Excerpts from my mama heart

I haven't done this in a while.  A long while. And, really, it's a shame, because the bigger that the kids get, the faster I am forgetting these moments.  The ones that make me want to freeze time.

John is out of town.  He left on Sunday and gets back Saturday.  Today is Wednesday.  Gracie was already sick when he left and Gavin has gotten sick since.  This morning, Preston woke up early and found me cuddling up with Gracie in her room.  He joined us.  We hung out talking with Gracie smiling between us.  She LOVED being the meat in our little cuddle sandwich.  He seemed so old, yet so young and sweet all at the same time - - glimpses into the future and the past all at once.  When I got up to start getting things ready for them both to leave for school, he stayed with his sister.  Her TV was on and he was watching with no sound, reading the captions.  I came back in about ten minutes later (unbeknownst to either of them) to give Gracie her morning dose of Lasix and I could hear him talking to her.  He was half talking and one-handed signing to her while rubbing her back, telling her he loves her, that he hopes she has a good day at school and that he and that he really likes her new room.  Needless to say, I left quietly not wanting to disturb the sweet exchange and to compose myself.  I am incredibly proud of the brother he is to his sister.  I refrained from grabbing my camera... instead, jotting down here, and keeping mental picture that I will remember always.

Gracie's Getting A Wish!!!

A volunteer team will be coming out to meet Gracie and interview our family in a few weeks...
they will then put together her wish plan!

It is official... Gracie is getting a wish from Make-A-Wish!  It is amazing... we are so grateful.  I actually cried when we got the call yesterday.  It is such a mix of emotions... you never want your child to be eligible for something like this. But, at the same time, you want them to be able to have something so wonderful given all they've endured.  She was actually nominated for a wish several years ago, but she was so unstable medically and the time just wasn't right.  Now she is in a better place to be able to enjoy her wish. I also had so many reservations about accepting a wish when there are so many other families out there who have a child who also deserves a wish and we have the means to do many things with Gracie.  Thankfully, the Make-A-Wish organization helped me realize that this isn't about what we can provide for her.  It is about something wonderful being done for her - - that there shouldn't be a stigma or guilt for accepting it - - and that because she gets a wish doesn't mean that someone else won't.  Every child who meets the wish criteria gets a wish.   What a wonderful organization!!!



I completed this on Gracie's behalf for her wish volunteers. 
I hope this, along with the slideshow I prepared, gives them an accurate picture of all things our sweet girl loves!

School's IN!!!

Taking her turn during circle time...
and getting a round of applause from her teacher (blurred hands on the right) for getting it right!

 

I love that Gracie grabbed another "earth," put it on her head and went about her work!

 

THIS girl, mistreated and disregarded in SoCal - - deemed unteachable and antisocial - - had a fantastic day at school.  Here, they bend over backwards to make sure she can be at school even though we've been without private nursing since February.  Here, they believe in her.  Here, they call her the class clown because she is so social, silly and is making her own jokes.  Here, she is easily assessed (because they've taken the time to know her and understand her cues) and scores on the high-end of her CAPA testing level.  What a difference the right team and placement makes!!!  Those who gave up on her and didn't honor her IEP should be punished for the time they stole from her.

Celebrating a Stable Spine

In a stunning and miraculous turn of events, Gracie's scoliosis has remained stable (her kyphosis deteriorated slightly) over the last four months.  This was so unexpected - - so unexpected, in fact, that I literally almost feel hung over from the (wonderful) letdown of anxiety and emotions. 
These findings, coupled with her linear growth and weight gain has resulted in her surgeon saying, "She bought herself some time."  Today started with us thinking we were setting a date for a complete spine fusion and ends with at least six more months surgery free.  We will take it!

This is not something we take lightly... we know that this surgery will happen, it's just a matter of when.  We chose, despite popular medical opinion (well, her current team's opinion... our SoCal team had varied opinions), to postpone last year when her surgeon recommended we move forward at that time.  Gracie needed time to just "be" and not deal with another complex invasion of her body.  We were afraid, that at her weight, it wouldn't be as safe and healthy to go through that kind of trauma.   The urgency, in our opinion, was to do everything within our power to increase her caloric intake, manage her nutrition better and get some weight on her... something that had been impossible her entire life.  I made it my mission (not that I hadn't before), but there was even more at stake... buying time for her growth before stopping all growth through her spine.  It was the right decision for her on every level. 

