Tuesday, November 20, 2012

A blessed heart...

Grandma and Grandpa Gerrish with Sierra (2007)

My grandmother passed away today. At the amazing age of 97, she went to be with Jesus, to dance at His feet with her husband of 72 years, Grandpa Don. And what a life she led! She and Grandpa still held hands and danced together almost up until his death 2 years ago. I am so grateful that she is now at peace, her body is at rest, that she is with the one she loves.  But she will surely be missed!

How ironic and special that she passed just before Thanksgiving. In my mind, Thanksgiving forever will be Grandma Gerrish's holiday.  I have such vivid memories of her planning her spectacular Thanksgiving feasts, setting out her signature handmade place cards, the myriad of pies (always homemade Key Lime, Apple, Pecan and of course Mincemeat - which I honestly thought had meat in it until just recently! haha!) and her delicious mashed potatoes. I have such wonderful memories of sitting with my cousins at the kids' table and playing together at Grandma and Grandpa's house. Although Grandma Gerrish is gone, she has instilled in all of us left behind such a legacy of family, tradition and love. 

Now, I pass along that legacy of family, tradition and love to my children. Knowing that Grandma was close to going home this week, I have been focused on the speed at which life passes, heavy with the knowledge that these years of having little ones underfoot will be over in the blink of an eye. I've been intentional about focusing on the kids this week, spending quality time with them...

Spending time at the Palm Springs Children's Museum...
Where they had a VW Bug the kids could just paint all over! How cool, right?!? Sierra enjoyed it...
and Bodie seriously would have stayed there ALL DAY if we'd have let him!
And they also had a pretend grocery store. Sierra was such a little lady, filling her shopping cart up and protecting Bodie when anyone tried to take his cart...
And Bodie was, well, Bodie. Total bull in a china shop. He was racing around the "grocery store," filling his cart up to overflowing and then fighting with the 7-year old who was pretending to check him out, grabbing his arm and telling him "NOOOOO!" when he tried to help Bodie unload his groceries onto the conveyer belt...

We also created our first ever "Thanksgiving Tree," where the kids got to decorate leaves with things they were grateful for. I'll share the details later this week, but as a little preview, I should mention that Bodie made 10 leaves. 5 of them said "Mommy" on them. Haha. I love this kid! (Oh, and I tried to get a pic of Bodie with the tree, but the fact that he had no pants on kind of rendered all pics inappropriate - but he was JUST as excited as Sierra!)

We also got lots of snuggle time! 

Grandma and Grandpa Gerrish lived in Florida, so we didn't get to see them nearly as often as we would have liked. They met Sierra. Once. When she was 4 months old. They never met Bodie. But two years ago, when Bodie was born, Grandma Gerrish offered to give Bodie her heart. No, not as a "when I pass you can have my heart" offer. As a real life living transplant. Bless her heart, literally. Tonight, as I think of Grandma passing, I look with extra fondness at this picture, her son loving his grandson, a total miracle of a boy, living and thriving with a crappy excuse for a heart. She would have loved to see that (well, not the pant less part, but the rest!)...
Thank you Grandma, for everything - we miss you and LOVE you! Please give Grandpa our love - and have the most amazing Thanksgiving feast with him!!!

Wednesday, November 14, 2012

Hitting Close to Home

I know that Congenital Heart Defects are common. I know that they affect 1 in 100 births. I know that 4 in 10,000 babies are both with HLHS. And, through my work with Sisters by Heart, I've met hundreds of families affected by this diagnosis. But I'd never met anyone from my life before. From my life before I became a heart mom. Until now.

Last Friday, I got a call from a close friend. She was in tears. Her words "Amy - we had our 20 week ultrasound today. The baby has been diagnosed with HLHS...." shook me to the core. Oh, the worry, the sadness, the devastation in her voice was unmistakable. 

