Let's get ready to RUMBLE!!!

On Wednesday, our dear family friend posted an adorable picture of her granddaughter, Chloe, on facebook. Miss Chloe, we joke (sort of), is Gavin's betrothed!   I loved the idea of her picture so much that I immediately changed Gavin into his robe and clicked away! 

They are so stinkin' cute and I can't wait until we get them together for their first photo shoot as couple!

 

My little boxer... hamming it up!

Hey mama... I am a lover, not a fighter!  LOL!!!
(Look at those lashes... so long and blonde!)

Today sweet Emily Evans was laid to rest.   She entered eternal life on April 16, 2012… exactly eight and a half years after she entered this life on October 16, 2003. 

I had the privilege of attending the celebration of her life… to sit amongst the sea of people dressed in pinks and purples… and witness the many joyful recollections of her huge, beautiful smile, her contagious belly laugh, her dancing green eyes, her perfect curls, her boo-boo lip and her signature “leg shake.”   We listened to her grandfather, Bumpa’s, stories of her poker chips and her head rubs and could easily feel the depth of love that surrounded Emily in her immediate and extended family.   Amongst the tears, there was laughter in the memories of funny things she did, how much joy she had for life and how much joy she brought to those around her.  It was a lovely service… and certainly celebrated and honored Emily’s short, yet impactful life here on earth.

I couldn’t stay for the Internment or reception that followed, as John had to get back to work, but I have seen photos and read words from those who were there.  Photos from the balloon releases from all over North America brought me to tears, as did these words from Catherine, who was able to stay, “I learnt many things today… that one of the highest honors in Judaism is to help with the burial.  And, so, we threw earth upon little Emily’s coffin, the honor being that it is a gift she can never repay.”  These words are such an eloquent description of a beautiful gesture.  And, of course, so deeply heart wrenching when you think that it’s the coffin of a child… of sweet Emily. 

As the service began, the Rabbi read Sara’s (Emily’s mother) words… I will paraphrase, “Please don’t tell us, ‘Emily is in a better place.  These words are not comforting.’”   Though it might give others peace in their hearts to think of Emily as being in a better place, to her family who has lost her, Emily’s place is supposed to be with them… and therefore those words are anything but comforting.    Over the last few weeks, this incredible family had to make decisions that no family should have to make… devastating decisions that are evidence of the utmost love and compassion for their daughter.  Today, this amazingly strong-knit, loving family had to do the unthinkable - -  they laid their sweet daughter and sister to rest and kissed her goodbye for the last time.  And, as they did so, I watched them give comfort to others… they so lovingly offered support to those who were there to support them.  What they had to do today is so against the rules… parents and grandparents shouldn’t survive their children or grandchildren.   My heart is heavy for the Evans family.

After the family’s words were read, the Rabbi invited anyone else to come up and speak… not words of sorrow and sympathy, but to share stories of Emily and her impact on them.  I wanted to get up and say something, but in times like these, my words don’t come easily.  As I hugged Sara at the end of the service, again, my words failed to come… and instead, what came out was a jumbled mess of scattered thoughts… it was too overwhelming to look into her eyes with her sweet Emily lying peacefully behind her, her curls perfect, surrounded by Hello Kitty and pink, and gather my thoughts.

What I want to share with Sara is this…

Sara and Emily have brought together people from all over the country… all over the world, actually... and that is pretty amazing.

My connection with Sara started (she probably doesn’t even remember!) when she posted on my blog in September 2008.  I remember reading it when my mom, kids and I were in SoCal house hunting.  Her words were so kind and welcoming and I distinctly remember clicking onto her blog and immediately falling in love with Emily, aka, “Peanut.”  The pictures on the blog of Emily melted my heart - - I was immediately entranced by that gorgeous smile and those dancing eyes.  I admired Sara because I could easily tell, through her writing, that she was a strong mama and an advocate for her daughter.  She loved hard and deep and that was obvious when I read the stories about her “Peanut” and “Monkey.”

