Beautifully scarred

Turns out there isn't much time to post when you have freedom to get out of the house more!  Since my last post, we enjoyed a very fun 12 day trip to Georgia as a family of five for the first time since August 2011.  Long story short, we enjoyed seeing family that we have missed and meeting many, many people who we did not "know" but who have been praying diligently for Reese this past year.  It was almost as though Reese knew who these special people were because she leapt eagerly into their arms and gave them hugs.

We enjoyed Halloween with a lovely Cinderella, a little ladybug and a monkey boy. We've gone to the museum. We've been on walks. We've played in the leaves. We've gone to the zoo.  We've been out to eat. We've gone to church as a family.  Brian and I have gotten out of the house a few times without the kids.  It has definitely revitalized us a bit. It's still easy in the day-to-day to complain or feel grouchy with the normal demands and worries of life, but for the most part we are coming out of the hardest season of our lives.  Reese's MRIs continue to be encouraging and she is coming along with her therapies well.

Perhaps the most precious opportunity came this last Sunday as we were able to have our twins baptized together.   Brian and I also had an opportunity to share Reese's/our story.  It was very special for us and healing to think through, process things and package (a little bit) what the last year has been like and what God has taught us in the midst of it.  I shared first and told Reese's story and talked about several of the things that I have posted here before.  Brian talked next and then the babies (they will always be my babies even though they are fast approaching 2 years) were baptized after we took vows to raise them in such a way that God would be glorified.

Since this blog has been me, telling Reese's story through my experience of it, I close this post with  what Brian wrote and read for our church below:

Hast thou no scar?

No hidden scar on foot, or side, or hand?

I hear thee sung as mighty in the land,

I hear them hail thy bright ascendant star,

Hast thou no scar?

Hast thou no wound?

Yet, I was wounded by the archers, spent.

Leaned me against the tree to die, and rent

By ravening beasts that compassed me, I swooned:

Hast thou no wound?

No wound? No scar?

Yet as the Master shall the servant be,

And pierced are the feet that follow Me;

But thine are whole. Can he have followed far

Who has no wound nor scar?

(Poem by Amy Carmichael)

Most of my Christian life, I have wondered why God would want me to follow him. Mostly because I did not see evidence of sacrifice or scarring as a result of following him. How diligently can you follow Christ without emotional, physical, political, professional, social scarring. I must be afraid to follow him fully. Is there even progress enough to suggest that I am following him at all?

Reese’s diagnosis was devastating for me. I did not process it well and still struggle to put it in its fullest context, spiritually. But her wounds, the surgical scars that she now possesses, are battle wounds that declare her a cancer survivor. They are beautiful marks of a hard fought war in which she has not only survived, but thrived and grown.

What scares me the most today, one year later, is not a recurrence of cancer in Reese, but it is the realization that all my children suffer from a more deadly cancer – Sin. We all have a mortal wound- that if not treated correctly will lead to our demise. But God, in his infinite wisdom, allows sin to fester and grow for a time so that it might apply pressure/pain to our bodies and mind so that we begin to seek a cure for our ailment. Unfortunately for many, we are more aware of the pain caused by the cure than the insidious death that we succumb to over time.

Sin has to be cut out- often violently and harshly. We have to submit our fear of the treatment to the curing hand. We become scarred, and I would submit beautifully scarred. Reese has beautiful scars- two on her head, one on her neck, two on her abdomen – that will always remind me of God’s faithfulness to our family. On her first day of school, I will kiss her on the head and thank God that she is walking into her first class. On her wedding day, I will give her away and be fully aware that she was never mine to possess – her scars are evidence that she belongs to another. When she has her own children, I will be utterly convinced that God loves those that honor him to the thousandth generation. All of these more vivid because of her scarred body. But, I realize that each of my children will need a beautiful scar- maybe several and some disfiguring. For if I really believe that God is good and that he is personal then I want the tumor of sin removed from their hearts. And more so, I want to submit myself to his healing hand.

Only now, do I feel that I am immerging from the devastation of the last 15 months. I did what I advise you not to do. I sought isolation and solace in my own wisdom. I can figure this out, that’s what I told myself. I can get us through this. I was foolish. But how do you know what you will do when confronted with such an unimaginable situation. Fortunately, God continues to pursue.

