Welcome to Hope Rising!

'When you have come to the edge Of all light that you know, And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly'
Author Unknown.

Through this journey, no matter what we've faced....our Faith has taught us how to 'stand' and 'how to fly'

Please join us on our journey of Hope. Some times we are 'standing' and some times we are 'flying' - but one thing is for sure....our two amazing children (Will and Sasha) have been the biggest blessings in our lives.
While they struggle through life-threatening illnesses, they also show us how incredible life truly is. Their joy, laughter, fierceness, and tender spirits lift us and carry us through any storm we've had to weather!

Sunday, February 22, 2009

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") 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 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 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,

Friday, February 6, 2009

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) 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 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 gratefulness cannot be measured in 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 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. only takes ONE person to change ONE life....BE THE ONE.


Monday, February 2, 2009

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 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!

Sunday, February 1, 2009

First entry....

Well, it's my first 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 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 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 ( 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.....