Almost there!!!!

Hi everyone! We are exactly 4 hours 43 minutes out from Woodstock, GA (according to the Magellan). Last night we stayed in Woodstock, VA (gotta love the irony in that!). We got to the hotel at about 10 and it took us til about 10:30ish to get everything up in the room that we needed. The kids were WILD despite our best efforts to keep them quiet. We ended up getting a call from the front desk...apparently the room next to us felt there was too much 'banging' (which would have been Sasha hopping around like a maniac). I told them I was trying my best to keep them quiet but they had been in a car for 12 hours and they were just happy to be out of it. I also told them that maybe they needed to make their walls a bit thicker (I didn't think it was THAT loud!). Sigh....anyway, Sasha would NOT fall asleep - it was about 12:00/12:30 before she fell asleep. Will fell asleep by 11:30 - but he kept saying that he was itchy.
We woke up at 8am - Will's eyes were swollen and he was sniffling like mad - Ralph took the kids to eat breakfast and I got the kids aerobeds packed up. When they came back from breakfast it was time to shower them. I realized that he had a rash from head to toe - poor kiddo...
I gave him benadryl and we headed out. The Magellan took us down I-81 through VA - and, I am SO happy to say that after what feels like ETERNITY in VA - we are now in NC.
I was going to upload more pics from today but I am a little bit challenged when it comes to computer equipment. My card reader wants to RE-load the pics from yesterday AND the new ones and I don't have the option to just 'upload new pics' BAH!!!!
We HOPE to be at our cousin's house by 7pm. It's ABSOLUTELY gorgeous out - mid 70's and VERY sunny (I'm actually hiding under a blanket (sweating my face off) with the laptop because I can't see the screen any other way! ;)
Sasha has been saying that she has to pee and poop literally the entire day....her medicine that she takes for the episodic ataxia type 2/familial hemiplegic migraine is also a diuretic. We never really realized just how much she peed until these past two days - it's like every half hour or so...which makes 'making good time' quite an issue!!!!!
I will update again (hopefully with pics) once we get to Georgia!!!! We're about to make ANOTHER pit stop for Sasha.....

My heart is sad because another Mito baby has earned his wings - Brody was the most amazing and courageous little boy and he was taken from this earth entirely too soon at just under 2 years of age. Please pray for Brody's family - for comfort, peace, and strength. To see what that wonderful family went through because of Mitochondrial disease just makes me THAT much more determined to do SOMETHING.....
Blessings
Stefani

Hello from the road!

Greetings from New Jersey!!!!! We are currently on the New Jersey Turnpike near the Garden State Parkway. We left a little later than expected due to Sasha being up from 2:30am to 5am saying her head was hurting - as well as sneezing and having a runny nose....sigh - I REALLY hope she's not getting sick. We let her sleep in so she could get her rest and we got up at 7 to finish packing the car up. We hit the road about 10 am and have had about 2 hours in stops since, lol! I wish that our bladders would all get on the same schedule!
Sasha and Will are doing pretty well so far in their seats - asking every so often, "Are we there yet???"
Our Magellan says we have 878 miles to go til we get to Atlanta...we're thinking we'll hit a hotel around 8ish to give the kids a break and to get some good sleep!
The rental car that was donated to us to use with unlimited miles by Enterprise (THANK YOU!) is a brand new Kia Sedona with just over 9,000 miles (actually, it now has 10117 thanks to us! The minivan is HUGE inside and it has given us A LOT of room to get it all in there. It is REALLY hard to pack enough stuff for a 1-2 week stay (since we don't know if Sasha's getting sick we have decided to pack extra in case we have to stay longer to wait out the sickness OR if things will go as planned). We have brought enough medicine to do 2 weeks worth of infusions - so we *should* be all set....
We've been having fun taking pictures along the way....
We stopped for lunch and ate outside...suddenly Will screamed his little head off like a girl - I nearly fell off the bench! Turns out a FLY landed on the table we were eating at (HOW DARE IT????). Then the dreaded Seagulls decided to join us. Will and Sasha were terrified of the birds...to the point where it was a bit absurd - and, to make matters worse, they got 'up close and personal' inviting themselves to 'join' us - which did not go over well. The kids made spectacles of themselves screaming in sheer terror about the "Eagles" (as they called them).
Needless to say....lunch took FOREVER because they were SO wrapped up in whether or not there were 'flies' or 'Eagles' that they couldn't focus on the food. (*note to self, outdoor picnics and my children do not blend well!)
SO...I'll leave you with a link to some pictures and we'll post a bit later with another update!
http://www.facebook.com/album.php?aid=17346&id=1036926732&l=2ea70
Blessings
Stefani

A long week - but FINALLY things are in order!

