Thursday, March 25, 2010

that's what faith can do

I've seen dreams that move a mountain,
Hope that doesn't ever end, even when the sky is falling.
I've seen miracles just happen, silent prayers get answered,
Broken hearts become brand new.
That's what faith can do!

Words by Kutless

Yesterday, after driving home from Rochester with tears flowing freely, this song came blaring through my car speakers--exactly what I needed to hear.

I will back up. On Monday, I received a very disturbing phone call from Gracie's cardiologist. He told me they had a "meeting of the minds" concerning Gracie's surgery that was on the schedule for this morning. After much discussion and review of her previous tests and previous surgeries, they ALL (2 surgeons and 8 pediatric cardiologists) were in agreement that it was too risky for Gracie to have this surgery. She not only falls into the high risk category, but is in every high risk category they have a category for apparently. Her cardiologist told me to bring her up yesterday, run her through the 8 appointments on her schedule and a final decision would be made.

We still had hope. This surgery has been the one that we were told could possibly give her a somewhat normal life, not a long life, but a much longer life. The key word is possibly. The doctors do not feel confident at all that she would survive the surgery, much yet the years following the surgery. If the surgery wouldn't be successful, there would be nothing left to try for her.

All that to surgery.

Without the surgery, her ventricle will likely wear out in it's own time. It's a lose, lose situation. From a wordly perspective.

I praise God for another perspective! It wasn't doctors 3 years ago that healed Gracie's valve. Even Gracie's surgeon yesterday told me "Gracie's life is a miracle. She shouldn't be here today." That's what we are holding onto. Not one thing in Gracie has changed since Monday's phone call, since last fall's scheduling of surgery. She is the same--all of her tests were good (for Gracie), she gets to stay home, rather than be in the hospital right now fighting for her life. I was told yesterday to just enjoy my family, enjoy being together--that's what we will do. And pray...we will continue to seek the Lord, we will continue to trust Him with her life and that means trusting Him to give her as many days as He has planned. If He does take her home to Himself at a young age, we will continue to trust Him, we will continue to praise Him for allowing us to parent such an amazing child.

We've had a lot to process these past couple of days. Yesterday, it was as if our hopes were crushed. Today, I am so comforted by the fact that my hope does not lie in man, but in God, who loves Gracie more than I possibly can. He loves my family and His plan ultimately is a good one.

Praising through tears!

Sunday, March 21, 2010

Spring Break

We had a fabulous week with our family! All seven of us spent the week at the Wisconsin Dells, sitting by the pool, enjoying the waterslides, just being together. Gracie felt better each and every day. Not only better, but braver!! By the end of the week, she was putting her whole head under water and going down the baby slides solo--super cute!

Half of our small town decided to spend spring break in the Dells, so Connor and Breuklyn were able to join up with some friends during the days. The weather was incredible!! We even sat outside and tanned a bit...that doesn't happen in this area much in March.

Derek turned 18 on Thursday, so we decided to spend a night in Minneapolis and shop on we did!! We opened and closed the mall, closed down IKEA--quite a day. By the end of the day, Gracie was sleeping, we were moving her from mall to car to Ikea to car...she didn't blink...she was exhausted!!

Then last night, a bunch of Derek's friends surprised him with a party...definitely a great spring break.

As for Selah, many of you have emailed me...thanks for the suggestions and the prayers. She has had a terrific month!! She is trying so hard to break some of the behaviors. One night, after a little episode, I walked into her room and she was sitting on her bed praying out loud, asking God to help her stop doing naughty things. She had tears rolling down her did I. I just know, with everything inside of me, that He is doing amazing things in her heart.

We are blessed!

I will try to update this blog on Wednesday night after Gracie's pre-op appointments. Thanks for praying for our family!


Last Monday, Derek crossed the finish line FIRST in the mile at his first indoor track meet of the year...super exciting!! I don't think I've screamed louder or jumped higher in quite some time--it was a blast. This week we get to watch him on Monday and excited!
The photo is a senior picture from Cooper Images and Design--cute, huh?

Monday, March 15, 2010

3 years ago...

It was three years ago tomorrow that we turned off ECMO, or Gracie's "machine" heart and lungs, ready to hold her for the very last time, ready to rock our sweet baby girl into her eternal home. Three years ago that our family gathered around her hospital bed, kissed her good-bye, felt raw emotion...a sadness that completely washed over us, thinking of a world without our Gracie. It is as it was yesterday.

It was three years ago that we witnessed a miracle! Life, determined by man's intelligence, man's experience, was to be over. Yet God!! He, and He alone, determines our days...Gracie's day to enter His kingdom was not three years ago on March 16, 2007!! We praise Him for three years that we didn't believe we would have. Isn't this how we should live our lives? Three years ago, my heart longed for another heartbeat, another hour, another day with our daughter. We didn't dare dream of three years with her...yet that is what we were given--how great is our God!!

I cannot tell you the comfort that brings our family as we approach yet another surgery next week. We know, WITHOUT A DOUBT IN OUR MINDS, that it is God who will determine Gracie's days. He gives and He takes away--blessed be the name of the Lord! We pray, with such expectancy, that He is going to do mighty things next week in sweet Gracie's body. Perhaps this little battle with pneumonia was a reminder that His hand is on our daughter...we need not fear, yet trust His heart.

