How is it Possible?...

Let me put it this way... yesterday and today were jam packed with Mommy and me activities and I didn't take a single photo.  As a matter of fact, I didn't even BRING my camera with me anywhere.

Those that know me well are thinking right now:  "Uh oh.  Something's wrong"

Not taking photos - especially when there are photo worthy moments (like, uh, all the time) is a sure way to expose my state of mind.  When this happens it's bad, folks.  Real bad.

I'm exaggerating... slightly.  But you can consider the above a warning that this post will be pretty depressing, pretty whiny and devoid of any photos to take your mind off of the darkness.  Apologies in advance.

Yesterday and today have been bad days for my Rheumatoid Arthritis and Fibromyalgia.  While I would have loved to theoretically spend the day in bed... that's something that just isn't possible.  Literally.  Spending the day in bed sounds awesome and you'd think it would be just what I'd need.  But for someone with arthritis, spending the day in bed - or spending too much time even "still" is worse.  It causes more stiffening which defeats the entire purpose.  

And another reason why I can't just "check out?"  Brian.

Yesterday we shipped Daddy out of town to enjoy his Father's Day gift:  guilt free alone time.  (Seriously - isn't that the BEST Father's Day or Mother's Day gift?  A day off, guilt free??)  I didn't say anything about my physical issues because, knowing Ed, he would have stayed home and given up his Father's Day.  That wasn't happening.  So I planned an afternoon with my Mom at her place.

But there was still the morning.  It takes me quite a while to get moving on days like this.  I endured a long morning of "Mommy, I'm lonely.  Mommy, I'm bored.  Mommy, I want you to get down on the floor and play with me." and on and on...

We made it to my Mom's retirement village and he had a great afternoon... and so did I.  My Mom's place has an indoor (heated!) pool so Brian and I went swimming for a while.  Fortunately, being in the water is good for your joints!  Right?  Unfortunately, continuously catching a flying four year old off the edge is fun at the time, but causes a painful physical hangover the entire next day.  Lesson learned.

Regardless, the pool was fun and Brian impresses me more and more with his attempts to swim.  He starts two solid weeks of daily swim lessons June 24th so the timing of his newest passion is perfect.  After swimming, we all got dressed and had dinner in the fancy dining room!  Brian was such a good boy... and we both LOVED the food.  My Mom is living the high life, let me tell you!  This place has everything.

When we got home, Ed was just pulling in from his "day off" and we showered him with kisses and cards and then Brian was off to bed.  By that time I was spent in every way.  I could barely think, let alone write a blog.  I feel awful that I didn't have the energy to write a Father's Day post.  Especially since I happen to think I chose the best possible Father for my children.  But Ed couldn't have cared less... he's so not about that.  (I still feel guilty.)

I suspected that I might wake up feeling worse... and I was right.  And as I sat in my pajamas at the kitchen island trying and trying to get myself in gear... and listening again to the chorus of "I'm lonely.  I don't have anyone to play with.  I don't want you to have your "achies" today, Mama." I finally had to leave the room and cry.  And cry.

These are the things that went through my mind:

Why hasn't my RA gone into remission??  My last couple pregnancies it did - and quickly.  Why not now?  It feels like it's getting worse!!

How is it possible that Gavin is dead?!?

These are the days I really miss having help at the house each day.  It was such a giant help for me physically.  And it ensured that the boys were both entertained... among many other things, obviously.

What am I going to do about Brian?  On one hand, I don't want to be enslaved to his need for constant entertainment.  He needs to adjust to our unfortunate new normal - for now, he's an only child.  There isn't a built in playmate around here - even in me.  And with the baby on the way, I need him to really understand that I won't always be available to him when he asks.

But on the other hand - this child has suffered a profound and devastating loss.  He misses Gavin terribly and truly IS lonely.  Which is why I feel so torn and so guilty when I don't spend time with him every waking moment.  It is such an intense guilt trip.

I've received lots and lots of great suggestions of ways to keep him busy this summer... and I do plan to take advantage of a lot of them.  He'll take swimming lessons at the YMCA (Mommy gets to sit on the side and take pictures)... a mini gymnastics camp for two weeks in July at the YMCA... we're going to go to the beach a few times... play dates with neighbors and friends... among many other things.