On Monday we received a call from Dr. Shoffner's office saying that the fresh muscle biopsy and pathology referrals weren't in the BCBS (ins. co) system and they thought they'd have to reschedule the whole trip. I tried calling Blue Cross (BCBS)and they were CLOSED due to a stinkin snow storm - I was pretty worried that we weren't going to be able to go. I spent ALL of Tuesday on the phone between the PCP's office, Atlanta, our metabolic doc, and her case manager at BCBS trying to sort it out. It was looking less and less like we were going to be able to go to Atlanta. I think I cried more on Tuesday than I have in 3 years. I was so frustrated and I felt like I had let Sasha down when she really needed me most. I was devastated....and VERY angry that the insurance company was holding it up. We finally got word that they would approve the procedure and pathology - but the reviewing doc at BCBS said she was going to 'revoke' Dr. Shoffner's visit because Sasha can see 'neurogeneticists' up here - they won't pay for him if she can see someone up here. I totally freaked - because, to me, it showed that they weren't looking at the referral OR her case (she's been seeing a neurogeneticist for a year and a metabolics doc for 9 or so months and THEY are the ones referring her out to Dr. Shoffner). I called the case manager at BCBS and just lost it - I told her how NO doc wanted to touch Sasha with a 10 foot pole with all her diagnosises and the ones who WERE working with us were at a point where they couldn't do much more for her without Dr. Shoffner piecing this altogether. She reassured me and told me that she would do her best to fix this for us. I called several times that afternoon to see if the 'verbal' approval had 'hit' the system (so we could make the biopsy appointment) and also to see if they pulled the referral for Dr. Shoffner. Nothing......just the same as it was before....2 visits to see JUST Dr. Shoffner. I was beginning to get worried...time was running out.
Sasha's wheelchair arriving was the ONLY bright spot in that day. It fits her just right, she loves it and it doesn't have that 'wheelchair' look - it looks like a glorified stroller...which is exactly why we wanted this particular type (for those who are wondering - Sasha does not need this wheelchair on her 'good' days - these are times when she can run, jump, play and BE a normal child - - - on her BAD days - she struggles with simple things and has limited energy, and sometimes overexertion causes some pretty 'not fun' stuff to happen to her - so this will just help alleviate all of this and give her the ability to do all the stuff she wants to do without having to worry about limitations!).

So...Tuesday was a sleepless night for sure....
I called Wednesday morning twice to see if it 'hit' the system yet. On the second phone call, the rep I was speaking with told me that the review department told me to call back THURSDAY and it should be all set. I totally went bonkers and said that we didn't have an extra day...I told her that I was NOT getting off the phone and that THEY would push the written approval through NOW as we've been waiting for something since the 23rd and our appointment was in jeopardy. I went on to say (in a VERY loud and stern voice) that my husband would lose a week's pay (due to FMLA) and my kids have been out of school all week to keep them from getting ill AND our travel arrangements were also at risk...so anything other than an approval pushed through immediately would NOT be acceptable. The poor woman put me on hold and came back about 5 minutes later - and she put the clinical reviewer on - and TA-DAH! the referral JUST went through! THEN I spent ALL day waiting to see if the surgeon still had a slot for Sasha - which, they did!
SO....after countless tears and MUCH stress and frustration - I received a call around 4ish last night saying that we were ALL SET to go to Atlanta!!!

All in all I spent about 9 1/2 hours on the phone back and forth with everyone in the past 3 days - Of course, I truly thought we weren't going so I hadn't packed a darn thing! EEK!

Today I am going to start packing - but I have a million things to do - let alone meet with Sen. Fargo and 2 state reps in Boston with the kids to talk about legislative efforts for Mitochondrial Disease (talk about CRAZY huh!?!?).

