Blessings upon Abundant Blessings

My heart is in a good space right now. Just a good, sweet place. As we celebrated the birth of our savior Jesus Christ earlier this week, I looked at my children, drunk in their sweet faces full of excitement, and just was...was grateful...was happy...was just filled with a profound sense of how very, very blessed we are. Even with a knee injury for me, a double ear infection for Bodie and constant pain for Dusk due to his collapsed hip, even so, I was so struck by how blessed we are. What an answer to prayer - a peace which can only be given by our Savior. I am so grateful for this time of reflection, since I know it will strengthen us for the year ahead, which will include both Bodie's and Dusk's surgeries and many other surprises I am sure. So, for today, I am peacefully happy...

Christmas this year was so wonderful. We got a wonderful Christmas present the week before Christmas, in a fantastic cardiology appointment for Bodie! All looked well, we were sent home with one med change and told to come back in 3 months for our next routine appointment, where we will discuss the Fontan. That one med change (to up his Enalapril, for my heart mama followers) has made a huge difference for him - he has been pinker, satting better and seeming to have more endurance. It was a wonderful surprise and will hopefully keep him more comfortable until the summer.

Bodie with our beloved cardiologist, celebrating a great appointment. :-)

After that, our Christmas festivities really kicked off, with Sierra's kindergarten class Christmas party, which we were all able to attend. BEYOND adorable to see these kids get so excited about Santa visiting and their pizza party. :-)

Santa came through our neighborhood and the kids were overjoyed to get to see him (we'll just ignore the fact that Santa clearly does not share their excitement! haha!)

Not sure whether the kids were more excited to see Santa - or sit in the firetruck!

Then, Popo Alan and Gram Jan came to town and boy did we have a ball with them! They got to come with us to the Christmas Eve service at the church associated with Sierra's school, which was super fun.

Gram Jan and Popo Alan with the kiddos.

I'm just trying to figure out WHERE my babies went?!?

You'll notice Daddy isn't in these pics - sadly, this is because our water heater blew up on the 23rd and Daddy had to stay home to wait for the guy to replace it, so he missed the Christmas Eve service :-( Luckily, Daddy did get to join us for dinner afterwards, and our first ever "Bennett Family Express" trip to see Christmas lights. The kids thought it was such a treat to get their own tickets, wear jammies and drink hot cocoa out of sippy cups in the car. Fun, fun, fun times!

Christmas morning, the kiddos were over the moon to wake up to find out Santa had stopped by - and left behind, among other goodies, a Lite Brite for Sierra...

and a Tonka Truck set for Bodie (thank you Gigi and Popo for that one)...

Me with my babies Christmas morning (man I love these kiddos)...

Opening stockings...

Bodie opened up a pair of squeaky shoes...and was so excited that he immediately stripped off his footed jammies so that he could put them on! So funny...this kid never ceases to crack me up!

Sierra with one of her favorite gifts - a princess tea party set from Aunt Missy, Uncle Paul and her cousins! (thank you so much for getting her a PLASTIC set!)

Gram Jan and Popo Alan got both of the kids name plates for their bikes, which they LOVED.

The entire time they were here, the kiddos got SO MUCH fun, snuggle time with their grandparents. We felt so lucky that they clicked so well this trip (in previous trips, it has often taken Bodie some time to warm up)...

(the kids spent a lot of time "supervising" Popo and daddy in keeping the train set running)

(Fellow heart moms, can you believe how rosy those lips are?!? Thank you, Enalapril!!!)

For Christmas, Popo Alan bought the kids a Gingerbread house. He, apparently, had the idea that it would be something I could do with them next week sometime. I, on the other hand, have vivid memories of the experience doing it last year with the kids, so I made darn sure we did it before he left, so that he could be in charge of it! As I suspected, it turned into daddy and Popo working hard...

while the kids were making a mess somewhere else in the house (haha!)...

But, at the end of the day, I have to say that daddy did an incredible job on it and the kids were psyched to decorate it, or, ok, just eat the decorations. :-)

The last thing we did before Popo and Gram Jan left was a trip to the park...

