So cute, don't you think the Tigers should win the world series just for her? I do, just sayin'!

I was blessed and honored to be a part of a special service at church this morning paying tribute to the holiness of God.  Tomorrow is preparation day for our family.  One of the songs that was sung in today's service seemed exceedingly poignant with me today. 
Here are the lyrics or click the link to enjoy the entire song:

Lord I come, I confess
Bowing here I find my rest
And without you I fall apart
Your the one that guides my heart

Lord I need you, oh I need you
Every hour I need you
My one defense, my righteousness
Oh God how I need you

Where sin runs deep your grace is more
Where grace is found is where you are
And where you are Lord I am free
Holiness is Christ in me
Yes where you are Lord I am free
Holiness is Christ in me

Lord I need you oh I need you
Every hour I need you
My one defense, my righteousness
Oh God, how I need you

So teach my song to rise to you
When temptation comes my way
And when I cannot stand I'll fall on you
Jesus you're my hope and stay
And when I cannot stand I'll fall on you

Jesus you're my hope and stay

Lord I need you oh I need you
Every hour I need you
My one defense, my righteousness
Oh God how I need you

Lord I need you oh I need you
Every hour I need you
My one defense my righteousness
Oh God how I need you!

Father God I come to you as a broken and humble Momma who offers her daughter up to you time and time again to hold in your loving hands.  She is flesh of my flesh and as close to me as my heartbeat.  I feel her pain as if the surgeon's scalpel was slicing a wound in my own soul.   You know I would lay myself down in her place if I could.  That's what we do as parents, we taken an unspoken vow to protect our children from harm as much as it is in our power and their best interest to do so.  But this has always been out of my hands.  And safely in yours where it belongs.  I have been thinking a lot lately about the Samaritan women.  Broken in her sin.  A whisper away from falling into your arms, broken and spilled out.  And whisper you did. “Everyone who drinks this water will be thirsty again, but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life.” Oh how we thirst Lord.  I sing the words to the song above and I feel them everywhere in my body, they pound in my heart, they roar in my ears, they taste as vinegar on my tongue, they shoot like hot lightning thru my flesh, Lord I need you, Oh I need you, every hour I need you!   This experience, watching helplessly as my child has experienced pain again and again and again over the last three years has made me thirsty and calling out to you in my own barren desert.  If I do not crawl on my hands and knees to you in that desert, the gritty sand tearing wounds in my knees that match the wounds in my heart then I will not receive the drink that satisfies, the drink that will save my life.

Whatever my family has faced I have always tried to say God is good.  Your faithfulness to us has been the biggest gift for us as broken and undeserving people.  That is why I write these words. Not to say "Woe is me, look at how I suffer!" but to say "Glory to God in the Highest, for every time, EVERY TIME, he lifts us up out of our suffering and gives us gifts of peace, rest, comfort, grace, mercy, kindness, humility, and love.  Every time.   He makes our feet like hinds feet and he sets us on the high places.   I pray that I will always always always thirst for my Savior and my King in that way.  I would never have wished for this cross to bear because I would never ever have wished for my baby to suffer in this way.  But I am so abundantly grateful for God's mercy and grace that he has shown us over these last three years.  Other hardships in my life have been masterfully crafted to prepare me for this.  When Sophie was born I called out My God My God WHY have you chosen me to be this baby's Momma? I did not see within myself the strength to weather these storms.  I certainly may have imagined myself to have been living a life of big faith prior to that day.  But I have been refined by fire.   There are times when these trials fade into not even feeling like "trials" they are just part of my life, a huge part granted, but no worse than many horrible things that people all around me are crawling out from underneath like a pile of rubble after a hurricane.  It has become a second identity to me, part of who I am.  I am Sophia's Momma. That is my badge of courage.  Except I am not courageous. 2 Corinthians 12:9-10  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.  As I dared to believe that I was becoming an "expert" at all this stuff my ego was humbled as we suffered a literal blow this weak and Sophie has a leaky balloon.  In those first few minutes it felt truly like a crisis.  Maybe even the first few hours. But now I see it as it is, as it always has been, another parched moment in a world where we need to constantly be reminded to thirst, to crave our Father, our Savior to save us.  If we do not remain broken and spilled out.  If we are not an empty vessel.  Than we CANNOT be filled by Him! 

