8000 pounds, yes, 4 tons of concrete on Husband #2. We were devastated. Physically. Emotionally. Financially. I don't know how we did it but we made it through. Husband #2 read somewhere that 99% of marriages where a spouse has a head injury break up. He figured we had a 99.95% chance of breaking up and just gave up. At the time I was really angry, but, if that marriage had not ended I would never have met Hubby.

If anyone is extraordinary it's Hubby. He is the smartest person I have ever known. He took over helping me raise my boys as if they were his own. He never raised his hand or his voice even when provoked by #1 son (otherwise known as the world's snottiest teenager). He helped me pay my bills and keep my home together. He proposed the day I signed my divorce papers. He helped me hospice my mother at home right til the end. He took care of me and took time off from his job to take care of Sonnyboy while I battled cancer , going through chemo and radiation. Hubby is the best. Of course we still had not encountered our largest hurdle...

but this is all I can manage today.

Life,The Universe and Everything

(OK,OK, I know I stole this Title)

I wish people could understand that to Hubby and me , what we are doing here is not extraordinary. We are not extraordinary people. We are a bit sloppy, somewhat lazy, fairly judgmental and we don't bathe frequently enough. We don't get out often and are therefore unpractised at the social graces. We work closely together and do not say please and thank you every time we ask for something, which is OK unless we are working with someone else. If it weren't for Sonnyboy our friends and acquaintances would think of us as that somewhat peculiar vegetarian couple who vote Green and write poetry.

We have been thrown into extraordinary circumstances. Sonnyboy never had a chance. He was damaged at conception, and who knows probably even before conception. He was born with an extra chromosome. An extra X. This condition is known as Klinefelters Syndrome. In addition to this there was a "stress" to the pregnancy at approx. 28 days, before I even knew I was pregnant(my first test came up negative). This caused one cell to mess up and Sonnyboy was born with multiple parts missing. They OB and the Sono people chose to believe their was nothing really wrong and I was encouraged to give birth in a local hospital rather than a facility with a NICU. Sonnyboy was in big trouble right away (Apgar 2). He received less than optimal treatment, was baptized (they thought he was going to die) and suffered brain damage from a lack of oxygen before a transport team arrived from the NICU 45 minutes away. After he was intubated and had an IV started he did look better and he spent the next 7 weeks in NICU had a huge amount of surgery and came home . The surgeon admitted that had Sonnyboy been born five years earlier he would have died the first day.

Wow, this is stressful, I didn't know where I was going when I started this post and it is wearing. I think I will stop here and pick up on this at another time. Thanks.

Night Shift

Nurse's Station

4 a.m.

Low tide of human cycle

Nerves jagged seashells

Limbs irrigous seaweed

Wit of dead calm demands repose

Compelled to watch til sunrise

Conducting fragile cargo through this night

Rolling

Well the wheelchair is great. It turns out though that I am totally joystick impaired. #2 son has informed me the reason there are so many holes in the sheet rock is because the controller has an inverted Y Axis. So it really isn't my fault when I crash. OK!

Sonnyboy loves going outside. I am quite a chicken though and have been making slow progress in extending our trips. We have gotten as far as going down the driveway into the street and to the end of my property before turning around to go back up to sit for a few hours on the front deck. Hubby was alongside the whole way with the old wheelchair filled with backup equipment for all those just in cases. The neighbors must think we're nuts but as far as I'm concerned that just makes us even.

Sonnyboy is asleep right now, I hope he wakes up early enough so we can do our regular Am care in the Pm and maybe get him outside before dark. If not today, well then fiddle dee dee, tomorrow is another day...

above water

My ideas are flat rocks which I skip across the sea of your mind.
Your attention alone is what is needed to keep them visible.
A lack of interest on your part is all that is necessary for them to sink.

Forgotten.