What About Brian?!?...

This post is not for the faint of heart.  (Which, unfortunately, includes ME at this very moment!)

I started writing on CaringBridge back in early 2008, when Gavin was just months old and very sick in the hospital.  I created the CaringBridge page for the purpose of keeping family and friends in the loop about his health and progress.  I found, quite by accident, that writing was helping me cope with being cooped up in a hospital room with my first born son... pumping day and night with people in and out of the room... missing my husband who would come every night after work and then go home so he could sleep before work again... sharing a room with other patients and their families that would be admitted and discharged, admitted and discharged... and sleeping/eating/sitting/pumping/writing/crying on a metal cot next to his metal crib.  It was not easy - and writing about it helped me get through it.

Then we came home.

Gavin came home needing therapy - practically every day.  He was on a feeding tube.  Oxygen.  He had severe reflux and would cry day and night - night and day.  I continued writing on CaringBridge even though a few people told me I should stop.  That CaringBridge was only for "patients" while they're in the hospital.  (not true) My internal argument was that now I was the patient.  My writing would continue, dammit, no matter what anyone said.  Once again, it was helping me cope.

Then I was pregnant... Brian was born... life was hectic... I was juggling Gavin's many, many needs and an infant... and then a toddler... and then Brian's speech delay... and along the way, infertility and miscarriages and IVF and Darcy's death and therapy and more therapy and trying to keep things "normal" for everyone.  I would write and write and write and, once again, it helped me cope.  I wasn't writing for feedback (although I did receive some excellent tips from other special needs Moms along the way), but I got it anyway.  And sometimes... it was not so nice.  For example, I wrote about my idea of "Love Bombing" - not knowing that it was actually a real "thing."  I had been noticing that Brian, at the time, had been acting up - something that was not normal for him.  He was little and had no way of communicating what was really going on inside of his little mind and heart - so he used his behavior to try to tell us.  I decided he needed a day devoted to him - a Love Bomb Day.  That focusing just on him would show him that he was valued... important... and that we could have fun just the two of us.  Once I instituted random "Love Bomb Days" - his behavior changed.  And I enjoyed those days with Gavin, too.  I got some heat for that on this blog... and in my email.  Comments like, "Gee - I wish someone would take me out for the day and spoil me every time I whine and act up!"  and  "The way you spoil your children is insane." or "You're rewarding negative behavior!"   What is Love Bombing?  It's just time that you are 100% devoted to your child and have fun together.  Where you say "yes" to everything (within reason, obviously).  Ice cream before dinner?  Sure!  Want to play this game for the fortieth time?  I'd love to!  Want me to watch you bounce in a bounce house for an hour?  Sign me up!  I'm pretty sure they had entirely missed the point of "Love Bombing."  Whatever.  I moved on and I'm sure they did, too, to another blog.

So, today was one of those Love Bomb days.  For no reason - it wasn't spurred on by anything.  That's how it usually works around here.  Every so often, for no good reason and spurred on by nothing, the boys would be surprised with a Love Bomb day with Mommy or Daddy.  It is something we all love.  Brian chose to go to his favorite place, "Arnold's Family Fun Center."  This was one of Gavin's favorite places, too!

Brian bounced...

...and jumped...

...we played a TON of video games and carnival like games...

...we did Duckpin Bowling and, when he kicked my butt, we celebrated his big win with a Hershey Kiss.

When he saw the big animal figures near the carousel, a memory was triggered for him.  He said, "Mama - take my picture in the lion's mouth like you did for Gavin!"

So I gladly did.

Then... "Take my picture with the bear for Granny!"

So I did.  Gladly.

We went to Target afterward because they sell these orange "push pops" (filled with orange sherbet) that Brian loves.  And I let him pick out a toy.  We had an awesome afternoon together.

So, when I came home to an email that brought me down from my "Brian high" - it was the one final push that brought down the entire house of cards.  It was the last straw.  My breaking point.

This is what it said... 

