time for a trade in...

“Opting for the trade in offer…”

The last few days have been some of the most difficult days I have ever faced. Since losing Hope on Sunday evening, I haven’t been sleeping much at all because I am losing the battle to every thought captive and make it obedient to Christ and I can’t seem turn my brain/ thoughts off long enough to get any solid amount of sleep. This morning I was feeling pretty low and just wanted to stay in bed, cry, and be left alone completely. I was determined to rearrange my day, clear my schedule, graciously bow out of my commitments, and just sulk ALL day long. I wanted to cry it out and honestly was determined to be in a bad mood and pissed off about the circumstances we are currently facing. We were completely convinced that God would show up and show off His glory through healing our little Hope. Instead He has chosen to show His glory through her death. Although I know that God’s ways are higher than mine and His plans are perfect, I wanted to stew in my grief for a brief moment or all day long which ever came first.

But God had other plans because as soon as Jake left for work, the baby woke up and demanded her daily morning cuddles (which just so happens to be my favorite time of the day on most days). And so we took our blankies and began to snuggle in the recliner but instead of turning on the TV (I was in such a foul mood, I refused to stomach the “Wiggles”), we plugged my I-pod into the speakers and put it on shuffle. Music has an uncanny way of ministering to my heart in a way that I can’t even express. The first few songs that played were God ordained… “Every Season” by Nichole Nordeman and then “Times” by Tenth Avenue North. I love that song especially the part that says,

I hear you say "my love is over,
its underneath, its inside, its in between
the times you doubt me, when you can't feel
the times that you've questioned 'is this for real?'
the times you've broken, the times that you mend
the times you hate me and the times that you bend
well my love is over, its underneath
its inside, its in between,
these times you're healing
and when your heart breaks
the times that you feel like you've fallen from grace
the times you're hurting
the times that you heal
the times you go hungry and *are tempted* to steal
in times of confusion and chaos and pain
I'm there in your sorrow under the weight of your shame
I'm there through your heartache
I'm there in the storm
my love I will keep you by my power alone
I don’t care where you've fallen, where you have been
I’ll never forsake you
my love never ends, it never ends”

God completely broke my heart (and my determination to be in an ugly mood) with “Beauty for Ashes” by Shane and Shane. The lyrics of this beautiful song mirror the scripture found in Isaiah 61:2-4…. Which says “to proclaim the year of the LORD's favor and the day of vengeance of our God, to comfort all who mourn, and provide for those who grieve in Zion— to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the LORD for the display of his splendor. They will rebuild the ancient ruins and restore the places long devastated; they will renew the ruined cities that have been devastated for generations.” Through those verses and those lyrics God was offering a trade in deal I could not refuse…

beauty for ashes
a garment of praise for my heaviness
beauty for ashes
take this heart of stone and make it Yours,

I delight myself in the Richest of Fair
trading all that I’ve had for all that is better
a garment of praise for my heaviness
You are the greatest taste
You're the richest of fair

After listening to those songs and spending some time cuddling the most precious baby girl in the world, I became determined to face the day and whatever hurts and difficult moments it held. Only a fool would hold onto anger and despair when our loving God is offering healing, beauty, and gladness in its place. I hauled my booty to bible study and allowed God’s word to speak even more healing over my hurting heart. Hosea 6:1-3 offers more powerful healing promises, “Come, let us return to the LORD. He has torn us to pieces but he will heal us; he has injured us but he will bind up our wounds. After two days he will revive us; on the third day he will restore us that we may live in his presence. Let us acknowledge the LORD; let us press on to acknowledge him. As surely as the sun rises, he will appear; he will come to us like the winter rains, like the spring rains that water the earth."

This weekend is our annual Y-Shua Retreat with the students in our youth group. We go to this beautiful facility and stay in log cabins and take in some incredible scenery. It’s one of my favorite things we do with our youth group ALL year. This year theme is “TRADER” and we will be challenging our students to let go of things they are holding onto and trade those things in for what God is calling them to grab a hold of. Guess God had some things we wanted to speak over my heart about being a trader before the weekend even started!!

Lessons from Hope~ Heaven's newest angel baby

my sister had an amazing gift for written communication so I wanted to share a final update on Hope that she wrote.....