And that is the most critical revelation that I have encountered. God continues to pursue us – even when we don’t want him to. Time after time, I have rejected his help and guidance in the form of Godly friendship and wisdom, or failed to think that the great gifts I have been given are in fact “good”. But what I realized, who am I that a God of any goodness at all would have any desire to know. I am not generally charismatic, I am self-centered, I can be cold and quiet. “What did I ever do, to deserve love from God?” The answer in fact is quite simple – nothing. God in his goodness reached down into this world full of people just like me and provided an answer to all our pain – Jesus. A wonderful God said, Brian I want to know you and for you to know me, but your sinfulness is between us. My Son will satisfy the penalty for your sin and you can know me and be near me. I would be lost in utter despair without the kindness and goodness of God.

We as men and women, made in the image of God whether we recognize that or not, must reorient our thought process. I must not interpret God’s character through my own circumstances. He is not only good when I get my way. He is not only good when he comes through for me. He is not bad or indifferent when things are difficult. No he is always good, and more than that he is always doing good.

On the death of his wife, George Mueller considered the 119^th psalm at her funeral.

“God is good and doeth good in giving her to me

God is good and doeth good in leaving her so long with me

God is good and doeth good in taking her from me.”

I want to live like George. God is good and did good in giving me Reese. God is good and did good in leaving her so long with me. And if he chooses, I want to say that God is good and does good in taking her from me. But today we celebrate his goodness in healing my daughter. More than that, we raise our children up to him and ask for his favor and revelation of sin and satisfying grace in their life.

Free At Last!

Well, if you have seen the Stansfields out and about this week, you may have noticed something different about us!  We've been a COMPLETE family of 5 with 3 very special kiddos in tow!  Last Monday, Sept 24th, we got some EXCELLENT news that Reese's immune system had recovered to the 50% of normal mark....which means we get to treat her like a normal kid when it comes to exposure to the outside, food, people, etc!  I've been too busy to write because we have been "exposing" Reese to as much fun as we can manage with 3 kids age 3 and under!  I think our newest challenge has been figuring out how to keep two runners in line while toting Reese and our gear around out in the real world ;)

Reese has taken it all in stride.  She LOVES being out without her mask on and she loves smiling at everyone she sees.  I've taken my camera with me for all the new adventures and I'm quite certain everyone at Target wondered why in the world I was photographing my 18 month old's ride in the cart.  No one could have guessed that it was her first ever trip to Target and her first ride in a cart!

Though we've had a great week of fun, we will have to temper it some so that I can work with her at home on reaching key milestones, such as crawling/walking as well as work on eating with her.  She has eaten a little bit here and there but she still doesn't love it.  For the next 3 days, we will be doing a "challenge" where we reduce her Gtube feeds for a few days in order to stimulate some hunger and hopefully "flip the switch" to help her realize that eating is fun (and necessary).

Honestly, this week, I've identified a bit with the guy from Shawshank Redemption, who didn't quite know what to do with himself once he was freed from prison.  Though you dream about the chains coming off, they at the same time feel safe and familiar.  We've gone from no outside world, a mask, etc to "no restrictions, go treat her like a normal kid."  It makes me a little nervous but I'm trying to push through it.  We even went to church and put her in the nursery this past Sunday.  Of course, there were only 3 kids in  her nursery, which included her and her brother (living on the edge, I know!;)

Here are a few photos of our week of adventure.  Mommy is tired, but very happy!

First day of freedom=Reese's first wagon ride!

Charlotte always wants to be the "lion leader" aka the line leader.

Reese finally got to go to the fountain!

Philip driving the wagon.  Reese was completely trusting...poor girl!

And he's off! The boy loves to climb stairs.

Charlotte did a great job making sure the "babies" didn't fall off the bench!

First time all in the car for a trip to Chickfila.  Char was mad...about something...

Oh Happy Day! :) Didn't realize how many looks red-headed twins would get!

She's just happy to be out!

Little monkey paused for just a moment to smile for me.

Reese loved playing with herself! :)

Our big girl!

All 3 in the same general area for just a minute!

An aerial view

Philip did not get the memo about little kids not
 being able to climb up to the top and come down the slide.

She is the biggest Mommy's girl!

Reese likes the crazy faces game.

Charlotte and Philip were so excited about me taking more pictures.
Charlotte literally says, "I'm done with pictures now Mommy"

Some love for Daddy.

Philip climbed up on the couch on his own to snuggle with his big sister.

Reese's first trip to Target was a success!

A trip to the toy section to buy a gift.

What Philip might look like with a white moustache and gapped-up goatee.
I know you were all wondering.  

