Yes, I'm really doing this...

Near the end of last month, a heart mom friend of mine mentioned a little thing she was participating in called "the October Dress Project." The long and short of it is that you wear the same dress every single day for a month. WHY? I mean, really, WHY? (I know that's what you're thinking.) To steal from my friend's blogpost about it (the entire post can be found here), ODP is "a brilliant idea, created by two friends when one of their grandmas commented that women only needed one dress to wear an entire week, and one for Sundays. They decided to wear one dress the entire month of October. Yes, you read that right. The same dress everyday for 31 days. Why? The basis is simple- anti-consumerism, pro-simplicity, anti-conformity, pro-imagination. But you can transform the ODP to mean whatever you want it to!"

So I decided to take the challenge. For me, it was about everything Natasha mentioned, but honestly, even more, it was about taking time for my appearance (which, oddly enough is the opposite reason my friend did it!). I'm a mostly stay-at-home mom of young kiddos. Most days, I'm in a tee shirt and jeans, with my hair in a wet bun on my head. I usually have some make-up on, but, unless I have a special event, it's rare that I take the time to make sure I look nice. Accessories? What are those? And what do you mean a Juicy Sweatsuit isn't appropriate apparel for, well, everything (because, really, you know as well as I do that IT SO IS). I continually live in fear that I'm going to be ambushed by Stacy London and Clinton Kelly (I'm actually serious about this - a year or so ago, when one of Dusk's aunts surprised the girl cousins with a secret trip, I honestly was afraid it might actually a plan for What Not to Wear to ambush me!)... 

But I digress. I wanted to take the challenge, to help me learn to refocus on myself a bit, to think critically about my appearance and set a better role model for my daughter. I'm not talking being super materialistic and focused on myself (I assure you, that is NOT the example I want to set for my daughter); I'm just talking about taking a few extra minutes to make sure I look presentable. I'm talking about letting her know that just because a woman works in the home doesn't mean she becomes less of a woman, that her appearance doesn't matter anymore. I want my daughter to know that moms are still women, too. Moms first, yes, always my highest calling and privilege is to be a mom. But I'm still a woman and I don't want to lose that in being home all the time.

So that's why I am doing it. I didn't want to post on the blog because I figured that, well, I'd probably give up a few days in (anyone remember Project 52?). But, here I am, 18 days in and still hanging in there. Here are my pics so far...

Day 1: the dress. 

Day 2: dressing it up with pearls I haven't worn in years and a cute jacket (loved this one). 

Day 3: Trying a top under and a scarf belt over (not a fan).

Day 4: Added a cute short jacket I don't wear anymore and some beautiful beads I had totally forgotten about.

Day 5 (day): Threw a shirt over it with matching bracelet for a playdate at the park.

Day 5 (night): Some much needed vavavoom for Date Night with the hubby. :-)

Day 6: Added a rose belt over and a black bandeau under with pink pearl bracelet (15+ years old - and hadn't been worn in almost that long).

Day 7: Getting a bit cooler, so added leggings and a tank under - and my trusty jean jacket over.

Day 8: An ill fated attempt to re-popularize the pashmina (seriously, does anyone even remember these things?). 

Day 9: Added boots and a long sweater to make it more seasonal (loved this look).

Day 10: My breakthrough moment, when I realized I could tie the dress in a knot and wear it as a shirt instead! My wardrobe totally opened up on this day! (Added a hat, trusty jeans and a braid to handle the rainy day.)

Day 11: Threw a long sleeve shirt and beads over - and stood in front of the space shuttle as it parked a mile away from my home! (HOW COOL, right??? <-- the space shuttle, not the outfit)

Day 12: My "day off" to enjoy the AHA Heart Walk and a Cal Poly football game.

Day 13: My FAVORITE look so far! 

  

Day 14: Simple beads, jean jacket and flip-flops to meet with a favorite fellow heart mama.

Day 15: Can we all agree that I just can't pull off any fashion trend that starts with the term "Bohemian"?!?

Day 16: I'd like to think I redeemed the Bohemian look with this outfit.

Day 17: HOT HOT HOT (not the outfit - the weather!) - had to dress down to compensate.

Day 18: Yellow cami under + dress tied as a shirt + awesome belt compliments of my mom + favorite jeans + hat and braid = perfect outfit to accompany a certain cute little girl on her kindergarten field trip to the Pumpkin patch!

