Monday, December 31, 2012

Two Sleds: Firsts in the Snow

Winter was my favorite season as a kid. It's not really my favorite season anymore (driving and bundling up kids and dealing with car-seats, need I say more?), but there is something so magical about the first big snow of the season - and something amazing about watching our kids experiencing it.
Elijah wasn't up for posing for a picture
We got over a foot of snow on the 9th of December and we were so excited to take the boys out into our backyard winter wonderland. 
Elijah remembered the fun times he's had in previous winters and was excited go sledding down our hill.
For Oliver, this was his first experience with snow and cold. He had a serious look on his face the entire time we were outside; when I would ask him about the snow he would give me a big smile.  I think he apprehensively approved.
They were having fun, really!
A happy first for Eli this year, too. He got to the bottom of the hill sledding with dad and signed "more" for more sledding. We're so proud that he is communicating with us more and that he's using his skills in various locales.
Oh, that face!
When we were done playing outside, our cheeks and noses were quite red and cold.
Two sleds
Our hearts were warm and full; two boys playing in the snow this year, both experiencing firsts of their own.

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Want to read about previous winters? 

Friday, November 30, 2012

Beautiful Chaos

When I think of our life with our two boys, two words often repeat in my head: beautiful chaos.
Handsome firstborn
There are the moments where I still cry over what happened to our sweet Elijah; his difficulties evermore present now that I watch what typical development looks like on a daily basis. It's a constant guessing game as to what Elijah is trying to tell us and I grieve for him again and again (especially when he cries inexplicably). Is he hurt? Does he want something? Or even: Did he break a bone that I don't know about? How would I handle all that he does? How could I survive without being able to share my thoughts and feelings (as I am doing right now on this blog)? The laundry piles up on the couch, the dishes lay in the sink, the little guy gets new teeth and army crawls across the floor. Chaos.
Cute second-born
And then there's the times when Elijah throws his body on my shoulder for an armless hug and we embrace for a long time. Or the four of us roll around on the floor as a family and laugh and play. Or we sing "Itsy Bitsy Spider" after Elijah asks with the sign I taught him (even though I've had enough of the song for five lifetimes). Or I place our wind-up train on the floor and Elijah runs and laughs his head off as Oliver watches his brother and laughs too (all while I try to teach Elijah the sign for "train"). Or we sit at the dinner table and Elijah doesn't cry and Oliver is just learning to eat and we're therefore all eating together. Beautiful.

This is our life. It's a sometimes difficult one, fraught with grief and constant motion. Chaos.

It's a charmed one, filled with a gal and her three guys. Oh, sweet blessings. Always a boy to snuggle, as busy as they are. Beautiful.
Beautiful Chaos, indeed.

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I know it's been awhile again and I thought I should let those who still read this blog know that we're still alive.

Saturday, October 27, 2012

I Would Change It

I've heard the question posed at times: Would you change/take away your child's diagnosis if you could?

People fit into two camps on this one, of course. Yes (take it away!) or no (I wouldn't want to change my child and the path we're on).

Me? I'm in the resounding yes category. That doesn't mean I don't love and accept my child for exactly who he is, but if I could change things I definitely would. And it doesn't mean I don't understand why someone might answer the question with a no; I'm well aware that we would be different people without cerebral palsy in our lives. That's both a good thing (we have more compassion) and a bad thing (we struggle daily).

A couple of mornings ago, Elijah woke up early (before six). Andy let Eli out of his room and we let the little guy run around upstairs for a bit as we tried to convince ourselves that it was indeed morning. About ten minutes had passed when Andy got out of bed and that's when Andy noticed something on Elijah's face. Oh, Eli must have gotten into some of Lisa's make-up, Andy thought and he wiped off Elijah's face.
Except it wasn't make-up, it was a raw wound. Somehow Elijah had injured himself in that span of time and we had no idea how or where.

But how? How? How? How? How?

The question has been repeating over and over in my head for the past two days. I examined our room, trying to enact any possible scenario that could've caused his injury. We hadn't heard him fall, he hadn't made a peep or cried.  The last two days I struggled with guilt (how is it that our child hurt himself and we didn't know it?!) and grief (our child is unable to tell us what happened).

Every time I looked at Eli I was reminded...he's hurt and he can't tell us how by talking or pointing. His wound looked almost like a burn. What if we're missing something? I kept wondering. What if it happens again?

And it did happen again. This morning Andy heard Elijah wake up and he went to let Elijah out of his room.