How is it possible that Gavin is dead?!?

I calmed myself down and came back to Brian and decided that I needed to take him somewhere.  Preferably somewhere that Mommy could sit her decrepit body down and watch the fun.  And, by God, I hit the GOLDMINE this morning.

Bounce U.

I don't know how I didn't know this place existed in my backyard.  On their website it showed they had an "Open Bounce" session from 10-12 for $8.95.  It was 9:30.  I got us dressed and we headed over right away.  At first, we were the only ones there!  It was a big room with four HUGE bounce structures.  Slides, rock walls, basketball, etc.  Within fifteen minutes, two women showed up with their four boys.  The boys (aged from 4 to around 10) introduced themselves (unprompted!) to Brian and took him into their group.  For the next two hours I watched him run, laugh, play, sweat, high five his new friends and jump.  I'm sure the two other Moms might have wondered why I kept wiping tears away, but I was so relieved... so happy... and so exhausted.

When we got home, he gobbled a huge lunch and then... ready for this?... he laid on the couch for an hour.  Bounce U has a summer passport for $50.00 - unlimited open bounce sessions.  Yes, please.

Brian and I had two hours to recover before his friends, Seamus and Molly, were coming by to play in the backyard.  They played on the slip n slide, in the baby pool and water table... it was a total Gavin afternoon.  How I wish he was there with us.  I just sat, mostly, next to my good friend Patti and watched in a daze as the kids splashed and laughed and ran around.

I don't know what I'll do if my RA gets worse.  I'm not sure how I'll function.  I am usually able to handle this so much better, but now it has me completely overwhelmed.  I am tired... Gavin died... I'm pregnant... I'm buried, so to speak, under a mountain of those to-do's that are still not ta-done.  I know everyone says "It can wait!  Don't worry about it!" but they don't understand.  Seeing that mountain of funeral items, memorial gifts, unwritten thank you notes, un-returned dishes, perfectly intact photo boards from the funeral... it's all very difficult to see every single day.  I want to get it all done - and put in a proper place - because maybe, just maybe, it will help me move forward just a little bit.  Just a little bit.  But there never seems to be the time... or the energy... or the un-distracted attention that I need for these tasks.  

I am not looking for anything with this post.  I'm not fishing for sympathy or advice or praise or criticism.  If anything, I ask for your positivity and perhaps a prayer or two.  I'm struggling.

How is it possible?  Really.  How is it possible...

In other news, tomorrow is a big day.  Beyond an ultrasound in the morning where I'll get another glimpse of Hope... Ed and I are headed back to the Emergency Room to meet with the entire team that was in the room working on Gavin on April 10th.  I requested this meeting and I'll explain more about it after the fact.  It will be very different than our meeting with the folks at Gavin's hospital, DuPont.  There will be no cameras, no hospital P.R., no video of our talk.  I am viewing this meeting as a very sacred event so if you could send a prayer my way that this goes the way I envision it, it would mean a lot to me.

If you got this far... thank you.

In Everything I Do...

The last few days have been very difficult for me.  Physically and emotionally - I am just so tired.

Every so often I have a flare up of my Rheumatoid Arthritis combined with Fibromyalgia.  That's what happened to me on Wednesday.  I woke up and, after hoisting myself out of bed, really debated keeping Brian home from school.  I wasn't sure I'd be able to get him dressed - let alone have the energy to drive him in.  When these two things happen at once (which, thankfully, is not often!) it's pretty debilitating.  My fingers are swollen three times their size... every joint aches terribly... my muscles throughout my entire body feel like someone is squeezing them tightly... my skin feels sunburned... I can barely think straight... and I'm so, so tired.  The mornings are always the worst until about noon when my joints calm down.  It really sucks!  And when you're already feeling pretty depressed - having these kinds of physical issues make it seem so much worse.

I did get Brian to school that morning and spent a long day trying to keep up with his energy.  From my perspective only - having to handle my grief, an unexpected pregnancy and all the fears that come with that, Brian's grief and his day to day needs and high energy, Ed's grief and my physical issues that crop up... it is not a picnic.  I have been through a lot in my lifetime, but Gavin's death is by far the biggest challenge of all.  I keep repeating my own private mantra to get me through my days...