So, that's where I'm at. I have 12 more days to go and, while I'm kinda scraping the bottom of my creativity barrel, I think I can do this! I'm excited to see what else I can come up with - and, honestly, feel completely liberated now when it comes to my wardrobe. For the past 18 days, I've taken the time to plan my outfits out and make sure I look nice. I've sparked some serious creativity with my wardrobe. And I've gotten more compliments than I have in awhile, to be honest. It's been a great way to kickstart myself to looking just a little nicer. Sometimes, mama's just gotta take some time for mama. :-)

This one's for Addison...

I'll be honest. I didn't feel like blogging tonight. It just seemed so wrong, so trivial to be blogging about a fun weekend out of town, when Addison is...gone...

This is Addison. Sweet, beautiful, incredibly vibrant and full of LIFE Addison. A constant source of hope for my Bodie and so many like him. She, too, was born with HLHS. She, too, had a very rough start. But she, too, was LIVING her life, every last stinking second of it. One of my friends has a quote in her email signature about not just living the length of your life, but living the width of it. 3-year old Addison lived the width of it. I will never see that quote without thinking of her incredible smile and zest for life. 

Addison had her Fontan this past June and her body just didn't quite like it. She ended up decompensating badly in August, going on ECMO and urgently placed on the transplant list. Miracle of miracles, she received a heart in record time, sailed through recovery and was even discharged back to the Ronald McDonald house! Two weeks after her transplant, she was re-hospitalized with a high fever, which turned out to be caused by 2 different infections that her little body, in its immuno-compromised state necessary post-transplant simply could not fight off. Last night, she went to be with Jesus.

I am devastated. No loss in the heart community is ever easy, but some just hit your gut more deeply than others. Addison was one of those. I "met" Addison when I was still pregnant with Bodie and followed her journey. I watched her grow, watched her thrive, watched her mom throw herself into the CHD community, spreading her love and her incredible faith every step of the way. Addison was my hope for Bodie and her mother Angela was my hope for me. An incredible woman of God, who boldly shared her faith and Addison's journey. And now, I watched this chapter in Addison's journey close, as she went back to her Heavenly father. We know she is rejoicing, dancing at the feet of Jesus, and we praise God that Addison will be reunited with her mother, father, sister and brother someday. But in the here and now, the pain is immeasurable. It isn't fair that the parents of a 3-year old have to plan her funeral. It's just NOT.

So I didn't want to blog about my weekend, about the wonderful memories my kids made with their grandparents. It seemed silly and trivial, like I wasn't honoring Addison by doing so, like I was pretending that life can somehow go on in the same way it went on last week. But then I realized that I needed to share these pictures, because that's what Addison's life was all about. It was about taking advantage of EVERY SINGLE MOMENT we're blessed with, about laughing and dancing and singing and loving life. So, Addison, this one, these moments, every last one of them, is dedicated to you. We love you sweetheart and cannot wait to see you again.

The space that can only be filled by Isaac

Today is Pregnancy and Infant Loss Awareness Day. How very fitting for me to spend it with one of my most favorite angel moms, Cindy.

I love Cindy. I love her family. God paved such a path to intertwine our boys and our families. We will forever be linked. We will never forget Isaac, and how hard Cindy fought for him. I could, and may be, walking her walk at any moment. I can only hope that if and when I do, I can walk it with as much grace as she does. She is an incredible woman of God. 

Before today, the last time I saw Cindy was 2 years ago. In honor of Cindy and Isaac, and all the moms with empty arms today, I want to repost my blog entry from that day. 

We love you Isaac. 

TUESDAY, OCTOBER 26, 2010

The space between us

As I mentioned in yesterday's post, Bodie, Dusk and I had a wonderful opportunity to meet up with one of my heart sisters, Cindy, this past weekend. What I didn't mention was how bittersweet that meeting was. So sweet, so very, very sweet, to see Cindy again, to feel that instant bond with her, the love that flows freely between our hearts. But so, bitter, so very, very, painfully bitter to feel the space between us. The space that should have been filled with 2 boys fighting to get off their mama's laps, 2 boys trying to open Puff's containers with their mouths and giving everyone around silly, goofy grins. The space that instead was only shared by my sweet boy and the memory of the one who left before him. The space that will never be filled.

