Sunday, September 21, 2014

The Privilege to Serve...

Today was a difficult, exhausting, emotional and all around hard day for me.
Coincidentally, today was also a beautiful, heartwarming, perfect and appropriate day for me and my family.
This morning we were all up bright and early in order to be at the Gift of Life Family House at 8am.  We continued our tradition, which started last year, to serve the guests of the Family House a meal as a way to celebrate Gavin's birthday.  The guests of the Family House are either organ transplant patients from all over the world who are getting treatment at a nearby hospital... or they are families and caregivers of patients who are inpatient at a local hospital.

To make a long story short - we were celebrating our greatest gift of life, Gavin, while simultaneously celebrating THE gift of life - organ donation - and supporting those that have been touched by the need for a transplant.

Last year when we did this, I was six months pregnant with Hope.  To go back a year later with her in our arms was definitely a full circle moment.
Strangely, this year was much harder for me.  They say the second year is tougher than the first when you lose a loved one.  I can say now that this is true - at least for me.  But today was extra hard on my heart because it was also what might have been Darcy's 4th birthday.
It didn't help that I've been beating myself up quite a bit about my May blog post saying Darcy would have been 4 then.  I screwed up.  We call May 10th "Darcy's Day" because it's the day I delivered her.  It wouldn't have technically been her "birthday" if she had lived.  Neither would September 21st, but today was her actual "due date."  I generally have my babies a month early or so - but because nothing worked out as we expected or planned, September 21st is all I have to go on.

Every May 10th - and every September 21st - has been hard for me, but something changed once Hope was born.  Now I understand what it means...what it feels like to have a daughter.  Now I know what I was missing over these last four years.  Suddenly it hurts more as I wonder what Darcy might have been like - and what life would have brought us with her in our family.

But seriously - I did a whole blog post about how she would have been 4 and we would have celebrated her birthday in May - when it's really September.  Who does that?  Apparently, me.

So, anyway... there was that.  On top of Gavin's birthday.  On top of lots of other stuff.  What I'm trying to say with too many words?  It was a tough day.

Yet, I will tell you one thing.  I can't think of a more appropriate way to celebrate our little boy's life than to serve those who are hoping and praying for and often receiving another chance at life.  It was a privilege to be there...and a privilege to serve them.

We're so grateful, once again, to Claire from HomeCooked in Paoli for not only donating the main meal...but for bringing it so we can all help assemble or drizzle or wash.
She even included Brian who, as it turns out, is an expert scone placer.
We were a pretty awesome "Team Super G!"
Thanks to donations from all of you to the Family House, they gave us a paver that we could have inscribed.  It was placed just a few days ago and we were excited to see it.  The folks at the Family House knew that Gavin loved water...and that blue was his color...so they placed it right in front of a beautiful blue fountain in the courtyard - surrounded by hydrangeas.  It's the perfect spot.
It took me months to pick up the paper they sent me for the inscription.  I wanted it to be perfect.  But one day I finally realized that nothing ever is and I just wrote it.
I'm not sure what it all means to Brian in this stage of his life.  But I hope as he grows and grows and becomes an adult... he will come back to this house and know that his brother's life changed people.  Inspired people.  And he was a big part of that.
As my sister, Bean, held Hope and watched her fall asleep to the sounds of that trickling, blue fountain - she told me something that reminded me what today is all about.  She told me that the triplets, her two daughters and son - Shannon, Brendan and Claire - recently became organ donors when they got their driving permits.  I am so, very proud of their selfless and mature decision.  
Gavin's actual birthday is September 29th.  If you would like to support our family through yet another difficult anniversary, I have a GREAT suggestion...

If you aren't an organ donor... please register.  If you're in America, you can click HERE.  Outside of America, google where you can register in your area.

If you have a concern about organ donation - questions like "Will it wreck my appearance if my family would want an open casket?"  or "Is it against my religion?"  or "Am I eligible because of xyz?" - you can find those answers and many other answers to questions you didn't even know you had on the Donate Life website.

If you're already a donor, you can create one post on social media encouraging others to do the same.  You're welcome to use Gavin's story if you want!

If you live in the Philadelphia area, consider volunteering with a group as  "Home Cook Heros!"  It's actually really fun - and greatly rewarding - to make a meal for the guests in the house.  And you'll be able to see Gavin's paver...and his plaque in the entry way... and even the guest room that is dedicated to him.

