Friday, June 29, 2007

The need to write right

Oh man - I am so hoping to express something that is really tugging on my heart right now. I won't claim to say this in the best way, but I want to let you in on what's been giving me a hard time the past couple of days.

So many people have been so generous to us for so many years. It as been overwhelmingly amazing to the point of exhaustion at times. We are just so amazed at how caring people can be. Thank you so much and thank the Lord for His goodness!!

As recipients of such beautiful selflessness we also struggle. It can be very hard at times to always be on the receiving end when we so much want to be on the giving end as well. Annabelle prayed before dinner one night, "And Dear Lord, please help us to find someone that we can help too." It is on our minds all of the time. We understand our predicament, however, and do what we can to show the love of Christ to others through our situation.

So, on to the thorn in my side, as they say -- Given the gaping hole of despair that we were no doubt tempted to fall into b/c of the series of events with the van, but also b/c our lifestyle is as such - when we receive donations or care in ways that dramatically shoot us forward in the process to recovery, it can really do a number on our emotions. This does not mean that all other amounts of care, be it financial - emotional - substantial - or the like, are any less meaningful and essential to us. We believe that no true value can be put on other's generosity to us, and I, by no means, intend to forget or leave out the fact that there have been more donors than the family I mentioned in my previous post. The nature of the amount was such that I was overwhelmed with calm as I realized what it meant for Emily. I hope I can portray this accurately. We appreciate EVERY ounce of generosity that we are blessed with from the email or phone call to see how we are doing to a sum of money to help with expenses. We cherish them all the same.

Peace <>< - Nate

Tuesday, June 26, 2007

Shaking in awe

Have you ever seen video of girls shaking and crying from hearing Pavarotti or the Beatles? On this years American Idol there was even footage of a teenage girl crying when one of the guys was singing... I never understood that really. I mean, I get music and I am in awe at the sound of good music, but c'mon - get a hold of yourself ladies!

Today we had our own Pavarotti moment - I was shaking in awe and wonderment, unable to contain myself. Today we received an unimaginable donation from an amazingly generous family, for Emily's Van Fund, totaling $15,000! Thank you so much. We are completely humbled, on our knees, under your care and generosity. Thank you.

Sunday, June 24, 2007

FSMA Conference '07



We had a GREAT time at our first FSMA conference. Hopefully the first of many. We finally got the chance to meet many of the families that we only know online through emailing and some phone calls - and we had the chance to sit through some very informative sessions on SMA care, research, home modifications, tax deductible expenses, family work shops, etc, etc. Emily got to ride a pony with the Make a Wish Foundation and we just had a blast. Having a blast with Emily comes with a price and we are very worn out now from the trip, but it was so worth every last ounce of tiredness that we might feel right now. :*) We drove through the night and I took some pics of the trip and conference - I hope you enjoy them. I was also battling a little critter on the drive that I wrote a little poem about. I hope you like it.

Listen here, my flighty foe,
Mr. Mosquito.
I'm tryin' to drive!

My kid's asleep,
My wife's close behind,
and the LAST thing I need is a welt to find.

My arms are a flailin,'
Reared back for a slap,
My stolen blood all over the map.

Get AWAY from me,
go fly down and die.
Go to the mosquito place high in the sky.

What'er you do,
Don't touch my sweet baby,
For that would... SMACK!!!!
AHA! Gotcha you little sucker!

Tuesday, June 19, 2007

VanNotes

  • Van: Totaled (value $6700)
  • Cause: car battery acid spilled on the floor
  • Rental: Insurance will pay for our rental 7 more business days
  • Plan: work on good, solid, one-page fund raising letter to provide to church, friends, and charity orgs (maybe with a video montage of Emily's life with a script read during the video). Dilemma: Wondering - should I get a loan for a medical van and pay it back with funds rasied, or wait for funds before I get a van (likely to be $30k - $40k). Wondering what sort of van to get w/out knowing how much $ we will have in the end - wondering, wondering, wondering -- should we just get the van, b/c we need it, and leave the rest up to God? Yes AND No, I guess. How the heck am I supposed to really feel like I am being responsible when all of this is happening?
Aside from that I am waiting for the title to be cleared up between states and must present the correct title before I will see penny of that insurance check. Relying on the DMV depresses me. :( Oh well - gotta take this one in stride.

That's our current situation - oh yeah, that and the fact that I ordered a special vest so we can secure Emily in the van while we drive to Chicago with AMPLE time to get it before tomorrow - they failed to let us know that the darned thing was on BACK ORDER!! C'mon people!! Throw me a freakin' bone here!! So we had to find another source for the vest in a time-zone back from ours (Ohio I guess) so they could call the UPS guy back to get it to us by tomorrow (Wed). Another day in the life of SMA.

I'll leave you with good news - we got our friends van wired with the fancy shmancy inverter and we are ready and set to go - that's cool! Also, I still believe the van thing did not happen out of God's scope for our lives and we will end up being just fine in the end - still stressful though. One day these things won't even bother me any more. "House burned down - no biggie - just a house" (that didn't actually happen) -- you know, something like that. One day...