I apologize for the delay in getting out an update on Hope. It has taken me over 48 hours to be able to find the words. Sadly, I am learning that even for me (an inherent communicator), there are times when words do not come easy. I wanted to make my last update about Hope perfect...I wanted it to inspire, to encourage, and to fully encapsulate the spirit of our little princess warrior. But now I realize that there are no words that will ever do that little girl justice. No words can ever tell the story of how much she meant to her family (most of whom she never met); how many lives she impacted in the three short weeks she spent in a children's hospital in Michigan; and how long-lasting and significant we know her gifts to us will remain.

On Sunday, March 22, Hope was resting in the arms of her two grandma's in her hospital room while her mommy, daddy, and little brother Jonah were back at the hotel taking a nap. Without warning, she started turning blue and unfortunately not even a team of the country's most skilled doctors for this condition were able to save her life. Obviously, there is heartbreak . But what there is not is anger. Maybe it will come, as I know that grief manifests itself in strange ways. However, Hope's parents are choosing to focus on her legacy, knowing that there was a reason that God chose this path for her and only in time will that answer be revealed.

Tomorrow Aaron and Sara will meet with a team of doctors to "debrief". On Thursday there will be a memorial service in Michigan so that they can celebrate Hope's life with people who they've just recently met, yet have been their rock during this time in their lives. They will make long drive back to Kansas over the weekend and a memorial will be held in Wichita on Thursday. The tentative plan is for them to fly out to Seattle on Friday for Hope's burial service. After much deliberation, Aaron and Sara have decided to have Hope buried in Washington. It has always been their intention to move out to the Pacific Northwest, therefore they have decided to lay their daughter to rest here. Me, Scott, and the kids plan on taking a little field trip on Saturday across the Sound to the Hood Canal to seek out a tranquil and beautiful spot for our niece and cousin. Selfishly, I am comforted with the knowledge that Hope will be put to rest so close to us. I have visions of me and the kids planting flowers at her grave and singing her "Somewhere Out There"...a song that I used to sing to Aaron all the time when we were kids. I know that we never were able to meet her in the physical sense, but being trusted with such an awesome responsibility will be something that we will forever cherish. (Jake and I are also attempting to make arrangements to fly out to Seattle with Aaron and Sara so that our small tight knit family can stay goodbye together and celebrate the beauty of the Hope's life)

Over the last few days, we have experienced moments of God's grace illustrated in various ways: The joy of a two-year-old big brother who until now had been unable to even touch his baby sister, now being able to kiss all over her cheeks; the innocent candor of Sam who during his prayers on Sunday night said, "Dear God, Please help my baby cousin Hope to have FUN tonight in heaven!"; the healing that comes from laughing with a friend about her grandfather and Hope meeting in heaven and watching college hoops this weekend, with the strict instruction from me that under no circumstances is the North Carolina fan Papa to persuade Hope to stray from her Jayhawk roots (remember sweet Hope, Roy is evil :)). It is in these moments that strength is gained and clarity defined.

Thank you to everyone for your prayers and words of encouragement over the last few months. I speak without reservation when I say that Aaron and Sara have been so lifted up by everyone's support. I am going to close with words from an email that Sara sent last Friday night after her and Aaron had went to dinner to celebrate their 5-year-anniversary. After enduring hospital cafeteria food for the last few weeks, Aaron wanted to get out of the hospital and enjoy a nice dinner. Imagine their surprise when nearly their entire meal was comped after the manager and owner learned the reason that they were in Michigan. Sara ended her story about their evening with the following paragraph.

We left amazed by yet another day that we were overwhelmingly blessed and cared for by God. I have never felt less control over my life nor more taken care of. Every single day we are reminded that He has not left us, such grace we have seen on our lives since we've been here. I think every day of my life has been filled with them but I had failed to acknowledge them until these days when I have no choice but to hope in them. We then went to the hospital to thank Hope for opening our eyes to a loving Father.