(again, heart moms look at those lips!!! And it was freezing outside - this kid is usually sooooo purple in the cold!)

If you're still reading (sorry - I know it was long, but we had so many great pics I had a hard time choosing!), MERRY CHRISTMAS from the Bennetts! See you in 2013!

Our sweet Girl

Today, Bodie is the exact age Sierra was when he was born - 2 months and 8 days shy of 3 years old. Oh my. Looking at Bodie now, this little ball of innocence, it's hard for me to remember Sierra this age, before everything became so different for our family. Our family has been through so much in the past almost 3 years, it is hard to remember when life wasn't this way, when Sierra was just a sweet, precocious baby girl like any other.

But she's not like any other girl. She has slept in ICU rooms while her brother has fought for his life, she has heard her parents talk of surgeries and survival rates, she has watched medications administered, stethoscopes pulled out of seat pockets in the midst of casual discussions, she knows all of Bodie's doctors personally and she has asked where heart friends are, friends who have passed on to Heaven. We've had conversations about things no 5-year old should ever have to think about. At the tender age of 5, she has already learned that nothing in life is certain, except Jesus. 

I don't know that Bodie would have handled things with as much grace as Sierra as. Actually, I do know - he wouldn't have. Sierra is an amazing little girl and I think we often often forget that it wasn't just Bodie, or Dusk or I, whose lives were turned upside down, but so was Sierra's. And she has handled it in such an extraordinary manner, just falling into this new normal we have as though it's always been this way. 

We are so proud of her and how much she has weathered the past 3 years. She has grown into such a compassionate and curious little girl, always wanting to help. She is kind, she is sweet, she is understanding, she is energetic (way too energetic sometimes, but we'll take it!), and she loves her brother so much.

We love you, Sierra. So very, very much. 

Still waters for my soul

On Monday, after dropping Sierra off at school, Bodie and I headed out in the rain to the bi-weekly MOPS (Mothers of Pre-Schoolers) Bible study at our church. I love rain...from inside my nice, warm house, all cozied up in my sweats. So I contemplated not going - almost changed my mind as we were heading there. But I felt a stirring to go. And, besides, Bodie had a cold coming on which meant he was cranky and clingy as all get out. So I figured what the heck, even I got 10 minutes away from him, it'd be worth the drive in the rain! ;-)

After dropping Bodie off in the nursery and sitting down with my fellow mommies, our leader told us we were covering Chapter 5. I turned to it to find it was titled "Eternal Life" and was the story of Lazarus, his resurrection, and Martha and Mary's response to his death. The "discussion starter" was "What are some of your honest feelings and fears about death - especially when a family member or friend dies?" Holy.Crap. Ok, God I get it, loud and clear. You don't want me to avoid this any longer - you want me to open up, and do it in a safe environment, with fellow Christian women who can walk me through it.

So, as these sweet moms went around the circle talking about their grandmothers passing and fears that they would die while their children were still young, I realized how different my life is than theirs, how much more I have seen, how much this CHD walk has changed me, how much it has changed my perspective on things. When they came to me, I took a deep breath and got out "I think I have a different perspective on death because of my son. When I think of death, I don't think of grandparents dying. Not anymore. I think of kids, most of them under the age of 5, of babies, of smiling, happy toddlers taken from their parents far too soon..." and then I just started crying. And man, the floodgates just opened. I talked about my deepest fears, about this scary walk our family is on. These poor women. They thought they were coming to have a fun little Bible Study, and then Debbie Downer showed up for her own personal therapy session. ;-) Most everyone was crying by the time I was done talking. 

You see, I have been struggling with this A LOT lately. I'm scared. I am so scared I cannot even put it into words. I don't WANT to put it into words, for fear that saying it might make it a reality (as if somehow we could jinx God's plans - I know, I know - it seems ludicrous, but let's face it, half of what we humans do is pretty dang stupid to begin with, right?). 