"Honor Gavin in all you do.  Honor Gavin in all  you do.  Honor Gavin in all you do.  Honor Gavin in all you do."

My ultimate goal is to not let myself or my family be destroyed by this tragedy.  I want every choice I make to honor Gavin's life - his death - his legacy.  The way I handle myself.  The way I parent his little brother who meant so very much to him.

The way I treat his Father who he loved so dearly.

Keeping that in my mind - and my heart - is helping me get through this.

But it's hard.

My focus is on my home.  On Brian... and Ed.  I don't really answer the phone or even the door.  I'm trying to keep up with responding to emails, but I likely won't reach the middle - let alone the summit - of that mountain.  My Mom and my sister, Bean, came over Thursday night to help me start on thank you notes, for which I was very grateful!  Please know that I (hopefully) won't forget you.  It is a daunting task - for more reasons than you think.  But it is very important to me to acknowledge everyone who has gone out of their way to do nice things for us.  It may take me a while... but I'll get there.

One more complaint and then I swear I'm done.  The really bad thing about having Rheumatoid Arthritis - and Fibromyalgia - especially when you have them at the same time - is that you are so, so tired.  But the logical solution of going to bed is, for me, the worst thing I could do.  Staying in one place too long means you stiffen up and it just makes it that much harder when you get up.  Booooo!!!

I'm done complaining.

I'm tired.

I'm a lot of things.

But mostly, I'm broken hearted.  And that colors everything these days.

I will continue to honor Gavin in everything I do.

The April Fool...

 All day yesterday I was dealing with a Fibromyalgia attack.  I put the boys to bed at their 7pm bedtime, and crawled into bed myself for the night.  Even after an almost 12 hour sleep - the alarm rang too early this morning.  I dragged myself out of bed at 6:45, trading a shower for a baseball cap and extra sleep.  I was looking forward to some alone time this morning with the boys back in school.

Miss Sara arrived at 7:15 and we started to get the boys up and ready for school.  By 8:30 we were outside and as each minute ticked by I got more and more anxious.  Where was the bus?  I had to get Brian to school on time...and back home to greet contractors that would be working all day here at the house.  By 8:35 I sent a message to the bus company... and by 8:40 I was putting Brian in the car and was going to drive both boys to school.

Suddenly Ed appeared in the garage and I heard, "Uh...Kate?  Don't the boys have off today?"  I rushed inside to look at the calendar.

*Blush*

Turns out, the April Fool is me this year.

I feel very fortunate that since my October diagnosis of Fibromyalgia that I've only really had a handful of attacks.  But boy, when I do - it sucks.  For me it feels like someone is squeezing every appendage - my arms and legs and fingers and toes - hard.  And my skin feels like I have a horrible sunburn.  Then the exhaustion - intense, bone crushing exhaustion.  Did you ever have a big, long cry - the kind that wipes you out and makes your eyes heavy?  That's how I feel, minus the crying.  But then all of the above makes you FEEL like crying...you kind of can't win!  But lucky for me - I have a sense of humor.  And cute kids that refuse to stop making me smile.  And Miss Sara who took the boys outside on the swingset for a while so I could stare at the wall and contemplate nothing.  That was nice.  Sometimes nothing is everything.

We did accomplish two important things today!  Gavin's speech therapist, Miss Whitney, asked me to videotape Gavin requesting a toy with his picture cards.  All last week - during Spring break when we had all the time in the world - he wouldn't do it.  Just wouldn't do it.  But today - success!  Here's the promised video:

And - in an amazing feat - we were able to get a urine sample from Gavin!  Actually, it wasn't that dramatic.  As it turned out, he was more than thrilled - giddy, actually! - to sit on our travel potty seat.  Don't tell anyone, but I sat the potty seat on a kitchen chair and put his video player and a toy on the table in front of him.  With his legs dangling in mid-air, there was less chance of him trying to stand up and walk away.  And it worked!  I'll be delivering the urine sometime tomorrow to the woman who did the Thermography testing on him.  Testing his urine will tell us if Gavin is overloaded with mercury in his system.  The results should be rather quick, so I can't wait to report them to you!  