Oh, the aching sadness to think of how things should have been. Bodie and Isaac are such brothers, not just brothers in Christ, but heart brothers as well. They were from the start, well, actually, from before the start. A few weeks before Bodie was born, my mom heard about a fundraiser being held in Santa Maria for a baby boy named Isaac, who would be having multiple heart surgeries down at Children's Hospital Los Angeles. Like my mom does, bless her heart, she held on to the story and wouldn't stop talking about how neat it would be if I met Isaac's mom and dad. To be honest, I had a lot of other things on my mind and couldn't really have cared less who I did or didn't meet once my baby was born. God had other ideas. He knew I would need Cindy.

After Bodie's Norwood surgery, he was moved into a 4 bed room and the baby diagonally across from him was named Isaac. I pointed out the sign to my mom, laughingly saying that must have been her Isaac. Of course my mom immediately ran over to the young mother sitting beside the baby's bed to see if it was the same Isaac she had heard about on the radio. Indeed it was. THANK GOD my mom is a crazy friendly person, because I honestly wouldn't have done that. Cindy came over to talk to me and a friendship was born. Day in and day out in that room, we would talk and swap stories.

Then, Bodie was moved to the 3 bed room next store, and sure enough, Isaac came over too. What fun! The boys used to give nurse Alex a run for his money - poor Alex was relatively new at the whole icu nursing thing and would always get the boys paired and I swear, Bodie would wait until Isaac was crying for a diaper change and would immediately pee or poop, too. Alex would just be exhausted from taking care of both boys all day!

Then, Bodie was moved to the step-down unit and low and behold, Isaac was moved just a few hours later - and they both came to the same room!!! Isaac and Bodie were across from each other for the remainder of Bodie's stays. It was so wonderful to have a partner in Cindy. Sometimes (ok, a lot of the time - it's the step down unit floor after all) the nurses would get so busy with the patients that they wouldn't have the time to call a parent if something happened and the parent was away from the bedside. So it was such a blessing for Cindy and I to have one another - I could text her if she happened to have headed over to the Ronald McDonald house to catch some sleep and let her know Isaac was having a rough night and she might want to come back. Or she could text me to let me know that all of the nurses were huddled around Bodie's bed because he was desatting and misbehaving again. It just made the being in the hospital thing so much easier.

A week or two after Bodie was discharged, Isaac got to go home, too! He had a slightly less tumultuous next few months, enjoying being at home with his amazing mother Cindy, dad Jeff and big brothers Michael, Evan and Caleb. Since Bodie was in the hospital so much of that time, I was able to see Cindy and Jeff when they would bring Isaac down for various appointments at CHLA. Cindy and I had such big dreams for playdates with the boys once they were finally out of the hospital at the same time.

That never happened. Bodie's and Isaac's stories were intertwined from before the beginning, and the end was no exception. The day Bodie was discharged from the hospital in July, as we were driving home from the hospital, I got a text from Cindy that Isaac had been called home to Jesus. His little body had fought a horrible virus and just couldn't fight any longer. Oh how very bittersweet. On the same day my little boy was finally going home, his heart brother Isaac was going HOME.

And there we sat Saturday afternoon, Dusk, Cindy, Bodie and I, with a space large enough between us to acommodate a football field of little boys. But it only needed to hold one. Sweet, sweet Isaac. We so wish it could have been different. We will miss you forever Isaac and you will never be forgotten. We cannot wait for the playdates in Heaven someday. Love you Isaac.

- Amy and Bodie

I love this kid

I love this age. I really, really do. 

I felt the exact same way when Sierra was this age and couldn't pronounce her 's's and would tell us she was going to "cool" and would pretend to talk on the phone and would hug everyone in sight, whether they wanted it or not.

I mean, I hate some parts of this age - like, say, the fact that this kid has single-handledly caused our property value to decline more in the past 2 weeks than the entire economic downfall has. Case in point - his valiant efforts to remove his Lightning McQueen nightlight from the wall resulted in this.

I know, I SHOULD be grateful he has the strength and energy to do this to a light socket, right? But man, WHY are boys so freaking destructive?!? We have so many books and toys that survived Sierra with only a few scratches that have been absolutely obliterated by Bodie!

But those moments, every last one of them are so far outweighed by his sweet moments...