He doesn't want a sippy cup when big sister has a cup and straw.
After both he and I ended up wearing some milk,we "convinced" him
that a sippy cup was his only option.

Yay! Reese is with us!

Charlotte was in charge of our number at McAlisters!

Ice cream!  Too bad Reese didn't want any!

Mommy and Reesey at Sweetie's

Please note the progression of Philip sliding further and further away

This quickly spiraled into Charlotte and Philip running back and
forth on the bench, screaming while Brian and I tried to hold
Reese and clean ice cream up from everywhere.  Glad it wasn't very
busy!

A few shots from Charlotte's latest adventure: gymnastics! All
the other kids leave on their pants or shirts but Char
wants to be official (only in her leotard).

She loves it but she always wants to go first and be the "lion leader" aka the
line leader.  A concept that she learned in pre-school.  

We took the twins to get some fall shoes and our monkey climbed into
this train that was meant for decor, not our monkey boy!

Reese's first day in the nursery in over a year.  She did great, while her
brother cried at first.

Leaving church.

First church nametag.  Yeah, I'm ridiculous with my pic taking!

Hold Out Hope Day-Sept 5, 2012

Last September 5th was Labor Day.  Last September 5th, we were in a corner ICU room with a child that had been extubated the day before.  Our almost 6 month old daughter had glassy eyes, a fresh surgical incision, EEG wires and white turban on her head.  She looked at us but didn't really see us.  She had lots of tubes and wires everywhere.  Only a week or so before, she was a great breastfeeder and now she was too weak to take a bottle.  Our little girl that was almost sitting solo at 5 months and could roll her way into any kind of trouble she thought up, could barely support the weight of her head.  All of it was necessary to get the tumor out.  I was "prepared" and okay with going through all of this because it was necessary to get her well.  I didn't care if she was going to be capable of doing well in school, etc, but I wanted to see evidence of that old spunky girl in her eyes.  I wanted to see a smile.  I wanted to see my Reese.  She was off the ventilator and meds were being weaned but she was not herself.  24 hours after her surgery, she had been taken off the ventilator and looked like her old self minus a turban and a lot of wires and tubes.  However, later that day, she started having seizures and eventually had to be reintubated and started on two or 3 sedating meds to stop them.  A few days later, the meds were weaned some and she was extubated again but she was not nearly as strong and her eyes looked absent even though she was awake and responsive.  We were constantly sending out updates via family/friends and Facebook.  We were desperate for prayers for Reese.  Most of our family left the weekend of Labor Day to go back to GA and I sent my sisters an email the night of Sept 4, asking them to pray for me specifically because it was so hard to see Reese looking so sick and that being away from our other two kids was difficult.  Both my sisters responded the next morning with special words of encouragement that only those raised in the same home and who know you super well know how to deliver.

One of my sisters wrote " I pray that on Sept. 5 of next year you will be standing in your back yard watching a 3 yr. old blondie and a little red haired girl (w/ possibly a helmet on :)) and a little reddish blonde haired boy running around and playing on their swingset. I am clinging to the Lord and praying for you constantly. "

As the pathology came back on Sept 6 and we met the neuro-oncologist and discussed her intensive treatment plan, the months ahead seemed insurmountable.   The plans changed a few times over the next month as new info became available but we were going to be in the hospital for the majority of the next 6-8 months.  We didn't know how our weak battle-weary child was going to make it through the treatment that could make her  better.  Over the next few weeks, I got my first smile from her and slowly but surely, Reese's personality came back through even though she often felt terrible.  

I often thought back to my sister's mention of Sept 5, 2012 and thought to myself, Sept 5 isn't THAT far away.  There is a reasonable chance that life could be better then.  

Holding Reese again after 3-4 days of intubation following her seizures.
As bad as some of these pictures look, I did not take pictures of the worst days.

Holding my baby again

Being monitored for seizure activity

Had trouble holding her head up
after surgery

She even struggled to hold her eyes open.