I will say, however, that amidst the peace, we are somewhat weary. I think we can have both...and it's OK. We know in our hearts that Gracie is going to be just fine. Yet, how we dread to watch her helpless and afraid. It is so difficult to face the unknowns--this surgery is not one that is an obvious choice for Gracie. We have been given two options--to operate and give her the best chance at a longer life, or to not operate and give her several years, allowing her ventricle to just wear out in it's own time. At first it was obvious, we want Gracie to have a long life. Don't we all want that for our kids? None of us decide to parent, hoping for just a couple of good years, do we? As we get closer to the surgery, we do realize the risks involved, we do know her heart is not a perfect fit for the procedure that will be done for her.

For us to go back three years and remember the circumstances, to remember the heartache, to remember being constantly on the edge of difficult as it is, it is what will carry us these next weeks. When the news was so bad, we literally couldn't breathe or hold down our food...the peace of God was more real to us than ever before. Peace amidst the storm. He carried us, He breathed for us, He moved our feet one step in front of the other.

Back then, I didn't feel comfortable sharing completely what was going on...mainly to protect our children. They were reading the journal...for me to publish that Gracie only had 30% chance of surviving the surgery, then 5% chance of surving the surgery, then a miracle would be her only way of surviving ECMO being shut would have crushed them. We continued to tell them we serve a God of miracles--that is what they prayed for, that is what they KNEW would happen, and that is what we witnessed. We are not facing those odds with this surgery--Gracie is much stronger, the doctors and surgeon know her heart much better, and she has survived the unsurvivable.

We have 10 days before the chaos begins!! That means we have lots to do! We get to enjoy getting Gracie out of bed in the morning--it's almost a fight to get to her when all of the kids are up and home. She is so happy and snuggly in the morning. We also get to read at least 30 stories to her--1 for her nap and 2 for her bedtime. We will likely watch Toy Story and Toy Story 2 ten times each. Gracie usually can watch about 15 minutes, then the rest of the kids are glued and she is off doing something else. Usually, Curtis and I will walk in and it's our senior who is watching the kid movie and no kids around!! Gracie will go through possibly 15 identities--she takes on the role of whoever she is "into" at the time. After the cruise, she wouldn't respond to Gracie, but only Donald Duck. We had to call her Donald for at least 10 days!! Now she is Baby Woody from Toy Story. Not only Gracie gets a new identity, but our entire family does!! Last week, she was yelling "Hot Girl" from her crib in the morning. She had been calling me "girl" because I am now Bo Peep from Toy Story and she didn't know her name. So she's yelling, "hot girl" and I'm making sure everyone knows it. I had Curtis listening to the monitor, was all too excited to tell the kids, then she corrected me, "hat girl"...not hot girl. Bummer. It was a serious blow to my ego! She's hilarious.

We are also going to spend a few days at the Wisconsin Dells this week as the kids are on spring break. It will be fun to just be together with no distractions.

Today, I'm especially excited because I get to see Derek run in his first track meet of the season. Woohooo!!

Life is is precious and to be cherished...every minute of every day, we should make the most of it!

Thursday, March 11, 2010

sick baby girl

Our little Gracie has pneumonia and is feeling pretty crummy. On Monday she woke up with a cough. With her heart and lung issues, a cough is always scary for our family. I brought her to the doctor and he thought she had a mild case of bronchitis, which she did. He put her on some aggressive antibiotics and sent us on our way. My gut told me it was more than that...during the night on Monday night, she was up coughing all night long. I brought her in for a Xray, then to the doctor, and she had developed pneumonia. Since Gracie basically only is making use of one lung appropriately, pneumonia is one of our greatest fears--at one time her cardiologist told us that pneumonia is fatal for Gracie. She is much, much stronger now, however, and is actually doing as well as could be expected.

She continues to cough lots and has horrible foot pain. We aren't sure what that is all about, but it has been an issue for quite some time, seemingly worse when she's not feeling great. Tonight, she has been in complete agonizing pain...she cannot sleep, she screams, and is unconsolable. If you know Gracie, that is simply out of character--she handles pain well, is almost always very pleasant.

As I was rocking her tonight, my heart was, and still is, breaking. I cannot, for the life of me, figure out why this sweet little girl has to endure so much pain. We pray and we pray and we pray, yet she suffers. I know it doesn't help to question the whys...she was created beautifully and amazingly...but why the pain? Why the hurt? She is so innocent. I just don't get it. doesn't help to question the whys, yet they are still there, at the front of my mind and all over my heart. And to think that in 2 short weeks, once again her body will be opened up, followed by a very long, painful recovery. She's three years old, has done nothing simply doesn't make sense in my human mind.

Yet God. He has allowed this...for some reason, for some great plan...He has allowed this to happen. He knows the answer to my questions, He calms my heart, and He gives Gracie relief. He has given her breath, He has given her a sweet, sweet spirit who radiates joy, He has given her so many who love her dearly. He has given her perhaps the most fabulous brothers and sisters possible. So...while I sit here in my self-pity and daughter-pity (I just made that up), I can know that He knows. I can sit here with the assurance that the pain is temporary, His glory is everlasting. Every once in awhile, like tonight, right now, I can be hit with the realization that He knows my mother's heart in watching her little girl suffer. As He has watched His Son.

Yet God.

Monday, March 8, 2010

Thanks, Accidental Advocate!!

My first award in like a million years--so exciting! Actually, with my completely lacking computer skills, I'm not even sure how this is done! Please check out my friend Lynn at She's an amazing mom who writes with passion and purpose!

I guess I get to pass it on to another blog and DRUMROLL PLEASE, the award is going to Jean at She's a mom to many kids--her biological children are mostly grown and she and her husband have brought home two girls from China, who are the ages of Selah and Gracie--we actually were fortunate enough to meet and become real people friends!! Their story doesn't end there--check it out for yourself--you will be blessed!