Hope is a Journey….

Archive for November, 2011


Feeling or showing an appreciation of kindness; thankful.

“WITH gratitude, ALL life appears as a blessing – WITHOUT gratitude, ALL of life is perceived as a burden.”

As the holiday of Thanksgiving approaches fast, my mind turns towards all the things in life that I am grateful for.   It’s amazing at just how much we really do have when we stop and count our blessings.

Often we find ourselves caught up in the hustle and bustle of our daily lives…

We tend to forget to take the time to stop and smell the flowers

We get caught up in the materialistic possessions

And often disregard the importance of the more simple or mundane things in life

We tend to focus on what we don’t have

And sometimes miss the beauty in all the wonderful thing in life that we do have

We worry about the “What if’s”

Instead of being present in the moment

I often hear people say, “I’m SO sorry that you have to go through everything you do…it’s just awful”

Yet I can tell you that, through even my greatest struggles and hardest moments, I have found great blessing, joy, comfort and peace

Of course, if I could choose an easier path, I might deviate from time to time….

But I truly believe that this path is one that God intended me to travel…the good, the bad, and even the ugly.

You see, I believe that you can’t truly appreciate the beauty of the rose without knowing the power of the thorns that protect it….

You see, if I never had gone through this…..

Then I wouldn’t truly understand or appreciate the true and remarkable beauty in all of this:

Yes folks…I am blessed.

I am so blessed to have the people in my life that I do.

I am blessed to have the most amazing, kind, and incredible husband who has carried his vow of ‘in sickness and in health‘ and ‘for better or worse‘ like a badge of honor instead of acting like it was a curse.

I am blessed to have 2 beautiful, brilliant, and radiant rays of HOPE to guide me even on my darkest nights.

I am blessed to have loving parents who support, encourage, love, and guide me, Ralph and the kids in whatever way we need.

I am blessed to be close with my aunt and be able to share my struggles with her without fear of judgment.

I am blessed to have friends who ‘get‘ my journey and walk with me through it (no matter how treacherous the terrain).

I am blessed to have friends who don’t ‘get‘ my journey but try to walk with me through it anyway (no matter how treacherous the terrain).

I am blessed to have some of the most talented and compassionate doctors working on my team and on my children’s team who are willing to go the extra mile to give us answer, peace, comfort, and support.

I am blessed to have a roof over my head and food on the table every meal…every day.

I am blessed to have a God who has been my Rock and my Strength without fail.

I am blessed to have a wonderful service dog (Beast) who has given me my freedom back.

I am blessed to have more than I have not.

I could go on and on (truly, I could)….but let’s just leave it at this:

I am blessed.


You see, the way I look at it is this….

You must strive to


As hard as it is….you must

On the things that TRULY matter.

And ALWAYS  remember….

May you all have a blessed and memorable Thanksgiving. 

Hold on tight to the things that matter and let go of the things that you can’t control.

Life is precious, not promised – so make the most of every moment.

GIVE of yourself and LIVE like each moment is your last.

Love and Light (and immeasurable Gratitude),



You are a masterpiece

You are a work in progress

Your canvas was once a blank slate

But your journey has been carefully documented over time with countless colorful strokes from  many different brushes

Layer by layer, you have made your way through this world

And along the way you’ve even had some amazing additions to your canvas from the people in your life

Sometimes you have struggled with the darker brush strokes

But without the darkness, the beauty of light has no contrast to blossom from

Remember, that we don’t always see

the whole picture

And we have to trust in the pallet

And sometimes it’s hard because you feel alone and empty on your journey

But there is so much color ahead…awaiting your arrival

Please take heart my friend…the final strokes have not been made

You are a work in progress…

Your troubles will pass like the seasons

And your brush strokes will be plenty

So take comfort in my words

And NEVEREVER forget….that you are a masterpiece

Love and Light,



This past week, I’ve seen a common thread flow through my Facebook newsfeed….perspective.

I don’t know if there’s a delicate way to put this – so I’m just going to lay it all out there.

Everyone has their own reality – and when YOUR reality doesn’t fit into the nice neat package they formed for themselves…

It’s a tough pill for them to swallow.

Some people can’t understand how ONE person or ONE family could go through SO much…

Some people judge you because they just CAN’T fathom it…

Some gossip because they DON’T believe it….

And some just walk away because they either CAN’T handle it or DON’T care to.