"Lisa," Andy said, waking me. "Come here. Look what happened."

Standing next to his dad in the hallway was Elijah, his face covered in blood, his eyes still squinting from sleeping.

"What in the world?" I said and glanced towards Elijah's room. There was blood all over the carpet next to his door. We had thought Elijah's wound looked like a carpet burn, but I couldn't have imagined that he had been harming himself like this.
The first day, before he re-opened it this morning
We think he got up in the middle of the night, made his way to the door to leave, but being tired laid down on floor next to the door and put himself back to sleep by rocking and rubbing his face on the carpet. He hadn't hurt himself in those ten minutes the other morning, but rather in the night. We couldn't have known, couldn't have protected him from this unknown danger.

I'm glad we have an answer finally as to what caused Elijah's injury. It's not what I had expected, although, I can't say either of us are really surprised. Being able to appreciate pain is such a blessing; Eli had no idea that he was even hurting himself.

So, would I change Elijah's diagnosis if I could? You betcha. I would sign up for healing today. Today, Lord?

Thursday, September 27, 2012

In the Rocking Chair: A Tale of Two Brothers

Playing together
Sitting in the rocking swivel recliner where I spend so much of my time nursing Oliver, Elijah often comes over and looks at us.

Sometimes he walks away, having been told many times already that "mommy is feeding Oliver right now, I'll be able to help you soon."

Sometimes Elijah wants to watch TV, the same first minute of Yo Gabba Gabba over and over and over again.

Sometimes he wants me play basketball with him; surely I can multitask.

Sometimes I will be rocking Oliver and shushing him to sleep. Elijah will come over and smile at us, his body blocking my ability to rock. A few times he's even crawled into the chair with us and I rock and hold both boys while I think about how ridiculously blessed we are, all the while trying to protect Oliver from his brother's long legs.

And for the past month or so, little Oliver will watch his big brother with great interest. Weeks ago, sitting in my lap, with my hand under his chin, little Oliver smiled at his brother for one of the very first times.

My eyes filled with tears.

I cried because it was so very sweet.

I cried for Elijah because he was unable to notice his little brother's smile.

And I cried for Oliver because his big brother was unable to respond.

And this is the truth I knew long before Oliver was ever in my belly: parenting our two children is going to be bittersweet. Thankfully, the sweetness overrides the bitter so much so that we usually can't even taste the bitter.

Since that emotional moment in the rocking chair a month ago, Oliver and Elijah have shared many smiles. I'll place Oliver right in front of his brother's face and they smile at each other. It's pretty spectacular and the cutest thing ever. They love each other.

......

...And then Elijah employs his "no thank you" gesture, which is a push away, and tells us that he's done with his brother being in his face and pushes his brother away.

Oh, brother. This is going to be an interesting ride indeed.

Tuesday, September 11, 2012

Remembering (Grief and Joy)

September 11, 2001. Andy and I had been dating for less than a year. Both of us were attending the same college and that semester I didn't have any classes on Tuesday mornings. The night before the attacks, Andy and I had stayed up late having an in-depth conversation about bible prophecy. When planes were used as weapons eleven years ago, I was sleeping.

"Do you remember what we were talking about last night?," Andy asked after waking me with his call. He was at work. "A plane just hit the pentagon. Go turn on the TV."

Still waking up from my slumber, I floated downstairs and turned on the television. I'm sure we stayed on the phone for awhile, but I don't remember. I sat in shock as I watched the Twin Towers collapse before my eyes. They played the footage over and over and I watched it over and over, glued and unable to leave. What does it mean? I wondered. I called family members just so that I could hear their voices.
---
It's hard to believe that it's been eleven years since that day. I think about how much has changed since then. I'm married; we have two sons. Our country is different. The same, but scarred.

In some ways, I'm like that. Scarred, but still me.

September 11, 2011. One year ago today, Andy, Elijah and I went swimming at a local lake. It was unseasonably warm. I kept thinking about how it was the tenth anniversary of 9/11 and how we were still living our lives. Maybe it seems cheesy, but I thought about how we were swimming in honor of those who couldn't; we were living our lives to the fullest.
That evening, I took a pregnancy test and we found out we were expecting a little baby, our Oliver Luke. We were so excited and for awhile it was our big, wonderful secret. Immeasurable joy.
September 11, 2012. Today was Elijah's first day back at school. This is his third year of preschool and he was ready to go back. Our boy is growing up.
And this is life: full of grief and love and joy. We remember and we keep on moving, putting one foot in front of the other, always looking up for direction and comfort and thankfulness.

