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