You could also have a "Wish List Drive" to support the Family House - as they run the house completely on donations.  The last thing a transplant patient - or their caregiver - needs to worry about is running out of toilet paper... or coffee... or any of the items we take for granted on a daily basis.  They can concentrate on health while others stock the kitchen pantry or refrigerators.

If you do any of these things as a way to celebrate Gavin's birthday, please let me know about it.  You can comment here on the blog... or post it on the Chasing Rainbows Facebook Page.

Thank you, as always, for caring about our little family.

Superhero Gavin off to save lives... even still.  
But the first lives he saved...were ours.



Saturday, September 20, 2014

It's Official!...

Exciting news!!!

Hope said her OFFICIAL first word.  Babbling words doesn't count to us if she doesn't know what the word is attached to.  But... it was no surprise that her first word was DADA because SHE is attached to her DADDY!!!!  Hope is such a Daddy's girl - it's so adorable.  This past Thursday night we were all at Brian's tee ball practice when it happened.  The video doesn't do it justice, really.  She just didn't perform as well for the camera.  When I asked her "Where is your Daddy?" she looked right at Ed, touched his face and said "Dada."  It took our breath away!

Listen to her sweet little voice...

I love that she is so enamored with her Daddy.  I was, too, with my Dad!  I hope it never changes.
Brian is doing so well in Tee Ball this year.  What a difference it makes being one year older.  He knows more, he can run faster, he throws better - and he's a great hitter!
It's a big switch from last season when he was collecting sticks and rocks in the outfield!
Brian is also doing really well adjusting to Kindergarten and the new routine.  He gets up with his alarm clock every day at 6:30 - and his bus arrives at 7:20ish.  It's just enough time to get dressed, eat and have time to read some books or play before heading out to the driveway.  I don't enjoy "let's go - let's go!  LET'S GO!!!!!!!!"  Our mornings are a bit early (more for me than him!) but relaxed.  Hope has only woken up one time to see him off.  Most of the time she's sound asleep until close to 8am!

Brian gave mini pumpkins to his new bus drivers (who are both very nice!).
This past week was the first week of real learning (the first week was all play and "getting to know you").  He has math and religion, science and gym, music and library, spanish and more!  He came home enthusiastic every day.  We have fallen into a routine when he gets home - Hope and I have a snack with him and he (sometimes) tells me about his day... then we play or read for a while, where he (sometimes) tells me more...
and then we do his "homework!"  He loves the homework (which is very minimal) portion!  Let's hope that enthusiasm stays with him for his entire school career!  

This past week I also had my first day of "lunch duty!"  I volunteered to go once a week to help with the students' lunch and recess periods.  It was fun to see Brian interact with his classmates in the lunchroom and on the playground.  I had Hope in my Ergo carrier and she had a blast taking everything in - not to mention seeing her brother!!
My days have definitely been different.  Hope and I have been having such a fun time playing during the day and have fallen into quite a routine already - playtime and naptime and even grocery shopping, just the two of us!
It's so interesting to watch her play in the playroom.  She has soooo many toys - but she inevitably ends up around Brian's toys!!  
Just the other day, I introduced her to a new toy.  Well, an old toy - but new to her.  You can see them in the above photo - top right.  They are a set of Gavin's stacking blocks and it brings tears to my eyes just to type that.  They are damaged where he put his mouth on them and are so sentimental to me.  Not the kind of sentimental that makes me want to preserve them and keep anyone from touching them.  Quite the opposite.  
It actually brings me excruciating joy to see Hope pick them up and... you guessed it... put them right in her mouth.
We had fun...

Hope's naptimes have brought a peace to our house that isn't always present.  For a good hour - sometimes two - sometimes twice a day - it's just me and my thoughts.  Some days that's good... other days, not so good.  On the good days, I get things done!  They aren't always the easiest things.  Like putting Gavin's clothes into a storage box...
...as if a box can contain any part of him.  Before you suggest we have someone make a quilt out of his clothes (which is a lovely suggestion) - we aren't interested.  We also aren't ready to get rid of his clothes.  One day we will be able to give them to someone special so that little person can wear them.  But now is not that time... and that's okay.