< Kate, I'm very concerned about Brian's emotional well being.  All day long you're posting on Facebook and all it is is Gavin.  We hardly would know that you had another son.  Don't you think he'll look back on this time and feel forgotten?  Your readers want to get to know Brian and not just hear about Gavin.  I'm sorry for your loss, but please think of your other son. >

Oh, did this make my blood boil.  Typically I can write things off that don't apply to me or our family... I can chalk things up to people just not knowing the entire story.  But today it pissed me off.  I can't help it - I'm human.  This particular person is not the first to make this kind of comment.  There have been others... little comments under photos of Gavin and emails that were a little more subtle.  And I'm sure, even after this journal entry, they will still arrive.  Yet I will still continue to write tonight - hoping that I can get a message across to all of you.

Please.

Stop.

Here is the deal.  Gavin died.  We were left in shock.  And I was shocked to be pregnant.  And we have Brian, who misses his brother terribly.  But he's also four and grieves WAY differently than an adult.  He's active and busy and talkative.  My days are exhausting.  I have been determined not to complain - at all - about my pregnancy.  Mostly because I truly have nothing to complain about.  But if you're wondering... I have suffered terribly with allergies this entire time.  Constant congestion, feeling like I'm in a fog every day, blowing my nose, clearing my throat and having sinus headaches.  I also have pretty bad (okay, really bad) sciatica which I always get.  And at night?  I have restless leg - another common pregnancy deal for me.  I'm tired - but I can't be.  I'm mothering Brian all day.  I'm dropping him off and picking him up from Pre-School - overjoyed to see him.  I'm playing with him and reading to him and turning on the TV at times for him so I can just... sit.  I lay with him every single night at bedtime after a book (I never laid with him at bedtime until Gavin died) and we talk.  He always wants to talk about Gavin and his feelings.  I treasure this time.  Brian is handling things so well and - quite frankly - we are handling him quite well.  If you are new to the page or to my blog and are one of the ones wondering, "What about Brian?!?" - then I would urge you to read more.  Go back to older posts.  Get to know how we operate as a family.  You'll see how much we dote on Brian - in the past and now.

For a while, Brian and I were going through the photos on the computer to choose to share on Facebook.  He loved it.  Know why?  Because these were HIS memories, too!  Many of the photos and videos I posted had him IN them.  And many of the ones I posted were CHOSEN by him.  He has been loving this walk down memory lane and laughing at his baby pictures and videos.  Especially the ones of him and Gavin together.  So, I was not ignoring Brian to sit on Facebook.  And then I figured out how to schedule posts ahead of time - which is what I do now.  The photos and videos are chosen the night before and I schedule them to automatically post every two hours from 8am to 8pm.

The Facebook Page has become a bit of a memorial page at the moment as I post these memories of Gavin until the end of his life.  It just kind of happened that way.  I still write about Brian on that page - when there's something I want to share that I don't write in my journal entries.  Going through Gavin's life - just because - is important to me.  And knowing that others are learning new tips and tricks that I picked up along the way - things that can help the "Gavins" in their lives - means so much to me.  And I appreciate... SO much... the kind comments and the wonderful support.

Grieving publicly is a choice I have made - but it isn't up for dissection.  If you read my blog posts... or if you knew our family... you would never think that Brian's needs - emotionally or otherwise - were neglected.  And if you think that the amount of photos on my page reflect anything - the amount of attention he gets, favoritism, neglect - than we have other issues to discuss.  As much as you shouldn't look at a photo and assume I'm a good housewife or a fashionista or even an "amazing" anything... don't assume you know the whole story if you DON'T see a photo.

Listen - Gavin is dead.  Once I finish going through these pictures... I won't EVER have any other new ones to share.  You can't begin to imagine how much that wrecks me.  I took photos of the boys nearly every single day.  I really need you to realize the gravity of this for me - when I get to April of 2013 in my photos... it's over.  I will be at the end of Gavin's life.  Just as I've always needed my writing to cope... I need to share his life in this way to cope.  After I reach April 14th, 2013 - the day Gavin died, the day I turned 43 and the day we discovered Hope was in my womb - it will be over.  And then, you will grow tired of seeing way too many photos of Brian and Hope.  And I'll sit back and anticipate the emails that will say... "What about Gavin?"

So, please... 

Brian is great.  

Hope is growing and kicking like crazy.

Ed and I are putting one foot in front of the other.

We are trying our best to honor Gavin in every way while balancing that with parenting Brian and making sure he feels loved and heard and important.

I am grieving out loud - which is not normal, I know.  But this outlet ensures that I can leave it all here and then be "there" for Brian and Ed and Hope.

