Tuesday, December 18, 2012

Riding a Horse

I wrote this a few days ago and have just sat on it until today.  T is sick with a tummy bug and has been more cuddly and cute than can be contained and I've thought again about how lucky I am to have him! Time to share some T stories ;)

Oh that Talmage. Someone once told me that Talmage was such a big name for such a little man. I agree that it's a powerful name--and so fitting. So big. So brave. His body is young but his spirit is much older and wiser. He remembers everything, he understands deeply, he feels pain and heartache and he is so perceptive. I look at this picture and I see a 20-year-old galloping through a forest on a horse instead of a little boy riding circles on a pony. Oh that little Talmage.

I started getting really sick and started having lots of doctor's appointments right after my parent's dog died. We had decided to wait to tell T the news of a new baby because the diagnosis was so new and scary for us (let alone a child) but after a few appointments T started to get concerned. He knew that Riley had gotten sick, gone to the doctors, and then died...and he thought the same thing was going to happen to me. He cried so hard as we talked about heaven, and we told him that Mommy was sick in a good way, because she had a new baby in her tummy. At that, he perked up. "My sister is coming!" he said.

You see, technically T can be thanked for this new baby. After everything with Everett, James was pretty sure we were done. But this summer Talmage-boy started asking us when his sister was coming. And boy was he relentless. "My sister wants to come," he'd say. "She's ready!" Week after week we'd hear about T's sister. At first we just thought it was cute, but then Jim realized that Talmage was talking straight to him. A new hope was born.

Explaining things to T is tricky because he asks a million questions and understands way more than I sometimes wish he did. Telling him about the miscarriage was hard. He cried and he gave me the most tender hug. Then he sat on the kichen chair, the wheels visibly turning in his brain, and told me, "OK Mom. I'll have questions later during question time at 7 O (my guess is he meant o'clock). I'm not asking questions now. I'll ask them later." Poor baby was trying to process everything. He also had been praying for Nicqelle and begging to visit her for months. He knows she has gone to heaven and that was hard as well. Too much for a 3-year-old.

He's brought it up a few times since then. He asks me questions like, "Do all babies have mended little hearts like our babies do?" and today, "How can I visit baby Nicqelle in heaven?" He says, "Do all babies live at the hospital?" and knows more about heart disease, intubation and feeding tubes than most adults. Usually my heart ends up in my throat and I try my best to explain things. He also told my mom that a friend of mine was pregnant and "she went to the heart doctor and the doctor said that her baby was growing small." He thinks that babies are supposed to grow bigger but ours grew smaller and then left.

I wish I could give him a healthy baby sister that didn't have a mended little heart and didn't live in the hospital. And maybe someday I can. But for now we are waiting for results from genetic testing and just enjoying the family we have. 

Anyway, here are some funny things T has said lately. We certainly enjoy him!

Me: Don't ask Daddy why, just do what he tells you to do.
T: I didn't ask why, I just said the letter Y.

T: This is my jelly-poo sandwich.
Me: T, that's gross. Don't talk about poo.
T: No Mom, just Winnie the Pooh silly!

T: Mom, is Utah the North Pole?
Me: Why do you think Utah is the North Pole?
T: Because it snows there.

T: Is there a baby in your tummy?
Me: No, not anymore honey.
T: Yes, I see one. Look at that big tummy you have!

T: When I grow up I'm going to be a baseball player after my mission. And then my job's going to be going to school. Waw school, wike Daddy. And then I'm going to graduate and move to LA.

Monday, December 17, 2012

Seeing Santa

Thank you T and Evie, for always making our Santa pictures so full of, well, personality!
T wants dinosaur jammies for Christmas.
Evie wants Santa not to come for Christmas!

Thursday, December 13, 2012

A Killers Christmas Present

James and I usually don't exchange Christmas presents, or any presents for that matter. We've been living off student loans for a long time and unfortunately Stanford Law School doesn't factor "awesome gifts" into our yearly allowance. Alas, with everything that we were going through this year I decided to totally splurge and buy James a Christmas present I knew he would adore! His favorite band is the Killers (2nd favorite is Imagine Dragons) and I found out that both of them were playing in Oakland at a concert called "Not So Silent Night." Done and done.