What people seem to forget is that there are feelings on the other side of their judgment, disregard, gossip, confusion, and abandonment….there are people who are already going through one of the most difficult times of their lives who NEED you…

They NEED you to try to understand that…..

This is NOT the life they had hoped for

This is NOT the path they voluntarily chose

This is NOT a walk in the park

This is NOT a laughing matter

This is NOT something to gossip about  or judge

This is NOT the time to leave

This is NOT the battle they wish to fight alone

Try to understand that…..

They NEED your support

They NEED your understanding

They NEED your comfort

They NEED your strength

They NEED your love

Having walked this path before – my heart aches when I read the posts of others who are hurting or struggling because the people they care for and trusted have walked away during the time in which they needed them most.

I know what it’s like to sit in a hospital bed for days hoping that a family member or a friend will stop in and break up the monotony.

I know what it’s like to have family and friends pretend that your fight doesn’t exist.

I know what it’s like to have family and friends judge your journey and criticize your every move.

I know what it’s like to have family and friends go on their merry way…without you.


I also know the true joy that is felt…

When someone DOES show up

When someone DOES stop and listen

When someone DOES offer to help

When someone DOES try to understand

It’s truly…

Sometimes I don’t think people understand just how much what they say, do…or don’t do – can hurt someone in need….

until you walk a mile in someone else’s shoes.

So here’s my advice to those who have ever judged a journey, gossiped about someone struggling, pretended you cared just to shut someone up, ignored a person because their ‘crisis‘ was ‘too much to handle‘ for you and you couldn’t be bothered:

You may have never had your life ripped out from underneath you….and I pray that you never do….because you could be on the other end of this blog post struggling with the heartache that many of us do.

You may have had your own battle,  so you think that everyone should be able to deal with what life throws your way…and I pray your heart softens…because we are all built differently.

You may be afraid to open yourself to struggle because you don’t know what to say….and I pray you will come to understand….sometimes it’s not about ‘saying‘ anything, it’s about ‘being‘ there.

Of course…

You probably have no idea what it feels like to be

Because of something that is far out of your control.





(Because you may never be able to get it back)

In the end…

And no matter what you think of me…

You aren’t without your faults….so I ask you….

And to my friends who are feeling lost, abandoned, alone, misunderstood, angry, hurt, and frustrated….here is my advice for you:

The hurt would be less.

Try to remember….

Take comfort in the fact that…

And that’s something so many of you do more often than most!


(Even if someone else thinks you aren’t)


(Even if it hurts like hell)

And yes…



Try to remember….

Because, quite honestly….

And, as hard as it is to face sometimes…

I know it’s hard not to be disappointed because…

But always remember this…..


In closing….a few thoughts I personally wanted to share….and, my hope is that EVERYONE keeps these things in mind:


Love and Light,


The Straw That Broke The Camel’s Back….

Maybe it was a long time coming….maybe it was the straw that broke the camel’s back…maybe it was just too much all at once, but these past two weeks have been a HUGE reality check and I’ve really been having  a tough time.  It’s hard to accept that I’m not a real life ‘superhero’….

And that I can’t leap tall buildings in a single bound.

Yep…I am definitely HUMAN (gasp!) and I have had a rough go at it.  It’s not really that anything in particular was ‘too much’ – it was that everything seemed to happen all at once and just pile up.

And, that…in and of itself isn’t necessarily ‘the straw‘…you see…when it starts piling up – you can ‘compartmentalize’ things and organize the chaos….

It’s like Jenga….you have it JUST right…and you’re carefully trying to arrange it to perfection….and then someone goes and pulls out a critical piece…

Yep…that’s THE STRAW

So here’s a recap of the last 2 1/2 weeks….

*(By the way…I’ve been working on this blog for a week now…just so much going on, there hasn’t been time to get it all in here!).

A few weeks ago I met with my new cardiologist. He was fantastic.  He listened, he asked lots of questions, he took his time, and he was well versed on my condition.  Towards the end of the appointment, I felt quite unwell and he looked at me and asked if I was okay.  I told him I felt hot and like I was going to pass out.  He had me lay down on the table and I proceeded to hive up all over my body and get flush and sweaty.  He asked how often this happens, and I told him it is unpredictable and that it is frequent.  He said that I was having ‘neurocardiogenic events‘ and that he felt that I had more than one autonomic dysfunction and treatment was going to be challenging as you give one medication to fix one set of symptoms and you make the opposite end of the spectrum’s symptoms worse. Of course, nothing can be easy with me.  For those of you who know me well….you know…if it can go wrong, it will…and, it has!

