She is a Person

Have you met my daughter? I have 3 kids, but today I'd like to tell you about "Bug". She is turning 8, going on 18 =) She is beautiful, intelligent, compassionate, sensitive, strong... and I could go on!  She is going into grade 3 and is a very strong reader who also loves to write. She writes stories and has a few pen-pals -- yes the old fashioned kind, she loves it!  She gets her feelings hurt by friends, like all girls her age but cares for those who need a friend and will always be there when her friends come back to her. She loves her little brother and gets annoyed by her little sister. She likes helping and earning money. She wants to be a teacher or a doctor or a Teacher OF Doctors when she grows up!!! She is smart and determined! She hates running and sports mostly but loves gymnastics and is always willing to help me with almost anything. She wants to learn how to sew because that is what I do. Have I mentioned she is beautiful????

Oh ya, and, she has a Nevus.... It really has no impact on her life AT ALL except for when IT gets hurt or during 1 week every 2 years. We just got home from the Biennial  Nevus Outreach conference in Dallas, Texas!!!! We learned about the progress in RESEARCH which YOU can help FUND if you desire (see website in link) and, and, and....... there are NO WORDS for what these conferences are/do! We met new families and gave them hope, we learned from scientists, doctors, surgeons and more experienced families to give US hope..... We laughed. We cried. We hugged. We learned. We taught. We connected. We hugged. We learned. We cried. We. Will. Go. Back. We must. This was the first year where Bug was very overwhelmed by all the focus on her 'spots' because at home, she is normal. At home there is little talk and no focus on the rare 'disease' our amazing daughter has.... because all the focus is on the amazing person she is becoming. completely unrelated to her spots.  And when she got overwhelmed and started getting angry and crying and saying she would never go back (GASP!), what did we, her parents do? Well, she has heard it all from me before and doesn't want to hear it again.... so I tracked down one of the 105 other nevus owners in our midst! At one point an amazing Adult and later, a very understanding Teen to sit and talk with HER. Not with me. I left the room. Yep. I love and trust these people with one of the most precious things in my world, because she is part of their world and frankly, I'm not. I love her to pieces and I have learned as much as I can from doctors and others in 8 years, but I will NEVER know what it feels like to BE her. I am SO THANKFUL that we found Nevus Outreach and are able to go to these conference and be connected with other people who know what it is like and can help her understand herself.

So next time you see us out and about... ask Bug about her latest story.... or how many chapter books she has read so far this summer break. Afterall, she is a person. A kid, like yours.... with a little extra beauty ;-)

The Pre-Op Post

Well, there is a LOT on my mind this week. Our Goober turned 4 on Monday which meant 2 parties to plan. We have a 2nd birthday party to go to tonight that I am still making the gifts for and then I have to pack for the hospital. The hospital. Okay, if you've been following along, the Bug is having surgery on her Nevus TOMORROW!!! YIKES! Yes, this is planned surgery but it's still scary. I've been thinking for 3 days what I wanted to say here and so many things came to me. Is my faith strong enough? Can I truly believe without any doubt that God loves us and will protect our baby? Yes. And no. Not that I don't believe it, but unfortunately, I'm still human and humans worry. Humans have a hard time trusting totally something they can't see or touch. I love God. I know He is there. But I have to trust the surgeon. Because we are Christians, does that mean that none of the possible complications will arise? Nope. God sometimes allows things to go wrong. We won't always know why, but he does. I just have to trust that HE 'has our backs' as it were. He gave this amazing young lady to us that just happens to have a REALLY big birthmark that just happens to have some issues in it. But we can handle it. Right? I have asked for prayers at the Bugs school (it's a christian private school), I have asked for prayers at church. I have to trust that enough people will pray and that God will listen and that all will be well. And that if all is not well, more people will pray and God will grant us the peace and strength to deal with that too. Oy. If anything goes wrong I'm not sure I could live with myself for convincing my little Bug that she should do this in the first place.

Now for the surgery details. Her surgery is taking place in a Children's Hospital. With nurses who treat her like she knows what is going on but try to make things as non-scary as possible. I don't know what time yet. I call later today to find that out. When we know the time of surgery all the rest of this stuff will make more sense. She will have to stop eating at midnight tonight. We figure on letting her stay up late so she can have a late snack. She can then have clear fluids up until 4 hours before surgery. Which might mean apple juice for breakfast =) We have to be at the hospital 2 hours before the surgery time. She needs a bath ahead of time and I'm supposed to take her through a video tour on the website but have not had time to sit still the last few weeks! The OR is booked for 2.5 hours for her.... so they are expecting to take a while. They have said it is planned for her to be in hospital 24hours after surgery and a parent can stay overnight with her. Umm, right, and if it weren't allowed I would anyway!
Okay, I think I'm starting to make less sense. Feel free to ask questions.... =)

And So It Begins

When our first born arrived on earth (not so cooperatively) she looked a bit... different than we were expecting. She had a large birthmark covering her entire back and a bunch of 'spots' everywhere else. We loved her just the way God made her and thanked Him for her. When faced with the option that many Nevus families take to have surgery for removal of giant birthmarks we thought, God made her this way, we will leave her that way unless something goes wrong and if she wants to remove it when she's old enough to decide to, we will support that too. At 6 months old a little lump appeared in her giant Nevus. It was biopsied, found to be benign and left alone until it grew too big to hide and was removed at 15 months old. That was 5 years ago. She has been fine and has made friends with her rare condition. 3 months ago she came home from school with a blood soaked shirt. Her skin had just ripped on it's own after she bumped gently into a doorway. No biggie, got it checked by the ped. derm. and went on with life. Last week it happened again. She fell off something in gym and another tear, more blood. When we had our regular derm. checkup she found a spot that concerned her.... probably scar tissue from the first injury but also looks a bit like Melanoma so a biopsy was ordered. Met with the plastic surgeon today to discuss the biopsy. We also discussed placing a skin expander in the front of the left shoulder, of which the back of is the area tearing. The surgeon agreed to do the biopsy and place the expander. So the family that said it would never get on the expander and removal train appears to be on it now. And the Bug is not the least bit scared! She is excited that it will mean taking away the area that keeps bleeding. It will be a long process. it may at times be a painful process. She may have moments that scare her. And there is the risk of things going wrong. It may get infected. It may rip through her skin causing a big mess and stopping the process. It may go perfectly smoothly and result in better than expected results. Our prayers are for her best interest and a smooth process. And we are so thankful to our friends that feel like family over at www.nevus.org that we can turn to for support during the whole process.