The timing was rather unfortunate. I was so excited to surprise him with a new Killers shirt and the tickets and was waiting until as close to the date as possible...but darn it that week was just not all that jolly. He came home from school on that lame miscarriage Monday and I handed him an envelope with everything stuffed inside (so not how I had imagined it happening!). He was still really surprised and so ridiculously excited. He wore that Killers shirt nearly everyday leading up to the concert ;)

There were times during that week that I wondered if going to that concert was the best idea for my body (jury's still out on that one) but I definitely think it was the best idea for my brain, and Jim's brain too! We didn't have to think about real life issues or answer tough questions about our future, and we didn't have to process the events of the week or wonder what knowledge we were supposed to gain. Instead, we acted way too young, danced way too hard, sang at the top of our lungs and got home way too late (I don't know the last time I was driving my car at 1 am!) It was a blast.

Imagine Dragons was the first up. They were fabulous. There were five opening bands and while most of them were amazing (GroupLove and Passion Pit), a couple were just weird. Maybe we're not cool enough or maybe we're too old or maybe we weren't high or maybe we're not big enough rock fans...but through one whole band's time we looked like this:

and this: 

and then this:

(see the guy yawning in the background. Hilarious!)

And then they set up the thunderbolt and Jim and I started to get excited. REALLY excited. We took a few pictures of us during the Killers nearly 2 hour set but they were all blurry because we were rockin out! And we tried to get a good one of Ronnie (the drummer) for T because he's his favorite, but that was blurry too. Too crazy!

But we did get these:

We sat in the 2nd row of the seats (because when I bought the tickets I thought I'd still be pregnant and didn't think I could stand in general admission for 6 hours). It was perfect because we sat through the 4 hours of opening bands and then danced through the Killers. I'm so, so glad that James loved it. He said it was the absolute best Christmas gift of all time!

PS--A HUGE thank you to my Mom who watched the boys while we played! And pretty much for the rest of that week as well ;)

Tuesday, December 11, 2012

A Lotta Miracle

“The probability of a certain set of circumstances coming together in a meaningful (or tragic) way is so low that it simply cannot be considered mere coincidence. ” 
V.C. King

"What a coincidence that you were here on the very night they came looking for a support group!" the kind volunteer at the front desk of the Ronald McDonald House said to me as I left our monthly meeting.
I smiled and shook my head, "No, that was not a coincidence. That was a miracle!"
Our meeting was changed from it's normally-scheduled day for a special speaker, so we didn't know any of the staff that evening. Lotta and Andre were delivering a very special heart baby the next day at Stanford and decided to see if there was any support to be offered. They randomly ended up at the Ronald McDonald House and when they asked if there was a support group for families with heart children, the person at the front desk said no. A different volunteer overheard the conversation and said, "I think there's a support group for heart families meeting right now actually, let me check my book." They found the name Heather Wigginton and marched those two dear souls right back to meet me.
All these circumstances a coincidence? Please. 
And I am more sure of that one experience's heavenly origins now as I have ever been.
From the moment Niqelle was born I was smitten. Her features were perfectly placed on her face and her hair curled in just the right spot. Her skin was soft and flawless and her sweet heart was beautifully beating through her chest, an extremely rare condition I learned was called ectopia cordis. As I sat with her for the first time, just a day after she graced the world with her presence, I was in awe of her spirit--strong and vibrant and yet so full of peace.
And her mother, that incredible Lotta I had only just met; there was love and hope and joy in her eyes that I knew Nicqelle had welcomed. To see Lotta caress her daughter's body in a tiny NICU bed, drill the nurses for answers about administered medication and hold that infant skin-to-skin with 20 pillows and blankets protecting her wires was refreshingly real and normal to me. We had babies the same way, me and Lotta. We were heart moms and we understood each other. I loved them so much, both of them. I loved them more than I thought was possible really.
Before I knew it hospital visits and text message updates were just part of my routine. I sat with Lotta and Andre while Nicqelle was in surgery, and met with her surgeon in the family conference. I made meals and brought snacks (almost always unhealthy compared to the veggie shakes they drank) and they agreed that junk food is sometimes healing! I visited the hospital so often that those nurses who didn't know me from my stay with Evie, recognized me from my visits to Nicqelle. Talmage prayed for Nicqelle daily and knew she had a "mended little heart like Evie." 
Nicqelle's surgery was not as smooth as they had hoped, and every day was full of highs and lows. Her incredible parents lived at the hospital, only leaving when Lotta needed to pump the milk she so-hoped her daughter would drink. Day in and day out they stayed strong and positive. And I was inspired.

