Empty Goodbye

That moment will live in my mind forever.
The funeral was…. nice. Not really, sad, lots of memories. During the service I would look at the front table with the beautiful flowers, the photograph of Mom and the unique Jar Urn handmade by me and my kids. But I didn’t cry. I wasn’t sad. I wasn’t happy, but I wasn’t sad. I had been feeling ‘empty’ since I heard she passed.  Not that I didn’t want to be sad, but grief is a funny thing, you never know what you are going to feel when, and you never know when a flood of tears or a case of the giggles will suddenly hit you.
So it came to the end of the funeral service and I had been prepped by the funeral director on how to be the Urn Bearer and what to do when they waved me up. I stood, walked to the front table, was handed the Urn. I looked deeply for a few seconds at the photo of my Mom. Trying to remember the good and think something nice. I took a deep breath, turned to the congregation and with my 3 children holding my hand or arm walked slowly near the front of the procession, carrying all that was left of my Mother. About half way up the aisle, I suddenly, finally felt a little sad! For like a split second I got that rush to your head like you get before you cry… ‘’choked up” I think they call it. But I didn’t cry.  I’m not sure I really have had a ‘good cry’ over mom this year. When she got really sick and stopped being able to communicate, stopped ‘being her’, about 2 years ago, I cried. I grieved, I yelled at God, but now, well, the essence of Mom has been gone for a while, it’s just that her body is finally gone. And that’s weird, not sad.

As I look back on that day, on that MOMENT, I am getting choked up. I guess she will always be my Mom and I will forever get choked up a bit once in a while when I think about that day. Or the few great memories of us doing things together as a kid. Or the fact that her grandkids will never know what she used to be like, they only ever knew the ‘altered’ her and then the non-communicative her.  The “what could have been” makes me sad.

For those who don’t know me, or my history, my Dad died 11 days before I turned 2, so I don’t have any memories of him. My Mom saved cards they wrote to each other, I have their wedding rings, the name patches off his work uniforms a few little things… so I’m going to get one of those big fancy boxes and stick ‘my parents’ in there… all the things mom saved that Dean (step Dad) is finding as he sorts through Mom’s cluttered boxes in the stuffed-full basement. All the things Mom had given me in the past. All the sympathy cards and comforting notes from friends surrounding the death and funeral. All the legal documents. Then, when I’m missing them, or when the kids ask, or when I want to feel sad, I can pull out my box. If only we could put all the things that make us sad in a box.

Whose Choice is it?

My oldest daughter has a rare skin condition called GCN or CMN, most of you know this and there is info elsewhere on the blog if you want info on that specifically. We are in a Network, mostly through Facebook, where we can gain support and share information regarding this condition, and we are able to gather physically every 2 years with other families affected by GCN/CMN for information and support. A little over a month ago, while we were in the hospital having expanders placed and an infection treated by IV, there was apparently a big uproar in one of the Facebook groups about the ever daunting question: TO REMOVE OR NOT TO REMOVE. I did not see the 'explosion' on the 'big group', I only saw it mentioned in the 'small group' and I believe it was so negative that it was removed before I could read it on the 'big group'. Anyway, just the thought of it upsets me, because we chose NOT to REMOVE! When our daughter was a baby we made the choice to NOT REMOVE her giant birthmark from her back. We were very happy with our decision but still respectful of the people who chose to remove. It seems some people are unable to see that there are 2 CHOICES when it comes to CMN/GCN and that EITHER choice is the RIGHT ONE!!! When our daughter was 6 years old she started injuring a small area of her Nevus on a regular basis and the decision was made to do a small surgical expansion round to remove just that small area. I still did not think of us a 'removal' family. This summer we went to another conference/reunion where many of my daughter's mentors do not have their nevus removed and enjoyed our time immensely. About a month after the conference and her 8th birthday, my daughter decided she wanted to remove a bit more of the nevus. HER CHOICE! An appt. with the plastic surgeon was made and we began planning. A couple months later she decided she wanted to remove as much as possible by having more expanders placed at the same time. HER CHOICE! At 8 years old, this young lady has expereinced more in her lifetime than many adults. She understands more medical jargon than some first year med school students and makes choices that would have CEO's shaking in their loafers. In 20 years will she be happy with the choices SHE MADE when she was 8? I hope so.
MY CHOICE was to leave her birthmark alone.... HER CHOICE is to remove it. I don't care which of us is right!! I want my child to be a happy grown-up and if she thinks that removing her birthmark in childhood will help her adulthood be happier then I support her. 100%. No doubt. Not my choice. I have raised her and educated her as best I can. Prepared her to make choices that she believes in and support her to the depths of the sea every moment that she doubts her choice. She is, after all, only 8 years old. There are a couple adults in our 'network' who's PARENTS CHOSE 'leave alone' and then when the Nevus OWNER grew up, they CHOSE REMOVAL. Yes, removing would have been easier when she was a baby/toddler. But those adults who did removal in their 30's are thinking it would have been easier when they were 8 (I think anyway). I pray my daughter doesn't regret her choice 20 years from now.... but I have peace in the fact that is was HER CHOICE, not mine.
***This is just MY OPINION, please don't misconstrue this as being the opinion of all Nevus affected families.  These are MY THOUGHTS and not meant to convince or offend anyone!