He hooked me to up a 48 hour blood pressure monitor (a cuff around my arm that took my pressure every half hour during the day and every hour at night) and a 48 hour holter monitor (a heart monitor)and did the testing while off IV fluids.  The results showed marked hypotension and bradycardia along with periods of tachycardia (sometimes even at rest) up to 150 beats per minute.  He was very concerned about this and scheduled me for another ‘Tilt Table Test‘ as he felt that my autonomic dysfunction has changed even from the last test in June.  It was important to repeat the test as it will help decide which medications will be best and which will not be optimal for use given the results.  I had the test done and preliminary results show that there is certainly a change.  😦  For certain, my Postural Orthostatic Tachycardic Syndrome (also known as P.O.T.S.)  is worse than it was.  The only way I can explain it is this way:  Ever run a great distance (one that you’re not used to running)? Remember that sensation you get after you’re done…the heart pounding out of your chest, feeling a bit winded, extremities weak????  That’s what P.O.T.S feels like to me….when I go from sitting to standing, or sometimes just when I am standing my heart rate will jump 50 or 60 points, sometimes it will even double….and, if you match that up with periods of VERY low heart rate (40 beats per minute) and feeling really woozy then, it’s an all day (unpredictable) roller coaster.

Mix all this up with the fact that 2 of my physicians want me to have a port placed and I am just NOT ready for that step.  I guess, it’s more just that it makes it MORE real that the disease process is progressing – and I can’t stop it.  Right now, I’m still not really wild about my PICC line…..but it IS keeping me out of the hospital and more stable than I’ve ever been.  It’s hard sometimes to focus on the ‘positives’ when so much ‘negative’ is going on….but this is my mantra:

We had a crazy few weeks with follow up appointments for the kids.  Sasha and Will are still dealing with the same issues as before – they are stable, minus Will’s increased fatigue and autonomic dysregulation (blood pressure fluctuations, feeling like he’s going to pass out and going pale, blood sugar fluctuations, temperature dysregulation – mostly with the heat)  as well as newly found to have the same lid droop that Sasha’s had all her life – it’s called “Ptosis” (pronounced “Toe-sis”).  Sasha was found to have a Venous Hum (which is new – and isn’t a cause for concern but it sure sounds pretty crazy when you listen to it!).  Their muscle fatigue and weakness persist and their hypotonia has not improved.  The neurologist increased one of Sasha’s migraine meds as she still doesn’t have fantastic control over her migraines and she’s also having some attention issues in school (see below) and this medication can help with attention also – so we kill two birds with one stone instead of adding in another med (which none of us are willing to do).

2 weeks ago, Will started having dizziness at school that progressed to feeling like he was going to pass out, nausea, headache (in the back of his head near his neck) and numbness in his extremities. I picked him up at school and took him to his pediatrician.    His neurological exam was essentially normal but even the doctor agreed that he looked pretty punk and that the symptoms were concerning (especially since he doesn’t ever complain about much of anything).  She called the neurosurgeon at MGH and from there, the neurosurgeon instructed us to go to MGH ER for evaluation.  After a very LONG day – it was decided that his symptoms were likely a result of his Chiari Malformation worsening or being exacerbated and, that, since his symptoms were mostly resolved, we would schedule an outpatient urgent MRI (he needs sedation – he can’t sit still for that long) and be seen directly after that to discuss if he needs to have surgery to fix it.  Easier said than done, I might add…..you don’t just get these appointments to just ‘fall’ in your lap…..they are hard to come by because you have to coordinate with anesthesia. As it stands now, it looks like his MRI is this upcoming Monday morning….and again…..I keep telling  myself…..

The next day we had a meeting at school for Sasha and we discussed how much difficulty she was having in school.  I must say, though the meeting went pretty well (our school has been very attentive to the needs of my kids and truly do care about what goes on with them), it was hard to hear that she’s struggling so much emotionally and academically, and that – despite how hard they are trying to understand her needs,  they seem to feel that drugging my kid up to make her pay attention is the proper solution. It has been clearly stated that, while her attention issues are certainly present, they are absolutely connected to her energy/arousal state (have you ever tried to pay attention when you are exhausted and feeling tired or crummy?), and also the fact that she lives with chronic headaches (again, have you ever tried to pay attention when you have a headache?)…which has been demonstrated on every EEG that she has a wave pattern consistent with what folks with migraines have.  She’s already on more medications than we’d like her to be on just to keep her symptoms at bay – NO ONE (neither Ralph nor I nor her medical team) is willing to put her on another drug. I did feel like we were just not on the same page….and I just wanted to pull my hair out!