I'll be honest - I see a lot of newly diagnosed families. (Sisters by Heart has received 5 new nominations in the last 24 hours alone!) And there is a percentage that don't make it. The death and devastation HLHS leaves behind is a hard pill to swallow. And, for that reason, I distance myself. I have to. I have had Facebook friends who ask me how I deal with such a tough walk, because they see my Facebook posts about babies going in for surgery, about kids passing. But what they don't get is that the ones I post about, they are literally a fraction of the ones I know about, the ones I hear about every single day. They are the ones who get through the walls I put up to protect myself. I care about all of these babies, of course, about all of these families; but if I didn't somehow distance myself, I would be in a pool crying all day long

But this family, my friends, there is no wall there. Anna and Ryan are friends of my heart. When they lived out here in Los Angeles, we saw them every week at church, they came to our Home Fellowship every Wednesday night, we vacationed with them in Mammoth when I was newly pregnant with Sierra and was so nauseas I could hardly function, and again with them in Big Bear when I was in the third trimester and felt Sierra hiccup for the first time. They were there, praying for us when we lost the baby in between Bodie and Sierra, and supporting us and praying when we received Bodie's diagnosis. When God led them to move to DC, we had their going away party at our home. They're not just acquaintances, they're friends.

To have a close friend face a new HLHS diagnosis is kind of blowing my mind. There is no doubt in my mind that God aligned our paths the way He did so that Bodie, and Dusk and Sierra and I, might light the path for their new baby, and Ryan and Anna and their little boy Nathan as they begin this journey.  

My emotions are kind of all over the place to be honest. Hearing Anna's fear, and her pain, and her spirit in trusting the Lord no matter the circumstances, and in turning her son over to God before he is even born brings back so many memories. I remember standing in Anna's shoes, the fear, the worry, the unknown. I remember wondering if we were doing the right thing for our son, if I'd ever get to meet him, to hold him, to see him take his first steps, say his first words. It's a lot to take in. 

But today, as I laid next to Bodie, staring at the wonder he is, snuggling with him, listening to his soft, even breaths as he slept, I am reminded that all the fear, every last second if it, has been completely and totally worth it. 

I so wish I could fast forward Anna and Ryan to this stage in the journey, with a sweet little boy to love and parent. But I can't. So I pray for them instead. And I ask you to pray alongside me. Pray for a miracle for their baby - and peace for Anna, Ryan and Nathan as they get to be witness to a miracle. Because, really, even seeing an HLHS baby have the opportunity to live, to thrive, is a miracle. And praise God for that.

Saturday, November 3, 2012

Big Goings on at the Bennetts

Whew! What a crazy few weeks it has been for us! Not only did I announce my trial separation from Facebook (to which hubby replied "Did someone hi-jack your blog account?" Ha!),... 

Daddy finally got his say and little dude got one BIG haircut...
(shhhh...don't tell daddy, but he was TOTALLY right - he looks so much better!)

I finished my One Dress Project (yes, I really finished it!!! More on that later!), we finished flu shots for everyone but daddy (if you happen to see him, kindly nudge him to get his butt over to Walgreen's for his, please!) and we did Halloween!!!

We carved Pumpkins...

Which thankfully, went MUCH better than last year!
 Bodie got to go trick-or-treating with his TWISPP group, which is just about the sweetest thing ever. TWISPP used to be located in an industrial setting, with several large office buildings and warehouses within the same block. TWISPP has traditionally trick or treated through the offices on Halloween and it's a super fun event. Well, TWISPP moved about a mile down the road earlier this year...and the program coordinators weren't sure what they were going to do for trick or treating  this year - until the tenants at the old location called and asked them to bring the kids back - that's how much fun they have! How cool is that?!? So we got to do that again this year - such a great experience.
Bodie and I all dressed for the occasion (is he not the cutest little bat ever?). 

Bodie with his beloved Teachers "Iceman" Jason (in the superman costume) and "Crazy Hair" Adam. 