Mountains, Valleys and New Trails

If you will allow me, I'd like to speak metaphorically for a few minutes.... I'll try to clarify the metaphor, but if at any point you don't understand, please feel free to ask =)
As you read on my last post, we just rose to a mountain top last week! We are still basking somewhat in the amazing view of our oldest daughter no longer having an anaphylactic food allergy, or any at all now! Praise The LORD!!!!
We are also acutely aware of families around us and in our community who are walking in very dark Valley's right now. There are 2 families with very young boys that have been in the dark valley of fighting cancer for 2 years... both of these young boys have come very close to losing their battle but are somehow still fighting in their weakness.... if you feel so led you can pray for Christian and Jayden (friends, not brothers) to have miraculous healing and for their families to have renewed strength and comfort.  And yesterday a family (Wife/Mom and 5 kids ages 7-14) at the (small, private, Christian) school my daughters attend was plunged into a very deep very dark valley when their Dad was unable to survive his injuries after being broadsided on a nearby highway. My heart aches!!! There is of course all the other people in dark valley's right now, that are on the news, such as the families of Sandy Hook Elementary in Connecticut.
It is easy for our small victory to get lost in onslaught of darkness.

And now, we, as a family, are looking to start on a new hiking trail. We have hiked in this park before (the first round of expansion surgery 2 years ago) but not on THIS trail.... and we do not have a trail map, and we can not see which way this trail goes, after the first bend in the trees.  We know a bit of what the beginning of the trail will be like, as many of the trails in this park seem to start this way, it will be rocky with a short steep incline and after that you turn a corner and I don't know whether the path will lead up toward the mountain or down toward the valley. So we pray. And we ask you to pray. Pray that God will lead us toward the mountain! That there will be no complications, that recovery will be smooth and easy. But there are no guarantees.  We may start heading up the mountain, only to choose the wrong fork in the path and start a rapid descent into the valley... we have seen this happen to many families in our support group. But we can not focus on the possibility of the Valley, we need to keep our eyes on the top of the Mountain and our thoughts on the possibility of an amazing view from the top.
I will write more very soon regarding the surgery and our upcoming journey and I hope you will continue to follow us on this journey and as we follow and support those around us on their journey's, whether it is in the valley or on the mountain.

Answered Prayer

I've decided that this should maybe be called "Bug's Blog" because most of my posting is about her.... but I try to put the rest of us in here, honest! For those of you not super familiar with our family, Bug is my oldest (of 3kids) daughter, 8.5 years old to be exact. Bug has some special things about her that require extra care. Don't get me wrong, she is one of the smartest, prettiest, most caring people I know, she is just 'special' too =)

When Bug was 5 or 6 years old, she prayed, as we are a 'believing' family, and asked God to take away her food allergies (at that time moderate Eggs and Severe Anaphylaxis Dairy) so that she could enjoy her friends birthday parties, eat beside friends at school and participate in school ice cream parties (which seem the most popular way to reward students, at least at her school).  We, as adults, knew this may not bring any change but prayed with her.