I have been encouraged to pray for my daughter in written form.  I would ask now wherever you are that you bow your head and pray this prayer with me:

Lord Jesus, we need you.  Little Sophia needs you Lord.  As she goes in for another surgery Lord I pray a special annointing on her body.  I pray for a successful surgery.  I pray for wisdom and supreme expertise in the surgeons hand as he maps out the grafting and works to cut away and decrease the risk of my child suffering through the hardships of cancer. Lord I pray for peace that passes all understanding to wash over Craig and I as we wait through her surgery.  I pray for good pain control for my Sophie in the hours and days after surgery.  I pray for a special blessing on her big sister Grace who internalizes big emotions regarding all that she has seen her baby sister go through and shoulders them as her name implies, with grace that far outweighs her age or maturity.  Lord and I pray as always that you would use this broken scarred situation in our family to give glory and honor and praise to you forever and ever.  As the tears stream down my face even now I commit my child into your hands.  Thank you thank you thank you for all you have blessed us with.  May we never cease to honor you with our lives.  Amen. 
Thank you all who read this, who think of us, who pray for us.  May the words I stumble to speak which are but a glimmer of a reflection of all that is welled up in my heart spill over and touch you in your need and your struggle and offer you some of the peace and love and mercy that God our Father so desperately yearns to lavish on all of us who dare to whisper "I too thirst". 
 
Sincerely and honestly,
Amanda

Curveballs!

You all know the phrase; When life hands you lemons, make lemonade. Right?? So the other day I read: If life doesn't also hand you sugar and water, than your lemonade is going to suck! 

I thought this was hilarious but so poignant.  Yes you have to make the best out the hand you are dealt but sometimes in our humanness we feel at a loss as though we don't have much to work with! That's when God can swoop in and lay down a Royal Flush for us.  OK so one more analogy...This week I have been thrown a few unexpected curveballs.  But my God is big enough to hit a grand slam homerun, and that is what I am hoping you will pray along with me for that!!  (Let's hope the Detroit Tigers are big enough tonight too, but that is a whole different story!!) 

Monday in Sophie's preop appointment I found out that Sophie's surgery was Tue 10/11 not Wed the 10/12 as we had mistakenly been planning on this whole time.  In my first few moments of panicked dialing to make arrangements to accommodate for this small snafu God provided and everything worked out ok.  There is something about the phrase "My two year old daughter is having her 8th surgery..." that gets a "whatever you need is fine" response from people.  Curveball to homerun!

So I was doing ok, tying up loose ends, planning for food, mother-in-law coming in, etc etc burying myself in "busy work" makes it much easier for me.  Tonight I was planning on sending out this last pre-op notice to you all.  Craig has Parent Teacher Conferences tonight (he was supposed to have them next Tue too so that was the worst of the panicked shuffling) so tonight I am just chilling at home with my girls.  I went upstairs with Sophie to get her pjs on and suddenly noticed her front right balloon is soft and squishy.  Panic! It's supposed to be rock hard like all the rest of them! Curveball!

I paged the surgeon and he confirmed my worst fears, her balloon has most likely sprung a leak.  The saline is completely harmless to her of course but the "risk" is that if the balloon flattens back out her stretched skin can actually shrink back up so he said our assignment between now and Tue is to keep filling it to avoid "shrinkage" (such serious subjects need some comic relief!)  Curveball, huge huge curveball! I couldn't talk to Craig and just the fact that I had thought for two seconds there that Sophie was going to be rushed into surgery tonight I was shaking and starting to cry.  I did what anyone would do. I called my Mom.  She listened like she always did.  She made sympathetic shocked sounds as she took it all on her shoulders as I did mine.  She consoled and comforted.  And then she did the very best thing for me, she prayed. 

With Sophie on my lap I rested my hand gently on the soft squishy balloon as we formed a ring of three generations of Mothers and Daughters loving eachother and wanting to protect the others from harm.  She prayed as I am asking you to join in praying with us that God could create a cushion around that balloon so she would not lose too much of the progress we have made that it would be protected from further harm.  I know that we can still have a homerun because of God! He is able to do immeasurably more than we can hope or imagine after all!  Please pray with me! It's time to blow dust off your buttons! Sophie's Super Supporters, she needs you now!! Here is one of my favorite songs these days, always in my head... 

Her surgery time is most likely around 11, I will keep you posted that day via facebook! I am thankful to all of you.  God has already turned many curveballs into homeruns in the last 3 years.  "My hope is in you Lord, all the day long, I won't be shaken by drought or by storm." All praise and glory to God!!