On the bad days, (which are sometimes the good days - I know, it confuses me too) I end up parked in front of our new ant farm.  Seriously - it's the new way to meditate (and have your eyes cross pretty quickly).

Check out the progression from Day one...
(before the ants went in)
(Dropped the ants in after putting them to sleep for 1 minute in the refrigerator!)
to Day two...
Came down the next morning to find THIS!
There is an entire tunnel down both sides and across the bottom.  Two of the ants died and they were picked up and put in the "ant graveyard" and buried.  I'm not even joking - these ants are so smart!!  Brian and I are loving this.

Today is Saturday, so you know what that means!  We celebrate another week with Hope.  She is 42 weeks today, which means that there are only ten more Saturday photo shoots before she turns ONE!
I said this last week, but it is near impossible to capture her photo. She's one big blur because she's always on the move!!  
Hope still has light eyes - and eyes that light up, coincidentally.  She also has two little bottom teeth, as you can see...
...and she loves to use them!

Her new favorite foods are boiled, soft carrots cut into sticks...
...hard boiled eggs, brown rice and broccoli!

Hope loves things that have faces - dolls, stuffed animals, etc. - and loves to give them kisses and hugs.  Her favorite doll is actually the first thing that Brian picked out for her the very day we told him we were expecting his little sister!  We've named her Katrina, a nickname from my childhood between my Mom and me.
This seems like a lifetime ago.
Hope is also taking an interest in books, which makes me so happy.  We are a HUGE children's book family.  I have so many books that I can rotate them with the seasons!
At the moment, Hope's favorite book (based on the way she sits for it and smiles a lot!) happens to be one of Gavin's all time favorite books:  "Eight Silly Monkeys."  It makes me cry typing that, too!

Enjoy the rest of our photo shoot!
And enjoy the rest of your weekend! Don't forget to laugh - even if you have to force it.  Sometimes that's the secret to my success on a hard day - I fake it until I make it.

Monday, September 15, 2014

Weighing the Pros and Cons...

This is a very hard post to write.  Mostly because I don't know WHAT to write!  That is the problem... and lately, the story of my life.

I'll get to the point.

I'm thinking about ending Chasing Rainbows.

I was going to keep all of this to myself until I decided for sure, but I've decided to share what I'm going through for a couple reasons.  One:  it wouldn't be like me NOT to share it all.  Two:  I want to explain why my posts have been spaced further apart.

I am not sharing what I'm going through for any of THESE reasons:  advice, compliments or judgement.

This has been a really gut wrenching time for me.  That may seem silly - this is just a blog.

But that's the thing.  It's not just a blog.  At least not to me.

I've always called this an "accidental blog."  As most of you already know, it started when Gavin was hospitalized as an infant - my journal on CaringBridge was a great way to keep family and friends informed of his status.  I continued to write when he came home... and didn't stop through all of his therapies... it turned into a "Special Needs Blog" along the way... and then a place for women to relate if they had fertility issues or multiple miscarriages.  When Brian was born, I wrote about him and his development and the special relationship that formed between the two brothers.  I wrote about Darcy and her devastatingly beautiful birth on Mother's Day, 2010.  I never - in a million years - thought I would ever write about the death of another child.

But then Gavin died - with no warning.  And my world was turned upside down.  

It's very hard for me to believe that we're already a year and a half past that dreadful, heartbreaking day.

The first year I poured myself into this blog.  I needed it.  And I felt like I had so much to say... about Gavin, Brian, my pregnancy, my feelings... several fundraising ideas that turned into events that brought in close to a hundred thousand dollars in Gavin's name spread over several charities.  And, of course, I wrote about Hope.  And I also wrote about hope.

But now, I'm at a loss.

I took a break last month.  The longest break I've ever taken since I started writing on January 26, 2008.  I expected to feel the need to write much sooner than I did.  But the reality was - I loved the break.  That feeling both shocked and confused me.  It was then that I started weighing the pros and cons of walking away.

I've really been going back and forth and back and forth.

I love that I have a detailed journal for my children to read when they get older.  Not just a journal of their development and their experiences...but a book of love.  The most important parenting technique to me is ensuring that my children always feel cherished and wanted and SEEN.

I've thought, "Maybe I can make the blog 'private' and continue to keep that journal!"

