Friday, October 17, 2014

Avacakes "Life List"


What is a "life list"?  Well it is a bucket list for a mom who can't stand the title of bucket list anymore.  You see over the years we have always made a bucket list for each holiday or season and we would do this together taking turns in a circle to make sure that everyone was heard.  I would put initials by each addition so that we could try to do as many special things as possible.  They would be as simple as baking cookies or as complex as camping (something we have yet to get all the supplies for to do and yet each summer that wish comes up!  I am glad that our children have faith in us that someday we will accomplish that experience!!!  

So when Avagrace's nurses and doctors started talking about "last chapter" and "nothing more that we could do from here" she, by her own initiative got her magna doodle and started writing and drawing pictures of things she wants to do.  One of the items is particularly big and will be sent through to make a wish. Then there are some she has accomplished!!  Meet Kevin Durant and Russel Westbrook and watch the NBA Thunder play.  These were all HUGE in my mind.  And yet on one occasion Kevin Durant walked right up behind us and stopped to say hello and take a picture!  


Then we had the awesome miracle of having the NBA Thunder come to our new post-house fire school dostrict AND being referred for the court side ANDICAP SEATS!  You see with all tog the flashing lights at a traditional thunder game a pre-season scrimmage was really our only option and prayer was the only thing that got us to this game and to meet KD!  Then, when the game was done something even more miraculous happened, Russell Westbrook came over and said "hi Avagrace how are you doing?, then he said "hey Big Bro" and gave Aidan (who was sitting two rows higher and to the right) a bracelet and a hand shake!   So what is next and what seems impossible at this point?  

Her biggest wish aside from her top secret Make A Wish "wish", is that Avagrace wants to go to Disneyland California for Epilepsy Awareness Day with the #Shaytards.  She wants to meet the kids and hang out with princesstard, She also wants to meet the mom of Chelsea Hutchinson, and other people that we have only known and loved on the inter web in regards to epilepsy!  But she wants to be able to go with the Shaytards whom have nothing to do with Epilepsy Awareness and everything to do with her favorite VLOGGING family aside from ours.  She wants to be able to go to the park with them, blog to raise awareness, go to the beach with them afterwards where they have filmed soany times before.  She wants to meet their whole family and go to their favorite Italian restaurant that sings.  Our family loves this family and we would all enjoy some time in fellowship with them!  A true Shaytards style tour to raise awareness!  But it doesn't stop there...Avagrace is full of wishes and sh wants to meet aunt Carlee and Aunt Kaylee, she wants to vlog to raise awareness.  

Miss Avacake also wants to meet another family that we love.  We have met them before, many years ago but over the years and seizures she has forgotten , so she wants to meet them again and actually live a day in the life of ....   We are going to focus on what we can do and also one big dream at a time and right now, this time sensitive dream is our focus :-)

I never thought the Thunder dreams would be marked off her list!  And yet they came in a three part fashion!  God surely knows how to love and encourage us and our kids in ways we never thought possible!!!

She has simple goals too, like go to the zoo and get to see everything in one day without seizures sending her home, putting a puzzle together with Grammy, eating cheesecake with Aunt Steffie, having her cousins over to our house when it is all done being fixed, among others.  

Do you want to know  some other things on her Life List?  Well stay tuned to find out!!


Tuesday, August 26, 2014

A Bedtime Story to My Chillies/Children/Swanlings :-)

http://www.gofundme.com/Avacake

Once upon a time there were five young swans.  They lived together with their parents in a land far from the rest of their family.  This was sad for them because they had a lot of cousins, aunts, uncles, and grand parents that loved them so very much.  These little cygnets, that is the official name of young swans, even had a great-great grandmother.  You see, swans live together in forever families that never separate or move away.  Yet, this family was special.  Their father flew in the royal swan force and that is why they moved so very far away, and this made their father and the entire family very proud to serve the others of their land.

During their time in Okla-nest-a the five little swans grew in stature, wisdom, and grace as they were given many trials that most swans did not experience even once throughout their entire life, and yet these five small swans were living through tremendous trial after tremendous trial.  They also always new that there was another trial waiting just beyond the rivers bend.