If it turns out that the results come back "positive" - the only treatment is a family trip to Disney World by way of private jet.  Of course, Miss Sara would be required to come along as part of the treatment protocol.  And we'd all be required to stay (in separate rooms, of course) in the Disney Castle suite.

Now THAT is the kind of April Fools joke I can handle!!

Molasses...

Here's the thing about my body.  People generally think it's lying... or I'm lying when I describe it.  I've always had this ability to block out what I'm feeling and act fine.  When I complain, it's generally bad.  Knowing that I have a child who can't talk - but has a LOT to complain about - well, that will keep me from complaining about much anyway.  Truly.

That being said... this has been a rough week for this old body of mine!  I've been in one of those Fibromyalgia fogs and my arthritis has been acting up at the same time.  So basically I have felt like I've been trudging through molasses mentally and physically and saying "owie" with every click of my joints.  I've been in bed early every night - sometimes before 9pm, which is crazy!  And mornings are extremely insulting no matter how early I go to sleep.

But life goes on.  And a good life at that.  Not too long ago I found an old hammock chair I bought in the Outer Banks sometime in the 90s!  I hooked it up to our swingset in the backyard today and the boys LOVED it! 

Gavin was first.  I put a sheet under him so the fabric, which is probably pretty dirty, didn't give him a rash.

He was so cozy and comfortable, he nearly fell asleep!

Next, it was Brian's turn and he laughed and laughed and laughed...

After the hammock chair, I held Gavin as I sat on the regular swing and felt SO honored when he put his head on my chest and fell asleep.  Gavin rarely, rarely snuggles - and never falls asleep in your arms - so this was a big deal.

It's simple moments like these that get me through anything I might be struggling with - physically, mentally or emotionally.

And it's moments like THIS that put it all in proper perspective.  (Note - today was one of those extremely insulting mornings and I traded more sleep for wearing a baseball cap.)

 I'm so lucky to be the Mommy to these two little boys.

One of my New Year's resolutions - next to figuring out how to eat more cupcakes and stop aging  - is to get more active on Twitter.  You'd really be helping me out if you shipped me cupcakes.  But I'd settle for you following me on Twitter.  You can find the clicky link thing on the right side of my page.

Storm of the Century!...

Thank you for the kind and supportive comments and emails many of you sent my way after my last post.  It has been an overwhelmingly stressful month.

Last week, Ed had his first business trip with his new company. He hasn't had to travel since he started with them about a year and a half ago.  He was gone for about three days and I had forgotten just how much I miss him when he's away!   Gavin definitely missed his Daddy. 

They are such good buddies!  

And Brian was SO excited when he got home - especially when he saw that Ed brought him a big Wegman's truck!

This boy loves Wegman's.  He has been filling up the truck with his play food and delivers it to each store.

This weekend we attended a first birthday party in our costumes!!  Our friends, Drew and Melissa (remember her beach themed baby shower??) celebrated the fastest first year on record for their sweet son, AJ.  We all had a great time.

I made the executive decision to not keep Gavin in his wheelchair and I let him down to explore the house and play with the toys that were out.  Drew and Melissa have pets, which were upstairs and away from everyone, but I hated to hold Gavin back from the fun.  Turns out I made a bad decision.  Within a half hour or so, Gavin's face and neck were filled with welts and his eye was puffy and swollen.  I felt horrible!!!  Our first thought was - we all need to go.  But I turned and looked at Brian, who I knew was so looking forward to cake and games and presents, and I couldn't do it.  Ed was the hero.  He took Gavin home (5 minutes away!) and gave him a bath and some Benadryl while Brian and I partied it up.

Watching Brian at the party got me emotional several times.  It was the first time he ever played "birthday party games" like swinging at a pumpkin piñata... 

being blindfolded to play "pin the face on the pumpkin" and more.  He listened to the instructions and waited his turn and was so excited to decorate his own "goody bag."  All totally typical things, so you're probably wondering why I was so emotional.  But that's just it - it was all totally typical.  I don't take that for granted.  Not one bit.

Today has been spent getting ready for what they are calling the "Storm of the Century."  Hurricane Sandy.  Thanks to Hurricane Irene last August, I'm feeling a little more prepared!  Oh man - how could we forget Hurricane Irene.  We had to turn around at the airport and cancel our trip to the Bahamas.  Then we had an earthquake.  Then we decided we'd drive to Ocean City, Maryland... only to be evacuated because Irene was about to arrive.  We got home - and she did arrive.  And flooded our basement.