"Why does it look like the heart is on the outside of the body?" I asked the PA as she performed my first ultrasound at 8 weeks pregnant.

"I'm not going to lie to you," she said, obviously startled by the finding and by my ability to see it, "this does not look normal. I have never seen anything like it."

"I have." I said, shaking my head. "It's called ectopia cordis. I've been visiting a baby in the hospital for the past month with this exact same condition."


At first I was in denial. Ectopia cordis affects 5 in 1 million babies and I just couldn't believe that it was hitting me twice--first with Nicqelle and then with the baby I was carrying. I re-read the radiologist report at least 100 times and cried. I cried because I loved Nicqelle and hurt that she hurt. I cried because I loved Andre and Lotta and felt, even more acutely, what they felt. And I cried because I had been walking the road of ectopia cordis with this beautiful family for weeks--and I knew it was an emotionally disastrous journey. Yes, I cried for myself and for the baby I was carrying.

I couldn't bring myself to visit the hospital for the next few days. It was too fresh, and it wasn't time to share the news. And then my boys got sick and I was banned from entering the hospital for fear of spreading germs to little ones. I watched from afar the ins and outs of their hospital stay for nearly a week. And for the first time I was not just walking this path with them, I was seeing my future life unfold.

It was a Friday afternoon when I had the strongest feeling I should tell Lotta about my new baby. And I did. She, of course, told me I could have told her earlier, but the timing just felt perfect. She told me she'd be there for me every minute and I knew she would. I was scared, I was sad, but I was definitely not alone.
I missed a call from Lotta right after my Monday doctor's appointment. I was not ready to tell anyone about my miscarriage, and thought I would call her back later. But when I listened to the voicemail message she had left my heart nearly stopped.
Nicqelle was not doing well, and they were pretty sure she would be going to heaven in the next few days. I headed right over to the hospital and cried with Lotta. I told her everything and we cried together--for me and for her. Although completely different, we were both experiencing a loss and they were both ectopia cordis-related. On the same day.  
My D and C was on Tuesday, the same day that sweet baby Nicqelle was baptized into their church. While I was still loopy, James delivered a beautiful white dress, borrowed from a friend, for the ceremony. I saw the pictures later and thought she looked just like an angel.
And on Wednesday I was with them when Nicqelle peacefully took her last breath in the arms of her Mommy and gained her angel wings.
In just three days, my life as I have known it for the last two months has come to a screeching halt. I feel a little lost and so sad.
I think I'll spend my whole lifetime trying to put the Lotta/me/ectopia cordis puzzle together. What purpose did we have in each other's lives? Why did I learn I was carrying a baby with ectopia cordis, only to miscarry before birth? I could've easily miscarried without ever knowing the reason. What were Lotta and I supposed to learn from each other and have I done my part?
One thing is for sure:
“The probability of a certain set of circumstances coming together in a meaningful (or tragic) way is so low that it simply cannot be considered mere coincidence. ”
V.C. King
No, none of this was a coincidence. It was a miracle.

Sunday, December 9, 2012

A Meeting Meant for ME!!!

Today was a special Sunday at church. The woman all attended a Christmas conference while the men-folk took over all church and children responsibilities. We were served a delicious brunch of quiche and girly salads, and then we were given an extra helping of inspiration from 5 lovely and talented speakers. My words about the event could never adequately portray the amazingness of it or the spirit that spoke straight to my heart. The whole thing was beautiful and maybe the best Christmas gift I've ever received.

When it was finished my mom leaned over and said, "Wow, Heavenly Father really loves you because that meeting was meant just for you." And I knew she was right. I knew it so much, in fact, that I kind of wanted to dig a deep, fat hole and hide from everyone (because I was sure that everyone in the room also knew that the whole meeting was just for me). Maybe I'm being kind of prideful, but I think I'm being honest.