2 years later she had her blood retested for the first time in 6 years (had skin prick testing annually) and, even though her skin test was still highly reactive to the dairy protein, her blood/immune response had dropped significantly!! Her allergist had always told us that it is possible to outgrow this allergy and that it would likely happen around 7 or 8 years old and this test was only a few months before her 8th birthday. Now, our allergist was not comfortable doing a food Challenge in his office with her skin prick being so reactive but referred us to an Allergy and Immunology Specialist at the Alberta Children's Hospital who does food challenges. He said her low blood response was a good sign she may have outgrown the allergy. We got the call for the referral and booked the next appointment, 7 months away. Yup. That's how it works in Canada.... Our government may 'sponsor' our healthcare, but it means limited access, especially to specialists, and WAITING, often long periods of time, to get the 'free' (that we pay for in our taxes anyway) care we need.... I digress. That intake appointment took place at the beginning of December, 2012. We met with the doctor, who was very nice, very encouraging and very informative. She told me to start putting dairy in baking and they would call us with a date to come into the hospital and do a Food Challenge, where we bring actual cow's milk and they feed it to our (previously highly allergic) daughter on purpose!  Now, if you've ever dealt with an allergy, food restriction or even diet for yourself or a loved one, you might have a tiny understanding of the complete flip my brain has to do.... the very thing that I have protected my sweet baby from since I realized (when she was 7 months old) I needed to, I am going to force her to eat.... that doesn't make sense! Who in their right mind force feeds someone the very thing you have always believed, and had evidence that, would kill them????

 So 2 days ago I purchased a small jug of 2% chocolate milk and yesterday I packed it along as I took my baby to the hospital. WEIRD. There is seriously no other way to describe what this feeling is... yes, we are happy, but this is so foreign to us! I don't think I really need to describe how the test goes, but they do it in small, timed amounts (waiting between and watching for reactions), then a large dose, wait an hour and then go home (if no reactions have occurred). That's it. That's IT. Now, it's common for my daughter to over think and to WORRY... a lot for a kid her age.... so I brought a new game for her Nintendo DSlite so she would have a distraction, something to focus her mind on instead of thinking about the INSANE thing we were about to do... and it WORKED. She drank the milk and had no reaction!!!! The way I put it to my facebook friends yesterday was that "the food challenge was so nondescript that it is surreal". I'm not sure what I was expecting, but 'nothing' was not it! So, as we left the hospital, in a daze of "that was weird", the doctor told us to do a measured test with the milk at home again today.... which we did, and if that went fine too, we could "let her loose".... she needs to continue carrying her epi-pen for 6 more months but can eat whatever is in front of her from now on. WEIRD! And we actually have to make sure she is eating dairy on a very regular basis so that her body doesn't 'forget' and revert. WEIRD!

Weird, weird, weird, weird, WEIRD!

I can stop reading labels on foods when grocery shopping. I no longer have to show each parent whose home she visits how to use an epi-pen. I didn't have to tell the venue for her sisters birthday party next week that we have an anaphylactic allergy coming (on the confirmation it asked allergies or health concerns, it's a sports facility). When she has surgery next week (that's a WHOLE 'NOTHER post) we don't have to request the egg and dairy free meal option (which are REALLY boring when you consider what hospital food is already like...) for her to eat for 4 days. I can start looking for easy, quick dinner recipes -- that all the kids might eat.  I have to completely UNdo all the training I've done for the past 4 years at her school, enforcing the severity of her restrictions with staff.  She will not take her little cupcake container to the next friends party she gets invited to, and for the first time EVER she will taste the store-bought cake and creamy frosting served there. She will not be limited to licorice and lollipops when sorting her Halloween candy this year. She can steal mommy's Cadbury Mini Eggs at Easter. She can BE AT the ice cream party her school throws for the strongest readers after the spring Read-A-Thon, and not just BE THERE, but also EAT THE ICE CREAM!  She can order the Booster Juice or food items on the school special lunch days. She... I... uh... I'm at a loss! It actually BLOWS MY MIND!!! I have always had to think one way with cooking and with her eating and now I have to think the exact OPPOSITE way! I reckon it would be something like moving to England and driving on the opposite side of the road... WEIRD! At least, for a while....

