So Much Snow!

There was so much snow the last couple of days that the clothesline was broken and the road's impassable. I've not seen this much snow since we lived in Denver. Ironically enough, it was clear & sunny in Denver today while it snowed all day here in ABQ. Go figure.

I've been very ill. It's hard to tell if I'm deathly allergic to something, having adverse reactions to my meds, or if I'm just experiencing classic symptoms of congestive heart failure.

Apparently, fibromyalgia comes and goes in flair ups and then it goes dorment for a period. Then it comes out of dormancy and it kicks you to the curb--in cycles. I had a spell just like this about a decade ago--ended up trading in my couch for an electric hospital bed. I gained a HUGE amount of weight, ended up with a cane and on disability.

But then I started to get better. I dropped a bunch of weight, lost the cane, and even got pregnant! WTF? I've analyzed the situation to death trying to pinpoint what the two spells have in common: vitamins, food allergies, stresses, etc. I can't figure it out. Why did I get so deathy sick, and then why did I get better? What's causing the same thing to happen to me again? Will I survive it again like I did last time, or will it take me out like I'm often convinced it will? Whatever the case, today I was very very ill. Please Lord, put Your healing hand upon my body; please....

Horrible Hospice Holiday

The snow lingers, but nothing like if we lived in Denver. I miss the Denver blizzards in my heart. But I’m sure my body could not handle it like it once did in my youth---those awesome days when I depended on the city bus, and made snow angels with my friends in the middle of Pearl St...

I said to another of my email buddies that the holidays get harder as the girls get older simply because the “excitement years” are so precious---and so profoundly absent! Our excitements are found in the solar twinkle stakes we put at our girls’ graves--pictures of my husband doting over his little girls is not NOT the way it's supposed to be.

I can’t tell you the depth of the heartache as we struggle to accept the fact that we don’t get any more babies; that our only baby is a grown man, and that our rainbow can only be found in the hope of our grandbabies. We pray for our future DIL more now than ever before in all the years I’ve fervently prayed for her. I nearly feel pity for the poor dear. Does she know what befalls her when God steers her into our family?

And OH MY GOD (and I never say such an exclamation using God in such a horrendous manner, but this one really takes the cake)

Last week I was whining about hospice and how much I loathe them---their underhanded involvement in my daughter’s early demise, and their cheesy homemade holiday ornaments that they think will make it all good...

They came today while I was in the shower (thankfully I was able to avoid them). They left a basket at the door that Brian brought in when he got home. It reeked of chemicals---like paint or hair spray or nail polish remover; something quite toxic!

So Brian set to work unpacking it trying to decipher what it was that was making this putrid smell. He gets mid-way though and exclaims, “oh my God, they must have packed these things over a month ago cuz everything’s way past rotting!”

He pulled out apples and oranges that had rotted so far past the bruising stage that they were fermenting and giving off a chemical peel smell. I’m serious! It truly smells like someone exploded a paint can in my house (and God help them with what stench is left in their minivan--surely they smelled this thing before they dropped it off)!

So then he brings me an individually wrapped chocolate bell, figuring that we could salvage a bit of their feeble attempt at gifting. OH MY GOD, I had to spit it out the minute it touched my taste buds! If I hadn’t been such a pig, I’d have smelled it first and gotten a clue! It had absorbed a disgusting flavor of rotting orange & apple peels---very toxic! VERY GROSS!

Happy Holidays, Bacon Family

Here’s your rotted fruit basket consolation to go with the empty disappointment of cemetery celebrations

And yes, my ingratitude stinks as badly as the "gift" basket...


Anyway, I’ve felt a river of tears clogging my throat for days, and they finally let loose their sobs last night. I’ll probably have some more later after the hospice toxic fermenting fumes wear off--if that's even possible. To be certain, my life is surreal!

I miss them both so very badly. Little Miss Three Year Old and her sister, Little Miss 19Month Old---what an awesome blessing they would have been for our family. How empty our lives are this side of Heaven with them away...

They still add something wonderful to our lives---it’s just in such an “inside-out” sort of way, and there's such an anguish that accompanies the blessing. It's like the underside of a beautiful embroidery--all knots and strands, and you have to trust that the upside is just so very gorgeous. I guess that’s what earth is to Heaven, and that’s how life is most of the time...