I left with a lot of still-very-unanswered questions, but I also left feeling like Heavenly Father was ok with that. And maybe I feel a little more ok with that. He doesn't expect me to know the why's right now, or maybe ever, and I don't think He wants that to be my focus. He understands that I feel hurt and that I feel guilt and that I feel responsible for everything and I think He wants me to just keep moving along, relying on His Son all the while. And I'm going to try to rely on Him more.

So maybe the woman's meeting at church today was meant for many different woman in the congregation, but I'm going to stick to my guns and say it was meant just for me ;) And you have no idea how grateful I feel.

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, and confusion into clarity...It turns problems into gifts, failures into successes, the unexpected into perfect timing, and mistakes into important events. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow."
--Melodie Beattie
 Speaking of being grateful? These two top my gratitude list! I am a mother to the most creative, hilarious, thoughtful, caring and spicy little boys I know. They are the best and I am so blessed.

Thursday, December 6, 2012

Where have I been?

Pregnant. Pregnant and very, very, very sick.

But my story doesn't stop there. No, it never is that easy. My stories always have some crazy curveballs that knock me right off my feet. Especially in the baby department.

From the second I saw those two pretty lines I was nervous. "What would it be this time around?" I wondered on an almost daily basis. T had brain trauma. Evie a heart defect. What health condition would this child bring to the table?

I wanted to believe those positive people that told me things like "third times a charm" and "next time it'll be so easy," but I just couldn't see myself blissfully taking a healthy child home from the hospital.

So when my ultrasound at 8 weeks was irregular, and when my Level 2 ultrasound a few days later confirmed the diagnosis, I wasn't all that shocked. This sweet child was diagnosed with ectopia cordis, an extremely rare condition where the heart is growing outside of the body. The prognosis is grim--most babies don't make it to full-term and if they are delivered, there is little hope of survival. We painfully started to plan for another trip into the heart world.

The last 5 weeks have been long and excruciating. My physical ills were matched in intensity only by the emotional marathon running in my mind and heart. I threw up all day and had nightmares all night. I have lived horizontally on my couch, sharing saltines with two innocent little boys and feeling guilty all the while--guilty for laying on the couch, guilty for producing sick babies, guilty for not doing the dishes, guilty for having yet another pity party. The list could go on forever. I would fear everyday that I had lost the baby, and twice those fears led me to the drs. office where an ultrasound was performed and a strong heartbeat was witnessed. When I was inching towards week 12 I finally allowed myself to take a breath and I was finally coming to grips with our new reality. I could do this, I would do this, I had no choice but to do this.

And then last week I had a day where I only threw up once and had the energy to take a shower. "You're almost 12 weeks," I reminded myself as I started to panic. "Normal people get better after the first trimester...there's light at the end of the tunnel." But that darn feeling wouldn't leave me.

At my regular OB appointment on Monday I told the doctor that I was more afraid I had miscarried than I was of having another heart baby. And as she put the doppler on my stomach and we heard the ugliest silence my ears have ever witnessed she said, "You sure know your body, don't you." The Level 2 confirmed it and I left the office in tears. 13 weeks pregnant and I had miscarried.

You would think that knowing you are going to have a terminally ill baby would make miscarriage easier, but I'm afraid that's not the case. Instead, I feel like my heart and brain are playing ping-pong with my emotions, and during each play I feel hurt, sad, relieved, guilty, hopeless, robbed and mad. And not just about the miscarriage, but about my seemingly inability to have a normal, beautiful, joyous, happy pregnancy and delivery. I'm still trying to work it all out, and I assume I will be for a while.

I sobbed my way through a D and C. Bless the hearts of the doctors and nurses caring for me! The second I had medicine in my body the floodgates opened and my true emotion betrayed my "I'm fine, I can't change it, it'll be ok" attitude. I would make a horribly soppy drunk! I remember telling the nurses, "I'm just so sad. I worked so hard for 13 whole weeks to keep that baby healthy. And now it's gone." I hurt even typing those words. I hurt for the girl that said them. She tries to act strong, and darn it she is strong, but in that Operating Room with a little help from an IV she was truly mourning.

And now, life needs to get back to normal. But normal doesn't ever quite feel normal after life changes. So I'm inviting writing back into my life, which is a normal I've missed these past 5 weeks. That's a start. And hopefully when I release some of these emotions through my fingertips I will feel a little more like me again.