Can't believe how long it's been..

I have had nothing major to report in so long, we just have been loving summer and dealing with Sophie's expanders and counting down the months (days, minutes) until surgery! We are now three weeks from  THE day! Luckily ArtPrize kicks off today in GR and hopefully that will keep us busy until the big day! Can you believe little Sophie is almost three, I can't!! What a busy three years.  Poor thing doesn't know it but between surgery and her birthday we are getting serious about potty training and getting her into a big girl bed! I can't believe how different life will be for us when we get over all these hurdles.   The other night Sophie was having trouble sleeping and we gave her some medicine and brought her into our bed and I was laying there looking down at her as she settled back down to sleep, she looked so big, in the dim  light wearing her sisters old jammies I really couldn't tell the difference between her and Grace.  A very bittersweet feeling, how come our babies have to get big?? So three more weeks and I hope they go very swiftly.  She has trouble sleeping, is miserable in her car seat and even when I put size 4 clothes on her she complains they are "tight on my balloons".  The funny thing is she really identifies with her balloons this time around.  I can see her little mind wondering why other kids don't have them  and she frequently points to women's chests and asks them  "are those your balloons?" It's cute to see her looking for people like her and yet sad that she realizes she is different.  It will be good for me too to be done with this round, the last few months are hard, I get emotional adjusting to the looks and questions from  people.  I do not look forward to the week of surgery but by the week after hopefully we are feeling great then!!!

In getting ready for the big day I still have many Sophie Super Supporters buttons so if you are interested in having one to wear on Wed Oct 12th I have tons left (any donations would be appreciated - they were $2.50 ea and we had to buy 50 for the walk but not that many people wanted them!)

There will be another opportunity for you to support the national organization Nevus Outreach around Christmas time.  Little Sophie will be featured in a calendar as "Miss November" of kids who all have a nevus of some form.  The more preorders we get the price may go down but they would likely be around $15.  It will be a unique opportunity to raise money for research for the Nevus Outreach organization to help Dr's identify the cause and stop other children from facing these struggles.  It will also provide you with a short bio of each of the kids featured which would give you an opportunity to pray for more of these children with a nevus and their families.  What a great way to impact others lives.  Please consider this opportunity and I will likely start a facebook event to order if you are interested when I know more details.  If you are not on facebook and you are interested you can always comment here or email me.

You know me I must end the post with an adorable anecdote, however those of you on facebook have already heard this.  We were running errands the other morning, we do this a lot now after we drop big sister off at Kindergarten, and Sophie was crying in the car because her seat belt was hurting her.  To fit between her leg and stomach expander it's really tight but if you loosen it, it is way too big on top.  Anyways she was crying and uncomfortable in the car, "my balloon's are hurting me Momma" is not what you want to hear from your daughter.  So we go into the store and as we are going through the aisles she starts singing at the top of her "God is great God is good, blessed be the name of the Lord".  My only regret is that there weren't more people in the store at that time that could hear her praising God with the words of Job. It wasn't even from something that we had just been listening to in the car.  She is a beautiful example even to me!  I hope that she will always praise God despite her difficulties. 

Well I am touched as always when people ask about Sophie or pray for us.  Please continue to do so.  I will keep you posted about surgery details as we get closer and maybe could use some extra help with Grace around that time.  If you are interested in either a button or a calendar let me know! Amanda

Team Sophie!

Yesterday my family received an extra dose of blessing. We were thrilled to be a part of the charity walk to benefit Helen Devos Children's Hospital however what was extra special to me was that we had 37 people come out to support us with Team Sophie. I have to admit, being new at planning and organizing an event that part was tricky for me and a little bit stressful. But I was so touched that so many of you were willing to take time out of your day to support us.

 Too many wonderful moments to capture them all! I was thrilled and touched, I didn't get a chance to spend a ton of time with everyone but I am so touched that all of you were there.  While I was leading up to the big day I made a video, chronicling Sophie's journey up to this point. It was a wonderful way for me to reflect on all of God's blessings and how alive the promises in his word are and I tried to include as many as I could that have touched me over the last few years.  I am sure this video will undergo a few more edits over the years.  I don't always get a chance to do the things a mom should normally do for her kids, I haven't scrapbooked a single moment of Sophie's life yet! But I do blog and I made this video.  She is a part of my testimony now and my prayer is that all of you who pray and care for her and lift us up both near and far will be a part of her story as well that she will cherish this for years to come.  This video really is a tribute to all of you.  Thanks for all you do for Craig and I and the girls!