No, they are NOT dead; they have merely moved. But Heaven’s even farther than Iraq, and there’s no letters or emails. Nevertheless, I suppose many of the soldiers have also received some pretty crap ass care package baskets for their holiday consolations--I hope not as bad as the one as we got from hospice!!!

Thankfully, Heaven is not so very very far away; and for real, The Father’s Gift brings it oh so much closer. Thank you, Lord Jesus; thank You for Your Grand & Glorious Gift...

But ya know, I’m very curious over ye who believe not in the person of Satan or his minions commissioned to assist him in his earthly efforts. Clearly, such a person exists. A car load of his deputies came to my door this very morning. Another pack of them directed my prenatal care when I was pg with Abigail...

I do not know the entire answer as to why our loving God has allowed such factions of evil to exist. I do know that most of the answers are found in Scripture if we look & listen well enough—especially to Old Testament lessons.

The answers aren’t always easy, and it’s quite natural and normal to question why. God never holds that against us. For better or for worse, there will always be a part of God that He keeps a mystery. But He does reveal much to us if we ask, seek, and knock...

Ultimately, God uses adversity to accomplish some of the worlds greatest achievements. He often uses suffering as the velvet black background in a beautiful portrait of tremendous depth.

We often prosper best under such challenges and anguishes---rather like wheat is separated from the chaff, then ground into flour. One might argue that the kernel of wheat endures excessive adversity just in the chafing & grinding process. And yet that poor little kernal then goes on to experience even greater suffering as the gluten is thereby developed through kneading, pounding and rising, and then a repeat of the process. What’s more, a risen loaf must then be baked in a blazing oven before the delicious doughy sustenance is ready for enjoyment. A grain of wheat must endure much hardship before it’s finally a tender slice of buttery toast to nourish the body and bring pleasure to the palate.

To be certain, trusting God not to scorch the hell out of my crusts has been quite a challenge. There’s many many times when I’ve wondered if the toaster of my life hasn’t been set several notches too high. In my mind’s eye, I envision this stack of toast that’s had its blackness scraped off with the edge of a knife---a sorry attempt to make it edible anyway...

Faith of a Mustard Seed

I get so bummed when people say things like: I wish your faith would bring you peace. As if to say my faith is supposed to erase all the human pain that comes with burying two children, and the pain of diabetes & fibromyalgia.

If faith erased such pain, EVERYONE would be a believer!

The fact that I'm such a strong believer in the face of such pain speaks volumes of my faith, don't you think?

It just makes me feel ashamed when those who don't know such pains as mine seem to think that if I'm faithful enough then I will be "happy" with my plight in life. People really are clueless dolts most of the time.

The fact that I'm out there giving gifts and sending cards--wishing others joy in Heaven's Gift; good golly, what a testimony of faith! I can barely walk with the chronic pain I live with.

On top of my emotional anguishes, my body's been overwrought with pain and debilitating disease this last year or so.

And yet I'm still up & at 'em--still out and about--still giving and reaching out. How much faith does a person have to have in order to impress someone???

And yet my faith isn't about impressing people. It's about receiving that ultimate reward of "well done, thou good and faithful servant." I think in light of all that God's done to allow havoc in my life (a means of tesing & proving faith), that I certainly must have impressed HIM somewhere along the line.

I may whine like Job and cry like Elijah, but God never held any of their humanity against them when they struggled through their tribulations. I rejoice in my Saviour in spite of my human plight of anguish. If people can't see that then blindness truly has consumed them!

Keeping Christmas: Giving & Receiving Grace

Goodnees it's been too long since I've been here last. I've been so busy and anymore, my lifestyle speed is ultra slow motion--how to change that, I have no idea.

Working on Anne's Legacy page for the Trisomy Foundation has made me hate doctors even worse than I did--especially as many of my medications only serve to make me sicker. Where is our nation headed when our health care system is in such a shambles?!

I could be in both psycho & physical therapy for years trying to work out all the anguish the medical professionals have caused in my life. I live in a chronic state of PSTD and chronic fibromyalgic pain.

More specifically, as I've worked through the plethora of issues that surround Anne's death, I've come face to face with some serious issues over our medical & hospice experiences. Hospice had a memorial service not too long ago that invited us and then ended up totally excluding us--total drop the ball gig! It was the last straw in how disappointed both Brian & I have been with all manner of medicine and their so-called services.

