Be strong and courageous. Do not be afraid or terrified, because of them, for the Lord your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6
Hey all, so much fun stuff to share!
1. I am doing a therapeutic experiment with Sophie using Kinesiotape for scar softening and smoothing. She is on her second application on the leg. If this proves very successful I know a lot of nevus parents that will be very happy! I will keep you posted!
2. Next we went to the 1st (Hopefully now annual) Michigan (and as far as Pennsylvania and Ontario) Nevus Family Get Together! We went to an indoor waterpark near Detroit and it was so much fun. We had 10 families and our girls were in the water for 8 hrs straight, it was amazing. So nice to be somewhere and be with people who understand some of your biggest struggles in a way that no one else does. Also, as parents that sometimes worry about what people are thinking, not so many strange looks when it was practically the norm to have spots at the hotel that day! Here are some of our best shots!
Grace and Sophie got to see Addyson again who we met last year, they insisted she sit with us even though she had a lot of extended family with them. Very cute!
Kathy and Emily, our Nevus adults at the party, we were thrilled to meet them!
Daddy and Sophie taken on the slide!
Striking a pose!
Madeline, Addyson and Sophie, 3 nevus Michiganders all within 6 months of eachother, amazing!
9 of 10 of the nevus owners that made the get together (Madeline was having a shy moment!)
All the families together
Too much fun! They were water babies, all day long they splashed and slid and swam and splashed some more!
It was such a blessing to me!!! God has been revealing to me all the blessings through the trials we have been through, to get to know some amazing people I never would have met if God hadn't given Sophie this extra unique feature!
3. Today we did another race for Helen Devos Children's Hospital. Two things I am bummed about, we only had half as many people that we had last year. And....we didn't get a group picture this year!!! Bummer. We did get some great shots though....
Our beloved Miss Sara and Aunt/Uncle/Cousins Baum all ran the 5k!!! They did so awesome!
Gracie had her BFF there!
Fairly sure this is almost identical to last years picture!
Sophie and her cousin Brandon love each other!
Little cheering section!
I am not sure Sophie realizes yet how awesome it is to have so many people who love her! Glad I can show her this someday! Good day Team Sophie! Our blessings run over.
John 1:16 From the fullness of his grace we have all received one blessing after another.
Not having updated this blog in over 6 months means only good things...no need. This is certainly a case of no news is good news. Sophie has been enjoying life as a normal rough and tumble 3 year old and has recently successfully potty trained so we are psyched that she is a BIG girl now! (Can't you just see the pride in those pics up at the top!)
Well that is just one of a number of things I wanted to update everyone on.
Last year we were blessed with the opportunity to meet other kids in the area that have a giant congenital nevus briefly at an art show in Lansing.
This year we are doing a get together at a hotel and indoor waterpark near detroit, possibly going to the zoo and having a whole weekend to fellowship with a group of people who understand some of our families struggles more than anyone else, also gives the kiddos a chance to make some friends who look just like them. I feel so blessed for this opportunity and hope it is a tradition we can continue for years to come. We have over 40 people coming I believe from Canada, Michigan and some other surrounding states. That is our first excitement of the summer just after school lets out (June 8-10), I am sure I will do a little recap on here afterwards so stay tuned...
The very next weekend (June 16) is the Run4acause and I am hoping that Sophie's Super Supporters will want to do a team walk with me again. (I am trying to work up the courage to do the 5k too, yikes!) Some memories...
There is some info about them supplying team logo's on tshirts this year so all new participants are welcome and we can certainly get out our S tshirt and our pins from last year. I will be making another facebook page for the event so let me know if you are interested! Last year I believe our final number was 38, let's see if we can break 50 this year!!
Finally alas our normalcy couldn't last forever...Sophie will be having another surgery on Wed Jul 11. Good news is this is not a balloon surgery and should be an outpatient surgery.
These two pictures show you how her mole still comes up relatively high on her sides and Dr. Mann's goal is to pull together the sides and get rid of as much as he can on the sides without needing expansion. (I had to bribe her with a popsicle to get these pics, she is not a fan of people looking at her, guess I won't have to work to hard on teaching her modesty :) I always feel touched when I see her show someone her mole, they don't realize what a big gesture of vulnerability and trust that is for her. Her little heart touches my soul.) After this surgery I don't know what the plan will be from there... When it comes time to make the next decisions Craig and I will need a great deal of prayer. We are very torn on where to go with things at that point. We have been given the impression that the surgeon wants to stop (for awhile/indefinitely/completely done, we don't know). We aren't sure how we feel about this. Sophie still has a great deal of mole and although we knew it was too much to ever remove completely....well needless to say we don't know what we expected. That hard decision is for another day...
Today is about all the wonderful things happening. Here is one last picture of our little Big Girl celebration with cupcakes and a new toy! I am so proud of the sweet little girl that Sophie is becoming and blessed to share her journey with all of you readers...
A few years ago now Sophie had a wound that needed your prayer. The blood flow was compromised. You came, you prayed, God healed. So grateful. She needs you again. I have been AMAZED at how smoothly things went this time. Pain control was amazing. Craig and I have been ministered to through our own emotional roller coaster. This surgery was especially difficult on my strong brave husband, I don't know why, but God has been there and holding us in his hand. I have been diligently giving him all the glory due him and proclaiming to everyone who asked how amazing she is doing. It wasn't a breeze mind you, it was still a major surgery but now I think we are seriously in need of prayers.
