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. :-)

Thursday, May 8, 2014

Why we were away.

My birthday is March 25th.  This year, my birthday brought a change that we never expected.  We had a house fire that took everything.  Baby pictures and blankets, photos from WW1 and 2.  Toys from my childhood, and my beloved library that I have been so proud of for my children.  I loved our books, and how they had messages written in the covers from whom they came from and when and to whom they were intended for.  My wedding dress, our wedding rings.  While we were able to save some things like costume jewelry, Big Baby for Violet (she has been Violets favorite toy since she was not quite two).  We were able to find a few sweet pieces of furniture, like the doll bed my grandfather made for me when I was in elementary school, and the rocking chair that has been in our family for longer than I know.  But everything else, all of our clothes, all of our memories, even doors and walls are gone.  The shell of our home is in great hands though.  We have fabulous contractors and we know that it will be perfect when it is fixed.

Since March 25th we have been living in a hotel.  In the fire we lost our birds and just after Easter we lost our dachshunds who were taken care of so lovingly by one of our best friends.  Unfortunately Felicity had cancer and because the hotel had a limit of one dog, before we learned the fait of felicity we had given Louie to a new home.  However, we firmly believe that God has everything in control and that everything, good or bad, happens for a reason.  And to be quite honest we find more peace in this fact than the security we felt in our stuff.

We were ever so grateful for our neighbors that came out to hug us, give us water, snacks, chairs to sit in.  Our friends that protected our children from the scene of the fire.  And again, our neighbors who tried to protect our remaining belongings  from the looters that thought they could come into our home and take whatever they wanted inside or outside.

We have learned a most valuable lesson that I would like to share with every single person whom has medical equipment in their home.  PLEASE increase your personal property insurance to cover the cost of the equipment that you own or rent and multiply that total by 2.  We did not do that and so all of Gracies's thousands and thousands of dollars of equipment from her helmets to her sleep safe bed, all need to be replaced out of our personal property insurance, not medical or any other insurance.  So, that being said, we have had many many people praying, sending gift cards, and doing whatever they can to help us feel the support and love from home as we live so many states away.  We have also had love and support from some of our friends here as well.  We have so many things to be grateful for.

Friday, March 21, 2014

Just Imagine...

It is snowing, the temperatures are in the single digits and the Oklahoma wind is surely sweeping down the plains.  It is 8 am and I am in Texas with Avagrace because she just had three surgical procedures in one day.  We were supposed to be home by now.  We were supposed to be home many days ago.  Yet Avagrace is struggling to recover.  Three procedures and 8 hours of general anesthesia were harder on her than we anticipated.  She has finally come off of the vent but her stats are still troubling especially at times of pain.  Most kids with intractable epilepsy have been on and off of ventilators regularly.  But Avagrace's lungs/airway has always managed to be fine.  It is her heart that gives out when the seizures get too tough.  This is the first time we have had any "vent dependency" and the first time that she has not been able to work through the pain without hyperventilating and causing more seizures.  We have been released to the Ronald McDonald house to try to avoid all of the viruses that are bringing lots of kiddos into the hospital during this particular time.  Some of these viruses would reek havoc on Avagrace's immune system and post surgery struggles.  But this morning we are up and traveling just a few blocks down the road to go to the hospital for outpatient care and therapies.  We are working our way out of the doors and into the ice and cold.  I have a mask on her face, many layers including 2 blankets over her coat and clothing.  She is tired and in pain but smiling and waving good bye to everyone assuring them she will be back after her appointments.  She is in her beautiful purple collapsable wheelchair that we are so grateful to be borrowing from the JDMC in Oklahoma (where she goes to PT and OT although we have not been in many months due to all of the surgeries and hospital stays).

On the back of her wheelchair is her oxygen tank, her rescue medication bag, a "diaper bag" (she hates that we call it that) but it is what it is, my purse and an extra blanket just in case.  Avagrace struggles to maintain her own body temperature and in the summer she rarely sweats (this past summer was the first time she had sweat since she was an infant).  I am so thankful for the Ronald McDonald house, for the family-like love they give us, for the meals, the room, the atmosphere, and right now I am especially thankful to the person who coated the sidewalks and ramps with salt.  When we get to the road to cross to the parking lot to get into our car slip and slide a bit but we make it without a mama wipe-out.  We make it to the car and I help Avagrace into her carseat.  We remove her coat so that her straps fit her snuggly and in the way they were meant to fit and I buckle her in.  I quickly put her coat on her backwards and lay her blankets on her lap.  I shut her door and start the car from the passenger side so that it can warm up a bit so that the heat can start working for her in the back.  I take her oxygen tank, her suction machine, and all the bags off and put them in the front passenger side seat of the car and shut the door.  I wheel her chair to the trunk.  I adjust the foot rest up, the arm rests up, and the handle up.  I push a latch while pulling a leaver with another hand and use my shoulder to push into the back of the chair to collapse it.  I lift the 40lb wheelchair into the van, push it around a bit so that it fits properly (we have a seat folded down to make room for it).  I close the trunk and walk to the front to get in.  When I open the door I see my darling Avacake is in a full blown Tonic Clonic Seizure, aka Grand Mal.  She has enough strength to tilt her carseat that is specially made for special needs kids of her size, and that has been placed into our car by experts.  She is leaning to the right and about an inch away from hitting the window with her head that is thrusting up and to the right it very tight rigid jerks.  I jump out of the car and into the back seat with her, trying to keep her in as safe of a position as possible and to get her oxygen on her.