Meeting new friends!

Wow! What a blessing today! We went to Lansing after church (had a little bit of construction detour which almost made our GPS lady start cursing at us and after all that ended up at a bookstore that had the same address as our destination except it was in E. Lansing instead of Lansing! God could not be deterred and we were blessed to be sent to the right place FINALLY!) anyways what was in Lansing you ask?  A photography show in an art gallery called "Flesh Tones" and it featured people with different skin conditions to raise awareness and understanding about people who might look "different" to you and of course teach you to appreciate them for more than just their unique condition.  Why it was SO awesome, we got to meet 4-5 people who also had a Giant Congenital Nevus like Sophie! And three of the girls were all the same size.  And as an added praise I have been working with my Gracie on her reaction to people who look different.  You never know what might come flying out of that girls mouth! And she was great, there was a woman who had no hair and had a wig and she was talking with Grace and showing her her wig and I was so proud of how kind and mature my 5 year old took in the whole situation.  Here are a couple of pictures of our new friends!!!

Sophie and Megan (she is the daughter of the Nevus support groups director and founder, she was one of the featured subjects in the photos!)

Sophie and her new little friend Addyson

My girls with Megan and Stephanie, two wonderful adult ladies who have a giant congenital nevus! It is SUCH a comfort to me to talk to adults about this who know first hand about struggles, feelings AND blessings too!  Thanks you so much ladies! You were a gift from God!

Such a nice event, I was so pleased to be there and meet some people that I could talk to who knew a little bit of what I might be feeling. 

We are now less then 2 weeks til the big walk! We are SO blessed and touched by the number of people that wanted to participate.   We have close to 40 people! I am touched.  If you are reading this and thinking you would still like to participate, it is not too late.  Give me a call and I will fill you in on the details! Tomorrow we see Dr. Mann and I hope to know our next surgery date (or at least a ballpark) but I was too excited about today to wait to post! I feel very blessed with how God has been taking care of our family lately!!
Amanda

Update! and event

The Update is.....I have no update.  We were supposed to see Dr. Mann this Monday and all three girls in my household are ill! I have not been able to talk since Sun night, laryngitis is very inconvenient let me tell you!  You don't realize what you got til it's gone, right? We just came from watching my adorable niece and nephew run in a West Michigan run (the junior river bank) They each ran a mile and it was great to see so many kids out embracing health but it was hard to cheer when you can't even talk!  My sister actually told me about something happening next month, it's a good thing she is aware of what is going on with Spectrum Health even though I WORK FOR THEM!!! Nice, I am oblivious anyways.  Seeing as we have benefited from the wonderful services at...

...so many times and with this gorgeous new facility...

...I feel very blessed that if my daughter has to spend a lot of time in a hospital that this is the town we live in and she receives such high quality care.  Not to mention this guy....

...Gotta love Dr. Mann, he's the man!  Seriously if you ever see him walking around GR do me a favor and give him a hug and tell him thank you!

 That being said I always jump at every chance I can get to support this hospital!  So next month they are having a charity walk for HDVCH and it's in my sisters adorable little town. 

So I was looking at the website, they have a 5k run/walk or a family walk (1.5mi) I thought it would be super awesome if we could form a Team Sophie and support the hospital and come out and as a unified group to support my sweet baby girl and raise awareness about her condition.  If I can get your support to walk with us, I am going to see if I can find a place to get us team tshirts (I know nothing about this but I will do my best!) and we can have a fun event on what I will be praying will be a beautiful day and I know we could raise lots of money to help our little people in the community, because don't they deserve the best??? Let me know if you would like to do it with us and I will contact you about registration.

  Our rescheduled appointment is not till the week of the race, I hope then I will get an estimate on how much longer we have but for now things are going great, the Emla works wonders (we call it magic lotion) and allows her to get her shots with very little effect.  The only challenge is getting the timing right, having enough time to put the emla on and let it sit before shots.  Also getting clothes over her lumpy body but she doesn't mind she rests her arm on her tissue expander and strokes it and says "My bah-loon!".  If tonight is any indication of the race, Grace is more likely to ride in the stroller and my little Determinator Sophie would like to run free.  She was itching to get on that track tonight, hopefully next month she will get her chance and you can join us! 