When he sees a big trashcan or trash truck...anywhere...anytime. It's like seeing the spaceship landing on the moon for the first time. He squeals. He jumps. His whole body quivers. Ever heard the phrase "jumping out of his skin in excitement?" Pretty sure that phrase was coined with Bodie in mind. It is so flipping cute. I think we may just get him a bunch of trash cans for Christmas...

When he wakes up in the morning and gives me a huge hug and kiss, wraps his arms around my neck, squeezes tightly and says "Mama...I love you beary, beary, beary much..."

When he wants me and I'm not responding fast enough and I can hear him saying insistently "MOMMY BENNETT!!! MOMMY BENNETT!!!" (I cannot help but laugh at this one - what can I say but clearly the kid has learned to include someone's last name if you really really need their attention.)

When he wants to "read" his books and brings 2 books - one for him to read to himself and one for me to read next to him. And we sit on the couch together and read them silently.

When we have to dress him up for sports week at school and realize what a challenge it is when we're not a sports-minded family - and the poor kid ends up having to wear this - and thinks it's cool...

When I pick him up from MOPS, or TWISP, or even just when he's been with daddy for an hour while I went grocery shopping and he comes running into my arms, screaming "Mama! Mama! Mama!" as though I've been gone for months. The homecomings from this kid are priceless. 

When this kid shows us his love for music. This kid LOVES him some music. I'm so hoping he inherited his daddy's musical genius. Because he will sing to anything that's on the radio (which is pretty much always kids praise songs - as soon as I try to listen to anything else, he's insisting I put "my music on, mama!"). He clearly has inherited his daddy's discriminating ear, because he's always quick to ask Sierra (who, I'm pretty sure inherited my tone deafness, poor kid) and I to stop singing! But this kid will sing all day long. The other night while he was finishing up his dinner, I heard him singing 3 different praise songs. And a 4th while he sat on his potty after dinner. I love a musical kid!

When we have conversations. Man, this kid is SO smart and SO funny. Two recent conversations we had that I just don't ever want to forget.

Last week

(Out of complete exasperation that he had written on the wall yet again)

Me: Bodie, WHAT am I going to do with you???

Bodie: (not quite grasping the concept of a rhetorical question) Play cars, mama!

Yesterday when I picked him up from MOPS 

(after hearing that he had been crying on and off for most of the time, which he doesn't usually do these days)

Me: Bodie, did you cry today?

Bodie: YES.

Me: Why?

Bodie: Because...(sob) mommy LEFT me.

Me: But why would you cry, sweetheart? Mommy always comes back, right?

Bodie: NO. Mommy...stayed...(insert long dramatic sigh here) with her friends!!! 

(Man, how does this kid already know how to give me such good guilt trips?)

Like I said, I love this kid and I love this age. Not sure how I got so lucky to be this kid's mama. But I'll take it. 

Rethinking the day that changed everything...Three years later

On October 1, 2009, we first heard the words "your baby has a severe congenital heart defect." Like so many parents, the news was received at our structural ultrasound, when I was 17 weeks pregnant. The experience was traumatic, to say the least, not the least of which was because, save for our incredible cardiologist (who by the grace of God happened to be in the office that day, doing prenatal consultations), the response from the medical team was largely negative, with most surprised that we were not choosing to terminate. Although they were compassionate, the overall feeling that we were given was that our child was in grave danger and would likely not make it to term - and, if the baby did, would not have a good prognosis. It often felt as though we were fighting our medical team to stay positive. The frustrating thing to me is that I now know that there is a great deal of HOPE with these kids, and none of that hope was conveyed to me by the medical team (again, save for the cardiologist).

Every year, on October 1, I send our perinatalogist a letter, just wanting to show him that kids with HLHS can do well and thrive. You can find my 1-year letter here and my 2-year letter here. This year, on the 3-year anniversary, I am once again taking the opportunity to reflect and share Bodie's story with him. Here is my letter...

---------------------------------------

October 1, 2012

Dear Dr. Rotmensch,

This is Ella May Beckstead. She has HLHS, just like Bodie. She is one of “ours,” a family that has been touched by Sisters by Heart. Last weekend, Bodie and I watched her celebrate her first birthday, and rejoiced in the moment.

Three years ago today, the course of my life was changed in a moment, to forever after be split into the before and the after. Before you told me my unborn baby had a congenital heart defect so severe that only a small percentage of the most skilled surgeons in the country will even attempt the complex surgical repair needed. Before I knew my unborn child would fight for his life almost immediately. Before you gave me little to no hope for my unborn child’s life. Just, well, before.