After some deliberation, we decided to stay at our friends house on the way home (instead of staying there on our way down) - just to avoid any extra exposure to illness on the way down - so we're likely going to leave Saturday instead of Friday - which is good because it gives us more time to pack and get ready AND we won't be driving in CRAZY rush hour traffic...phew.

I'm not feeling fantastic today and haven't decided if I am getting sick (OH NO) or if it's from all the stress of the past 3 days.

I want to thank you all for your encouragement and hugs along the way...I am HOPEFUL that Dr. Shoffner will give us GOOD news and tell us that he doesn't think it's Mitochondrial Disease....but we are prepared for anything that he has to say. PRAYING for the best!
We will update frequently while on the road and be uploading pictures to our blog (which will be updated more frequently than this with pics and little stories) - if you want to follow along there - http://hoperisingup.blogspot.com/
Please pray for safe travels, good health, a good appointment and a smoothe fresh muscle biopsy and recovery for Sasha.
Blessings!
Stefani and Ralph

A little update....

Nothing fancy or creative in this post - just an update on what lies ahead!!!

Okay...so this week was CRAZY. Sasha is FINALLY looking better - it only has taken 3 1/2 weeks! Last week she looked terrible - she was pale and she was really wiped out the whole week - it was tough for her.

Both Will and Sasha's doses for their Vivaglobin (sub-q infusions) were increased because of all the breakthrough infections they were getting. We got the shipment Friday and they will infuse Tuesday with the new amount. The immunologist also put Sasha on a daily antibiotic (that she will start as soon as she's done her 21 day course of Augmentin) because he's not happy with all the break through infections she's getting and he wants to give her system a rest.
Will is doing MUCH better and he's just the sweetest little cherub!

We were getting things ready for the trip. Last week was all about finishing up recording for Project: Cure (which is coming along nicely, thanks to all of Mark's hard work!) so that Mark could do his part without me holding it up!
Check out the 'teaser' song for Project: Cure at: www.myspace.com/projectcure2009
(that's my song!!! Mark did an AWESOME job mixing and mastering this!)
The Project: Cure website is under construction but the URL is www.projectcuremusic.org and, once it's fully up and running I will post it 'officially.'
SO...we did hit a BIG snag last week....
Our plan was to take our tax return (we usually get a big return because we claim 0 and have more taken out throughout the year)...so we were going to take our return and purchase a used vehicle that would be reliable enough to get us to GA as we felt our minivan would NOT be a great choice. I realized on Wednesday that it hadn't come yet (state had come but not federal) so I called the IRS - turns out there was a 'processing error' on their end and it was going to delay our taxes 3 weeks! WHAT?????
Seriously? SO, I explained to them that we were counting on the money from our tax return to cover not only the expenses to get down there but also another vehicle. They put us into the Taxpayer Advocate Office and they were going to try to expedite this so we MIGHT get it the day we leave...MIGHT.
SIGH...
I was starting to freak out a bit....
I called a friend who said he'd do what he could to help....he called in a favor and I received a phone call Friday that a car rental place in our area was going to let us use a minivan rental FOR FREE to get us to and from GA.....HOW AMAZING IS THAT.....and to our friend....if you're reading this....THANK YOU FROM THE BOTTOM OF OUR HEARTS!!!!

It SO relieved the stress of figuring out 'Plan B' (since we didn't have one....sigh).
I swear that Murphy's Law has a bulls-eye right on our family.....if it CAN happen - it happens to us.

Truth be told....I kept thinking of the bible passage that states that God never promises you a life free from strife because you believe and follow Him - but He promises that He will be there and He will guide you through this...and every time things seem to be down and out....we always get a 'life-line' ---- always re-confirming that passage.

Ralph and I went shopping last night to get the rest of our stuff for the trip (thank GOD we did because we're forecasted to get 15+ inches of snow between tonight and tomorrow night/early Tues a.m.).

Next week will be CRAZY!
I will be packing and cleaning (so that when we get home the house is CLEAN and we can 'decompress' without having to do much of anything!) today, Mon & Tues while Will and Sasha have their cousin over for today and tomorrow to help pass the time!