Tuesday, September 4, 2012

This Day

Five years ago today we took Elijah home from the NICU. It was one of the best days ever.
Yes, I share this photo every year
As I sat on our chocolate brown couch clutching our three week old baby, I thought (hoped) our journey had ended. I didn't quite realize that our journey had just begun. Our world would soon be immersed in therapies and we would begin to collect diagnoses, one of which is cerebral palsy (CP).

Today, the anniversary of Elijah's NICU homecoming, is World Cerebral Palsy Day. Seems fitting, doesn't it?

I thought I'd share two things for you to peruse in honor of this day:

This post (by Ellen of Love that Max) in which she describes what CP isn't and also what it is.

This excellent video by an online support group friend, Rachel (her adorable son Cohen reminds me so much of Elijah!):


Five years ago we got our son. We also got CP. But CP certainly didn't get him.
Stumbo Family Story

Thursday, August 30, 2012

Reluctant Celebrity

Incognito family at the State Fair
Last Fall we went to Texas. At the airport, I saw a lady standing about ten feet from us in the security line. She caught my attention because she seemed a little out of place. Dressed in black from head to toe, she was also wearing her sunglasses inside. Who does that? I thought.

I glanced at her and went back to tending to Elijah, who was jumping up and down. He would have run through the airport if I let go of his hand. The little girl in line ahead of us, pulling her rolling backpack just like her mommy's, was staring at Elijah as I tried to manage our boy and my bag.

Just then my mom leaned over and said, "Hey, that's Diane Sawyer." I glanced back at the woman in black and realized that it was indeed the news anchor.

As I grabbed my shoes to place them back on my feet, the TSA agents were chatting with each other.

"Oh, she tries to be all inconspicuous, but we know who she is," one said.

"Diane Sawyer, right?" I said with a sly smile, even though they weren't talking to me.

"See!" one of the TSA agents responded. "She noticed her. Oh, some celebrities come through and want everyone to notice them, but she tries to be subtle. We still know who she is, though."

"I wouldn't want to be a celebrity," I told them as we gathered our things from the security checkpoint and we all pondered the lives of the famous.

Back home after our trip, Andy, Elijah and I went to the grocery store to replenish our refrigerator after being gone for two weeks.

As we perused some things and Elijah jumped up and down while holding my hand, I could sense an older gentleman standing nearby staring at our son. Just when I was about to say something (because he was kind of freaking me out) the man said, "I have a grandson with problems." His voice and face were full of melancholy. I honestly didn't know what to say. Obviously, Elijah must have reminded him of his grandson and brought up sad feelings, but I wasn't so fond of how he handled approaching us - by staring and standing super close (and generally creeping me out). I think I said, "Oh," smiled at him and we all went on our way. He didn't offer up any more conversation and neither did we.

Sometimes I think I know how it feels to be famous; it feels like there are eyes on us wherever we go. Often they are happy eyes, as I hold our son's hand and he bounces down the sidewalk like Tigger with a huge smile on his face. Most people smile back. That's when I don't mind that people notice us.

When we're met with blank stares or pity or just general disgust, I kind of hate standing out from the crowd (oh, I notice). I understand wanting to be inconspicuous, to just blend in with everyone else, to be able to go to a grocery store (or an airport) and to be able to melt into the background.

I think our little family gets, at least to a tiny degree, what it's like to be famous. Sometimes it'd be nice to throw on some black clothes and some sunglasses and go incognito. I get it, Diane Sawyer. Sometimes, you just don't want all of those eyes on you.

Wednesday, August 22, 2012

They Fit

His chubby little body fits so perfectly on mine, his head tucked under my chin, his arms splayed around me. Snuggling. His head pops up and falls back down again, furiously, as he tries to get comfortable on my shoulder. He rubs his face back and forth, back and forth on my shirt. His breathing is fast and then slow and he squeaks in his sleep. I rub my face on his fuzzy brown hair and wonder why my hair can't be that soft, my skin as perfect. We just fit, my Oliver and me.
Elijah tackles me in the living room. We're enjoying being able to rough house again now that I'm no longer pregnant and not recovering from surgery. His body is stiff and large and I pick him up and roll with him on the floor. I cover him in kisses and he giggles and tries to get away. And then, he throws his body on mine, his arms dangling at his sides, and I exaggeratedly fall to the ground. "You got me," I say and we roll and laugh as his legs extend long and straight. We just fit, my Elijah and me.
Our boys. Our worries for them, holding them, parenting them - it's all been so different.  And, yet, it's been so much the same. We love them both so, so much. They fit in our arms and our family so perfectly.