Children of God

I struggle deeply with recent pains I face, as a parent, I know it's mostly because of how deeply we love our children. When they hurt, we hurt. When they first dip their toes in the waters of sin, we struggle with the great burden of urging them toward repentence. When they accomplish much, triumph in victory or celebrate any milestone we expect the whole of the world to stop and applaud at their acheivements with us. Our love is big and that makes it painful at times. I have experienced many heartaches lately especially when it comes to the ugly truth that no matter how much you love you cannot protect them from hurt and evil, this is after all the real world, not heaven. Today I was driving along and I heard the above linked song by Third Day, Children of God which of course I had heard many times before but today it struck a distinct chord. My God in Heaven loves my kids even more than I do, they are His children too. All those deep feelings and burdens I feel for them he feels even more! He has a plan for them and He is much bigger than these "momentary troubles" and it is "achieving for us an eternal glory that far outweighs them all" (2 Cor 4:16) How Wonderful!

And then I had a perfect moment of clarification, I am His child too. So when I am brokenhearted, feeling defeated and alone God feels pain because as His child He desires to keep me from pain and He loves me so much. There are SO many times that I can't begin to fathom how I ended up on the path that I am on, I always say that I don't know why God thought that I was a strong enough person to be Sophie's mom, she needs someone who is more disciplined, with better self-esteem and self-awareness, a much stronger woman of God, a better prayer warrior, I could go on and on about where I lack. But then when I look at what I have been through not just with Sophie but even way before she was born and I realize I am a survivor and He is teaching me more and more every day. I feel like some people do get a much easier road to travel but if I can share with Sophie that I understand a little about scars (metaphorically speaking) that makes my difficult journey a beautiful story indeed. My prayer is that I can always always always point my children to Him and that I can be open to the uneven terrain of this path I am on and that I will "have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us." (2 Cor 4:7) Thank you God, that you count me as one of your children!

Now enough about my "issues" here is why I am supposed to be blogging, to tell you how Sophie is doing. I would like to do a quick summary/recap of where we are at for new readers or just because people constantly ask me questions that indicate no matter how many times I seem to explain it some are really still unclear about the situation. Sophie was born with a GIANT mole covering almost 40% of her body at birth. It is extremely rare. The treatment is removal due to many reasons: 1. Most importantly - high cancer risk, the more we remove hopefully the more we remove the risk, and if it did become cancer you can't quick remove 40% of your skin so you sort of need to get a head start 2. Discomfort it causes her to itch incredibly (dry skin and thick hair on mole) and overheat (she got multiple fevers last summer because of the size of the mole and it doesn't sweat) 3. Appearance - obviously we want her to look as good as possible for her own self esteem but this is NOT why we are doing it and in the end we are replacing moles with scars so she will have many appearance hang-ups to overcome I am sure as well as the fact that we won't likely be able to get the whole thing, she has hundreds of mini-moles or her polka dots of many sizes all over her body which continue to appear forever. The removal process is that you put tissue expanders under good skin, stretch it out (by injecting it for many months, about 8 usually), then you remove the expanders, pull down the newly stretched good skin and cut out as much of the mole as possible. Sophie has had seven surgeries already. She now has 4 tissue expanders (balloons as we call them) in, one on her leg, two on her tummy and one on her back.

We are supposed to inject them, originally we were going to do 2 every day, I thought I would rather get all four in one day to give us a day off in between. The first 2 times we injected went pretty good, the last 2 times were awful. Tonight we tried to role play with her Dr kit and dolls first, we gave them shots and comforted them, etc. That didn't seem to help, when she sees the real shot paraphenalia she starts crying. She needs to be fully restrained, she screams, all the while drooling chocolate that Grace and I are desperately feeding her thinking it will help her. And of course Craig gets tense when she is screaming and screaming and many times the needle wasn't in the port correctly and we have to pull it out and put it in again in order to get the fluid to go in so she ends up getting even more then 4 shots. She says things like "no more owwies, Momma" which of course is heart-breaking. And I don't want to give her or Grace some sort of traumatic stress disorder (Grace got sort of traumatized watching it one night). It's definitely a heavy scene. Tomorrow we are going to go get some numbing cream from the pharmacy and it has the potential to make it so she doesn't feel it so please pray that it works for us. That is about it for now, we are just trying to work out the kinks. Sophie will be getting shots about 7pm every other night so that's a great time to offer us up in prayer if you think about it and I will let you know how the cream is working. Thanks for listening, my heart is strengthened because I know you are out there! Amanda