Tuesday Sasha's wheelchair/stroller arrives!!!! She will be fitted in it and they'll show us how it all works - so we WILL have it in time for the trip!!!!! PHEW!

Wednesday we have a meeting with the school to talk about doing some type of Primary Immuonodeficiency Disease (PIDD) awareness with Will's class for some time in April. We are very excited about doing this because we know it's a part of Will's life that we want his peers to share an accept without fear. Later in the afternoon I have an appointment with another family member in Boston - she will be seeing Sasha's neurogeneticist and hopefully hearing her story and her issues will help the doctor to see Sasha's picture and our entire family picture more clearly.

Thursday will be busy! As of right now I am tentatively scheduled to meet with Sen. Fargo and Rep. Atkins at the state house to discuss the legislation that is going to be up for vote soon - it will put more funding in for research for a cure/treatments for Mitochondrial Disease. I also have another appointment in the day as well - so hopefully all will go as planned. I sent out letters to 10 legislators on Friday (at 7 a.m. lol...yes, this is what I do with my time when I can't sleep and the kids are still sleeping!) and I got those 2 responses immediately!

EARLY Friday we will be leaving! We will be doing a little blog journal along the way - taking pictures and telling stories of our trip down - I can connect to the internet with my laptop and my cell phone...how cool is that!!! We're stopping in NC to stay with a friend (what a blessing that is) for 2 days and then we'll be heading into Atlanta for the 9th - we'll be staying at my cousin's house (another blessing!)while we're there. Sasha's appointment is on the 10th and the Fresh Muscle Biopsy is on the 11th. We will stay as long as it takes her to be ready to travel back home.

It will be a long journey...but we hope that the beginning will at least be FUN for the kids ---- when we arrive in Atlanta - it will be different...but there's no reason the way down can't be all fun and games!!!!! We're going to make the best out of this time.....

To the people who helped make this trip possible (whether it be lodging or transportation) THANK YOU FROM THE BOTTOM OF OUR HEARTS!!!!!! You can't even begin to understand how much it means to us. We TRULY are blessed!

Okay....I'm off to do some more cleaning and packing while there's still time!!!!!
Please pray that everyone stays well and that things continue to fall into place so this trip can go off without a hitch!!!!!
We'll keep you posted!!!!
Blessings
Stefani and Ralph

The whirlwind continues!!!!!

Well, it's been 2 weeks since my last blog entry...amazing how time races on! With 2 weeks to go until Sasha's trip to Atlanta....I'm trying to tie up loose ends and get organized (what a feat this is!).

As we prepare for our journey to Atlanta for Sasha, I've found myself struggling with the gravity of this trip on many levels.
While we are really fortunate to be able to see such an amazing physician - the circumstances surrounding this visit are not optimum. This physician usually takes a while to get in to see - after talking with Sasha's metabolic doctor, we got an appointment for just over a month. Insurance in our state usually denies 'out of state' physicians because we're in Massachusetts - the Mecca of the Health Universe....we were approved with no issue.
There are so many other factors that complicate this all - the good news is that Ralph was able to file for the Family Medical Leave Act (FMLA) so he wouldn't get in trouble for missing so much work....problem is, he won't be getting paid either!
Because of both kids immune deficiencies, in order to ensure that neither child gets sick (because as you all know, if one gets sick - so does the other) we have to pull both Will and Sasha out of school the week before we leave for Atlanta (so more school missed, sigh)....but, honestly - how much would that stink to get to Atlanta and have Sasha get sick - and not be able to go under anesthesia?
THEN....due to the immune deficiency - an airplane journey would not be the best choice (small enclosed area during cold/flu season spells disaster with a capital "D")....so we must DRIVE to Atlanta....
We have been BLESSED to be able to have a friend who is letting us stay with her for a few days halfway through our trip in Raleigh. We also were lucky enough to have a cousin allow us to stay with him in GA (he's 40 minutes from the doctor's office) so we won't have to pay for a hotel while down there....we are just so fortunate.

The appointment will be 2 hours long - this doctor specializes in rare diseases (her episodic ataxia/familial hemiplegic migraine that she already has a diagnosis for - and he specializes in Mitochondrial Disease - which they suspect- but have not confirmed - in her)....he will have his hands full with our family history for sure.