Straight from Grandma's arms into the arms of Jesus

Last night we got the phone call we have been dreading.... Hope suddenly took a turn for the worse and passed away early yesterday evening. She had been doing so incredibly well and was even stable enough to be moved into a "regular" room earlier that day. Aaron and Sara had left the hospital to put Jonah down for a nap and Hope's Grandma Mimi and Nana were enjoying some cuddle time with Hope when suddenly her heart stopped and a team of hospital staff rushed in to resuscitate her. Unfortunately their efforts we unsuccessful and our baby Hope went straight from Grandma's arms into the arms of Jesus. Aaron, Sara, and Jonah were able to spend some family time with Hope after she passed as they tried to say good-bye. What a difficult yet beautiful moment that was for them. Prior to last night, Jonah's time and ability to touch and cuddle his baby sister were extremely limited due to her risk of infection but last night he was free to hold and kiss his baby sister as much as his sweet little heart desired. Today they will begin the difficult process of planning for her funeral and making preparations to head home.

Thank you friends for all your love and support through out this process!!! Please continue to pray for us over the next few days as we grief the loss of our beautiful niece yet celebrate the beauty of the cross and it's promise that good-bye is not forever. It's hard not to let our minds wander to what Hope's life might have been. Knowing how AMAZING her parents are, I have no doubt she would have been such a beautiful person inside and out. But we know that the God of Hope works in ALL things for the good of those who love and are called according to His purposes (Romans 8:28).

"Held" lyrics~ Natalie Grant
Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
This is what it means to be held

Hope's baby step to healing

Here's an update from my sister about Hope's first heart surgery...

It's been a long and anxious day, but we are happy to report that our little princess warrior has pulled it off! I apologize for taking so long to send out a full update. However, the news was coming in bits and pieces and I wanted to wait until we had a clearer picture of how the day went. Hope was wheeled into surgery at about 8:00am EST this morning and remained there for approximately five hours. Overall the surgery was deemed a success. There have been a few minor setbacks, but hopefully nothing that will prove to be significant. During the critical part of the surgery when she underwent circulatory arrest to fix her heart, the surgeon discovered that her aortic valve was much more narrow than anticipated. The surgeon usually completes this surgical step in about 25 minutes (time is of the essence since the baby is in arrest) but because of the narrowing of the valve, it took her 37 minutes. Aaron said that when speaking to her afterwards, it was obvious that she felt a big "victory" for being able to even fix it at all, as it appears that this particular surgery was anything but routine. Please pray that the extended period of arrest does not carry with it any additional neurological damage to Hope's rapidly developing brain.

In addition, there was a complication with Hope's IV in her right hand. I am not a doctor (unless you count my honorary MD from the University of Google :)), so I am not sure of the medical term -- but the IV slipped from her vein causing the fluid to seep into her tissue, which in turn caused her hand to blister. The doctors tending to Hope immediately called in a plastic surgeon to make sure there was no nerve damage. So far it seems to be under control, but only time will tell.

Hope's chest will remain open for the next few days protected by a clear synthetic skin-like covering so that the doctors can monitor her heart's function and check for swelling. Because of this, she will remain heavily sedated. Aaron and Sara were able to visit her later in the day and reported that she had the hiccups, jerked her foot back when they tickled the bottom of her feet, and was engaging in the sucking reflex. These are all positive signs and we are very grateful for all of her seemingly "normal" newborn gestures.

Aaron and I spoke early this morning shortly after Hope went into surgery. As long as I live, I don't think I will ever forget that moment --- lying in my bed in the dark at 6:00am local time, talking with my "baby" brother about his beautiful baby girl and the challenges she will face, and yet being blown away at his courage, strength and unwavering faith in God and His grace. Throughout the day, it was hard to force the negative images and thoughts out of my head. But luckily for me, Aaron unknowingly provided me with a positive picture in my mind which I held on to all day and shared with anyone who asked about my niece. During this conversation, Aaron expressed how difficult it had been for him and Sara to get any sleep the night before. Finally at 4:00am, they gave up and headed to the hospital. There alone in the NICU, they gave Hope a sponge bath to make her all clean and pretty for her big day --- her new shot at a long and happy life. It was the image of the three of them sharing such a special moment that I chose to focus on as the day wore on. :)

Thanks to all of you for your prayers and good thoughts

Hope has proven herself to be a fighter...