On another note, The Boy, who has been eating Gluten Free for almost 3 years, was challenged over Christmas (by us as it was an intolerance, not an allergy) and seems fine eating Gluten now too. So, as far as the kids are concerned, I can cook ANYTHING. ANYTHING!!! No skipping past all the recipes on the Kraft website that have cheese in the photo. The Hubby is still Gluten Free, but he's a lot easier to work around. We can eat at restaurants and not tell the server that she has a severe allergy, not order the noodles without the sauce, not ask the chef if the breading on the chicken fingers has whey powder in it.

I think more than half of what I've said here is more an effort to convince myself than it is to explain anything to you... but I needed to say it. Perhaps if I read it, it will make more sense to me?

We still have to be aware and watch for reactions and such, but at the very least she is far less allergic and can have dairy products and exposure unlike ever before.... WEIRD!

Not "Just a Birthmark"

While I am sure I have met the Coleman family at a previous Nevus Outreach Conference, I can't recall an introduction to my mind, however, their story grips my heart in a way few things ever have.  It's not an ache, it's a tight squeeze that will not let go until a tear rolls down my cheek and/or I have prayed long enough for God to release the grip and allow me to breathe again.

 I have learned from this family to never say "it's just a birthmark" again.

This boy has the same skin condition as my daughter. When this boy was the age my daughter will be turning in a few days, his nevus was diagnosed as having Melanoma. His nevus, to the best of my knowledge, was similar in placement, size and color to that of my daughter. They tried removing it. Almost 5 years ago. And each time they did, the results came back: "the margin is not clear". So they would remove more.  As far as I understand anyway. And this boy has been seen by the best cancer research centers in the United States. And this boy has had every kind of cancer treatment, both traditional and experimental that his family and doctors can find. And this boy is now considered incurable by all his doctors. And his family has met with the funeral home planners. As he sits and looks out his window at all the community members helping to complete the garden in his family's backyard so that he will have a peaceful place to sit in his final days and that his family may have a peaceful place to go to remember the best times and be at peace, once he is gone. This boy has amazing insight for a boy of only 13 years.
 His name is Evan.
 And we are praying for him, and for his family.
If you would like to follow Evan's story, read the history or pray along with us, please visit the blog his dad, Paul, writes here.

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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 ;-)

Seeing Spots

Let me preempt this by saying I am SO SORRY for not updating you on how the surgery went and I PROMISE to write a (likely rather long) post about that VERY SOON. However, today I have a different thought to share with you.
We were walking through a store yesterday and I heard a MOM say to her daughter "I like all her dalmatian spots" The daughter didn't understand and made some kind of comment (I didn't really hear) and the mom said again (with a smile and in a very kind tone, though not to us as it was a simple passing in a store aisle) "no see her dalmatian spots they are so pretty" and then we kept walking and took our crew up the escalator. I mentioned this overheard conversation to my hubby who was walking ahead of me (I was going toddler speed) and hadn't heard it. The Bug didn't know whether it was nice or mean but I told her that was probably one of the nicest ways anyone has ever reacted to her. We are so used to hearing the child ask the parent "mom, what's on her?" and the mom brushing it off, it was refreshing to have a parent think Bug was beautiful without even approaching. Happy sigh =)

An End in Sight

Okay, so surgery is scheduled for May 19,2011. And emotionally, the Bug is DONE. She feels like she has no friends because she can not physically do the activities (monkey bars and balance beams) that they are all doing during recess.  One friend chose not to invite Bug to her birthday party this weekend which made her feel even more like an outcast. As an adult, I know that she will be fine. Her friends still like her.... but they are 6 and at 6 (or 7) it is hard to feel empathy for a classmate. It's not easy to explain this to a 6 year old. 