To give you an idea these sweet birds went through a nest fire where they lost everything even their first feather print.  They also were in a flying accident.  You see these Geese were not paying attention and crashed right into their behinds!  Then two out of three of their grandmothers died.  And if that wasn't enough there were many more struggles that they had to navigate through in just a few short months.

However, the greatest of these storms was watching their oldest sister and second to oldest sibling struggle through a condition that made her body do things that she did not have any control over.  Sometimes she would just stop and stare, sometimes she would shake, and other times she would just be too tired to leave the nest for lessons or play.  Mama swan stayed with her during the others lessons so that she could learn as much as possible, but everyone hoped that a miracle would happen so that biggest sister would be able to do what everyone else can do without having to work so hard to accomplish it.

If you asked biggest sister what the biggest challenge would she would say that there was not enough time in the day to give everyone enough love.  You see, she did not see her challenge as troublesome or sad.  She saw it as a reason to work harder, dream bigger, and show love to everyone that she met.

One day biggest sister had to have a surgery.  Mama took her to the hospital to meet the avian veterinarian.  It was there that they made a plan to try to fix some of biggest sisters challenges.  When biggest sister came home from the hospital she seemed to be the same brave girl, but there were nurses with her.  They talked to the family and made a plan to include nurses in the care of biggest sister.  They also shared somethings that were scary to big brother and the littles.  They said that biggest sister might fly to heaven before the next Christmas.  Everyone was silent for a few minutes.  Then middle cygnet and second girl of the family said, "Christmas is because of Jesus and only Jesus can say when someone fly's to heaven."  A big sigh of relief filled the room as all took in the power of what such a young swan said.  "You are absolutely correct" said mama.

One would think that this would be enough of a challenge to handle.  But those cygnets were tried, tested, stretched, and bent.  And through it all they knew that it was not by accident that so many "accidents" and catastrophe's were happening.  Nope, they were happening so that the Seven Swans could grow in faith and stick even closer together than ever before!  The 7 swans would always be known as 7.  Uniquely individual and yet together as one.  No matter what life threw at them and no matter who went to heaven first... because they would all meet there someday, and God put them together for a mighty reason.  Even if the reasons were yet unknown to them, There is no accident in life.  Only divine lessons meant to fulfill our creators purpose in us.

http://www.gofundme.com/Avacake

Saturday, June 21, 2014

Trying ...

A Car is an investment.  It takes you where you need to go.  It protects you on your journey.  It houses years of memories, of both places been and songs sung.  Babies facing rear, and children now without a car seat.  Moving across country, and traveling back to visit.  Carrying a baby home for the very first time and trusting that this precious bundle will be safe.  Driving to doctors all over the country to bring hope, healing, or just some help to one special unique and wonderfully made (now) 10 year old.

A Car is money flushed down the toilet.  Our insurance claims that our fully paid off investment is worth not even half of the selling price of the same make, model, year, mileage on the market.  Our insurance of course does not cover what we have spent on said car like they would a house and it does not even cover the amount of insurance we have paid over the lifetime of our car!

And yet, we are in a rental van that does not even fit our family, I do not think anything other than a Toyota Sienna would, but perhaps I am bias and there are others out there that would fit four full sized car seats and a wheelchair?  And the rental has expired.  We need to somehow buy a new vehicle before our insurance has even settled on a price that they will pay us.  But still we must press on and either A. Go in to debt which we firmly believe we should not do or B. start paying for the rental out of pocket until the insurance settles.

Fortunately, we have decided to get a lawyer involved and she is very kind, working very hard for us, and also went above and beyond to help us look for a vehicle.