They are telling us that Hurricane Sandy will be worse than Irene.  Ed worked all day to bring in all the outside furniture - put the grill in the garage in case we need it to cook - move things in the basement in case we get water - and transfer all the freezer food to one big freezer in the basement.  We feel pretty prepared.  The only major thing we worry about is Gavin.  We need a microwave to heat up his pureed food!  Ed has the local Hilton on speed dial.  Just in case.  He was definitely the superhero today!

I was no help at all.  I woke up in crazy pain.  My knees were throbbing... my muscles and skin were burning and tender... my hands and wrists were barely functional... even my shins hurt.  My shins!  What's that about??  I'm praying - hard - that I will start to feel better soon.  Dr. Trish is making headway with me - but she has a big ol' mountain to climb.  And in a few weeks I'll be starting the IV infusions of Orencia.  Something has to give - I really need to start feeling better.  I can't imagine that it can get any worse!!

If you are in the path of "Sandy," please be safe!!

Enough is Enough is Enough...

Today, I'm entitled to a pity party.  Says me.

Yesterday morning I met with my Rheumatologist.  It has been a long time since I had an actual appointment with her.  It didn't make sense to see her during the "trying to conceive" years - I wouldn't have gone on medicine.  But now that those days are behind us... and my RA is getting worse... it was time. I'm glad that she was a friend before becoming my doctor - it made yesterday's news easier to take.

Raise your hand if you've had enough of the Leong roller coaster ride and want to get off.

Yeah, me too.

So the good news is - I still have Rheumatoid Arthritis.  (Hey, I'm trying.) The bad news is - I need to start on medications to prevent joint damage.  What medication will be decided after I get blood work and X-Rays, which I'm getting tomorrow morning.  It will likely be a monthly IV infusion of Orencia.  I'd love to hear from anyone who's taken this!

The other good news is - I have an explanation for the other terrible symptoms I've been dealing with.  The bad news is - it came with the diagnosis of Fibromyalgia.  

I really didn't want to be diagnosed with anything... but especially not Fibromyalgia.  There's such a stigma attached to that.  People think it's all in a person's head... that the person just needs to relax... that it's not real... and on and on.  My doctor told me it's very real, which I knew, but I suppose I was nervous about the judgement.  Then it dawned on me.  Insurance companies have a diagnosis code for Fibromyalgia.  And insurance companies only have diagnosis codes for "real diseases."  So, there you go.

But really.  I think there was one circle of purgatory that Dante left out.  The one for Fibromyalgia sufferers.  Believe it or not - I try hard not to complain.  If you live with me or see me often, you'd never know what I'm feeling physically.  I rarely talk about it - even to Ed.  Every so often I bitch about it here, but not that much!!  Today, I'm letting it out so you have a glimpse into how it really feels to be me these days.

Did you ever have the Flu?  You know the day before you actually get sick when you feel kind of like a Mac Truck hit you?  You can't shake the tired feeling... you're in a daze... it takes all of your energy to do anything... nothing you try 'wakes you up' or makes you feel better?  That's pretty much how many of my days feel.  Now, it's not every single day.  Fibromyalgia is elusive - it comes and goes without any rhyme or reason.  One day I'm feeling great and making plans... another day I'm feeling lousy and canceling the same exact plans.

When my alarm clock goes off in the morning, I'm insulted.  No matter how early I go to sleep - it never feels like enough rest and I just can't believe that stupid black box has the audacity to expect me to move.  But I need to turn it off - so I lift my arm which weighs about fifty pounds and wince while it's on its way to the button.  If I stall, I'll just delay the inevitable, so I rely on adrenaline to get me up.  This is when it really sucks.  Between the Fibromyalgia and the Rheumatoid Arthritis, mornings are just awful.  When the soles of my feet hit the floor - it feels like fire.  Like someone set my poor little piggies who just wanted to get to the damn market on fire.  And my knees feel stiff as boards.  I'm always grateful that Ed's still sleeping because watching me hobble around the bed into the RUDE and BRIGHT bathroom is not sexy AT ALL.  Well, unless you're into that type of thing.  If that's the case, this may not be the blog for you.