She had a saline fill 4 days ago.... and we had to wait for an hour in the room (our doc was on call so got busy). She did great playing and waiting for about 40 minutes. We had to wait an hour. By the time the doc came in she had been melting down for 20 minutes. Screaming that she was going home! Not having a fill! Broke my heart =( Good thing we brought daddy... he sat up on the table and she laid on his lap so the doc could insert another 19cc (ml) of fluid. I started a list to see where we are at... my amazing 6 year old has 224 cc of fluid in her tiny little shoulder. That's actually alot. And we noticed a couple weeks ago that the expander has turned. Weird, right? It is a rectangle, with rounded corners and it was longest from her neck to her shoulder and then it turned so the long part points from her chest to the top of her shoulder, diagonally.  I think it was her body's way of still allowing natural movement of her arm.
So, we go for one more fill this week and then is surgery. We'll see how many melt-downs we get between now and then... in the meantime, here is a pic of this last fill (oh, and she's had a haircut too...)  =)

Fill Update and some Pictures!

Okay, I try at this, I really do, but with so much going on with 3 kids sometimes my updates are sparse and thus, long. Sorry about that.
I made a mistake on my last post, I asked the surgeon again and when the tissue expander was placed in Bug's shoulder they filled it with 60cc (same as ml) of fluid. At her first 'fill' he added 30cc of fluid. At the second 'fill' he added 25cc of fluid (she was better at speaking up to say it was getting to tight so he sucked a bit back out). This brings her 'balloon' to a total of 115cc of fluid. For now. Until Wednesday. We go every 2 weeks for more fluid. This particular tissue expander is a 140ml expander but the surgeon has said he will 'over expand', but I'm not sure how that works, though I trust it will be safe, if he's willing to do it and I have heard that many surgeons in this field do this. We were originally told the expander would be in for 3 months plus but at the rate we are going I'm beginning to wonder. Anyway, here are some pictures of the progress.

This was after the 2nd 'fill', with the expander now at 115ml.



Right after surgery.


PreSurgery, you can see the dark area they were biopsying and that is the same area we hope to remove with the expanded tissue.

Expansion started!

I'm sorry I have been slow getting surgery photos posted. I will do that later today. Today is the first fill of the expander. The insertion surgery went better than planned, done in 1.5 hours instead of the scheduled 2.5! We could really feel your prayers! Bug had some major bruising right on where the expander is immediately after surgery. Most of it faded but almost 3 weeks later there is still some bruising.... I will ask the surgeon about it today.
Today Bug will get some more saline added to her expander. the surgeon put 40ml in to begin with and we will slowly add to that every couple of weeks. I will post surgery pictures and a fill report later today when I'm back from the hospital. And back from getting Goober from school. The busy life a mom of 3 I tell ya!

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.... =)

A New Year....

Well, it's New Years Day. Sure doesn't feel any different. Turned the page on the calendar before going to bed last night. Took down the Christmas Decorations while watching lame NYE music video shows on time delay..... woke up late to sounds of "mooooom, were hungry!". Did anything change? I don't think so.
So, everyone is supposed to make at least one New Years resolution, right? I think this year I'm going to resolve not to make a resolution. How's that grab ya universe??? Huh? I mean, who is actually keeping us accountable to what we say anyways? Ourselves? I can convince myself not to care pretty easily....