Tuesday, August 14, 2012

Five

Our firstborn is five years old today.
 Half a decade; it seems like a long time.
Time goes by so fast and our boy is growing up.
When I reflect on the past five years, I see how far Elijah has come. I see how far we've all come as a family.
Birthdays for Elijah will probably always be bittersweet for me. The day of his birth was also the day of his injury. It was the day that our son's life was forever altered. My memories of that day are painful to say the least.
Perhaps knowing what a birth is supposed to feel like now doesn't make it easier. So, so much was stolen from Elijah (and us).
But, Elijah's birthday is just one day in a span of days. And while there is definitely sadness about that day, it's also one of the best days ever. It's the day we got Elijah (I was going to say it was the day we met Elijah, but I didn't get to meet my son on his day of birth. I thought as the years past, I wouldn't think of these things as much, but the bitterness is still there. I am not yet able to just remember the good things (perhaps when Eli is ten)).
It's not about me, though. Today is about Elijah. It's about the fact that he's here with us, alive and thriving. It's about today, not about five years ago. He's pretty awesome and we know it. Truly, that is all that really matters.
Happy Birthday to our sweet five-year old! You have brought us so much joy, Elijah. You made us parents and have taken us on a wild ride. We are so, so blessed to call you our son - you with your love of music (especially the Beatles!), your climbing antics, your love of appliances, your affection for your little brother (you especially love it when he cries), your love of eating (even if it is hard for you), and your amazing smile. You, our little boy, are one incredible little dude. We never forget what a miracle you are and how God has enriched us and blessed us by giving us you. You amaze us every single day and we love you more than words can say.  

*Pictures are from Elijah's birthday party this past Sunday*

Friday, July 6, 2012

Lovely Day

We enjoyed a lovely low-key Independence Day. 
The first pic of just me and my boys
 I made the boys dress in red white and blue. Because I can, that's why.
Had to include this one for Oliver's expression (...melt)
We let Elijah hold his little brother. Or, more accurately, I held Oliver next to Elijah.
Elijah was very interested in his little brother.
 Oliver, on the other hand, just seemed worried about the whole deal.
We took the boys out for lunch and went shopping. And then Eli went swimming. It was a HOT day.
Elijah's favorite guy was by his side too.
Before bed, Eli and daddy lit some sparklers while I watched from inside while Oliver filled his belly.

Yes, it was a lovely Independence Day. What a blessing! I hope all you Elijah-fans had a lovely day as well. 

Wednesday, June 13, 2012

I Can Do This

As I stood at the sink, the smell of lime and sea salt dish detergent filled my nostrils. "I can do this thing," I thought. Elijah, standing beside me, was doing his best to help with the dishes. This basically meant he tried at every possible opportunity to get his hands in the sink and send water splashing to the ceiling in a fountain of gargantuan proportions.

Here we stood for awhile, a mother and son. I can do this.

Three pans left to wash and the sweet sound of a little one's cries filled the air. Oliver had awoken from his slumber in his pack n' play in the adjacent room. 

I let the water out of the sink lest Elijah washed the dishes without me, causing my cottage cheese ceiling to crumble. "Oh, Oliver is upset," I said to Elijah and I left my spot at the sink to comfort my youngest son while my eldest followed close behind. "Should we change his diaper?" I asked Elijah as I grabbed a diaper and wipes. Elijah stood at the edge of the pack n' play with a sly smirk on his face watching his little brother. I can do this, I thought again.

Oliver was now clean and happy so I crouched down to Elijah's level and held little Oliver next to his big brother's face. Elijah leaned over and gave his baby brother a big sloppy kiss. My heart swelled so that it no longer fit in my chest and I thought, I'm doing this.

It was noon and the three of us headed to the kitchen. I gave Elijah two choices for lunch. Holding each item in front of Elijah while juggling a baby, I asked, "Do you want chicken nuggets or a turkey sandwich?" Elijah looked at both boxes, smiled and slapped the chicken nuggets box. "Chicken nuggets?" I said, "Of course, chicken nuggets, what else would it be?"

While prepping Eli's lunch, Oliver started to fuss and tried to latch onto my face. I had two hungry boys on my hands. How in the world am I going to do this?