We would connect through our blogs for many months, all attempts to meet in person failed due to Gracie and Emily’s health or my inability to make Moms’ Group dates due to John’s crazy work schedule.  But we remained connected, through our blogs, and later Facebook.   And, each of us found additional connections through the other’s blog.  For those not in the special needs world, this may sound a bit strange, but for us, when we are constantly seeking new information, support and understanding, the world of technology is so important.  Sara is someone who manages to stay connected to others and bring others together, even when going through so much with Emily.    When Gracie was incredibly ill in the summer and fall of 2010, Sara, still never having met us in person, came to visit and brought cupcakes.  She loved on Gracie as though she’d always known her.   We missed Emily’s birthday party that year because Gracie was sick, but I will never forget the images of Emily enjoying herself in the bounce house.  Less than a year later, I was dropping off a care package for Emily and Sara at CHOC.    

Then, in October of last year, for Emily’s eighth birthday, we were finally able to connect our girls up at Emily’s party.  That day was a gift on so many levels… and is a fine example of the way that Sara and Emily have, because of their love and spirits (and via the beauty of technology), been able to connect so many people from all over.  Everywhere I turned, I was being introduced to another family that I only knew through the internet… through blogs.  People whose stories had touched me… words of advice, and support from those “in the know” of this world of special needs and medical fragility… all connected at one, very special eight year-old’s Hello Kitty party.    

That day will forever be burned on my heart.  It was a beautiful gift that Emily was out of the hospital and could spend the day as Sara and Alex hoped… outside, with friends, enjoying the gorgeous October weather, with Hello Kitty everything surrounding all of us.  It was the first time Gracie and Emily met and it was the first time Gracie had been at a party where she wasn’t the only one in a wheelchair.  That day was a gift for Gracie, too.  She wheeled herself all around, checking out all of her new friends and their families.  She truly loved seeing others who were like her.  It was a gift for me, as her mother, to see her eyes light up as she made her “great escape” time and time again throughout the day… wheeling around, going where she wanted, “introducing” herself in her own way.  That day, Emily and Sara gave Gracie a huge gift and, for that, I will forever be grateful.

Over the last several weeks, I have watched Facebook and blogger be inundated with images of Hello Kitty… the love, support and admiration of Emily and Sara (and Alex and Jacob) are why people did that.  They have touched so many lives and joined together so many who would, otherwise, never have been connected.  That is an amazing, never-ending gift.

I will never look at Hello Kitty and not think of Emily and the Evans family.  Rest in peace, sweet Emily… you were an angel among us and it was a privilege to know you, even if only for a brief time.

Please keep the Evans family in your thoughts and prayers.

Celebrating Nine

On Gracie's birthday, she was slow to get moving in the morning... still recovering... so we let her dictate the pace of her special day.  We gave Pearl the day off and spent time hanging out as a family.  In the afternoon, instead of going to therapy, all five of us went to the park - - for the first time ever!  (And, it was Gavin's first time not sleeping through an entire park outing!)

We had lunch first, Gracie and Preston had cupcakes and then it was playtime! And, I think it's safe to say that Miss Gracie got plenty of therapy in during her park play!

Outside, enjoying the beautiful day... happy girl

Gavin - two months exactly
Looking a ton like my mom and grandfather in this picture
(I like my mom's theory that babies go through phases of resembling many relatives so that we remember all the people involved in making that baby!  That being said, Gavin has, in many pictures since birth, looked a lot like my grandpa.  I need to do a post just on various resemblances!)

How to Eat Destroy a Cupcake

Heading to the swings... super happy!

Though she requires support for balance, Gracie's motor planning while walking on a balance beam is excellent.
(This is an IEP goal... check!)
For someone who is monocular, has a field deficit and asytgmatism in her sighted eye, Gracie compensates remarkably well.

Loving the zip line!
She only gets to do this when Daddy goes to the park... Mommy is too short!

Hold on and twirl!!!
(Another one that only Daddy can help her with.)

So much JOY!

See John's face...?  He is saying "Whoa!"
Gracie lightly bonked her head on the metal wheel... and I said, "Oops... be careful."
John replied, "That wasn't me... she pulled herself up and hit her head!"
It just shows how strong Gracie is - - though she couldn't hang there independently, of course, with John's support, she was able to pull herself up higher. 

Working on the stairs...
Again, motor planning isn't Gracie's issue - - she knows exactly what she needs to do.

Almost there!
Balance and use of her strength (and muscle mass) are some of Gracie's biggest challenge when trying to walk or climb stairs.

While Gracie had "park therapy," Preston was playing monkey and climbing trees.

Mommy with her birthday girl
John took this after we got home so that there would be some proof that I was actually present!