On the first anniversary of Bodie’s diagnosis, I was sad. Sad that you didn’t have more faith in my son and his fight to live, more faith in my ability to fight for a medically fragile child. Sad that you would suggest termination.

On the second anniversary of Bodie’s diagnosis, the further I got into the heart community and the more successful HLHS cases I saw, that sadness had turned to anger. Anger, I suppose, that you should have “known better.” Anger that, as the head of a major prenatal diagnosis center, you should have known that palliated HLHS is not a death sentence, that there is a great deal of hope for these children, that the advances in this medical field are staggering.

But, today, on the third anniversary of his diagnosis, I get it. I understand that it wasn’t ever about my son, or about the moment the bottom dropped out of my world. It was about my family’s opportunity to be a part of something so much bigger than that. It was about Ella, and the more than 300 other families that have been touched by Sisters by Heart in the last 2 years. Because, Dr. Rotmensch, Sisters by Heart was borne largely out of my prenatal diagnosis experience, out of my desire that no family ever be given an HLHS diagnosis and leave without HOPE for their child, for their family. I was incredibly lucky that Dr. Kim happened to be in the office on the day I received my diagnosis. Not every parent is as lucky to have a Dr. Kim waiting in the wings, and had I left after only seeing you, I would have left under the impression that my child had no hope for a normal life. No family should ever experience that, all of the fear attendant to an HLHS diagnosis, but none of the hope, none of the knowledge that many of these kids go on to live very typical, happy, lives.  

HLHS sucks. It is a horrible defect, and I would trade my heart for my son’s in a second. But there are so many kids, like Bodie and like Ella, who aren’t just surviving, but are thriving. The Bodies and the Ellas of this world aren’t just defying statistics, they’re redefining them.

Bodie is doing incredible, by the way. We still have his Fontan surgery ahead of us, and it scares the daylights out of me, to be honest. But today, he’s doing fantastic. He’s just like any other 2½ year-old. He knows all the words to his favorite praise songs (and is almost always singing them!).  He’s obsessed with cars, trucks and trains. He knows his ABC’s, he can count to 10 (and include almost all the numbers to get there! J), he’s potty trained and he’s smarter than a whip. He’s inquisitive, he’s sweet, he’s stubborn and he’s funny. His ½ a heart does NOT make the rules for him. HE makes the rules. This past year, we did charity events, we spent 10 days in Tahoe, we flew to South Carolina (and got to go into the cockpit on the way back) – and just generally LIVED our lives!!!

 

Bodie and Ella are far from alone. The other kids I include in this letter every year? Although some have had some tough post-Fontan complications, most are still kicking HLHS butt.

 

Addison, almost 4 (post-transplant)

 

Townsend, almost 4 (post-Fontan)

 

Grace, 3 (post-Glenn)

 

Aly-Jean, 3 (post-Fontan)

 

Jake, 2½ (post-Glenn)

 

Olivia, 2½ (post-Fontan)

 

Zoe, 2 (post-Glenn)

Dr. Rotmensch, the latest statistics are showing that 60-75% of HLHSers are making it to 5 years old without needing a transplant (and the numbers are as high as 80% at higher volume centers). The advances currently being made in stem cell and bone marrow treatment for congenital heart defects are amazing. This field has moved at the speed of light in the past decade, and, by all accounts, it appears we’re just getting started. So, yes, HLHS sucks. It’s a terrible diagnosis and, as long as it still takes one child from their mother’s arms, research is not done.  Yes, parents absolutely need to know how devastating this diagnosis is, how it will change their lives forever and rob them of any sense of security they felt over any of their children’s futures. But, please, also take a few moments to remember the Bodies, the Ellas, the Olivias, the Towneses, the Addies, the Aly-Jeans, the Graces, the Jacobs and the Zoes of the CHD world. And please, remember Sisters by Heart and the HOPE we bring.

You may feel that recommending the termination of an HLHS child is the right thing to do, but I ask that you also think about the many blessings you are terminating, along with their unborn child – a chance to learn what life is all about, the opportunity to live in the present moment on a daily basis, the insights that both heartache and pure love can bring, and the inspiration our HLHS children bring to people all over the world.

Thank you,

Dusk, Amy, Sierra & Bodie Bennett