She will also have to have a resting metabolic rate test done - and I have NO idea how she will stay still for this (20 minutes resting with a mask on and 10 leads....on a 3 year old no less!)
They will likely do a battery of lab work and whatever else he feels necessary.

The next day she will be put under anesthesia and have a fresh muscle biopsy done. From what I understand, they will make an inch long incision into her thigh muscle and take part of her muscle out.

If all goes well she can leave the hospital later that day. We were told to plan to stay in Atlanta an extra day in case there are complications....we plan to stay a few days extra because I worry about her taking the long drive back immediately after the procedure....so we will go at her pace, not ours.

The results will take 3-6 months to come back (yes...3-6 months....) - they do CRAZY tests to the muscle tissue that they take - and those tests take time...lots of it....but we're willing to wait if it brings us closer to an answer.

I struggle with Sasha having to go through all of this, but I realize that, after the year she's had: 5 comas (that we know of), one seizure, decrease/loss of skills over the summer (thankfully they returned with many hours of PT and OT), stroke like episodes, the ataxia and the extreme fatigue - I realize this IS necessary...I just wish it wasn't....I mean, what parent wants to have their child go through anything that causes any type of discomfort or pain????

There is a part of me that absolutely dreads this appointment because I am terrified of the doctor confirming that Sasha does in fact have mitochondrial disease....it would be the worst possible outcome as there (currently) is no treatment (besides a vitamin cocktail) and there is no cure (YET)...and it is progressive....but I would honestly rather know than pretend it doesn't exist - with knowledge there is power.

I will luckily have access to the internet via my cell phone (how cool is technology these days?!!!) and laptop - so I can update all along the way ---- I actually am going to do a photo journal of our trip down to Atlanta!

When we get home, I have to finish working on Project: Cure with Mark (music compilation that will be releasing May 15th at the Beer and Wine Tasting fundraiser!) and I am optimistic that we'll get Project: Hope done for the 15th as well (my solo CD).

I have to get ready for the Blood Drive (that's April 18th) as well as handle the massive undertaking of the Beer and Wine Tasting (thankfully I don't have to do this alone!).....but remembering how much time and effort it took last year - I know there will be no rest for the weary - but it's ALL worth it!

The good news is that I will be doing an interview for NECN in early May - which will get the word out about all of what has been going on with the our efforts for the Immune Deficiency Foundation (IDF), United Mitochondrial Disease Foundation (UMDF), and the National Ataxia Foundation (NAF) and we can raise some awareness for these diseases!

We are just so incredibly blessed to have amazing friends and our loving family to support us through all of this.
I often hear, "I just don't know what to say..."
Trust me....I've been on that boat MANY times.....sometimes there really is nothing TO say...
You don't have to say anything....just being there....lifting spirits and praying and offering support means more than you will ever know!

I send my prayers and encouragement to those of my friends out there who are on a journey like ours - it is never easy....and it's far from fun - but knowing that we're not alone makes each step a little easier to take...each bit of bad news a little easier to bear, and each moment of triumph that much sweeter....

Blessings to you all,
Stefani

2 years ago today.....

2 years ago today.....

I remember vividly the drive into Children's Hospital. It was the longest drive of my life. Thoughts were racing through my head, my stomach was twisted and tied up in knots.....I felt like the world was spinning viciously around me - I was terrified.

It was just after 9 a.m. when we finally reached the hospital. We pulled Sasha (17 months at the time) out of her carseat and put her into the stroller. She was in such a great mood - smiling and giggling......despite her feeling under the weather battling another infection.

I had this heaviness in my heart for I knew that this was a day that would change Sasha's life forever.
Little did I know what it would really mean......

Sasha had her first infusion of Gammaglobulin (blood product) for her immune deficiency 2 years ago today....
The first infusion was not fun - but not horrible either....the worst part was actually the blood draw beforehand to get her baseline levels (kidney, liver functions as well as her basic lab work)....it took 20 minutes to find a vein. My heart was breaking as she pleaded for them to stop. At that moment, I wanted to wrap her in my arms and take her away from the nightmare of a day she was having.....but I knew this was best for her (well, I was hoping it was). I had never been so torn in my life. I knew this was the 'right' thing to do, but as a mother - watching her cry and plead - well, it felt SO wrong......