That night: more cupcakes, mint chip ice cream (because it's tradition!) and presents.
Miss Gracie loved everything she received, but went crazy over the Polly Pocket dolls!

Happy 9th Birthday, Gracie Girl

The last few days were terrible for Gracie.  Since Wednesday evening, she had been in a dark room, eyes covered, miserable, retching and crying from the pain when awake.  Sleep only came from pure exhaustion caused by the former. There was little reprieve during this abdominal migraine and its severity was reminiscent of the ones she had when she was much younger and they were brought on with a vengeance by stress.

Thankfully, the fog lifted little by little on Sunday and, by mid-afternoon, though she wasn't back to her baseline, she let me play dress-up with her for her birthday photo shoot.  (She was exhausted after all the primping, playing and posing and ended up taking a long nap.)  I had hoped to get one great shot to use. Instead, I got so many I couldn't possibly choose. Perhaps it's because she was so sick for so many days that seeing her bright, happy expressive face made me want to use them all. But, I think it's just really because they are that good! ;-)

Sweet, sassy daughter of mine...
How on earth did you get to be nine?

Sitting so pretty

Using her walker, Gracie made her way from sitting on the bed (I liked the colors there!) to her mirror, where she prefers to hang out (stand, sit, stand, let go a bit to test her balance,sit, repeat!).  At the moment I took this pic, she very precariously balanced in the walker without using her hands.

It's hard to see here in the pics, especially with the fluff of her tutu, but she very carefully transitioned herself from her walker to the bar.  These transitions are something we are working very hard on... and she gets more and more daring as she feels comfortable with her position. 

Love this smile... it was missing for several days as she suffered horribly from an abdominal migraine that was, no doubt, worsened (or possibly even brought on) by a stressful day at school on Wednesday.  She was in the dark for days, feeling miserable.  If she was awake, she was crying and retching.  And yet, when that fog of misery lifted, she instantly became her regular happy, playful, busy, lovebug self. 
There is a lot to be learned from that kind of resolve.

I love this so many reasons.
The fact that the puppy is also pictured is special because she was in Gracie's nursery, sitting on her bookcase, for weeks before she was born.

I find these mirror shots to be, well, quite amazing.
Look at Gracie's reflection... so obviously smiling.
Look at the side that is not in the mirror... she appears to be serious.
The lesson... pay close attention... or you might miss what's really going on.

This expression is so quintessentially "Gracie."

Hugging her puppy in one hand, leaning and holding onto the bar with the other.

I love Gracie's hands... they are loving, gentle at times, rough (without intention) many others and
so very expressive.
Whether she uses them to sign or to access augmentative communication devices... they are her voice.

My beautiful, strong, spirited, loving warrior daughter.
She gets knocked down in so many ways, all too often, and manages to pick herself up and keep on going.

(See why I couldn't choose?!)



Dear Gracelyn Marie,

You are nine today. Nine years old. It happened in a blink and yet, it's been a long, winding road to get here.

Your eighth year was full of many ups and downs. Thankfully, with regard to your health, the downs were not nearly as terrible as they were in your seventh year... no major setbacks and no hospitalizations.  That's pretty darn amazing and we are grateful.

The biggest downs were caused by those around you.  You were let down by so many who, by their very role, were supposed to protect you, care for you, nurture you.  Even I let you down by not protecting you better from all of that.  I am trying really hard to let that go, not dwell in a place of guilt, and move on so that I can better protect you and find the right people to surround you.  One such person is Pearl.  We are so blessed, after four other nurses since August, to have found her.   She takes wonderful care of you, advocates for you and, clearly, respects you.  She has, in just a couple of months, learned a great deal of sign and understands so much about how to engage you - - that is a tremendous gift.

Because of the inconsistencies in your care and other things that were happening (or not happening) in your world, it took you a while to trust her... I don't think you believed that she'd stick around or treat you right.  It was so sad for us to see you that way as it went against your very nature.  You are so loving, social and sweet... you are curious about others and don't hesitate to "introduce" yourself in your own way.  And, yet, that social little girl disappeared for a while.   We have been speculating what might have been the cause and now I believe we have finally figured out all the reasons for your hesitancy, sweet girl, and... suffice it to say... problem solved.  I am just so very sorry that it took us so long to put all the pieces together in order to make your world better.  So very sorry. 