I hope that helps clear things up.  Thank you for your compassionate understanding and seeing the pain through this long rant.

Walt Disney World - Day Two...

This morning, after breakfast at the hotel, Brian had his first exciting moment of the day.  His very first bus ride.  It did not disappoint.  He must have told me four times on the shuttle from our hotel to Magic Kingdom, "Mama - I'm having so much fun."

We arrived at Magic Kingdom around 10:30 and just about 10:40 is when my waterworks began.

I was so emotional - it took me by surprise!  And then, as soon as we walked onto Main Street - a parade started.

Music and dancing and colors and energy - Gavin would have loved it.  I couldn't control the crying at that point and was glad it was a parade with many floats.  It gave me time to collect my sad self.

We all wore our Super G shirts in honor of Gavin.

Including Miss Sara!  

We got lots of questions from people - asking what the shirts meant.  It was always a struggle for me as to whether we should tell the story or not burden them with an awkward, sad moment at the "happiest place on Earth."  I would say 9 out of 10 times we told them about our Superhero, Gavin.

We had lunch at the Crystal Palace.  We weren't sure how Brian would be around the characters - whether he'd be scared of them, shy or excited.

I'll let the photos tell THAT story...

He was loving every moment of the experience.  He even got into asking them for autographs!

After we left the Crystal Palace, the skys turned dark and the wind started blowing - it was clear a storm was brewing.  We ran to shelter and stayed under cover until it blew over.  We all had ponchos, but none of us were interested in walking in the rain.  As an aside, I looked around for my fellow curly haired folks in this humid Florida weather.  Hardly saw a one!!  I'm guessing they were all the people with hats on.  (Note to self:  break out the hat tomorrow.)

Brian was very interested in seeing the Disney Castle.  I think he had an idea in his head that we could go inside and he'd see a house with all of his favorite characters living there.  He was slightly disappointed.  But I faked it when I brought him down a hallway and told him whose doors were whose, but they were out walking around the park and not home.  The poor child knocked on every (employee entrance) door in that hallway.  But he fell for it and can't wait to tell his friends that he was "inside Disney Castle!"

The three of us followed Brian's lead when he nixed the Alladin Magic Carpet Ride for a tour of the Swiss Family Robinson Tree House.  He couldn't wait to climb up to the top.

I couldn't wait to meet him at the bottom!  I was not wasting my energy on 500 stairs!  Miss Sara and I happily waved to Brian and Ed from below.

By this time - about two o'clock - Brian had had it.  He was tired from the (regrettably late) night before and very hot.  All he wanted was to go back to the hotel.  I was worried because I knew we had reservations at "Chef Mickey" at 6:40pm where he would meet Mickey, Minnie and friends.  I was hoping we could get him to rally.  I chose for us to go on "It's A Small World" - a calm boat ride in the air conditioning.  The poor kid was not impressed.  Every turn into a new room of countries I heard, "Is this the end now?"  I can't say I blame him - it is a bit of a boring ride.

Ed and I chatted after we got outside.  We reminded ourselves that we weren't interested in forcing Brian to do anything he didn't want to do on this trip.  Dragging him around to experience things if he was miserable would be selfish.  But we also thought it would be a big bummer if he missed out meeting Mickey Mouse.  So, while I went for a walk to Disney's "Guest Relations" - Ed, Sara and Brian waited for me in Tomorrowland.

Disney customer service is incredible.  I'm not sure how they manage to satisfy everyone, but it really seems like they do as a rule.  I explained our situation - how Brian really wanted to leave and our Chef Mickey Reservation was hours away.  Next thing I know, she changed our reservation for less than an hour from that moment.  I was so relieved... and grateful.  I ended up crying in front of the poor Disney lady.  I was just a mess today.

When I got back to the crew to tell them the good news, we all decided to go on the "Buzz Lightyear" ride.  I was shocked that Brian was for it - and we had just enough time to go on the ride before leaving for dinner.

Ed and Brian were the perfect pair shooting their missles at the aliens that were floating around in 3D!

Sara and I were in the car in front of them laughing our heads off.  It was hard to tell who was more intense about defeating the aliens - Ed or Brian!  They both had SO much fun.  It was the only ride Brian went on - and I'm hopeful that it will be fresh in his memory tomorrow when he'll have more rides like that to choose from!