After Reese's first round of chemotherapy, she nearly stopped breathing and had to be intubated on the floor and taken to the ICU for another 8 days.  After she recovered, we went home for about 5-6 days, during which time we had to have her stem cells collected for her stem cell transplant that would be during Cycle 6.  She was ridiculously sick and weak at home.  She vomited all the time.  She was uncomfortable and didn't want to be held.  We weren't sure if she should go back into the hospital due to how bad she felt or not.  One night, Brian and I sat on the couch together after everyone else was in bed and wondered if we were going to put Reese through something that was only going to bring her harm and not help her. We wondered, as all parents do about different things, if we were doing the right thing for Reese.  We cried and hoped for a time when we could hold Reese comfortably again.  I shared with him about the hope of Sept 5th that night and it brought both of us comfort to think about a future with Reese in it and thriving.  Sept 5 became something we would say to remind each other of our end goal and hope when things were difficult.  Not just a nebulous future time but a firm, solid date in the foreseeable, doable future.  Reese got a little better before going back in for Cycle 2 and we continued along on her plan.  

Soooo, a lot of background to say, we have planned to  CELEBRATE  Sept 5, 2012 for quite a long time.  Reese isn't quite running around yet and she doesn't have a helmet on.  Philip's hair is more red than blonde-red, but we are so thankful to have made it to this date!  Reese is getting better day by day, bump by bump at times, but we are so very thankful!

We decided to celebrate the day by going outside and playing on the swingset just like we envisioned when the days were tough.  Reese has not been outside to play since she was diagnosed.  She hasn't been out since transplant because she is only supposed to be outside for transport to the next place and even then she has to wear a mask because things in the air could be harmful to her.  However, because it had just rained (and most things in the air would have been knocked to the ground at least temporarily, we spent a quick 10 minutes outside maskless).  The swing has also never been so thoroughly disinfected prior to play either :) We're mostly rule-followers when it comes to our kiddos, especially our Reesey.

Take me outside to play, Mommy!

I'm going to get myself out of this chair if you don't!

The day was great but was even more a reflection of the last year than we could have planned.  It was rainy in the morning and we weren't sure if we were even going to be able to go outside.  Philip only slept for 45 minutes at preschool and bumped his forehead (AGAIN) at preschool so he was cranky and looked a little beat-up for pictures.  Brian made a special out-of-the-way trip to get milk to have with the cake and ended up dropping it in the garage (I've literally never seen a gallon of milk rip open, but it did.)  The kids were all crazo and Charlotte wanted to eat the cake pronto.  Later some buffalo dipping sauce ended up on the tablecloth and the floor had ground-in cake but it was probably more representative and appropriate for celebrating a past year filled with ups and downs and normal (and abnormal) challenges of life (longest run on sentence ever...hahaha)

We ended up getting a break in the rain in the afternoon, so Brian disinfected the swing and we snapped a couple hundred (not an exaggeration) pictures.  Reese LOVED being outside.  She giggles when we go out to take the other two to school.  (That's what a daily existence indoors does to you!). She liked the swing and the other two were incredulous that Reese was outside with them.  Charlotte mentioned it several times..."Reese is outside with us?"  She also thought it was Reese's birthday because of the cake so she kept telling Reese "Happy Birthday!" and would occasionally tell Philip too since she knows that their bdays go together.  And it was a birthday of sorts....hopefully, a birthday into a fun new year, full of adventures without a mask.  And maybe without some medical equipment.  

Our sweet biggest baby girl

She loves it!

Reese, let me show you how to swing like a big girl!

Philip can't believe Reese is outside too!

I'm not sure if Reese was enjoying herself...hahah!

Twin red awesomeness :)

Oh, how we LOVE these three!

Sib love!

Philip is a total goofball! :)

Reese getting into stuff now!

We finished it all off with pizza, cake and more pictures.  Reese was not interested in eating as usual but she did dip her fingers into some cake which is progress for her.  

A tasty cake though the artist's penmanship and
spelling left something to be desired....
Yay R-E-S-S-E?

I'll put a finger in it, Mom.  Are you satisfied now?

Charlotte really hates cake.

Getting her hands messy is progress!

Finger-licking good!

Happy dance!

More happy dance.  She is the best baby dancer ever!
 (don't tell Charlotte and Philip!)

After the mess was made, all 3 needed a bath so we tried for the first time ever to bathe all three together.  Reese surprisingly seemed to enjoy her bath more with company in the tub to enterain her!  All in all, a good day.  It's wonderful to finally be here in September 2012 and see our sweet baby develop into a toddler (or scooter).  Now, I'm ready to dream about Sept 2013!  I'm envisioning a cancer-free walker and eater with her sibs at Disney World :) 

Can't believe they are all in the tub together...
FINALLY!

Philip, oh Philip...

Poor guy is so very thirsty....

LOVE that she can have messy hair now!

Some random cuteness from Daddy's chef helpers while
Mommy was gone.