Friday, May 21, 2010

Foto Friday: 29 weeks...

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...and I can no longer see my toes! :)

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Tuesday, May 18, 2010

Update on Brooklyn

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We had another ultrasound yesterday. As if getting another peak at our peanut wasn't enough, we also got lots of new information.

First, the good news! Miss Brooklyn is kicking around in there!!! Yes, her legs are moving! This is the first time we have been able to see that. Up until now, they were not detecting any leg movement. We still don’t know if this indicates specific movement from the knee down, but it is encouraging. God is so good!

Also, she is no longer breech and has moved herself into "position," which is making a normal delivery (not a C-section) a very real possibility. We are waiting to see if our neurologist agrees with our OB that this is a safe option for Brooklyn’s condition, but our OB seems very confident that this will be more than fine based on the defect’s lower location and its size. Yesterday’s ultrasound showed that defect is measuring “small,” which is another yahoo!

Either way, Brooklyn’s birthday is scheduled for July 27. BUT if she's anything like her sisters, she may decide to show up a little sooner, which would be fine with us. We can't wait to meet her!

She is also growing just fine and all of her organs look great, so we are more than overjoyed!

Unfortunately, we did get a bit of discouraging news. The fluid in Brooklyn’s brain has increased and has been upgraded from “mild” to “severe.” This increases the chance of her needing a shunt once she is born, could make breathing a little difficult at first, and also increases the chances of cognitive challenges later on in life. We remain hopeful that the fluid will level off at this point, but our next ultrasound in 2 weeks will give us a better idea if this is progressive or not.

Our OB is hopeful that the fluid will not increase, and so far, it is not causing her head to swell, which is very good. Still, we are concerned and asking for prayers on this very specific item.

And, by the way, your prayers are working more than you know! All of our anxiety about our appointments and switching doctors has clearly been bathed in prayer, and God is showing His presence in very real ways.

As you already know, we are very confident in our neurologist, but I haven't had a chance to share that my OB nurse actually prayed for me at my first appointment (yes, PRAYED!), and yesterday’s ultrasound was performed by a gentle woman who had lost her own child to a more severe form of Spina Bifida. (More on those stories later...) We KNOW that these were not mere coincidences.

"For where two or three come together in my name, there am I with them."

Matthew 18:20 NIV



Jeff and I are so thankful for all of the prayers and support we have gotten up until this point, and we feel very confident that your prayers -- and God's awesome power -- will help the fluid in her brain subside. We continue to trust and hope in His plan!


"Our Father in heaven,
hallowed be your name,
your kingdom come,
your will be done
on earth as it is in heaven."

Matthew 6:9-10 NIV

Friday, May 14, 2010

Up

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She tells me she wishes she could fly.

I totally know what she means.

The weight of this world is so heavy sometimes. Too heavy.

But lately, I find myself floating. Floating somewhere between Heavenly hope and worldly reality.

This in-between, this waiting. It's confusing. Some days, I really don't know what I feel.

As I float, I work hard to keep my eyes focused on the prize, even when the gravity of it all tries so hard to keep me down.

I look at my girls; I try to live in the blessings. I try to ignore the rain and concentrate on the sparkle of the glitter that is providing so much joy. Sparkle that is making our day brighter, even if it is a little bit messy.

It's a choice, happiness. To have an Upward perspective. To hope. And I thank God every day that I have that choice because without it, my feet would never leave the ground. Even if that means I have to float a little before I fly.

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(Emma's preschool Teddy Bear Picnic balloon release)

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Isaiah 40:31 (NIV)

Thursday, May 06, 2010

Dandelions & Tulips

Saturdays are my favorite day of the week, especially in the spring and the summer, when the weather gets warm. Jeff is (usually) home and takes the girls outside to work with him so I can have a little "me" time, which usually involves toilet scrubbing and laundry. But nonetheless, I get a little break.

However, it isn't long before I hear a tap at the door or several urgent doorbell ringings. As I open the door, I am greeted by two little girls with hands full of dandelions and faces full of smiles. "Here, Mommy, for you."

I love that. And I don't think it will ever get old. Ever.

A few weeks ago, we had a Saturday that followed that exact series of events. As I relished the moment, I filled a plastic cup with water, gently placed my gifts inside, set it on the kitchen counter, and happily went back to cleaning the bathroom.

A quick water break led me back to the kitchen, where I noticed that the plastic dandelion cup was actually sitting next to a glass vase full of purple tulips Emma and I bought a few days before in honor of Brooklyn. We both agreed she would like them, so we "splurged."

As I saw the contrast of those two vases, my human nature took over and I started to go there...

Brooklyn will probably never be able to run around the yard on a Saturday morning with her sisters.
She will have to watch them from afar.
And she will never bring me bouquets of dandelions...at least not without a lot of physical effort
.

When these types of moments come, I have learned to literally look Up. And just like every time I choose to that, God revealed something amazing to me. This time, He drew my eyes back to the tulips. The beautiful, beautiful tulips.

How in the world did I miss their beauty?

And then He fixed my eyes on both flowers:

The dandelions...bright like the sun, full of life, carefree, and a bit wild.

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The tulips...purple like Royalty, peaceful, carefully constructed, and a bit more fragile.

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Both created by God. Both beautiful in their own way. Both perfect in His image.

My mind was then drawn to a short essay someone sent my Mom days after we found out about Brooklyn:

WELCOME TO HOLLAND
by Emily Perl Kingsley
c1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.




Interestingly enough, going to Italy has always been a dream of mine, and Jeff and I were fortunate enough to literally go there a few years ago. It lived up to every expectation I had, and we absolutely loved it there.

But I know we will love "Holland" as well, and I'm pretty sure it will surpass all of our expectations.

After all, I hear they have lots and lots of tulips there.

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Tuesday, May 04, 2010

A Piece of Me

I had my first dream last night. Well, my first dream that wasn’t really a dream at all, but more like a glimpse into the future.

I was in the hospital awaiting surgery. My Dad was there and so was my friend Katie. There was a mother and a daughter in the waiting room as well, both of who seemed to have symptoms of Spina Bifida. The daughter was joking with the mom that she didn’t have any real problems, but the mom was arguing that she did. They were smiling and laughing together. And next in line for the surgery.

I was trying to be brave, and I couldn’t see my Dad for a second. And then I caved in and hugged my friend Katie. I was crying. I told her I was scared. I had never been operated on before. She said, “I know,” and cried with me.

Then it was time to sign my name in at the surgery check-in. But instead of my name, I was supposed to write my relation to those in the waiting room. I wrote, “daughter, Mommy, friend.”

Only neither Emma nor Kendall was there.

And that’s when I realized I wasn’t the one really going into surgery. It was Brooklyn. But I couldn’t see her, which actually makes sense. She isn’t here yet.

I was woken up from my dream to the sound of Kendall crying, and I as walked to her room, I realized just how real my dream was.

Every time Brooklyn goes into surgery, it will feel like I am the one going in. A piece of me getting wheeled into that room. I can’t phantom that feeling yet, but I know I will have to feel it many, many times in the years ahead. I am scared.

But I do know I will have my family there and my friends. They will hug me and cry with me. They will be—and have been—there to support me every step of the way.

And my daughter will have to remind me every time that she is the one going into surgery.

But I will argue that is not the case at all.