We got to Chef Mickey's and were thrilled that Brian had found his mojo.  He was much happier and really, really psyched to see more characters.

We ended the dinner with a napkin twirling dance party and Brian was getting the whole room going!  Check it out...

I was so happy to end our day on such a happy note.  I know Gavin was right here with us the entire time.  I could see it in his brother's shining, happy eyes.

We got back to the hotel for a bath and a normal bedtime for Brian and he's been sound asleep for hours now.  I'm hoping a great night's sleep will help him attack tomorrow.  We've decided to go into Animal Kingdom with a shortened plan for the day and let Brian be the ultimate tour guide.  This trip has truly always been about him.  It's the ultimate Love Bomb from his Mommy and Daddy.

Pre-School Plans...

Today was a tough day for me.  My cold is getting worse and I spent most of the day battling a headache, clogged ears and fogginess.  You know that foggy cold feeling?  So, "Mommy Boot Camp" turned into the "Mommy Survival Club."  The poor boys did not get "fun" Mommy today.  Well, I kind of flickered between fun and zombie so I guess it wasn't all bad.  Dr. Brian was on me all day to "keep drinking water and tea, Mommy" and I was a very good patient.  And I've been taking oil of oregano three times a day.  I HAVE to be better for my nephew, Dan's, wedding on Saturday!!!

I made a decision today about Brian.  As I mentioned a few weeks back, he has been "kicked out" of his current preschool because he no longer needs speech services.  Great news!  But in looking around at local preschools, it quickly dawned on me that a summer session is not the norm.  Gavin and Brian have both been in school through the summers.  I would hate to pull him out of his current school - have him sit around all summer while Gavin's in school - and then plop him in a brand new school after months out of his normal routine.  

So I talked to his teacher today and she said it's okay for him to stay through the summer.  By Fall he'll be ready to start a new preschool program and I know he'll do great!  Brian has come a long way.  To think that this time last year he was barely talking.  Ha!

When the boys were babies and it was clear that Gavin wasn't "catching up" developmentally, I spent a lot of time reading about child development.  It's something that's always interested me.  Some people may not agree with my parenting style when it comes to certain things, but I feel like it's working for our boys.  Definitely Brian, for sure.  Like sleeping.  Ed thought I was nuts, but I rarely (if ever) let the boys cry at night.  My feeling was - babies need reassurance that you're there.  So, for the first six-nine months, I answered every call.  They got accustomed to me "being there" and, I think, felt secure.  When it came time for them to sleep on their own and wait for us to "wake them" in the morning, they did!  I felt like I had spent months proving to them that I was on the other side of the door...so once it really closed, they knew I wasn't far.  I won't count Gavin since he is literally zipped into his bed, but to this day - Brian will NOT get out of bed until someone comes in to start the day.  On days that there isn't school, the boys don't see our faces until 8am.  No one told Brian - ever - that he had to stay in bed!!  Trust me, I realize how lucky we are.  Perhaps it's just their personalities and absolutely nothing we did... but that was just my style. Plus, I loved - and I mean LOVED - those late night snuggles.

I also closely watch their behaviors for clues.  This is what prompted my "Love Bomb" idea.  I knew when Brian would start acting out in ways that weren't like him that he was actually trying to communicate a need - but didn't know how.  Don't get me wrong, there is discipline in our house.  But truly, it's not needed that often.  We're big on communicating feelings and always tell the boys that it's okay to feel frustrated, sad, mad, lonely, etc...  (I can't wait until Gavin can communicate his!)  When Brian can communicate his feelings he is less likely to act out.  

Having Brian so closely after Gavin was such a gift in so many ways.  But the extra effort I put into wanting to understand child development - especially psychological development - was one of the biggest.  I definitely want to be "on top" of any sibling issues that may crop up as Brian gets older and he realizes more and more that his brother is "different."

I found this piece circulating on the internet today and thought I'd share it with all of you.  If you click it, it will get bigger so you can read it.  It really sums up how I feel and think!!

Share Your Heart...

As many of you probably know, I have a lot of love and loyalty towards CaringBridge.  CaringBridge is where my "blogging" began... in the corner of a hospital room next to Gavin's crib when he was two months old.  For the first few weeks, I used the site just to update friends and family to let them know how our very sick baby was doing.  But it turned into so much more.  CaringBridge allowed me to share my fears, my thoughts, my joy and sorrow...along with Gavin's health updates, his progress and the exciting day, months later, when he finally came home.