Bodie has MAJOR open-heart surgery coming up and I can't avoid that. Up until now, it's sort of been looming out there, somewhere, in the distance and occasionally the fears would come up, I'd blog about it, get it out of my system and then I'd push them back down knowing we were still a year or more away from it. But, the past few months, as I've watched Bodie get progressively more blue, tired and winded, it's come back up and I find myself unable to push the fears down. Every time he takes a break, or asks me to hold him, it hits me again - his little body is ready for the Fontan. We can't avoid it much longer. We're looking at next June/July if he can hold out that long. 

Bodie had an EP (Electrophysiology) appointment this week at CHLA and after so many nurses and doctors asking how soon he would be in for the Fontan, what his energy levels were like, what our "Plan B" was if he couldn't hold out until June/July, etc., I seriously just wanted to vomit. And honestly, if I didn't have the kids with me and all up in my business in the bathroom, I probably would have. But, you know, I didn't feel like having to explain it to them! So I just settled for an overwhelming feeling of chest tightness and nausea. So, needless to say, my heart has been really unsettled lately. I feel like we are just closing in on the Fontan and I have a hard time breathing my way through that thought.

Odds are, Bodie will do very well with the Fontan. Most kids do very well with it, are out of the hospital within a week or 2 and home and recovering. Within a few months, most kids are better than ever, have more energy than ever, etc. But, not all - 2 of Bodie's heart buddies went into heart failure and needed transplants within months of their Fontans this past summer alone. And one of them passed right after her transplant just a month before her 4th birthday. The fact that the statistics were on their side are of little comfort to those families who find themselves on the losing end of those statistics. And, at the end of the day, this is STILL major open-heart surgery with all of the attendant risks, not just to his heart and his body, but the neurological risks of being on bypass to his mind, his sweet, silly, feisty little mind. So, this fear, it is ever present with me, creeping into every facet of my mind, of my body, of my spirit. It's a lot for one person to take on.

So, when our Bible Study was about eternal life, and about how EVERYTHING God allows to happen, including whether or not he performs miraculous healings is all about revealing His glory, not about what we as humans want - I knew God called me to MOPS this week for a reason. Because it was a lesson I needed to hear and allow to sink in. Martha, even in her anger at God for not being there to save Lazarus when he was dying, yet still believed in God and trusted Him. What a great example of faith.

One of things we talked about was that God calls our primary focus to be on HIM and on our relationship with Him, not on material things. And material things are pretty much everything else, including our family and friends. I had never thought about people being material things, but I suppose in this context, they might be considered just that. That's not to say that we are to ignore our family and friends or that they aren't more important than other material things, but simply that they are not as important as God and our purpose in HIM. When we focus on HIM and daily ask Him that our lives be used to His glory, to draw ourselves and others around us to Him, it changes our perspective. We are able to trust Him more deeply and to rely on Him more fully. This was such a reassuring thing for me to remember; to remember that when Bodie was born, our greatest prayer was that his life would glorify God. And still today, that needs to be our prayer.

We also talked about how Jesus wept when we saw Lazarus dead, how as a wholly human being, everything we are feeling, he has already felt. Just because we are focused on God and His glory does not mean we are not allowed to mourn, allowed to anguish over the loss of our loved ones. Last week, as I wept to my best friend Valerie about my fears over Bodie's upcoming surgery and the uncertainty, she gently reminded me that "...there is NOTHING going on here that God doesn't know about. And God in heaven walked through 33 years of KNOWING beyond a shadow of a doubt that his Son was going to die. God KNOWS your fear and agony." What a blessed reassurance and a powerful reminder. I can bring my fears of this unknown journey to God, because HE KNOWS. He knows what it is like not just to think you might lose your son, but to know without a doubt you are going to. How much more can he identify with my fears that I might lose my son? I can cry to my King and He can give me comfort. What blessed reassurance this is to me. And what blessed reassurance that he has placed Valerie in my life to give my comfort in my dark hour. How she is able to, in spite of the fact that she has never walked in my shoes, provide comfort to my soul, is an indescribable gift. I am daily thankful for her gift of friendship, love and support.