I can't even believe how tired I am in the morning.  Most mornings I forget I have medical issues and I reprimand myself for getting to bed late or staying up reading too long or not being as energetic as I used to be or PULL YOURSELF TOGETHER, KATE!!  It's very depressing to feel so depressed - especially when you don't think you're depressed but then the thought that you FEEL depressed when you're technically NOT depressed then, in turn, MAKES YOU depressed.  Did you follow that??

I sleep walk my way through a shower - if I even take one.  It takes an extraordinary amount of energy to get ready in the morning.  I'm not even kidding.  Many days I'll just throw on a baseball cap if I'm not going anywhere.  And sometimes I put on the baseball cap even if I am.  I just don't have the energy to care.  Even my eyeballs hurt, which is one of the main reasons I wear my glasses (besides conveniently hiding my dark circles - brilliant, right?).  

Before I leave the bathroom, I make a last glance at the clock and find myself counting down the hours until I can get in bed again.  And no, not for sexy reasons.  (Well - sometimes for sexy reasons, but mind your own business)  Then I berate myself again - "Why would you wish your day away when you have those adorable children to spend it with?!!?"  The guilt is terrible, which is why I push through all of it to appear like everything is fine.

Morning diaper changes and dressing truly makes me want to weep.  My fingers and hands hardly work - and getting down on the floor is excruciating.  But I want to be present and normal for Gavin and Brian - and pushing through the pain and fatigue won't kill me.  And it's truly impossible to feel more tired at that point, so who cares.

For the last year, I've noticed a decrease in my drive.  I used to be more on top of things - therapy, thank you notes, making plans with people, making my sons' birthday videos, I could go on and on.  I thought for some time that I may be depressed.  Then I thought, maybe I'm just bored of doing all of that or it's unnecessary extra stuff.  Then it was, maybe I'm getting old and forgetful.  But there's a real symptom called "Fibro Fog" that causes difficulty in remembering, concentrating and...oh, I forget what else.  Basically - you're turned into a space cadet.  But not the sexy kind.

One day I thought, "Maybe I should exercise."  That was one quick nano second before I remembered getting out of bed,  which was equivalent to a freaking triathalon.

I can handle the pain (with pain meds that help me get through the day, unfortunately) - but what is hard for me to handle is the guilt.  I want to be the Mom that does more more MORE.  My symptoms lately have been so severe that I find myself putting the TV on so the kids are amused while I sit and stare at the wall.  (It does make me feel better that the wall happens to have their pictures on it)  I have been cutting so many corners because I feel like crap.  But again, if you're around me - you'd think I was just a happy, positive person who happens to be lazy.

Part of me is grateful for a diagnosis that's real.  It will keep me from beating myself up and thinking I can "snap out of it" if I just wanted to.  Now I'll be able to remind myself that "snapping out of it" isn't possible.  And I'm very grateful to Dr. Trish who I know will help me feel a lot better - maybe even 100% - because I don't want to go on medication for this AND my RA.

But much of me is pissed right now.  And I feel I have every right to be.  If I take a step back and look at my life like a stranger would - I'm shocked.  The amount of things that I've been asked to handle has been MORE than I think I deserve.  One thing after another thing after another.  I'm freaking sick of drama and issues and disease and hospitals and therapists and infertility and - need I go on?  It's enough.  

On top of all of this, we have Gavin's genetic results hanging over our heads.  I promise I'll talk about it soon - perhaps as early as next week.  Today I met with a neuromuscular doctor at the hospital that we've never seen before - along with Gavin's neurologist - and we came up with a game plan for what the next steps should be.  But we need to wrap our heads around everything before I even try to explain what's happening.  Please keep all of us in your thoughts and your prayers?  Enough is enough, I say.

One last thing.  My post "On Loss" seemed to touch a lot of people, for which I'm so grateful!  But there was one comment in particular, in my guest book, that I can't get off my mind.  Please go and read the beautiful comment from an anonymous, self proclaimed "old woman" that moved me to tears.  I wish I knew who she was...where she lives...how old she really is...I want to know you!!  If you are reading this and want to write to me, I'd love to become your friend.  Your note made my night and I'm so glad that my post helped heal your heart.  xoxo