I promise, he loves these guys. He really does. Hard to explain the bond between him and Jason except to say that, as Bodie's mother, I am eternally grateful for the love and compassion these two guys, particularly Jason, have shown toward my son. I already get teary thinking about the fact that they won't be coming with us when Bodie goes to preschool in the winter!

Then, Sierra got to get in on the action, when one of her closest preschool friends and her little brother Giacomo and their awesome parents came over for pizza and Trick or Treating. 
Seriously, are these girls adorable or what?
This pretty much sums up Bodie's night. 
He LOVED Trick or treating. But the poor kid just couldn't keep up. He could make it to maybe 2 houses and then he'd be begging me to "carry me, mama!!!!" We took lots of breaks and even had to bum a cup of water for him from a friendly neighbor because the poor kid was so out of breath. This is pretty standard stuff for kiddos who, like Bodie, are on the later Fontan track. The reality is that he's outgrowing his physiology. And this is just how it's going to be until his Fontan. But I'll be honest - as his mom, it was kinda hard to see. :-( But, like I said, he had a blast and didn't really care that he couldn't keep up! 

And because we decided having a single ventricle and rhythym defects weren't enough to make Bodie unique, we've added a diagnosis of asthma on top of it. :( Bodie has always had a persistent cough that comes and goes, usually when he's sick. I just always chalked it up to his paralyzed vocal cord. But oddly enough, over the last couple of years we had discovered that albuterol through an inhaler made the cough a lot better. But it honestly never occurred to be me that he had asthma (I suppose because no one on either side of the family had it, so it never was even on my radar). But I started finally putting the pieces together a month or so ago, and got over my fear that Bodie's cardiologist would diagnose me with Munchhausen's for finding something else wrong with my son and called her for a referral. 

We got in to see the Pulmonologist this past Friday. When I explained Bodie's symptoms and his first question was "Ok, now tell me again why you DON'T think your son has asthma?," I knew we were on the right track. Apparently, you can't do a definitive test on kids this young, but based on Bodie's symptoms, the doctor feels strongly that he has mild to moderate asthma. So he's starting him on Flovent twice a day with Xopenex as a rescue inhaler as needed. When he described how asthma works, Bodie's symptoms completely made sense. So, while I'm not thrilled at starting him on steroids, I have felt for a long time like he wasn't comfortable and we needed to change something. I am really hopeful that this can help get it under control and give his body a break! (Something he did say that was interesting was that approx 8% of kids in the general population have asthma, but long ICU stays, multiple intubations, underlying cardiac conditions and open-heart surgery can all put a child at increased risk for asthma. That was definitely interesting food for thought for me). Anyway, we go back in a month to see if the meds have helped at all. 

As you can see, Bodie was clearly distressed by this new diagnosis. As I was scheduling our follow-up appointment, I turned around to find that he had stripped his shirt and shoes off and was standing on the table in the reception area, having gleefully discovered Sponge Bob was playing on the tv)...

We covet your prayers as we move into this new realm of Bodie's health, that we will find a solution that fits best for him!

Thursday, November 1, 2012

Facebook is ruining my life...

So, this may be either the bravest or stupidest decision I’ve made yet to post this blog entry. But it’s been on my heart, so it’s getting posted…

Facebook is ruining my life. 
But it’s not just Facebook. It’s email. It’s Blogger and Wordpress. It’s Instagram. It’s texts. (Didn’t bother to even start Pinterest because I didn’t have the mental time or space for any more of it). It’s just…everything. Everything electronic. It’s invaded my life.

I have no personal mental space anymore. It’s eaten up 24/7 by social media. It has honestly become an addiction. I can’t be the only one, right? My husband (who somehow manages to survive without a Facebook account), has told me more than once that he thinks I’m addicted to Facebook. Out of pride, I have rebuffed him every time. But the thing is, he’s right. And it’s hit every facet of my life.