But - if I'm being very honest - I don't think I would have the discipline to keep up with it.  Having an audience isn't motivating because of the attention or the comments or the 'likes'.  Having an audience is motivating because it's like a "deadline."  And it keeps me accountable.  

This blog has absolutely been a HUGE help for me as I've grieved my little boy.  The writing was my therapy... but it wasn't just that.  I easily could have holed up in my house with Brian during my very exhausting (in every way) pregnancy... and afterward.  But knowing that readers were waiting for a journal entry was often a motivator for me to keep moving.  To take Brian out and have an experience that I could then write about.  I may have WANTED to do nothing - but this blog made me do something and it was always the better choice.

But - on the "con" side - Brian is getting older and, with that, comes a legitimate expectation of privacy. 

I struggle now with what to write about.  I felt like I had a purpose - a theme - before Gavin died. Now that Brian is in school all day - and it's just me and Hope at home - I don't have a lot to say.  At least anything that's very compelling.  

I still refuse to advertise or take advantage of the many offers that come my way on a daily basis. That is not - and never will be - a motivator for me.  It's never been what this blog is about.  I don't judge anyone who chooses to advertise or do sponsored posts - it's just not for me.  I won't be fundraising anymore, either.  I had a great opportunity that first year, with so many eyes on me, and I ran with it.  I'll always be humbled (and grateful) for every dime that was sent my way. I hope you all could see that the money was put to good use.

I feel a responsibility to keep everyone informed as the hospital continues to plan and then starts to develop and then completes the "All Abilities Playground."  So I thought that I could keep the blog up and write on occasions like the kids birthdays and Gavin's anniversary and if something big or exciting happens - like the unveiling of that playground.  If I do end the blog, I would likely keep it open as resource.  It's so heartwarming when someone discovers my journal because they google something that I've written about - like the chest strap that my Mom made for Gavin or different alternative therapy techniques that I spelled out.

If I'm being very honest, part of me feels overwhelmed with the amount of readers and the number of eyes and the mounting expectations.  Some days it becomes too much.

This is what is going on... how I've been feeling... and I'm still back and forth every day.  Ed has patiently listened to me weigh the pros and cons for over a month now. He's on the fence, too, and it's not even his blog!  But he is supportive of anything I choose - as always.

So, as I continue to try to come to a decision that feels right for me and for our family... I will keep writing.  It won't be every day - or even every other some weeks!  I will write about my final decision - even if it's to stay and continue the blog as-is.  Maybe I will find a way to re-invent this space that feels good.  Who knows...

As I said - I'm really undecided.  I appreciate, as always, your interest...and your love for our little family.  And I thank you so much for your support.



Sunday, September 14, 2014

Splitting Up (for the day!)...

This weekend Ed and I split the team.  Unfortunately, Hope came down with a cold!  We had plans as a family today, but decided that we should split up for both so Hope could stay home.  It didn't seem fair to her (or anyone around her) if we schlepped her out in public.  I won't lie, both of us are slightly paranoid about a serious strain of a respiratory virus that is sweeping the country and putting infants and children at risk. It felt like the best choice for her to stay inside.

So Hope spent the day snuggled up in her pajamas.  The two of us spent the morning together while Ed took Brian to the Philly Brick Fest Lego Fan Event!  Brian loves Legos and we always have so much fun building things with him!  He had such a great time hanging out with his Dad... and Ed made my day by taking all of these photos from the event!
It's amazing what you can do with your imagination and some LEGO bricks!
Ed said that Brian sat here for quite a while making a spaceship.  
Later in the day, it was my turn to take Brian out on a date!  We went to our neighborhood block party down the street and had so much fun.  We have close to a hundred houses in our neighborhood and it felt like everyone was there today.  The neighbors that coordinated the event had a couple come with a big smoker making brisket, pulled pork and pulled chicken sandwiches that you could purchase.  Brilliant idea for a block party, right?  And then neighbors brought tons of other side dishes and desserts to share.  I love our neighborhood and it was so great to see so many people that I don't get to see very often!
And Brian had a blast with his good friend (and school mate!), Danny.
The day worked out in the end.  Hope got two good naps in and lots of snuggles from her Mom and Dad... and Brian got alone time with both of us and play time with his neighborhood friends!

I don't recommend splitting up - but today it had its advantages!



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