Powering Through

Missing school due to nursing issues didn't stop Miss Gracie from giving her all at her first day back at therapy since December!  True to her character, this girl powered through even though it was super tough.  She is a rockstar!

It was, by no means, easy.  Nor was it pretty.  She compensated for the pain and stiffness by dragging her feet along behind her.  But she did it.  She powered through and didn't quit.  And, when it was over, she was super happy to be done and I, as always, was proud and awestruck.

Good Day for Gracie

Gracie went back to school today for the first time in two weeks AND she got her cast sawed off!  It was sort of funny... the tech who took care of her warned me that the saw could be really scary for her because of how loud it is.  It scared me, but Gracie was fine.  She was definitely in shock for a moment or two watching it come off, but she didn't seem to be afraid that her foot was going off with the cast the way I was!

Considering she missed several days of school due to the fracture and then another two weeks because of the flu, she was one happy little camper to be back at school today!



Look at her sweet face!  She is so happy it is off!
Plus, she knows that she gets a real bath without a huge plastic bag on her leg!!

 

Let's be honest,  though... that cast didn't really keep her down!

 

 

Dessert Before Dinner

Tonight we had dessert before dinner
... because I said so
... because the first week of spring break has been a bit of a dud
... because it's the little things.

"We're going for a walk," I declared at 4:00. It had been a lazy day with Gracie getting over an abdominal migraine, Gavin fussy from teething and not enough good sleep the night before and, aside from a few stolen moments playing cars alone out back with Preston, a rather boring day. Everyone (including me) needed to get out, crabby or not! So, I piled the "G" children in the BOB, Preston hopped on his bike and I gave directions as he kept questioning where we were headed. Once we walked toward the shopping center where his favorite fro-yo shop is, he was ecstatic. Then I told him he couldn't eat it right away! Ha! "Where are we going now?" he asked. Again, I led him with directions and we ended up at a park he has been wanting to explore. Two hours later, full of frozen yogurt and happy from the fresh air and playing with new park friends, we headed home... all four of us more content than we'd been all day.

Taking snapshots in my mind

Today was one of those days where I literally took pause and made a conscious effort to record in my mind and on my heart what happened.  If I'd had my cell phone handy, I would certainly have snapped a couple of pics, but it was in the car and, well, maybe that was best as I likely could have disrupted the authenticity of the moments.

I took the kids, along with Gracie's nurse, Girlie, to the recently refurbished Veteran's Park.  It has a fully accessible playground and is only about a five minute drive from our house.  All three kids had a great time exploring - - Gavin is content anywhere he can walk and pick up pieces of "trash treasure" and hand them to me; Preston enjoyed running amok with a group of boys his age and exploring the skate and BMX park adjacent to the playground; Gracie loved that there were ramps to different playground features and slides for her to enjoy.  It was a nice outing for all of us.

But these moments, for me, won the day:

At one point, Gavin stopped playing with his push car and walked over to Gracie's wheelchair and tried turning her wheels.  I redirected him to the backside of her chair and showed him where he could hold on.  He immediately started pushing her chair for her (while Girlie helped control the steering).  I will remember it forever... just like I remember when Preston started helping push Gracie's KidKart many years ago.  It is, of course, fun for Gavin to push her along, but his determination to be involved and help her was obvious and so very sweet.  He says her name now, "GeeCee," along with his sign approximation of her name.  He is so loving and sweet to his big sister and, today, showed me that he will, like his big brother, be her helper, too.

A while later, he was back playing with his push car and found a little friend, Lucas, who is 19 months.  Gavin walked up to him, touched his chest gently and then wrapped his arms around him and gave him the sweetest bear hug.  Little Lucas just stood there.  Then Gavin pointed to his car, said, "vroom," and gave him another hug and a kiss.  Lucas climbed into the car and Gavin started pushing him!  It was so adorable and I (along with all of the adults around) was literally drowning in the cuteness that we witnessed.  Such a sweet display for Gavin's first impromptu and independent social encounter.

Santa Baby!!!

