Hope is a Journey….

Archive for May, 2012


Imagine a life in which THIS….

and THIS

is the norm.

Imagine having only a week or two (sometimes days) between illnesses

Imagine countless birthday parties, holidays, family engagements, special moments all missed due to illness…

Imagine that even the most incredible adventures could pose risk…

Well, these 2 precious children and thousands of others don’t have to imagine any of this….they live it every day due to a condition called Primary Immunodeficiency Disease.
What is Primary Immunodeficiency Disease you ask?????

Primary immunodeficiency diseases (PI) are a group of genetic diseases in which the immune system’s ability to fight off infection is greatly reduced or absent. These problems lead to an increased susceptibility to infection. There are more than 150 different types of PI.  In the United States, there are approximately 250,000 people diagnosed with PI and thousands more go undetected, in fact, the NIH estimates 500,000 people may have PI and have not yet been diagnosed.

According to recent studies, it takes an average of 12 years from onset of symptoms to date of diagnosis.  That’s 12 years in which treatment is delayed, illnesses aren’t carefully monitored or  managed, and infections can take deeper root causing permanent damage to the organs in which they affect.

There are so many reasons that this statistic is unacceptable – but the most important reason it’s unacceptable is because there are people suffering unnecessarily due to lack of understanding, education, and awareness about this disease.

April was Primary Immunodeficiency Disease Awareness Month, unfortunately, life in April was quite busy for me and this post got lost in the shuffle….but, it’s better late than never. The way I look at it…every day should be a day that awareness should be raised for this cause – and all the other causes that need a voice.

Ralph and I have dedicated ourselves to raising awareness for this disease since 2007 – to be the voice for our children, others in our family, the people we know, the people we have met, and even for the people we have yet to meet.  When we first learned of this disease, it was all about Will and Sasha – but then our horizon changed when we met some incredible people and suddenly, it wasn’t just about Will and Sasha anymore – it was about SO much more than us helping the kids – it was about changing lives, making a difference, and being a voice.

This journey, this life, this moment – is a complete blessing no matter how hard the road – we all have the power to be the voice of change, the voice of reason, the voice of comfort, the voice of hope.

I do it for THIS:

Because THIS is what life should be about:



or THIS:

Today, I challenge you ALL to take a moment and ‘Be A Voice‘ for those with Primary Immunodeficiency Disease (PI).

There are many ways you can do this:

  • You can donate Plasma!  Find out if there is a Plasma Donation center near you — these donations directly help those who suffer with PIDD.
  • You can Donate Blood.  Some areas do not have Plasma Donation Centers, but rest assured, some gammaglobulin products are made with the help of blood donors from the Red Cross
  • You can become a Bone Marrow Donor — Bone marrow transplants are the only hope for children suffering the most serious and life-threatening PI’s.
  • You can donate Umbilical Cord Blood — a great way to help stem cell research, the best hope for a true cure for PIDD.
  • You can run a fundraiser to benefit the Immune Deficiency Foundation (it’s really easier than you think and IDF will help you every step of the way!)
  • You can help raise awareness by talking about it with your community or hosting a booth or table at a community event with literature about the disease (the IDF will give you all you need!).
  • Talk about those you know who live with Primary Immunodeficency Disease (like Will and Sasha).  You never know, you may help someone find an answer to a lifetime of unexplained illness.
  • You can write your Congressman and Senator to protect access to IVIG, a life-saving therapy for many PIDD patients.  Due to reduced Medicare reimbursement rates, some patients are unable to get their IVIG.  Unless laws are changed, private insurers could follow Medicare’s lead.  Visit the IDF Action Alert page to send your letters today!
  • You can use Good Search when you surf the internet!  This is an easy way to raise money for the IDF . . . simply choose the Immune Deficiency Foundation as your beneficiary, and every time you use their search engine, IDF will receive a small donation.

There is SO MUCH you CAN do…and EVERY gesture you make, EVERY action you take MATTERS more than you will ever know.