The actual infusion went rather well once it was started...the nervous nurses were terrified to do her infusion as she was the youngest (at the time) child who they had done sub-cutaneous Ig on...all the other little ones received their infusions via IVIG...(today, I bet they do this on young ones all the time!)

After the day was done - we gave her a big 'prize' for being a 'brave' girl and took her home to rest.

The weeks that followed were not fun - week after week the infusions brought many side effects and doubts on my end....the poor immunologist got an email almost weekly from me asking if we had done the right thing. He was so kind and understanding and continued to reassure me that some children just take time to adjust to the product and to give it a 'good 4-6 months' before we called it quits.

I am so glad he reassured us. I am so glad we listened.

2 months later Sasha developed a serious kidney infection that left her extremely ill over Easter. The first day or two in the hospital were very scary as we thought we could lose her. Besides the first 2 months of her life (which were touch and go) - we had never seen her so ill.
Ralph and I truly feel that Sasha's saving grace was being on the infusions....had it not been for them, we don't know what would have happened.

It took time for her to get used to the infusions, but she eventually did. To see how far she's come in the past 2 years totally amazes me. What she (and children like her) has had to endure is more than any child should have to endure in a lifetime - nevermind 3 1/2 short years.

This Wednesday she had her infusion and she stood there as brave as could be - she didn't cry, she didn't fight it, she didn't flinch when either of the needles went in. She put her backpack on - we put her pump in - and she played for 2 hours. The end of the infusion was hard for her (some are harder than others) and she ended up going to bed early because she was tired and had a headache - but she was a trooper through it all....as always.

Today I reflect on the power of medicine....the power of trust....the power of faith....the power of HOPE....the power of generosity...the power of the Gift of Life.

When I think of how dramatically her health has changed since February 6th 2007 - my heart soars. These weekly infusions allow her to LIVE life instead of just 'existing' between illnesses.

Every time Sasha (and her brother Will) have their weekly infusions, I think about the thousands out there who gave something of themselves so that my children could experience life without the fear and limitations.....my gratefulness cannot be measured in words.....how can you thank someone for giving your children the gift of life???? Words could never be enough.

Tomorrow we will hold a blood drive in honor of ALL the children of Team Hope.....6 children total - including her brother. ALL of these children receive these weekly infusions and benefit from the Gift of Live that blood donors give when they donate blood.....To me, it will be an 'extra' special day - a day that reminds me of WHAT drove me to getting out there and making a difference.....sharing our lives, our story, our joy, and our HOPE.

Without blood donors, our children could NEVER 'LIVE' life the way children should.....it would be illness after illness.....

Today, I look ahead with GREAT HOPE because I KNOW that Sasha (and Will...and others like them who receive these life-saving infusions) has a CHANCE to experience the JOY of LIVING!

If you are able to donate blood - please consider giving the gift of life....whether it be tomorrow in Billerica at our drive - - - or another day in the future.

Even if you're not local - please consider finding a blood drive in your area.

Remember....it only takes ONE person to change ONE life....BE THE ONE.

Blessings
Stefani

2nd Entry.....the world around us goes on....

It's funny how the world around us continues to move along despite what goes on in an individuals' particular life...

I was driving home from picking up my daughter from school this morning and I glanced over to the woman in the car next to me....she was bee-bopping along in her own little microcosm without a care in the world. I glanced in my rear view mirror and a gentleman appeared to be having a heated discussion with someone on the other end of his cell phone. I was hurried in my travels - completely intent on getting home the quickest route possible so I could squeeze lunch, paperwork, therapy, and a moment to catch up on my computer tasks.

The moments still continued to pass at their ever monotonous march - yet, I imagine that, to the woman in the car next to me, those moments were likely carefree. The man behind me I would reckon was wishing to possibly rewind time and avoid the discussion he was enduring at the present moment....and I.....well, I was wishing I could just slow each moment down just a little bit so there'd be more time in the day to get everything done while still finding the time to enjoy my family.