Peace <><

Saturday, June 16, 2007

VanNews and our FUNd Raiser

Greetings folks - we had a great day today! Emily was in a great mood and didn't have too much trouble with her secretions and we spent the gorgeous day having a yard/bake sale!! On Wed Diana decided that she wanted to have a back sale so we can bring some $$ to Chicago and participate in a silent auction to benefit Families of SMA (FSMA.ORG). We raised nearly $300!! Oh yeah -- Ummm, I guess I didn't mention this..... Diana, myself, and Emily are driving up to Chicago this coming Wed to attend the annual FSMA conference. If you don't already know, FSMA is an international organization focused on raising funds for SMA research, family care, etc. They are the largest organization of it's kind, serving SMA families. :) Anyway, we are blessed and have received scholarships to pay for our trip, so our main concern can be managing Emily. We have never taken a road trip like this with Emily and our van (I'll get the van in a minute) will not work... soooo, some of our awesome friends are loaning us there comfy van to make the trip in. Again, we are blessed! Please pray for us on this trip - that Emily would travel well and that our time with other SMA families and hearing the latest news about research and care would be incredible. We are excited.

The other news has to do with our "little" battery acid spill in our minivan. I have used baking soda, battery acid neutralizer, oder neutrilizer, MORE baking soda, vinegar, water, etc, etc and I CANNOT get that smell out of the van. In fact, the acid continues to corrode the metal and has started eating away at one of the bolts that holds the seatbelt to the floor. I have ripped out carpet, etc, etc. It is awful. My eyes and nose sting every time I get near and/or in the van. So, after trying everything I could I called our insurance company to see if this could be covered. Installing new carpet alone will cost upwards of $900, not to mention cleaning and detailing. Anyway, they directed me to a local auto body shop and that is where the van is now. The guy came out to make an assessment and immediately saw that they were not going to be able to adequately clean this van. :( To make a longs story as short as possible - the van may be totaled. Our insurance company is supposed to send out an adjuster to figure it all out, but I really don't know how it could possibly be saved with the corrosion that is already going on. Amazing!
So, we've been praying that God would work with us on this van thing - it wasn't working for us and Emily and we needed to sell it or trade it in for a medical van... I have no idea how this is going to turn out.

Ok - this is the crazy thing. I've been trying to figure out a plan to get us in the van we need for Emily. This seems to be a theme now - when I start planning something, these sorts of things start to happen. HONESTLY! I was making plans for my career (very un-me like) and then we end up moving where we are RATHER than farther West where I wanted to be. I decided that I could make a career out of managing specialty retail stores, and then I get the job I have now. Why plan?! I am not completely asking that question as if I really don't think we should plan, but should we? We must b/c we are human, I'll give you that much, but the Bible says, "a man makes his plans in his heart, but the Lord directs his steps," or something like that. Maybe it's not so much what we plan, but WHY we plan. I haven't figured that out yet, but I have my suspicions. But we're constantly forced to fly by the seat of our pants (aka - trust in God - which we do), so why the heck do I invest any of my heart and soul into some crazy plan of mine?!

That being said, I am trusting that God's plan, as always, is perfect. We will take what we can from this van experience, even if it getting the darned thing back and having to try and sell it or something. As I said before - if I only focus on how to NOT have that van then I will completely miss out on what there is to learn by having it. :) I love that van... NOT! But I love having it if that is what God wants for us right now.

Peace <><

Thursday, June 07, 2007

Lessons Learned

I bought a 12v liquid acid deep cycle battery to use as backup power for Emily's equipment, but decided that I'd rather get a closed gel-cell, so I put it in the back of our van to return to the store. The next day Diana drove the van somewhere and the battery flipped over and leaked all over one side of the van floor - DISINTEGRATING the carpet on that side and anything else in it's path as it spread. That is why we need a CLOSED gel-cell battery! :( Anyway, we'll have to replace the carpet in the van now - AHHHHH, but at least no one was hurt. That's the story for this week.

Emily has been doing SOO well and I hope you all enjoyed the video of her drawing. It's like her mind has just opened up to learning and communicating and it has been a blast watching it unfold a bit. Anyway, here's a recent pic of Annabelle and Emily.


Peace <><

Saturday, June 02, 2007

This is AWESOME!~!



I was playing with Emily today and propped up this magnetic drawing pad - she was goin' to town! Once before I could get the camera out she stopped and looked at Cindy like, "did you see how cool that was?!! I'm drawing!!" I was so excited for her. Watch her prop her own arm up, though. She figured that out all on her own and uses it anytime she needs to reach something. :) Smarty-pants!

Peace <><

Email Subscription

Dear Readers,
I've added a cool new feature to the bLog... Subscribe to Emily's Updates by Email. :) You can now subscribe to our bLog so when we make updates, you will know. Thanks so much for your loyal visits for Emily's Updates. I hope you have enjoyed the reading. Please take a moment to browse down the page past the archives where you can enter your email address and subscribe.

Peace <><

Just had to post this picture!