For those of you who I never got in touch with yesterday, we just wanted to let you all know that Hope Elizabeth (my beautiful niece with left hypoplastic syndrome) was welcomed into the world early yesterday morning, March 1, weighing 6 pounds and 11 ounces. Sara went into labor late Saturday evening, spent 3 hours in active labor and delivered Hope with no drugs at all. In my opinion, this makes her certifiably insane, but my hero nonetheless. I talked to my mom a bit ago and Hope is doing awesome. She is over 24 hours old and has yet to be put on the ventilator or need any oxygen at all. Sara said she is still a beautiful pink color. This is significant, as most babies with her condition begin to turn blue by 12 hours of age and need breathing assistance. The doctors are encouraged by her strong set of lungs and have scheduled her surgery for early Wednesday(earlier than originally planned because she is such a fighter and doing so well). This is the first of three open heart surgeries...and unfortunately the one with the highest risk of complication. They will have to leave her chest open and keep her in complete isolation for at least 2 days following the surgery.

However, yesterday we choose to celebrate the first day of her long life.Today we will focus on the road ahead, but I also wanted to take today to rejoice and praise God for bringing Hope into our family!

Any thoughts or prayers you can send their way would be a blessing. You can read more about this amazing little girl on her Caring Bridge web page at http://www.caringbridge.org/visit/hopemaus. If you have the means and want to send some financial support, let me know and I can get you in touch with the right resources. Unfortunately, we couldn’t get donations set up through the Caring Bridge web site.

HOPE IS HERE!

Welcome to our world, Hope Elizabeth Maus!! My niece Hope was born in the wee hours of the morning today. She weighed in at a hearty 6lbs 11oz. And so far is tiny heart is holding up! There is a little extra sunshine, laughter and happiness in our world today. Today we celebrate her birth and will continue to celebrate this day on her BIRTHday for many years to come.

Hope was born in Ann Arbor Michigan because on February 3, Hope was diagnosed with a serious congenital heart defect after an ultrasound presented with abnormalities. A normal heart has four chambers, two on the right and two on the left. In performing its basic job — pumping blood throughout the body — the heart uses its left and right sides for different tasks. The right side moves blood to the lungs. In the lungs, oxygen enriches the blood, which then circulates to the heart's left side. The left side of the heart pumps blood into a large vessel called the aorta, which circulates the oxygen-rich blood to the rest of the body. Hope's specific defect is known as "complex single ventricle" -- a term describe a group of rare heart defects, which have in common, a large single pumping chamber or ventricle instead of the usual two.

Although this defect is not correctable, some babies can be treated with a series of operations, or a heart transplantation. Until an operation is performed, the ductus is kept open by intravenous medication. Hope will most likely undergo her first open heart surgery sometime later this week (in the next 4 to 8 days).

But I am completely amazed, humbled, and brought to tears at how faithful God has been already throughout this whole journey. I have not made it through one phone call with Aaron or Sara since February 3 without crying but usually they are “happy tears”. On their first Sunday in Michigan, after attending a new church, Aaron and Sara met a wonderful family who generously offered to take Sara into their home, lives, and heart. She has been staying with them over the last several weeks. They also have graciously offered Aaron and Sara the use of an empty house on their property for them to stay in as they wait out this long and difficult journey to healing that Hope is on. Sara’s best friend, Natalie, made the journey up to Michigan with Aaron and Jonah this week, and she will be staying with them to help care for Jonah while Sara and Hope are recovering in the hospital.

Over and over, God has showed up at every step along this journey to prove that He will provide from the most mundane or trivial needs to the most huge and basic needs. Throughout the bible, God’s great providence is an underlying theme. The word providence is defined as “the foreseeing care and guidance of God over the creatures of the earth, a manifestation of divine care and direction, prudent management of resources, and provident care.” Over the years, I have seen that God loves to use His precious people as instruments of His providence. Aaron and Sara’s testimony the last month is evidence of that!

In Matthew 18:19, 20 Jesus says, “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20For where two or three come together in my name, there am I with them." I think Jesus was trying to show us that He chooses to make Himself present to us through each other. We are the body of Christ and when are going through difficult times that require God’s providence and an extra dose of God’s presence, He often makes Himself known through other family members in the church. God had a divine plan and purpose when He devised the body of Christ, the global family of God. Our biological family may not be close enough to physically care of us during difficult days. It’s been killing me to know that, other than praying, there hasn’t been a lot I can do right now to help my little brother and his precious wife. But God has surrounded them with brothers and sisters to love on them and care for them in ways that I can not. And that has been amazing to see!

Please continue to pray for Aaron, Sara, Jonah, and Hope this week. You can get updates on how Hope is doing, see pictures, and sign their guestbook http://www.caringbridge.org/visit/hopemaus