Our existences are separate yet connected in their own unique way. Each person possesses their own trials, tribulations, joys and triumphs. To me, each trial, tribulation, joy and triumph is real unto the eye of the beholder.....
All too often I hear my beloved friends comment on how their struggles are nothing compared to what we face. To hear that breaks my heart because the reality is that each of us have battles to wage - and, to each of us, those battles are real, difficult, and sometimes those battles even bring us to our knees. There is no battle that I view to be less than or more than another. We are each given what we can handle - and that load is never something to be judged by another.

What connects us is that we ALL have a battle to wage....we ALL are fighting for something in our lives, and we ALL rejoice and have triumphs. The battles, the wars, the celebrations and the triumphs may not be the same as the triumph and celebration of someone else....but they are battles, wars, celebrations and triumphs nonetheless.

Today, I was reminded of this as I thought of the woman in the car - celebrating a joyful and happy moment in her own little world....and the man behind me who was having an argument with someone on the other end of the phone while I was stressing about finding enough time in the day.

Life still went on....for all of us.....but in different ways and with different outcomes and results.....

Every day is a new day....and life goes on.....no matter what the battle, the war, the joy, the triumph.....

The blessing is that we get to share these with each other. We can embrace each other during the battles and wars and we can rejoice with each other through the triumphs and celebrations.

Personally, I look forward to sharing the good and the bad with my friends because it enriches the soul and lifts the spirit.

I'm all for the good times, but when the bad times come my friends, please know that I am here - no matter what is going on in my own little world here!
Off to play a board game with the kiddos!!!!
Check ya later!
Stefani

First entry....

Well, it's my first entry....so I guess I'll just start simple.
I'm sitting here at my computer watching Will, Sasha and Ralph clean up the playroom.
Simply put, it's business as usual here.

I've considered all of the things that the week ahead will hold....and, for the moment, I am enjoying a lazy moment - there will be none of that next week as we will be at 'full speed ahead' with planning, organizing, and coordination of our trip to Atlanta for Sasha as well as getting things in order for our blood drive.

It's funny, I don't think I can really recall when I last had a 'Lazy Day' - but, in all reality - I don't really mind being busy....it keeps my mind off of things.

We're holding a blood drive on Saturday, Feb. 7th here locally. I always get really emotional when I think about what we're 'really' doing. We're not just having a blood drive, we're giving people an opportunity to SAVE a life....it could be a father, a mother, a child, a husband, a wife, a
sister, a brother, a cousin, an aunt, an uncle, a grandparent.

How amazing it is to be able to provide people an opportunity to save a life! I feel like it's not only a privelige that we can do this for those in need - but it's also something I am compelled to do.

I'll never forget the first blood drive Ralph and I did back in 2007. It was a small blood drive, Children's Hospital sent their bloodmobile to us - we had 36 slots to fill. All of the blood donations that day went to Children's Hospital patients and the Jimmy Fund patients. When all was said and done, I sat alone in the warmth of the sun and just cried tears of joy because I realized the impact that ONE person had. Each blood donation had the ability to save the lives of up to 4 children. We had 27 pints.
That day, because of our efforts and the AMAZING kindness of close friends, family and even complete strangers, we were able to change/save up to 108 children!
Stop for a moment and think about that.....108 children had the chance of being helped - and all I could think of was, what if my children were part of that 108 that were in need....MAN it hit me.
I decided that, from that point on, it would be my mission to get out there and do blood drives as much as possible. I figured, if, in one day we could help 108 children - imagine what we could do if we did MANY more days like this. It was decided....we were 'officially' on a mission!
I was going through the totals this morning of all of our blood drives combined - it felt really good to see a working total. So far, our drives have brought in a total of 544 donors! If you figure that each pint can help up to 3 adults or 4 children, that's a potential 1694-2120 lives that our community has touched!
Anyway, Saturday kicks off our season of blood drives, awareness, and fundraising for Team Hope (www.teamhope.info) and we're SO excited for all of the Promise this year holds.
We hope our local friends and family can find some time to come out and either donate blood or help out with sign in/canteen!
Okay...I'm signing off for now. I have to get ready for my aunt to come here (SO excited to have her with us!) and then I'm off to sing at Grace.....
Stef