I helped Elijah get into his chair with my one free hand and made sure we had all of our necessary lunch items ready on the table. "You're the big brother, Elijah. Oliver is hungry too, so I need you to be patient and wait while I take care of your little brother," I said. Elijah, who is not known for his patience, sat in his chair and waited with a smile on his face, occasionally peering at the baby in my arms. I started nursing Oliver and then feeding Elijah with my free hand. "Nuggets, cherries, or coconut milk?" I asked, giving Elijah the choices that help him feel like he is in control of his own destiny, therefore reducing his temper tantrums. "Milk? Okay," I said and I tip the cup so that milk pours into his mouth, my pinky finger giving his chin support. This isn't easy, but I really am doing this.


Parenting two kids, one with special needs? I've got this. I think...

Edited to add: This was one of the first times I was left alone with the boys. I've been fortunate in that I've had a lot of help this first month, but now Andy is back at work.

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I'm linking to Just Write, where we're encouraged to...just write.

Tuesday, June 5, 2012

We Missed This

Little chunk already weighs over 11 lbs.
As we've been enjoying getting to know our second-born, one thought keeps running through my mind:

We missed this. 

Oliver is three weeks old today. 21 days. A blink in time and a lifetime, it seems.

When Elijah was this exact age, we were finally able to take him home from the hospital. These first weeks of Oliver's life have been filled with thoughts on what we were doing with Elijah at the very same age...

At three days old we hadn't held Elijah yet. We missed this snuggle time.
Elijah was still on a ventilator at seven days. We missed the sound of sweet baby breaths.
It took two weeks for Eli's voice to fill our ears. We missed these cries.
Elijah wasn't home with us yet. We missed this time together.

I didn't truly know what we had missed until now... we've gotten to experience what it's like to have a newborn at home within days, I now know what it's like to see our child at birth, to hold and nurse our baby as soon as possible, and to have a positive birth experience. These are things we missed with Elijah. And, yes, I grieve for him all over again.

More than grief, though, is an overriding joy. I have looked at our newborn mesmerized by his sweetness and cried tears of joy. We are so blessed. Blessed to have Oliver home with us. Blessed that Elijah is alive and well. What has often been the case since Elijah's difficult birth is this - we don't, we can't - take things for granted. I've appreciated these experiences with Oliver so much more than I would have had we not gone through Elijah's first weeks. That in of itself is a blessing. There is pain in the memories as I grieve our first-born's lost weeks, but more than anything there is a joy in the here and now.

Often times joy and grief are so intertwined that you can't see one without the other.

As our hearts heal, we appreciate that we are not missing this life we have now. It's a life filled with lots of kisses for two boys that we love intensely and deeply. Looking back at what we've lost just makes us more determined to not miss a second of this amazing life. 
Not missing a single moment

Friday, May 25, 2012

Adjusting...

Have you wondered how Elijah is adjusting to sharing his parents with a little brother?
For the most part, his reaction has been to ignore his brother entirely. I mean, what exactly can a baby do for him?
I was so pleased, though, that when we returned from the hospital Elijah immediately acknowledged his brother (shown in these photos). Elijah was in the middle of his snack when I brought Oliver over to see his big brother. Elijah put his forehead on Oliver, which is a sign of affection on Elijah's part.

I can tell Elijah loves his little brother in his own way. And while he hasn't shown much interest in his little brother since that moment, he will sometimes come over to observe his little brother's screaming diaper changes with great interest.

I'm looking forward to watching their relationship evolve in the years to come.

Monday, May 21, 2012

The Big 3-0

Happy 30th Birthday to the daddy here in Elijahland.
He got a really awesome gift this year.
He is an amazing dad to our two boys.
We are so blessed.

Wednesday, May 16, 2012

A Family of Four

The night before
Yesterday, May 15th, our family of three became a family of four.

Oliver Luke was born at 7:58 am, weighing in at 9 pounds and 2 ounces. He was 21.5 inches long.
Moments after birth; he's a big guy!
The delivery was beautiful and peaceful.
Meeting our second born
Elijah met his brother yesterday (he's in the capable care of his Uncle Andy and Aunt Karen in our absence). Elijah looked at Oliver a few times, but didn't seem to know what to think about his new brother. I'm interested to see how he'll react in the weeks to come as we all fall into new routines at home.
First family photo
My recovery is coming along great so far and I can say that this birth experience was about a million times better than the last time. I feel so at peace and happy. This is what a birth is supposed to feel like.
Oliver Luke; We're madly in love
Thank you all for your prayers and well-wishes. We're on cloud nine and feel so blessed to be a family of four. We have two incredible little boys that we get to call our own.
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