On a rainy, windy, no-one-should-drag-their-kids-out night, we took ours to see Santa Claus! In spite of (and because of) the ugly weather, it was perfect timing to see the jolly man in red. There was a five minute wait. And, behind Santa's Village in the rotunda at Blackhawk Plaza, it "snows" (bubbles... so fun) and Frosty the Snowman walks around (although he was MIA that night, much to Preston's dismay). The fire was roaring in the outdoor fireplace and the ducks were happily swimming about the ponds even with the intermittent downpours. Luckily, Gracie was perfectly content with the entire outing until we walked into Starbucks for a hot drink, so we got our treats to go, grabbed dinner to go and, in true Swann fashion, had a car picnic to keep Gracie content. In all, a good (and very typical) family outing!

Everything about this makes me smile!
I am so glad we got this shot... the young woman working the camera was trying to get Gavin in between the hysterics... I just wanted the real shot!  He was not happy about Santa. At all! 
However, once it was over, he just waved and waved at him and all the decorations in the rotunda where Santa's village was.

Same shot... in color.  (I love it so much, I can't decide which edit I prefer!)

Gracie... "Um, does anyone see that Gavin looks like he is about to scream a scream that I might be able to hear?!"
Gavin... "Um... you have 1/2 a second and I am screaming!"
Preston... "I got this!"  (And cheesy smile!)

Gavin... "Your 1/2 second is up!"
(See top photo... screaming begins again!)

This is a zoomed screen shot from a video John took on his phone.  Gavin and Santa exchanged a split second of content gazes and then the tears started again!

Mama with her little Santa
(Thanks, Nana... cutest Santa outfit EVER!)

Little man checking out the ducks and decorations

Gavin wasn't any more thrilled sitting with Preston than he was with Santa!

Little Swanns by the fire

Dollie... a friendship rekindled

Remember the blue feather last year?  Gracie wouldn't let it go for hours, holding it on the bus ride all the way home from school, through taking off her clothes, putting them back on and even in the car on the way to therapy.  Up until that day, she had never held onto a toy (or any object) in the car like that.  And she didn't do it again until September 17th.

It all started on September 16th.  Well, in reality, it all started years ago. Gracie got her Dollie when she was just a baby.  They were pals for a long time, as much as Gracie can be pals with a toy.  See, as loving and doting of a doll mom as Gracie can be (Dollie, Edna, a couple of babies...), she can go equally cold and distant and leave the her dolls behind, ditching them and even refusing to look at them!  Remember the kidnapping last year?!  (While this is meant to be funny and lighthearted, the truth is that there have been many days over the years where a particular toy - - no rhyme or reason in our minds - - will trigger a crazy rage with Gracie and she won't calm down until that toy is out of her sight line.  Dollie has, many times over the years, elicited that very reaction from her.)  Gracie hadn't played with Dollie in ages.  Other dolls and babies, yes, just not Dollie. 

Back to September 16th... I took this of the three kids together following Gavin's 7 month "green chair" pictures.

Immediately after, Gracie signed, "doll."  (It just so happens that this is the same as our sign for Dollie since she was Gracie's very first doll.)  She signed again, much more forcefully, which made me feel as though she weren't just signing "doll," but, instead, asking for her old friend.  I said aloud what I thought she was wanting and Preston ran off to get Dollie from the playroom.  In the meantime, I put away the camera (doesn't it figure?) and, as a result, I took this picture with my cell phone when Gracie happily took Dollie from Preston with look of sheer satisfaction.

She got exactly what (who) she wanted and she was content.  For hours.  Days actually.  Dollie was attached to her like a limb... she went everywhere for an entire day.  And, if Gracie hadn't started school on the 18th, I think it would have lasted even longer!

Once Dollie was in her arms, she remained there all night.  She scooted all around the house with her, doing laps around the kitchen island and in and out of the playroom area.  Gracie took Dollie to bed with her - - a first. She began playing with her the moment she woke up in the wee hours of the night. And, as the sun rose, she continued playing with her. When she and Girlie (her brand-new-at-the-time nurse), left for a walk, she continued holding onto her! (It was only then, nearly 18 hours after her initial request, that I busted out the camera and started documenting!)

Before the walk

After the walk (she her disheveled hair?!)

Closely watching Gavin to be sure he wasn't planning on snagging her friend from her grip!

This just makes me smile!
 

She held Dollie while Daddy suctioned her trach...

... and while he pretended to suction Dollie's.

And, without dropping her for a second, she managed to get her shoes, socks, shirt and shorts off all while scooting off the cube chair!

She carried her to the car and transferred her from one hand to the other while I got her belted into her car seat.