I thought that was where it would end!  But when I came home and we added nursing, feeding tubes, therapies, and multiple medical issues to our daily schedule - I realized just how important writing was to me.  It was my therapy.  It helped get everything out of me which, in turn, allowed me to be a happier, more positive Mommy to Gavin.  It also connected me with other parents who were going through similar challenges.  They even featured our family's story on their site.  (You can see that here)

I started on CaringBridge on January 24, 2008 and left there for this blog on May 31, 2011.  I am in touch with some of the CaringBridge folks periodically and am always more than grateful to support them in any way I can.

So, when they asked me to submit an entry in their "Share Your Heart" contest, I was thrilled!  Entrants  submit a photo or video and a short write up about a way they "share their heart" with loved ones.  In my entry, I explained how I  "Love Bomb" the boys.  You can read more about my Love Bombing days here.

Anyone is free to enter - and the entry with the most votes when the contest ends March 6th, 2013 wins TWO iPad minis!!

CaringBridge did not ask me to promote or share this on my blog.  If you notice, I very rarely (if ever) promote anything outside of our family.  I have a hard time saying no, so if I never do it at all - I never have to pick and choose who to say yes and no to.  Get what I mean?  But because CaringBridge has been such a big part of our lives, I am more than happy to share this contest here.

Click HERE to get to the voting page.  It will ask you to connect through Facebook.

There's one more thing...

If I am to win, I would like to "Share My Heart" with one of my readers by giving away one of the iPad minis here on my blog.  I don't know how I'll do it yet, but I want to come up with a contest of my own.  So, head on over and vote - the iPad mini could end up being YOURS!!

Oh, and this is also how I share my heart.  Nightly dance parties in the kitchen.  These boys have skillz...

While you're in the voting mood... don't forget to vote for Chasing Rainbows in the Parents Magazine Blog Contest! We're in the final stretch!!

Gavin Got Love Bombed!...

Today was all about Gavin (Well, except for one small part when he helped me pick out makeup but let's not go there).  The whole day was about him! (Well, except when I turned off his movie in the van after the fifth time Little Einsteins came on and I just wanted to hear some country music but let's not go there, either.)

Today... Gavin got LOVE BOMBED!!

I was so happy to spend the day with just the two of us.  I love this little boy!!

We started off our day together like we always do on Fridays... at our joint Dr. Trish appointment.

It was a perfect kick off - Gavin loves being there and giggled through the whole session.

After she was through working with him, she mentioned that she felt drawn to work on his leg and thigh muscles.  That was no surprise to me - he's been doing such a great job walking lately.

After our appointment, we headed to Arnold's Family Fun Center and the two of us were SO excited to see that they added a new ride!  Before, there were only two rides - the Merry Go Round and a Train.  But they added something awesome!  The FROG HOPPER!

Gavin and I went on this together when we went to Dutch Wonderland and he loved it.  Today was no different - we "hopped" three times in a row!  He laughed and laughed and laughed.

After, we walked around and had some fun with their very old and very silly statues.  Like "Scary Rabbit"...

And "Lame-O Lion".  

But Gavin's eyes were on the Carousel...

This is where he blew me away.  While I held onto only his belt loop, Gavin sat up and casually held on to the pole with one hand.  We went for three rides in a row and he never tired.

 Check out the poor video I took with my outstretched arm...

After Arnold's, we took a ride over to Target.  Gavin's Uncle Mike, Aunt Lisa and cousins gave him a gift card for his birthday so we thought we'd spend it!  We got a new activity table to change things up a little at home!  

He also picked out a Fisher Price circle shaped rattle that has a chirping chickadee in the middle.  I know - it's a baby toy.  But he held that thing and shook it like it was an instrument through the whole store.  There was no way that wasn't coming home with us!!  He continued to hold it through lunch and even in the car!!

The last thing we did was pick up a castle climber and slide that I bought on a Mom's sale site, much like Craig's List.  I'm going to clean it up and bring it into Gavin's school on Monday for their classroom!  I can't wait.

We really had a lot of fun together.  Gavin was exhausted when we got home and nearly fell asleep in his Yams at dinner.

I hope Love Bombing catches on with all of you!  I have to say - it's good for everyone involved.