I will leave you with this poem I wrote back in 2007:

Be the Voice

I’ve been down this road
With the wind at my face
I’ve tried to be brave
And keep with the pace
Sometimes full speed
Is really reverse
And sometimes the blessing
Is also a curse
Sometimes our weakness
Becomes a great strength
Sometimes we struggle
To go a short length
Sometimes it’s scary
And you feel so alone
Sometimes you wish
That your heart had a home
In a world where normal
Is never the norm
You’ll find your peace
In the midst of this storm
You’ll find your courage
To hold your head high
You’ll find the strength
To look up to the sky
You’ll find the wisdom
To make the right choice
You’ll find the spirit
To be the voice


The ball is in your court…it’s your move!

Love and Light,


Sucker Punch

Just when you thought it was safe to breathe easy….you get the wind knocked out of you!

Aside from  a short hospitalization at the end of March (due to a GI bug), things had been going really well up until 2 days ago.  I had been enjoying relative stability and I even was able to ‘officially’ be discharged from the home nursing agency that I have had since January of 2011.  It was a good feeling to make progress.  I even began to get the house organized – a complete purging, and it felt awesome.  I guess I might have been a bit delusional thinking that ‘normalcy’ was within my reach – and what a sucker punch it was when reality ripped that thought from my grasp.

Monday morning I woke up feeling pretty crummy.  I couldn’t quite put my finger on it other than nausea, headache and spasms in my jaw, but I knew something was off.  I had an appointment with my primary care doctor to have stitches removed from my finger (I lacerated it the week prior and had to get 4 stitches), so I discussed it with her at that point.  She ordered lab work and I went on my merry way. The rest of the night was really rough.  I began to have burning and twitching as well as spasms all over my body,the nausea, headache and jaw spasms worsened.  I was unable to eat or drink, think clearly, and I could not sleep. Sasha was supposed to have an early morning appointment with the airway management clinic – but I canceled it (which I *never* do – but I was just in no shape to go anywhere).  I was up and said goodbye to the kids – and, as soon as Ralph returned, I told him we had to go to the hospital.  My heart rate was high, I was having palpitations and was disoriented.  I knew that it was not good.

Apparently by the time I got to MGH, I looked as rough as I felt because I have never been moved through triage, registration, 2 doctors waiting for me in the back, IV nurses dueling IV sticks, more than 15 vials of blood, a chest x ray, and a CT scan all done and admission decided within 2 hours – a room within 4 hours.  I found myself on Bigelow 9 – and the staff was ready and waiting for me (I think there were about 5 people in room).  They are definitely a well oiled machine here compared to other floors I’ve been on.

My lab tests were off and my lactic acid was elevated, which was no surprise to me as the muscles in my body were on fire.  They attempted to run 2 IV’s at once, but I just couldn’t tolerate it and then the 2nd IV blew, so I currently have only one (which was fine with me as it was quite evident that I am not very graceful navigating an IV in the left arm, right hand, heart monitor leads, and a pulse oximiter lead).

Ironically, my sister was just down the hall in another unit on the same floor and Chelsea (my sister by spirit!) was in the same wing down the hall but one floor up.  Talk about timing….

I had an EEG this morning.

There was no evidence of seizure activity (yay) but there was some ‘left to right variance’ – which can be normal or it can mean that there has been a structural change (not yay) – so I am going for a CT scan of the brain soon.  I am trying not to freak out, but given the intense headaches and thee change in how I’ve been feeling over the past month or two – it does worry me some.  😦

Beast was really on point as he was pretty much on top top of me through the worst of it (he is not typically the type of dog to ‘snuggle’ – so if he lays on top of you for more than a minute or two, he’s telling you something is wrong.

Ralph, of course was amazing – he stayed by my side the entire time and was so good to me (as usual).

My Dad came to the rescue (as usual) and picked up the kids from school and then he, my mom and aunt took care of them, got them their night meds and put them to bed.

I had several friends offer to help – yes, these people rock!

I had countless messages and posts offering prayers and support – yep, these people are totally fantastic.

While this unexpected and rapid onset crisis was a huge sucker punch that knocked the wind out of me – my friends and immediate family breathed the HOPE right back into me.  I can’t even begin to express how incredibly blessed I feel to have people like this in my life.

In any event, this gives me an opportunity to finish 2 posts that I had started but not finished (because I was busy catching up on ‘life’ and getting organized!)…so stay tuned….there’ll be another post likely tomorrow!!!!!!

Thank you again for all your prayers, love, support, and kindness.  I am truly blessed.

Love and Light,


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