I sleep with my phone by bed (I use it for the alarm – at least that’s my justification), so it’s there first thing in the morning. I am late to either boot camp or the gym every single morning. Why? Because I’m oversleeping, or tending to a sick child? Ok, sometimes. But usually, it’s because I’m checking Facebook or email, plain and simple. So now Facebook is making me fat. AWESOME. Thanks Facebook. 

I check Facebook and email in the car. Always at stoplights, not while the vehicle is actually moving, but still…I am missing out on valuable conversation time I could be having with my kids, moments I will never get back. Same with evenings, during bedtime routine. I am stopping in my office to check email in between bath, bedtime routine and prayers, just to see if anything important has come in. REALLY? Is there any email that could possibly be more important than investing in the lives of my children and sharing silly bedtime stories and precious prayer time with them? The answer, of course, is NO, but when you’re faced with an addiction, sometimes it’s hard to see that.

It’s affecting my marriage. During car rides, when the kids are asleep and hubby and I could be having profound conversations about, well, whatever profound things married people discuss, he’s forced to have a one sided conversation as I say “hmmmmm” and “oh” because I’m too busy checking out other people’s lives on my phone to pay attention to my own awesome husband sitting right in front of me. And date nights often don’t start until way too late at night because I’m on the computer after kiddos go to bed, checking email, reading blogs. My priorities are totally screwed up. I’m not proud of it, but it’s where I’m at.

Don’t get me wrong. Social media has its place. I have met an incredible community of parents with children facing the same life threatening condition as my son – that never would have happened were it not for the very avenues of social media I’m blasting above. And Sisters by Heart could never do the incredible work we do without Facebook and social media. But, like everything in life, it has its place. And when that place is at the top of your emotional pyramid, something has to give.  It seems that many, many people are able to balance Facebook with their “real lives,” not having it take over their lives. I guess I’m just not one of those people. It is simply not possible for me to be the wife, the mother, the friend I need to be as long as I’m giving more attention to the person on the computer or the phone than the person right in front of me. 

And, if (hypothetically speaking, of course), I were the kind of mom who has her phone on her all the time, and is always checking email/FB/Instagram, what kind of role model am I setting for my kids? How am I modeling Jesus’s love for them? How am I doing any justice to my most important calling, that of a mother? I honestly could cry thinking about the values this is teaching my kids, how they are already learning that electronic devices are more important than they are. Because, really, that’s EXACTLY what they’re learning from me. There’s such a short window where I can see into their little minds and participate in their lives. Why would I sell us short and make that window smaller than it already is? Why wouldn’t I take up every opportunity to soak this time up? 

But here's the cool thing about life - every day is starts anew. And every day you can make the changes you want to see happen.
So, we’re making some changes around here. I’m setting limits. From now on, my phone and computer are getting turned off when I start making dinner – and don’t get turned back on until kids are down for the night – or not at all, if it’s a date night with hubby. (What a great deterrent, right? Because, seriously, who wants to take the time to boot up your phone, or even worse, your computer, just to check an email or 2?!?) and I'm pretty sure the world will not stop because I didn't respond to an email the second I received it. I tried that tonight, and you know what? While I listened to awesome, relaxing music, the kids played and the entire kitchen got cleaned while dinner was cooking. And we sat down and ate at the dinner table (instead of the bar, which is our usual dinner spot). And the kids had time for books after bath and got to bed at a decent hour. All because I tuned out the electronics. You see, I was wasting far too much time just checking an email here or there, slowing everyone down in the process. 

And tomorrow? No email until after kiddos are off to school/preschool. And limited social media time during the day as well. 

I’m sure I’ll have slip-ups, days where it really is important to check an email or return a text. But for me, it’s the first step. The first step toward taking my family’s priorities back and achieving a better balance. So, if you send me an email or Facebook me, don’t be surprised if you don’t get an answer right away. It’s because I’m off living my life...or at least trying to!