Tuesday, March 23, 2010

DME Update

God did answer my prayers.....I now have my own personal advocate at the new DME provider, she is a nurse, and assured me that she will be the one “go-to” person I can call for any issues.  I also have one Customer Service person I can call that knows all of Lily’s needs.....in the few years since we have used this company, they have really improved, and I am not filled with dread now in dealing with them.  The previous company is another story.....to be finished later.....hopefully on a good note.

I write about such issues because this is real life for us.  Having children with special needs means lots and lots of time on the phone and constantly having to stay on top of the medical supplies.  My message to others out there who might be reading.....take heart....the God Who can move mountains, can also move DME providers as well....and insurance companies.....it is a maddening part of the whole special needs world.  I bet when we, God willing, get to Heaven, we will look at our Heavenly crown and see a few extra big jewels there......those will be specifically for dealing with so many suppliers and insurance with our children’s needs.

Go craft today!!


Monday, March 22, 2010

Click on that icon right up there in the right hand corner

The DIY Network......I am NOT being paid by these girls,  I promise.  I just think their latest video where they made cake pincushions is so cute and easy.  Gabe, my 11 yo, watched them with me, and said, “You would be good friends with them.”  He is probably right.

I Won

The above is the back, it is sort of scrappy, but I like the colors.
There was never any doubt who would win this battle of fabric, right?   I love the colors!  I am packing this up to send off to a beloved aunt and uncle of my husband’s, they are going through a lot right now health wise....I can’t cook for them, they live several hours away, so I made a quilt.

This next bit of sharing is with great joy.......I have a very nice dresser now.  My sweet husband is a Craig’s List shopper of an elite group...and this is what he found for almost nothing.  With a little love and clean up that one of my son’s helped with, this is a beauty.  I LOVE IT!

Thanks Boys!  The older two boys loaded it up, and one of them polished it up, while Jim replaced one of the drawer’s sides.  It is just beautiful.  I have never had such a pretty dresser.

I am sewing up a few gifts that I will be sharing in the next few weeks.

Craft fearlessly.....and check Craig’s List often!


Monday, March 15, 2010

DME Providers

Do you know what DME providers do???  They drive me crazy, that is what they do best.  Wait....I’m hitting my head against the wall....ahhh, that feels better than the hours I have spent dealing with our two DME providers today!!!

DME is “Durable Medical Equipment”.....they are very important companies that provide us with the equipment to take care of Lily, like: her trachs, her suctioning equipment, her g-tube supplies, her g-tube formula.  Why oh why do they have to be so difficult sometimes??  I have spent hours today on the phone with them.....hours.....hours I could have been sewing, knitting, or maybe even DOING SCHOOL......but alas, I  had lovely little conversations with insurance, two DME’s, a manufacturer of trach ties, (who do rock, by the way....if you ever need trach ties, check out  http://www.marpacinc.com/unifit.htm,  they do trach ties the right way......but that is a whole other post), and there is still no grand resolution to our issues.

This is when I need to remember my spiritual reading.....my reading about offering up everything as a prayer, and treating everyone in a charitable manner.  I am, in all seriousness, challenged in those departments.  Sleep deprivation and my Irish roots get the best of me in ( Oh, hold on, wait a minute, I have to talk to one of my DME friends right now....okay, more craziness.....yeah....okay, NOW I might have gotten somewhere), anyway, where was I?  Irish roots?  Is that a rock band?  Oh....no, I am talking about me, and I need to get off THAT particular subject right now and end with a little prayer.

Dear God.......I really don’t mean all of those things I mutter under my breath about DME providers.  Please bless me and them with an infinite amount of patience and peace....and maybe even a little joy in our interactions together.  And, if you can find some Marpac trach ties, covered by my insurance...all the better.
Your very impatient, tired daughter,

Wednesday, March 10, 2010

What I Am Reading

I have always wanted to read something from Alice Von Hildebrand, so today when I saw, “The Privilege of Being a Woman”, I bought it.  I have only read a few pages, but it is a powerhouse.  WOW!!  I’ll check back in when I am done......has anyone else read it out there??


The Beast

I have a new quilt that I am almost done with.....oh, it is a beast!!!!!  It will not behave while I am sewing...and I made a very big mistake.  The thread color that I am using for the quilting is not working....but I am committed to using it now......sigh......I can’t wait to be done with this quilt.  I want to make so many other things....but instead, I feel pretty compelled to just get this done first.  I am like a fickle friend with my crafts.  Pretty colors and textures are like the Sirens.....calling to me to start a big project, whispering to me of grand outcomes.....and then reality sets in, and I am no longer enjoying my “time” to relax. The problem is I am fearless in my crafting, and while I exhort all to be fearless in their crafting pursuits.....I am often not reasonable in said pursuits, and expect to get done waaaaay more than a mama of five with crazy schedules should be taking on.  Sometimes, it is exhilarating and fun to tackle something so seemingly impossible and finish it!  Other times, like now.....and few hot pads would have probably sufficed.

 Look at this attitude.....sitting in MY chair, like it owns the place!!!!

That’s it.  It’s just you and me, quilt.....you know who is going to win, so just give it up.

I’ll keep you updated on the battle.


Wednesday, March 3, 2010


"Even suffering is part of the truth of our life. Thus, trying to 

shield the youngest from every difficulty and experience of 
suffering, we risk creating, despite our good intentions, fragile 
persons of little generosity:
The capacity to love, in fact, corresponds to the capacity to suffer, 
and to suffer together.”

 Benedict XVI

I am holding on to those words, Papa.