So, today, although I am still in fear, I walk a little lighter, a little of my burden unloaded. My goal in the upcoming months is to pray daily to turn this over to God more and more, to truly surrender my son to him. I'll be honest, I surrended my son to Him the day he was born and in my deepest of hearts, I had surrendered him completely. But since then, I've started holding pieces of him back, to an incomplete surrender. Now that I know my son as Bodie and all his intracies and amazingness, I've held back - I don't want to let him go, to surrender him to God's plan, to His glory. But I have to. And, in realizing that, my fears make sense. So, I'm in the process of letting go - of loving my son as much as humanly possible, but still, at the end of the day, knowing that I am only his caretaker, here to love him as long as I have him and knowing that he is ultimately God's. 

I love this child so much. And as powerful as a mother's love is, God promises me that his love is deeper. I cannot even fathom that, but His word promises me that it is so. My love is imperfect; His is perfect. What sweet surrender to my soul - to surrender my son to the only one who can love him more than I. What a blessed gift He gives us.

Grateful Hearts

At Thanksgiving this year, the kids and I made a "tree of Thankfulness" of things they were grateful for. 

(yes, this was seriously the best pic we could get with Bodie and the tree in it. What can I say? The kid hates clothes.)

 For posterity, here was their list:

Sierra: 

Jesus, My Heart, This little light of mine, Cousin Hannah, Cousin Amelia, My Mommy, My New School, Dada, My Family, Candles (because God is in my heart), and Gigi & Popo. 

Bodie:

Gigi, Jesus, Cookie Monster, Mommy & Daddy, Daddy & Mommy (& puppets), Daddy, Mommy, Mommy, Gigi, Mommy, Sissy, Popo, Mommy, Mommy, Green Beans and Ketchup. (I was relieved that I was able to get him to branch out beyond "mommy"!)

And as for mommy and daddy, well, we made our own list of what we're grateful for...

Our family

(maybe not so grateful that our family pictures resulted almost entirely in variations on this theme - but hey, it makes for good memories!)

Slip and sliding on Thanksgiving Day

 

(you mean everyone didn't have weather this warm?!?)

 

 

Family traditions (like new Christmas jammies on Thanksgiving night):

Having friends and family (and a medical team) who fully supports letting our medically fragile child live as normal a life as possible...

(and grandparents who aren't afraid to take chances!)...and be as much like his healthy sister as possible...

Having grandparents in our kids' lives who love our children and want to know them and be involved as they grow up

And...minivans...

wait, back the bus up, did I just say "minivan?!?" Yep. That was Amy's early Christmas present. C'mon peeps - don't judge till you've tried one. They are, in a word, AMAZING. (Stylish? Perhaps not. But amazing, nonetheless? Yup.). I'm not gonna lie - I'm a teensy bit in love. I'm almost there to my official "soccer mom" status. And totally digging it. :-)

Oh, and we have lots o' appointments coming up over the next couple of weeks (Electrophysiology, Pulmonology and Cardiology (Mommy's quarterly freak-out has already started for that one) for Bodie as well as starting the 2nd opinion process for both Bodie and Dusk (to discuss/plan surgical options for his hip replacement)). We covet your prayers for all of these appointments, particularly for clarity in the second opinion processes. 

And Bodie is definitely starting to show more signs of being Fontan-ready. He's getting winded much more easily, and, for the first time ever, is starting to just slow down all the way around. There's not many pictures of him slip 'n' sliding, because, honestly, he could only do it 1 or 2 times by himself - after that, he wanted me to hold him (which, to be honest, was a whole 'nother experience for me - I seriously deserve extra kudos for slip 'n' sliding with a kiddo on my hip! haha!). He just didn't have the stamina to keep up. We knew this was coming. We knew when he got to the point that his heart started to slow him down and affect his ability to keep up, that it would be Fontan time. We're finally getting there. He's starting to show us that he's ready. Knowing that makes all of these appointments a little more scary, a little more real. We're going into this next Cardiology appointment fully expecting to have the Fontan discussion. So, please, keep us in your prayers in the weeks and months ahead. 

Thanks and hope your Holidays are off to a great start!

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!!!

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.

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!

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!