Sunday, November 8, 2009

Prayer Request - Stellan and Gavin

On what was an absolutely gorgeous day here, two families - both with beautiful baby boys - are in emotional turmoil.

Stellan is now in Boston for treatment and a scheduled ablation. Before the procedure, he had to be weaned from all the medications controlling the episodes of SVT. Not completely unexpectedly, he is now in ICU, intubated and in SVT. At one point, his blood pressure was 43/12. He was receiving an arterial line and his fifth IV of the day about an hour ago.

According to MckMama, the doctor believes there is no way Stellan can wait until Tuesday for the ablation. 'Soon' could mean anything.

Since MckMama is alone with Stellan right now, they can both use a hefty dose of prayers, as can the medical folks, as Stellan is still extremely young and small for what they're planning to do.

Stellan

* * *

Meanwhile, Gavin Owens has been doing battle against mitochondrial disease his entire short life. He is winding down and still fighting. His mother Karen's heartfelt post from this morning:

We are so tired. Tired is probably not even a good enough word for the state we are in. Watching our child suffering is unbearable. Gavin spent most of the night with O2 levels in the low 60's to low 50's -- yet he is still trying to keep going. His lungs are almost completely filed with fluid and his is swollen and grey. We are having so much difficulty keeping him comfortable. He is on lethal doses of narcotics and we also started with sedation medications -- but he is still building tolerance as the hours go by. His CO2 levels are probably so high at this point that he really isn't cognitively intact anymore but it is very difficult to hear him cry out.

I sat with him for a few hours last night and rested by hand of his chest just praying that each breath would be his last -- that he would realize that he didn't need to fight anymore. He could stop suffering
.

Gavin


It's situations like these that make my heart ache. We've been in similar shoes, and they're not comfortable.

Both families, both remarkable, need prayers for wisdom, courage, stamina, acceptance, and peace.

Lucy

PS - You can follow MckMama and Karen on Twitter for updates.

Saturday, November 7, 2009

Football Hooky! Beach Hooky!

I'm off to a football game in what looks like truly gorgeous weather (although you didn't hear me say that), and Ethel's off to the beach for a long, long nap and perhaps a few M&Ms.

One of us is more likely than the other to return home....

Happy SUNNY Saturday!

Lucy

Friday, November 6, 2009

Angel Intervention

Twelve years ago today, we were getting ready to switch gears from one life chapter to another.

We were getting ready to say goodbye, in the official, earthly sense, to our baby, Jeffrey.

We were getting ready to endure an excruciatingly long 12 minutes of listening to words about something (I was too busy sobbing to hear) and staring at the tiny white casket that held our baby’s body - the one ravaged by SMA.

The tiny white casket, surrounded by pictures of our beaming angel in the midst of sympathy teddy bears and flowers.

The tiny white casket.

Twelve years ago, the tears flowed from incredulousness, numbness, and shock.

Twelve years later, the tears flow, mostly because while we can’t see Jeffrey, it’s so obvious to me he’s around.

And knowing he could not be in a better place is a relief. Still. After 12 years.

There is no category of life assignments lower than Loss of a Child, but in the scheme of things within that category, we were truly blessed. We had 8 weeks with Jeffrey before we knew something was wrong, he wasn’t in pain, he was happy, and the morphine helped ease his respiratory distress at the end.

We also had time to prepare.

Still... the image of the tiny white casket remains vivid and too much to think about. So I don’t... except for a few fleeting thoughts on this day.

Because if I can’t have Jeffrey with me in the physical sense, I much prefer the hawk.

Or the angel intervention as it came this afternoon, twelve years after our baby’s body was gently placed in his resting spot on our mountain.

I have been whining about the roadblocks in the book revision process for what seems like a year (maybe longer to you!). From the computer crash to the printer woes, from problems with the document program to the proof, it’s been a heckuva challenge in many ways.

This afternoon, frustrated that I couldn’t get what I wanted (primarily, clean illustrations), I decided to send the trouble spots to a Mac person at the printer’s in town when an idea hit out of the blue... skies, that is.

I decided to send one page with an illustration that was fine on my end and ‘dirty’ on my rep’s end (and, no, that doesn’t sound good) in a few different ways in hopes that at least ONE way would show up clean for him.

