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 =)