And she held onto her when I put her shirt back on and seated her in the double stroller to watch Preston's soccer practice.

Later that night, she brought her to bed...

And, she fell asleep by her side!
(Yes... Gracie is asleep!  Yes, her eyes are open.  No, she can't close them all the way!)

And this is her at 3:43am, happily playing with her old friend.
(Her first day of school was only a handful of hours away!)

Later that morning, she held her as John carried her to the bathroom for a bath!

And, two days later, she held her tight as she got ready for school!

Had she not started school, I think Gracie would have continued hanging out with Dollie. They have, over the last few weeks, bonded several more times, but nothing as intense as their nearly 48 hour reunion! It just proves the point that, no matter how long between visits with old, true friends, it's easy to pick up right where you left off!

Tummy Time

In just five days, someone went from despising tummy time and fussing up a storm to this...

If only my workouts yielded such great results so quickly! 

Growing a Smile

They say that newborns smiling in their sleep is a natural, unconscious survival mechanism. The theory is that it endures their caretakers to them so that they are fed, held and loved. Interesting theory... I don't need a sleeping smile to help me with that, but, man, it sure is cute!

15 days old... The Sleeping Smile
Gavin's sweet "survival smile"  aka the "gas smile."

I wrote in Gavin's first month letter that I felt he was on the verge of a social smile.
On March 21st (4 weeks, 6 days old), while Gavin was happily hanging out with Preston and Gracie, I captured this...

Five days later, while I was leaving a voicemail (a serious voicemail, mind you), I squealed with joy mid-message as Gavin looked at me, bright-eyed and grinned. 
It was my first true, full-face, purposeful smile from him. 
When I told John that evening, he informed me that he'd gotten one that morning as well.

Then, today, it happened. The, "Grab the camera, he's going to put on a show" kind of smile. 
He went from looking at me like this...

To looking at me like this...

And this...

And, that, my friends, is how you grow a smile.
Stay tuned for a lifetime more of these! 

Our new son... 4-legged son, that is!!!

Meet our newest family member, Tobias ~ "Toby"
Christmas came a bit early in our household!
This handsome 10 month-old German Shepherd is our big family gift!

We adopted him on Monday, November 28th and, because everyone in our home has a lot of nicknames, he is already being lovingly called Tobster, TobyBoy and BigBoy. (BigBoy is fitting... he is going to be huge when he fills out!) He has also already earned a very special place in the hearts of our entire family.

He was a surprise to the kids - - neither of them had any idea that John and I had met him the week before. They had no idea we were even considering getting another dog... and we hadn't been until late October when, on duty, John rescued a female shepherd on the freeway. That event sparked a lot of dialogue between us about whether we were emotionally ready to get another dog (we lost Sophie nine months ago) and whether we wanted that responsibility with a baby joining our family in less than three months. We all miss Sophie terribly - - she is often the first thing Preston talks about in the mornings. And, while we will always miss her, we also have never lived without a family dog and that void was starting to feel ready to fill.

Some might think we are crazy getting a dog right before we are about to have a baby. Maybe we are. But, for us, it makes a lot more sense to get into a good routine with a dog now and bring our baby boy home to a pet than to try and get one later on.   I'd rather do the work now than with a newborn or toddler running around.   Granted, we didn't necessarily plan on a puppy, but we didn't plan on Tobias either.

At the point we started seriously talking about getting a dog for our family, I searched the Internet for the right type of rescue shelter that would be able to find us a good match (Sophie was a rescue dog, too).  When I found Westside German Shepherd Rescue, I couldn't have anticipated how great of a job they'd do.   I completed the application and let them know about a few females we were interested in, as that's all we were considering. (John and I have only had female dogs and had no interest in getting a male.)   When one of their foster families called about a young female we were interested in, she told me about a few of their dogs, asked me some questions and answered mine. Then she mentioned a male nine month-old pup that they had who, in her opinion, sounded like a great match for our family. I explained we were interested in getting a female.

Two weeks later (after one failed attempt to their home due to horrendous traffic) John and I met the foster family (nicest people... a wonderful family) and several of the dogs they were fostering. Midway through introducing us to the females they had, the foster "mom" asked if we'd like to meet Tobias, the male she mentioned to me on the phone. (I had told John about our conversation and we had looked him up on the shelter's site, but still were not into the idea of a male.) We met him... and instantly clicked, despite our hesitation.   They brought out the rest of the females and, before we left, we saw Tobias one more time. He was sweet, smart, easy on the leash, gently took the ball from John's hand multiple times, sat for us, laid down, played and all signs, including the instant bond we felt, pointed to him being a great fit... but we still weren't sure about having a boy. 