In fact, their presence in our lives needs to come to an end--hospice, that is. But I have no idea how to "fire" them without coming completely unglued over how utterly exasperating our experience with them has been.

I remember the day of Abigail's funeral. My OB called to rub vinegar into my wounds. I ended up telling her off --in no uncertain terms I read her a liteny of all the critical ways she failed us--failed us to death, as a matter of fact! The university providers and their hospice team did the same thing with Anne, and it's just taken it's emotional toll in terms of being violated; assaulted--raped by a system that boasts so much pride!

Sure, God may have our days numbered, but mankind still has be be accountable for such concepts as "thou shalt NOT kill." Mankind still has to be accountable for their actions that cause other's lives to be ruined or ended.

Neither Abigail's nor Anne's death was merely an "act of God" --No, there were some handsomely paid medical personnel who had their hands in the outcome of both Abigail and Anne's lives. Praise God there will be a Day of Reckoning!

Yes, God may have had every precious moment of our baby girls' lives numbered. No doctor or nurse may have ever been able to alter the fact that LIFE IS TERMINAL and none of us gets out alive. But who among all those medical people exhibited actions that said they were dedicated to seeing my girls LIVE rather than die? Who put their medical ethics to work for LIFE? Which one of them dedicated themselves to making sure my children had as many precious moments to their lives as possible?

God may have taken their souls at the time He saw fit; but in His Book of Judgment, those who were in charge of my little girls' lives will still be held accountable to their errors that caused their early & untimely deaths. Even if man's "culture of death" ethics absolves them of any culpability here on earth, God will never absolve them without their genuine repentance.
I doubt I'll ever receive an "I'm so sorry" from any of them who have ruined my life or killed my children right out from under my nose--medical people don't apologize lest they find themselves in a legal quandry. And thus, they often deserve the legal problems that befall them.

I know as Anne's mother that I too will be held accountable for her life. I'll always have that gnawing anguish that I could have and should have done more for her. There are better doctors in other cities, why didn't I take her away from this medically ignorant state? I'll be held accountable as her protector for every way I failed her. I've riddled Heaven's doorstep with my pleas of sorrow & regret. Praise God I am forgiven all my confessed failures!

You can read my testimony about our medical experience at Anne's Legacy page at http://www.trisomy18.org/goto/anneelisebacon

I often feel like God gave me Anne to show me all the ways our medical mindset is set upon chosing death over life--she's taught me what it TRULY means to be "pro-life." Did we do all we could so she could have life? Did we believe in her; in her capacity to love & give & overcome? Did we really rally her to do her best?

No. We failed her in so many ways. I believed in her and loved her as best as I could, but still I could have found better people to care for her medical needs. I accept that as my failure in her life.

But to be certain, our "medical advisors" failed her most of all. And what hurts the very most is their inability to admit their failures; their inability to see how they contributed to the problem. Their presence in my life makes me feel violated all over again as they force us to stifle our grief with their excuses and justifications for why they think they're right. As God is my witness, I will never accept their "culture of death" theology!

As far as I'm concerned, Anne's life was cut short needlessly. Many will blame her illness. Many will not agree with my claim that Anne's medical advisors helped her die far better than they ever helped her live. Maybe our perspective is all wrong. Yea well, let those people live my life instead...

Tis the Season

The Season of Abigail has reached its pinnacle. Sunday before last we had a baby shower to celebrate Abigail's upcoming arrival. Then last Sunday we marked the last day she was alive. This Sunday marks the day we buried her in beneath the sod.

Our family is emotionally exhausted and so very sad. So much has happened to us in such a short time frame, and the support has been so dramatically lacking. We cling to the One Who Saves us. We celebrate Christmas because of what it is we receive with Heaven's King come to earth on our behalf. What on earth would we do without Him? How could we survive all this without Him?

Christmas is the hardest time for my heart to endure. Only my treasures in Heaven make it worth celebrating--they are the reason why I can still celebrate in spite of the desperate sorrow that crushes my spirt. I live because He lives, and He lives that He might come and make my joy more complete.

Truly the Joy of the Lord is my Strength.