After talking to me several times already today and seeing the downward spiral of my relatively normal rational behavior, he seemed only a bit wary when I called to explain ‘my’ brilliant plan and agreed to check it out as soon as they arrived.

ONE worked.

It was the .pdf version from Postscript, something I wasn’t familiar with and just ‘happened’ to notice.

Thanks to angel intervention, the new revision - with clean illustrations - is back in Trafford’s hands.

And my tears are now those of relief and gratitude.

For angel intervention.

And for the knowledge that Jeffrey is still happy to hang with his mama.

Lucy


Dear Heavenly Father,

In the springtime, when life always seems so hopeful with abundant rejuvenation, You graciously gave our family a priceless gift. We named him Jeffrey and loved him more than we thought possible. We knew he was special from the beginning, and yet in time You showed us that he was even more special than we imagined. Our love for him intensified and began spilling over into increased love and appreciation for others and for You.

In the fall, when Your brilliant colors and crystal skies defy description, we gave Your gift back to you; not because we wanted to part with him, but because we loved him that much and because You seemed satisfied we had taken good care of him during his brief stay on earth. You chose to accept him on a day when he was surrounded by so many of his loved ones, and You chose the peace and beauty of the night to welcome him back home. It was no coincidence, we know, that the stars were even more magnificent than ever that night....

Because of Your generosity in allowing us to care for Jeffrey, we learned not only about him and his special needs, but more about You, ourselves, and others. We have been reminded just how unique each and every one of us is and how blessed we all are to be part of Your plan. We also more fully appreciate Your own sacrifice to us so long ago.

And so we rejoice with You and thank You for sharing Jeffrey with us and for being with us every step of this incredible journey. We may not be able to hold Jeffrey in our arms now, but we shall hold him in our hearts forever and ever. You have enriched not only the lives of our family beyond comprehension, but also those of countless others who have been touched in some way by Your new angel. We are all richer because of it....

11-6-97

Thursday, November 5, 2009

Thursday Thnippets

Ethel, the city slicker half of this delightful, informative duo, shared a few thnippets of her own in her last post.

There were a few mountainbilly moments on this end, too.

I found a hubcap on the living room floor beside the couch. Well, okay, perhaps that's a redneck moment.

My new, scanner-balking printer got clogged up with paper. I declogged it and attempted to print again.

I then got the message, 'There is no printer.'

#$%*^&^&$#%$#.

Meanwhile, Kali, our aging, visually-impaired Golden retriever, spied a bigger version of herself across the road and did her best to drive me insane, er, protect the homestead.



Sami, who loved sleeping on top of the old deep monitor years ago, was determined to find warmth in the house somewhere. Anywhere. She would have to make do with the credit card machine.



To round out the mountainbilly image, Emma was in the middle of a yawn when the camera finally decided to wake up. Yes, I know she looks vicious. Slightly rabid, even. She's really only rabid when there's a cat food can being waved in front of her. I should post this on the front door. BEWARE... RABIES ON BOARD.



I discovered yesterday while checking the proof of the book that there was some oddball stuff going on, like lines around some illustrations and enlarged font in the text. I called my rep, who is surely counting his blessings I'm on his list, and he claimed all was exactly as it was on the .pdf book file I sent to them. I begged to differ on more than one occasion and printed out pages for proof. He said he'd check with the design folks today and get back to me.

I'm still waiting.

I did finish our week as a Nielsen family and will put that $1 pay to good use. Thankfully, this assignment (for which I was urged to accept) came during football and catching up from the book work, and there wasn't much to chart. I did learn that we are pretty boring and that I am pretty clueless when it comes to TV channels. And that we have to buy WAY too many channels in order to get the ones we want. If we could pick and choose, we'd have about six. And maybe the remote would last longer for those who insist on flipping channels constantly. CONSTANTLY.

Speaking of... Randy's JV team played its last game tonight, closing the season by beating a team that hadn't lost a game.

Tomorrow's Friday already! I intend to spend some of it Googling. Because as Ethel learned, it's good for, um, um, something....

Lucy

News that's (almost) Fit to Print

I found this while googling. Maybe there's hope yet.

Googling Fights Dementia, Study Suggests

Then there was this fascinating tale:


And if that's not enough for you, how's this one:


You'd think I didn't have a thing to do. Truth is, I don't have a thing I want to do. Big difference.

Ethel
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