For instance, you are literally trying to cross rooms... by walking.  Perhaps some of it is from jealousy (you are furious when our dear friend, Rachel, holds Gavin... you don't want to share her!).  Twice now you have taken a couple of steps between two chairs, allowing yourself to not hold onto something for a brief second as you reach for the support of the chair you're trying to reach.   Granted, how you're feeling plays a huge part in what you do and when you do it, but when you're determined, you can do anything.  Daddy said just the other day, while watching you do some pretty crazy things that prove how incredibly strong you are, "You know, she is going to walk... sooner than we think."  I think he is right.  And, even if he isn't, I will never stop believing that it's possible.   

You continue to astound us with your resolve and spirit.  There isn't a day that you don't have discomfort of some sort... between your central nervous system issues, your joints bothering you, constant issues with nutrition, sinuses and your ears, the list goes on and on... and yet you, Gracie, are never down for good.  The moment that discomfort passes, you have smiles and hugs to give, you are itching to be busy and back outside again.  You are anything but meek, and for that I am grateful.  Your spunk and will serve you well.  You never cease to amaze us with what you can do, what you know and what you can learn... when we least expect it, you remind us.  You are extraordinary and we promise to make sure that you are only surrounded by people who believe that about you and are willing to help you thrive. 

You are, on your ninth birthday, on the brink of so many changes.   I am full of hope that these new doors that are opening will lead to paths that take you great places.  While your journey is never straight and easy, I know that your strength and determination will allow you to reach your fullest potential.   You are our extraordinary, miraculous little girl... and Daddy and I are so honored and privileged to be your parents.

All my love,
Mommy

Gavin (Month Two)

Okay... so technically, you're 8 weeks today, not two months.  But your two month birthday (Monday, April 16th) is the same as Gracie's 9th birthday and, well, I think it's fair that we save that day for her!

You started spitting up like crazy (which is not like you) when we started these pictures,
so, soaked shirt it is!
Even through all that "urpiness," you were content as can be.

It's funny how red your hair looks in all your pics. 
There's a slight hue right now, but in natural lighting, it's getting blonder by the minute.

That's my happy, happy boy!

In the last month:
- You grew a smile... and each day it brings us more and more joy.  So far, daddy gets the most.  You hear his voice when he gets home from work and practically smile without even seeing him.
- You continue to be so laid back. I keep saying that I am afraid I will jinx it, but I think it's pretty safe to say, at this juncture, this is your personality... at least for now!  You are one "zen" little dude.
- I started "wearing" you when you were one month and one day old. Like your sister and brother, you were never a fan of swaddling. But, man oh man, Squeak, do you love to be worn! It's the same thing, really, but I think the reason you like being in the Moby Wrap is because you're right up against me. I love it, too, and it keeps my hands free which, in this house, is key.

Just like the pics I took to mark my belly growth... only now you're outside!
Sadly, this is one of only a few pictures I have with you since you came home.  We need to get better about that.

 - We've loved watching your blonde eye lashes appear day by day. It's amazing to see how they suddenly start sprouting... it's like watching a time-lapse video!
- Your hands are fascinating to you... and to me. I love baby hands... and since you're my baby, I really love yours! They are extraordinary and beautiful... and they've already grown so much in such a short time.

- You love nursing (me, too) and, thankfully, also easily take a bottle when necessary.  Clearly, you're not hurting for nutrition.  ;-)

You are 7 weeks, 6 days here. 
Your two month appointment isn't until next Friday, so we will get your official stats then. 
By my scale, you are already roughly 11 lbs, 10 oz.
(You were 12 pounds even at your appointment!)

- You started (in just the last few days) sleeping in a 6-7 hour stretch at night.  I am not holding my breath that this will last... it may just be a fluke... but I am enjoying it for now.  It makes it a lot easier to take care of your sister if you're not awake all night, too!
- You sleep mostly in your bassinet and nap in your swing. You seemed too small for your crib until recently.

On your 6-week birthday, you took your first long nap in your crib.  You look so tiny in this picture... now you fill that space much better and it's only been two weeks.  I know it's time to move you in there and pack up the bassinet, but I want to wait just a bit longer!

- You've gotten better and better at tummy time.  It wasn't your favorite unless you were lying on me, but now you're tolerating longer and longer stretches on your Gymini playmat. 