After accomplishing that I check my stopwatch app that i hit as soon as I saw she was seizing.  It has already been several minutes.  I talk to her, I pray out loud.  I beg that this seizure will stop and that her heat and tongue will be fine.  (she has bitten her tongue so badly numerous times and this makes eating very difficult.  She is already having trouble eating since her surgery).  As I am watching the clock and preparing to give rescue meds if we hit our time limits my phone rings.  It is Brendan.  He is in Oklahoma with the other kids, who also are experiencing single to teen digit temps and school has not been closed.  He managed to get off work even though it was last minute due to the fact that we should have already been home in Oklahoma by now.  I hit decline and start to try to unbuckle Gracie so that I can hold her and lay her back a bit to give her meds.  Even if I recline our cars seat, her carseat does not recline with it.  I work on getting her into the proper position all while trying desperately to protect her from getting hurt in the back seat of a van where there are many obstacles and places to hit ones head.  I get her out and cradle her.  I give her round one of seizure meds.  A few minutes later I give her round two and this breaks the seizure but she is completely exhausted and confused.  She can barely lift her head and now I must lift her 80lbs back into her carseat and try to find her neck rester pillow to reverse and put under her chin so that she will keep her head up as much as possible to keep her airway open (this is not a medical device this is just something that we have come up with to help in situations like this).  I manage to get her strapped back in.  I climb back into the front seat and realize that I am sweating to the point that my hair looks like I got caught in a small rain shower.  I take some deep breaths and PRAISE GOD that she is still with me.

Before I leave the parking lot I call Brendan back.  He answers the phone and sounds very winded.  What is going on?  "Nothing, just walking the kids to school."  Me: "I thought that it was cancelled"  Him: "Nope.  Just OKC schools, not our [neighboring district]"  Me: But it is in the single digits.  Brendan:  "Everyone is bundled up and I think I have a ride to pick them up later, I didn't want them to miss school" (it is a very short walk)  Me: "You are such a good dad.  Thank you for bundling them up and making that cold walk fun."  We hang up and we are both off to continue the start of our day.

It is days and moments like this that inspired us to take Hope by the horns lol, and enter the NMEDA wheel chair van contest in honor of Mobility Awareness Month.  Avagrace is 9, soon to be 10, then a teen, than an young lady and so on.  We are moving to Colorado and I believe that God is going to continue to use her to prove that your diagnosis does not make you who you are, it is just a part of who you are.  Without this van we will continue to have situations like this.  We will not be able to move to Colorado.  We will not be able to just go somewhere because so and so invited us to such and such and we want our children to experience more than just doctors appointments and capitol meetings.

NMEDA and their contest has given us Hope of a completely different life.  So while I almost didn't enter because I know that there are so many other amazing heroes out there.  So many other families that need help and hope and a wheel chair van.  While I almost didn't enter because I knew people would judge us (duh it is a competition) and I struggle with caring too much about other peoples judgement.

I knew that this was the right thing to do.  This is another way to raise awareness of the challenges of special needs.  The reality of Epilepsy.  And because fighting for my daughter and being her advocate is why God gave her to me, so I better not let doubt stop me from being the best mom that this child could ever have!  And trust me all five of my kids are so beyond amazing, so supportive, so loving, so kind, so empathetic, and so incredibly proud of our unique family……well I have a lot to live up to because being their parent is not only the greatest blessing but also the most humbling and rewarding truth.  I have five amazing kids that God has given to me and I do not deserve them.

So, if you haven't voted, or shared, or understood why in the world we would even need a wheelchair van when Avagrace has the ability to walk and does walk as much as we can encourage her to do, she is in her wheelchair more and more (and this is what degenerative means, she will need it more and more and more as she grows and progresses) and to keep her safe and to give her the greatest chance at the best life possible.  To give her the tools that she needs to continue being the smiling child in the phlebotomy lab, and the little girl that makes friends every where she goes.  We must vote and share and pray and hope that somehow, everyone in Team Avacake will take 30 seconds out of the day EVERY DAY until May 9th to vote for her to be blessed with safety, comfort, and the ability to go to Colorado and get the treatments that she needs to heal her brain and give her back her life!  Say no to Hospice and say yes to Vote for Avagrace's NMEDA Hero page!  #NMAM14