I have to say, I was a little stunned that they didn’t have any other ‘plan of action’ or ‘solution’ for her when they (the school) were told that drugs were off the table.

Is this what this day and age educators have as their only viable solution – to drug our kids up so they’ll shut up and pay attention? I was definitely disheartened by this – but I still must add, they truly do care about Sasha and we LOVE LOVE LOVE her teacher and principal, but it is hard not to question the direction things have moved in with society as a whole.  I mean, do we have NO other solution???  I did…and so did her developmental psychologist – and we offered those solutions to the school at this meeting.  To be honest, they didn’t seem really ‘wild’ about any of the recommendations.  We want her back on an IEP with accommodations  – we’re waiting to have a ‘team’ meeting and we’ll go from there.  Meanwhile, the teacher will do the best she can…and she’s a darn good teacher, so I know Sasha’s in good hands…still I left the meeting pretty frustrated…

When we got home, I barely had a moment to decompress from the meeting and we had to do their infusions.  They went fairly well – until the end.  When Ralph was disconnecting Sasha from her infusion, Sasha started to freak out and scream that there was something on the radiator.  She said she was seeing colored swirls.  When she finally calmed down, we asked her to draw what it looked like (she said it was everywhere she looked) and she drew what looked like an ‘aura’ for a migraine.  The only thing was that she did not have any pain with these visual disturbances.  When I told her that I get these weird color things too, she seemed to calm down a bit and relax.  She was embarrassed to tell us she was seeing the colors because she was scared that ‘monsters’ had gotten into her brain and messed with her eyes.  Geesh, the things kids think of, eh?  When I told her it was not the monsters and it was something that many people see, she seemed to just melt into me with relief.  I called the neurologist the next morning and they said that it was likely more a silent migraine.  We know that Sasha has had numerous types of migraines – so this is just added to her list (we’ve had many on the listed on this link).  We are going to keep a close eye on her and hope that this isn’t something that is going to happen regularly. I HATE that she has to go through this, it’s just so unfair.

Then, I found out that our state insurance had been shut off because I didn’t turn in a form (it must have come in when I was in the hospital in September and I just never saw it).  UGH!  We got it resolved by the next business day, but it was a lot of phone calls, stress, and aggravation…exactly what I didn’t need after the week I had.

Yep folks, I am surely having a rough time with the fact that life isn’t what I had expected it to be…and I know that this too shall pass…..but for now…right now…I’m going to allow myself to struggle and learn to embrace the difficult moments because I truly believe (I HAVE to believe) that these moments are the ones that will help me to grow, learn more about who I am, and appreciate all the wonderful things I have in my life.  I certainly can’t change ‘what is‘ – but I can shape ‘who I am‘ by how I choose to let the struggles effect me.  I recognize and accept that I will not always be able to keep my focus on all the “positives” but I will also strive to focus on the fact that…..

Life is what we make it – I get that….but sometimes, the hand that you’re dealt is a tough hand – one that many may judge and not understand. The key is to not let it consume you, but to remember that these are the moments that ultimately end up defining you.

We all have our hardships – and none are ‘worse’ than others…we are given what we can handle (though sometimes I feel like enough is enough).  I believe that the following statement applies to ALL of us – in our own unique situations:

Tomorrow is another day…and I will embrace it with HOPE – because, while I don’t know what the day holds…I know this is for sure…

Why do I share this with you all?  Not because I want a single shred of sympathy – but because I know I am not the only one out there in this world who struggles, hurts, feels overwhelmed, and wishes for something different in life.  I share this with you all because I want people to know they’re not alone….and that there is no shame in being REAL with yourself and those who are in your life.   I share this with you all in hopes that this blog reaches and helps someone who was in need of comfort or encouragement….

So yes…there will always be the straw that broke the camel’s back….we all have our ‘breaking point‘ – and that’s the moment that we get off the camel, give it attention and great care – allow it to heal….and learn to get to your destination another way….cause…..

Love and Light,


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