These pics are from the very beginning of the month. 
You are much stronger now!

- You love staring contests with Gracie and Preston and listen very intently to anything Preston says.  A couple of weeks ago, you were awake from 5am-9am.  Preston went and laid on our bed with you and I walked into the doorway unbeknownst to either of you and just listened to your him chatting away to you. It was so very sweet and made mommy cry big, happy tears. You're so blessed to have a brother with such a big heart to love you and teach you and a sister who is fascinated by you and wants nothing more than to be around you and Preston.

This was taken after Preston's baseball game when you were just 5 1/2 weeks.
I LOVE how you two are looking so intently at each other.

Your sister LOVES you to pieces!
And, since she's got no concept of how strong her grip is, she almost does love you to pieces!
We have to be very careful!

- You love Toby and don't at all mind (even though I sort of do!) it when he licks your face. He is constantly sniffing you and insists on sitting right up against me when I change you on the family room floor. You are "his" baby!

We had just gotten home, Gracie had done some serious "Gracie Yoga" and then sat up to get a better look at you.
Toby, apparently, was making sure Gracie understood that you are "his" baby!

- You continue to be like a sleeping drug for me.  I have to really concentrate on staying awake when I hold you...

See... I'm out like a light. 

You are such a complete joy little doodlebug.  Your sweet, easy disposition serves you well in this family because, let's just face it, sometimes you have to wait a little longer for your needs to be met.  If Gracie is pulling out her trach and Preston is going a million miles an hour, I might have to ask you to sit tight a little longer than my preference or yours. Hopefully, you won't require too much therapy later in life!
Preston says a million times a day when he kisses you, "You're so adorable and lovable and precious." He's SO right!

Love you the whole world,
Mommy

** On your 2 month appointment, you weighed an even 12 pounds and were 22 1/2 inches - - though I am not all that confident in the nurse's measurement.  I think you're about an inch longer than that. **

Eggstravaganza

On Good Friday, neither Gracie or Preston had school, so Pearl (Gracie's awesome nurse... finally we have a great nurse for Gracie!) and I took the kids on a "field trip" to the Eggstravaganza at Irvine Park Railroad. It was a fun afternoon - - though it got warm as the day progressed and both Gracie and Gavin had their fill by the time we saw the Easter Bunny. Gracie was repeatedly signing "ready" (as in "ready to go") as we waited in the (thankfully) short line to take their picture with the bunny and Gavin melted down right when we finished. Preston was very impressed that his baby brother didn't cry when the Easter bunny held him.   And though Preston did not have a meltdown, he was sound asleep ten minutes into the car ride home!

This was, by far, Gracie's favorite part of the day. 
Pearl helped both kids decorate cookies while I took pics and kept an eye on Gavin.
Gracie would have stayed and decorated cookies (and herself) in frosting and sprinkles all afternoon!  Preston enjoyed the decorating process, too, but much preferred the process of eating!

Open wide!

I love this picture!  She is as happy as can be!

Pearl and Gracie
We are so very grateful for Pearl... Gracie LOVES her and so do we!

Basket Heads and Chocolate Bunnies
The egg hunt wasn't particularly fun for either of the kids... it was way too crowded which prohibited me from helping Gracie get eggs on her own and the swarm of kids and parents bumping into her chair did not (understandably) settle well with her.  Preston quickly grabbed his eight eggs, gave Gracie his basket and took hers to retrieve her eight.
They both had way more fun putting their baskets on their heads!

I took a bunch of pics with my camera, too, but this scanned one that I paid for really was the best shot of them all. 
Gracie isn't too furious about being hot and sitting with the fuzzy, warm Easter Bunny and Gavin isn't yet covering his face with his hands!

Egg Dyeing... Serious Business

This cracks me up. 

We hadn't yet mixed the dye pellets with vinegar and Preston was so stressed out that Gracie was reaching over and grabbing the cups.  He had been put in charge of putting the right colored pellet in each cup and was quite concerned that Gracie was going to mess up his job! 

It also cracks me up because Gracie had on a shirt... and when I took the cup to add the vinegar and water, she stripped it off in two seconds flat (her house, she's allowed to at home!).  She must not have wanted to ruin her cute top because, ten minutes after it came off, she dumped the yellow cup and was covered in yellow dye!

There was a lot of concentration going on during this process!

The finished products