I thought of all the things I WISH I could achieve this year.... but I know myself well enough to know right now it ain't gonna happen, so why bother? But, in case you are looking for inspiration on your own resolution, here is my list of things I would resolve to do if I knew for certain they would be accomplished and with little to no extra effort by me:
~not to yell at my kids. ever. (for those of you that have not had the, er, pleasure of meeting me or my kids, this would require the surgical removal of my voicebox)
~to cook a gourmet, healthy, allergy free, kid appealing meal and have it on the dinner table by 5pm 7 days a week. (this would require a small army of personal chefs and a much larger kitchen)
~not to worry about the surgery the Bug is going through for the next 3-6 months. ya. right. I AM a parent afterall.
~to be a better friend. I might actually try to work on that one....
~to watch TV less and sew more
~to get my Snugs website up and running and actually try to prosper at a home business.
~to spend some time ALONE with my HUSBAND.... this would be easier done if we had family or friends to help us, but we are fairly limited in our options =(
~not to complain about the weather or our house. both make me miserable but can't be changed reasonably.
~RELY on GOD MORE and figure things out for MYSELF LESS.

I'm sure that list could be longer, but I've got kids to chase and a house to clean and laundry to do and....
Have good 2011 everyone, whatever it brings. Don't let fear stop you.... you'll regret it later =)

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.

Boys will be boys...

I am getting used to the fact that The Boy who is 19 months old has a constant bruise SOMEWHERE on his body. Usually the face but not always. Tonight is the first time he has split his forehead open though.... blood, yes, purple bruise surrounding said gash, instant, screaming, loud. And 'tis the season for family photos, won't that little piece of white medical tape holding his skin together look festive! Sigh. At least I was home for this one to fix it properly using all the medical supplies left over form the surgeries and Nevus related injuries The Bug has had. Last time a forehead was split open I had to hear it happen on the phone when I was a 4 hour flight way :-(
Life goes on, but this being a Mommy stuff is sometimes so heart wrenching it hurts.

ReArranging

We decided to move Daddy's office out of the main floor den and turn that room into a playroom for the kids. It has been a lot of work and is still in progress but I hope it will help. Gives them somewhere to be that is not to far away (like the basement was) but can stay contained. We are more frustrated with the poor layout of this house every day. Also still waiting to hear back from the prospective employer that talked with the Hubby two weeks ago.... wish they would tell us something... silence is deafening! Feel like the kids and the house have way more control over every day of my life than I do which is depressing. Sigh. I guess this is what I signed up for when I became a mom.... The Boy is sick too, so no Gymboree tomorrow which I think I will miss more than him! And it is just so hard to see your kids sick! Now the Bug and me both have sore throats 'starting' and I really don't want to be sick right now! On a positive note, since the craft room was one of those rearranged, I managed to complete 3 little projects that have been sitting in the drawer today! So many more to do, but it felt good to have a start. Will try to work on more things tomorrow, finding starting with the little jobs (repairs mostly) encouraging but also can't wait to complete a big project and show it off =)

Music for the soul

The radio seems to know what I need to hear lately... in the last month or so all these songs have really touched me, said what I needed to say when I didn't even know I needed to say it.

Dancing In The Minefields
http://www.youtube.com/watch?v=OmWc4BZ8e-U
Faith is Living
http://www.youtube.com/watch?v=s1d6ejJ1ULQ
God Gave Me You
http://www.youtube.com/watch?v=KI2JJ1OCz8U
Here Goes
http://www.youtube.com/watch?v=S97O9395rgc
Lead Me
http://www.youtube.com/watch?v=OAKBXBXz1fo

Maybe one will lift your spirits or say what you need to, too =)
Have a wonderful day!

Overwhelmed

I feel like I have so many things I want to accomplish, and so many things that need doing!
This week we are starting a Life Group which is a small study group of couples who want to build their marriages while building relationships with other couples.
I have a big order of Snugs items for Made By Moms to get made and shipped, a private order form a neighbor who saw my stuff at a yard sale, the craft room to finish organizing in order to make the orders easier to fill. I've also been asked to blog about dealing with food allergies for Made By Moms website. And of course, looking to set up a Snugs website still. Phew!
My girls are busy this week too.... The Bug (oldest) had a Sparks thing the whole family had to go to tonight, and she has Thursday and Friday off school this week, The Goob and The Bug both have the dentist tomorrow and the life group starts tomorrow and the Goob has Gymnastics on Thursday. Poor baby boy gets dragged everywhere!
I know most of this stuff is weekly but somehow this week I feel like there is more to do than there is week to do it in.... but, you eat an elephant one bite at a time so here we go >>>>>>