We have an appointment in the morning to look at a used Honda Odyssey that is an o6 I believe, and I am thankful for her kindness and hard work.  It is so difficult to find a vehicle that has 8 full seats and has room for a wheelchair.  So many vehicles have 'jump seats' or about 2 inches of leg room for the back row.  And not enough trunk space for a folded down wheelchair, oxygen, and groceries when we have to go grocery shopping when Brendan is at work or deployed and all five kids are with me.  *You should see my packing skills!  But you will also know why I am (as much as possible) an Amazon grocery shopper :-)

You know, with the house fire, we at least know that our home will be put back together in a similar fashion.  But our van is gone.  Our first car that we owned together.  The first vehicle for most of my babies.  The first new car that we ever owned (and likely the last unless we can pay for one in cash someday).  And I am so sad.  Some may think that it is so silly but we were Toyota Strong!  We loved our van.  The "SS Sterling" was his name and he took us on a wonderful journey for nearly a decade. I cannot believe how much I miss a hunk of metal with wheels, but I do.  Toyota, you did our family good, if only insurance would see the value in someones car when someone else carelessly destroys it.  And just in case you missed my last post.  I am extremely beyond words thankful for the safety that GOD and this van provided for us.  I know that it was God alone.  Yet I also believe and know that God lead us to that van and that company and I am very thankful for the workmanship that went into our van to keep us safe!
Our "S.S. Sterling" :-/



Here you can see that the door could not even open because the back had been pushed out to permanently stop the exit of Avagrace.  Thank GOD that she did not seize and her special car seat (that I actually did not appreciate enough) did its job better than I ever could have expected!

This is the most horrifying picture to me.  My sweet little girls (ages 6 and 7 at the time of the accident were sitting here.  Less than one hand length away from their sweet heads was the trunk and a very sharp metal casing that kept the frame of the door and window in place.  They were covered in glass but saved from what could have been so much worse.  





Saturday, June 7, 2014

One Might Think...

One might think that a child on Hospice is enough to deal with, one might think that a house fire is more than enough for that same family to deal with, but it doesn't stop there.  Yes, we lost our birds in the fire, and yes we saved our dogs only to loose our beloved Felicity to breast cancer a few weeks later.  Then after living in a wonderful hotel for a little over two months we moved into our rental house.  The following day Brendan was driving me to the airport so that I could fly home to be with my family for a few days and restock some of the items we lost.  (After all we are a military family half a country away from everyone).  But that trip was not meant to be that day because in the middle of rush hour traffic we were brought to a rather sudden stop safely with a car and a half length in front of us only to be hit from behind by a 19 year old who was on her cell phone and not paying attention to the road.  It was a terrible learning experience for her and a traumatic event that still causes our kids to cry in the car, have nightmares, fear sleep, and have headaches and other aches and pains that they did not have prior to their concussions, whiplash, bruises, contusions, and scrapes.

However, our entire back window was smashed into hundreds if not thousands of pieces and our two littlest girls were covered with glass and yet they did not have any scratches from the glass.  Also, the back of the van was bent in so far that it was less than one of my hand lengths from the back of their necks, and they are still alive!

Gods mercies are new each day!!

And yet we are now faced with yet another crisis.  Not only did we go through that very traumatic experience but we have also lost our completely paid off van that fit everyone in our family perfectly and safely and although it was not a wheelchair van, Avagrace's wheelchair fit when it was folded up in the trunk of the van.

So what is this insurance offering?  Some ridiculously low value.  Even when looking on Carmax at vehicles that had the same mileage and status of our car meaning "good/average/new etc" the cars are priced at least 3-5k above what the insurance is offering us.

It is evident with the many misdiagnosis and botched medical events that we are not a family that believes in suing, however, the need for a lawyer to at lest speak legalize and be in our corner as we navigate this very traumatic accident.

It was my hope that my children would never experience an accident in their life.  And this was not just a simple fender bender.  I praise God for his mercies and his love that surrounded us then and surrounds us now and I pray that his provisions will come through because debt is not something that we believe in either.  I know that sometimes (especially with medical bills there is no choice) and to have a working and safe vehicle to transport our family also is something we cannot live without, but please pray along with us that God will show up in a big way and we can manage this in a way that is pleasing and honoring to him!

Thank you for your love and prayers, my torn AC muscle (in my shoulder), Violets concussion headaches, and the swelling in Aidan's neck are the three most pressing accident related prayer requests.  (And that insurance will get their act together and replace Avagrace's special needs carseat. :-)