These things:
Her lungs still aren't clear. She seems better one day worse the next. She struggles on and off with wheezing and we are using her inhaler regularly (and Robitussen!) Please pray for healing, strength, virus-free lungs.
Her stomach incision. Be warned, gross picture....
The white section could just be fresh new skin growing up from below but it could be the start of infection. We need to pray against this and wisdom to know the difference.
Emotions for Sophie and us. She is very defensive and I usually am very careful to give her her space. I try not to mess with her unless I need to. When she sees Craig and I peering at her (even without touching her) she starts screaming "Don't touch me!!!" Very heartbreaking to see your child not trusting you or fearful almost expecting that you are planning to hurt her. Not ideal for a parent/child relationship.
I know how mighty and powerful our God is. I have seen it in our life again and again and again. I see it in others lives. Please pray for us people of God. Our whole household feels like we have been holding our breath for weeks (or maybe months) and we are all hoping to exhale and relax and just "be" for awhile. Every corner we turn I feel like we find another roadblock. Exhausting. I look forward to showing you the "fruits" of your prayers with some beautiful after pictures soon...
I was sitting in the parking lot to pick up Grace today and this song came on. I had to pinch myself to keep from weeping because I wasn't quite sure how that would look to the safety walking Grace to the car. It's an old one with below average audio quality but still very powerful!
Faithful and true indeed!!!
Sophie's surgery went off without a hitch. Long? Yes. Exhausting for us? Definitely. Has she been in some pain? Of course. But she is such a trooper. We literally feel as though we can sit slack jawed and marvel and God's grace and mercy. She went through a nearly 7 hr surgery and woke up and asked me if we could read a book. In the first 24 hrs she only officially cried once when they were taking out her IV. Stupid tape. I was sitting in the hospital holding her and I had a quiet moment of reflection. I remembered that day in early December 2008 when I was in uncharted territory holding my 2 week old infant who had major surgery came out of it and literally cried for hours and hours slowly fading into a gasping hiccup with a little shudder. I can remember the darkness of that moment like it was yesterday and hardly believe that as a Mother you can survive experiences like that with a newborn baby. But I truly believe that we have just been being continuously refined by fire, all of us. Sophie, I hope and pray, will grow to recognize the incredible strength in herself as she has endured some of the worst parts of life at a young age and is an extremely happy spunky kid despite of it. He has been chiseling away at mine and Craig's character as well. Thank you Lord.
Yesterday was another one of the surgery hurdles, the first dressing change. I was going to take pictures but it was a little tough for me to process, assist with changing dressings, comfort Sophie and there was nothing left of me to take pics. I don't think I was ready to anyways. I find that with each surgery there is a little shock at the realization that we never get as much as I want because I want to get it all! That she now has giant thick incisions in place of mole. It all seems so obvious but you still get that bottom dropping out of your stomach feeling at first glance. Yesterday I think bandage change was as hard for me as it was for Sophie. I waited till I put her down for a nap and then I had myself a good cry. I knew that it wasn't just in my head when Craig went up to the medical supply place to get an alternative product and the woman who has been helping us for years came and begged Craig to bring the girls in soon and even remembered Gracie's name. Then the man who had filled today's order came running over and said "When I saw the calculated length of the incisions on your little two year old's body, which is how we determine the quantity of supplies to give, I was shocked. Bless your little girls heart" I guess it really is a lot for such a little peanut. I think it would be a lot for some of you to handle so I will spare you. I am praying that she heals quickly and that the Dr will pull the drains on Monday so that we can get back to normal living. She is moving gingerly but we have been going without codeine for almost 24 hrs now so hopefully we are progressing right along.
Each part of this surgery has been tangibly covered in prayer, we are definitely feeling it so thank you thank you so so much. We have received such a wide range of love; hospital visits, meals, gifts for the kids, video love, I could go on and on and on! Thank you. You always have a way of making such a difficult week so much easier. I am filled with gratitude.
Here is a couple of pics of my brave girl sitting so still at the beginning of her bandage change. Some things are so much easier for her now that she can talk both at the hospital and here she is always careful to ask "Is this going to owwie me?" I felt bad because I knew this was so I just answered honestly that we were going to try really hard not to. We didn't quite succeed when we got to the leg the tape was the worst part and she was so SO brave. There were tears but there was candy corn in my pocket. There was an instinct to flee but there were Grandma's hands to hold on to tightly. There was a new nurse in our house inflicting pain on her but she was covered in beautiful sparkly jewelry that had her intrigued. The final surgical hurdle is getting the drains out (praying for Monday!!!) and it is all smooth sailing and healing from there. Again thank you so incredibly much for all your prayers. I felt like we spent the last 4 days lying at the alter of grace and peace and God has mercifully lavished it upon us!!! Thanks!
Sunday, October 9, 2011
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".
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!!
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
Amanda and Craig - Parents of two beautiful girls Grace and Sophia. Craig is a teacher and Amanda is a physical therapist. Both of us are learning everyday by the enormous lessons of parenting that the Lord presents us with.