Back on Track

Pretty sure no one reads this, but here I am. I figure with all I'm trying to figure out with My oldest daughter's GCN and food allergies, the little one doing an elimination diet and looking wheat allergic or gluten intolerant at this point and the one in the middle looking at speech therapy I have stuff to get off my chest. And then there is trying to really root a WAHM business.
If anyone ever needs a baby gift, please let me know... I craft lovely cuddly fleece things perfect for the whole family to snuggle.
The to-do list is LOOOONG this week. And the little sewing projects that are in the Que still sit due to the disorganized craft room. But I'm working on it. And it WILL get done. And everyone will get what they ordered. I promise. So many of the things are for my kids and I hate making them wait, but paying customers have to come first.... it's hard, but I WANT to do this. AND to succeed.
I guess this is it for now..... see you next time!

A late Birthday

Getting organized for the Goober's 6th birthday party tomorrow. Will ice the (cup)cake(s) tomorrow morning. Doing something different, and way easier this year... going to a mini-golf course in the city. Only about a 15-20 min. drive, they have a cooler for the cake but no pre-booking or extra fees to do a party. I just have to pay for each kid playing and if it's busy we have to wait our turn to get started. No set-up/clean-up, no kids invading my house.... and way cheaper than renting the pool or something, makes me feel like a genius. Anyway... I'll post how it goes tomorrow or Friday. Might go camping this weekend to test out the new trailer... not sure we can get a site with it being the long weekend.

Recipes

Okay, so with my oldest goober having major food allergies I've had to seek out yummy treats that have no milk, eggs or butter in them. When I tell people the treats are vegan, they think I'm crazy, but it just means animal free, and when it comes to dessert, we've found some good ones! A few moms have asked for my recipes for their own families, so here it goes:

Wacky Cake (chocolate cake great for Birthdays!)
Preheat oven to 350*. Grease 9x13 pan.

Measure into medium/large bowl:

3 cups Flour

2 cups Sugar

½ cup Cocoa

1 tsp. Baking Soda

1 tsp. Salt

Mix to combine. Make a well in centre and Add:

¾ cup Oil

2 tsp. Vinegar

2 tsp. Vanilla

2 cups Water

Mix well and pour into pan. Bake approximately 35 minutes.

Bake 24 cupcakes (in papers) for 25 minutes.

Banana Quick Bread - Vegan

3 Bananas, mashed

¼ cup Oil

½ cup Brown Sugar, packed

¼ cup Granulated Sugar

1 ½ tsp. Baking Powder

1 tsp. Baking Soda

¼ tsp. Salt

1 cup All Purpose Flour

½ cup Whole Wheat Flour

½ cup Chocolate Chips (optional)

Preheat oven to 370*F.

Mash the bananas well & combine with oil & sugars to cream. Add salt, powder & soda to combine. Stir in each of the flours, mixing until just moistened. Bake in a greased and floured (or parchment lined) loaf pan for 35-40 min. or until toothpick comes out clean. Let rest a few min. before removing from pan to wire rack to cool.

[okay, so this one isn't dessert but it's delicious!]

Vegan Apple Spice Cake

1 1/2 Cups Flour

1 Cup Brown Sugar

1 1/2 tsp. Baking Soda

1/4 tsp. Salt

1 1/2 tsp. Cinnamon

1/2 Cup Oil

1 1/4 Cups Apple Sauce

1/4 Cup Apple Juice (scant)

Mix ingredients and Bake at 375*F for 30 minutes in a greased 8 inch round or square pan.

I hope these help someone out... I know I had a hard time finding some of them (I altered a plain to create the Apple Spice) =)