The drive home was quiet, we were both deep in thought and felt silly for not being certain just because of his gender.   (Those of you who we texted, called and emailed about this subject matter... thank you for your input!)  By that evening, we knew we wanted to bring him home, but we needed to wait until John had a few days off in a row in order to help him acclimate to our family as a unit. So, on Monday, unbeknownst to either of the kids, we went to pick up our four-legged son.

This is Preston, in the car, not yet knowing what we are doing other than "running errands."

The sound isn't great on here, but his reaction is clear and priceless!
And, as I anticipated, he was super happy that the boys will now be taking a 4-2 lead!

When we got Toby in the car, he was nervous... and so were we.  There are no guarantees in this process.  But we were also excited and so happy.  About halfway home, he scratched at his crate door and let us know he needed us to stop so he could go potty.  Such a good boy!

The boys... playing ball and bonding.

Gracie's first encounter with Toby. 
She was so happy to see him and was laughing and signing "dog."
We had hoped to surprise both kids together, but it just didn't work out with school schedules.  
Preston was sweet during the car ride, at one point saying that he was sad Gracie couldn't be with us to pick him up. (Considering it was close to three hours  total in the car, it worked out better for her!) 

A welcome gift from our sweet next door neighbors... well, from their one year-old lab!

John bonding with Tobias on his first full day with us!

There are no words to describe how happy this made us.
This was Toby's second night home and Gracie laid with him for about 45 minutes.  She was so happy to cuddle up to him (and invade his space multiple times!).  He was such a good sport and just took it!  Toby clearly senses how special Gracie is and that only made us realize how special he is, too.
Such a good boy.

We are, at this point, just shy of four days with Toby and are still very much in the "getting to know each other" stage. He definitely has some puppy behaviours - - he loves getting paper towels out of the trash can and he likes to sneak shoes that aren't in the baskets or certain toys from either of the kids' rooms (so far only in the mornings!). The good news is, he is easily redirected when we correct him and give him one of his own toys. He likes to explore, so he definitely cannot be trusted off leash in the front yard. He is smart, gentle natured yet protective, great with the kids, house trained, crate trained, a great sleeper at night and getting more and more cuddly and affectionate with us each day. John and I are so happy we made this decision for our growing family.

And the tie goes to...

We are absolutely overjoyed!
Our little tiebreaker looked great in the "big ultrasound" on Tuesday.

The tech and perinatologist were wonderful... both very sensitive and professional. Though baby boy didn't cooperate and give many good looks at his face (he crammed his little self against the wall of my uterus and put his hand in front of his face nearly every time we tried to look!) and was not in an ideal position to get the perfect view of his heart, the perinatologist did not see anything alarming and just wanted us to follow-up with our fetal echocardiogram as standard precaution. Such a relief.

We chose not to find out the gender during the scan and, instead, had the tech put the info into an envelope for us. John had a "girl" vibe all through the ultrasound and after. I haven't had a gut instinct at all... some things about this pregnancy were making me think girl, some boy. When the tech told us to look away if we didn't want to know, I was thinking "boy" because that is so much more obvious on the scan. But, because John usually has pretty accurate instincts, I wasn't sure. For the last 7 weeks, Preston has only said the baby was a girl once. Otherwise, he never wavered with how sure he was. If you asked him what's most important, he'd say, "Healthy." If you asked him what he wanted and what it was, he'd say, "A boy." That evening, when we gave him the ultrasound picture, he was so excited when he read, "Boy!" Though, really, he already seemed to know. So cute!

John and I peeked at lunch after the appointment. With a poker face, John looked first. He handed it to me and as I read, "It's a Boy," I burst into tears of joy which then set off a chain reaction in John. We didn't "care," as our only hope, of course, was for a healthy baby.   That being said, it's simply perfect and wonderful that Preston gets the baby brother he so badly wanted (and was so sure of all along) and Gracie gets another fierce protector in her corner.

Baby Boy's profile.
It's clearest shot we have since he wouldn't cooperate when they tried to get the 4-D pics!

The tie goes to the boys...
but Gracie and I know who holds all the power! :-)