Thursday, January 1, 2015

Goodbye 2014! A recap of events and lessons learned.

How glad I am that we made it through the storms that were sent relentlessly over the course of 2014.  We are done and I could not be happier for that simple fact.  While it was a year full of twists and turns Gods love never stopped pouring over us, reminding us that He was in the trenches with us. 

2014 started in a state of mourning over the loss of a best friends precious baby who was born and lived for just over an hour.  I was able to be there for her birth and I was able to bring her brothers to the hospital to meet her.  I spoke on her parents behalf at her funeral and I wanted nothing more than to surround them with our love in person as 2014 began but instead God had plans for Gracie and I needed to be with her.

One year ago this week we got the news from our daughters doctors that our prescious Avagrace would not see this day a year later.  I am so happy that they were wrong, and that we still hold her today.  That is absolutely the best thing to come from this year.  In January Avagrace underwent several surgical procedures, with multiple times all at once.  It was risky to keep her under so long but it was much better than putting her through multiple surgeries over the span of a few weeks.  She and I spent many weeks in Fort Worth Texas first in the hospital that we love and then in the best Ronald McDonald house a family could ask for, and trust me we have seen many of them over the past 12 years with our kiddos.  We were still a one car family at this time and so Brendan had to take a vacation from work to stay with the other kiddos so that they would not miss school (walking distance).

Shortly after we arrived home we ushered in February with on of our families favorite holidays.  A day where we celebrate the love that we have between us and teach our children about Saint Valentine a man who fought for the right of soldiers to marry!  However, February was  also the month that one of Brendan’s grandmothers “Nana” went to be with the Lord.  Nana was an amazing lady who ministered to those in senior centers, was active in her church, and loved her family actively.  She was one of the first of Brendan’s family that I ever met and she was lovely and welcoming from the start.  Sadly Avagrace was not approved for traveling but thanks to the love of our family Brendan and Aidan were able to go home to attend her funeral. 



In the beginning of March Brendan celebrated his 30th birthday and 2 weeks later it was my turn to have a birthday.  However, on my birthday our very first owned home (meaning owned not rented); that we loved and had put much blood, sweat, and tears into caught on fire.  The fire burned for several hours before anyone knew what was happening because it was cold so the windows were closed and because the fire started on the first floor and was lacking any real oxygen source.  By the time it got to the second floor and the garage it picked up momentum and the inside was destroyed.  The fire took everything that we owned including our precious birds but left the external structure and most of the main supporting internal beams.  We were so grateful that we were left with of course everyone unharmed, our van, our dachshund Felicity that was playing in the back yard, and the clothes on our backs (Felicity our dog had an insulated house outside and was only playing in the sunny warm-enough to not wear a jacket weather while I was running birthday errands).  We had friends that were there to take our kids directly from their school and straight to their homes so that they didn’t have to see the fire.  The two kids that were with me when the fire was discovered were picked up quickly by another friend that kept them while five fire trucks full of the kindest fire fighters we could have asked for fought the blaze and prevented the fire from reigniting. 



Something truly God-ordained was the fire chief that was on duty and presiding over our fire (because there were fire trucks from two different cities there were two fire chiefs present but only one who presided over it and that was the one that was actually the fire chief for our community).  When the fire trucks got there I kept warning everyone about all of the oxygen tanks throughout our home.  I was also letting them know where different medical equipment was etc.  The chief asked why we had all of the oxygen so I told him simply that my daughter had a rare form of epilepsy.  He kind of shrugged a bit with a sigh and said heavily “my son has epilepsy too.” He didn’t allaborate and couldn’t because he had to get back to the fire.  Hours later when everyone else had gone and we needed to sit down in the trucks with him to go over what had happened and when we learned what started it he opened up about his son.  His son was the only other child in the state of Oklahoma that is known to have Landau-Kleffner syndrome.  This is Avagrace’s secondary diagnosis and why she struggles with word retention and word recall.  It is also why language and different learning abilities are her first area of regression with each seizure.  We had asked our doctor in Texas if we could be put into contact with the family that “lived close to us and had the same diagnosis” but due to HIPPA regulations he could not give my information to them because I did not know their names, and he could not give me their information either.  But God put us in touch with this family and that day the fire chief gave us his personal cell number and immediately wanted to help us replace equipment if insurance didn’t cover it (which they didn’t the first time for many things and of course were not going to be doing it the second time).  So this chance meeting was a reassurance on a day that was anything but reassuring, that God had us in the palm of His hand! 



The day of the fire and for many weeks later we had a neighbors surround us with love and one in particular that opened her doors and her arms to our family for as long as wee needed it over the next few weeks as we went through the motions with insurance.  She put up signs and caution tape as looters stole from us whatever might have been salvaged and we had a sort of neighborhood watch attempt to stop the thieves that were relentless.  That night, after we picked up our kids from our friends houses we told them what had happen.  It was already 11pm on a school night and so we decided that Brendan would drive and I would tell them on the way to the hotel.  Well that was a bad idea because of course as soon as we (who were already numb from watching all we had worked for and all of the memories die before our eyes) as soon as we told them there were screams and the most guttural crying I had ever heard in my children.  We pulled over and just held them for a long time before we all got buckled up again and headed to the hotel. 
 I will never forget the feeling of that very first night, in a hotel, Brendan in one room with some of the kids and I in another covered in soot and smelling of a smokehouse just laying there thinking Oh God, please help us, we have nothing.  Sure we have insurance but how does that help us now in this moment?  It will not help us for many weeks and we have no oxygen for Gracie, we have no suction machine, we don’t have pajamas or even a change of underwear.  We are all alone here with our family in Pennsylvania and Maryland and we are here.  In this Hotel.  In Oklahoma City lost, afraid, and not sure what to do.  But going through the motions as parents.  Reminding our children through their tears that we can replace our stuff and God is in control-we started to hold on to those truths as well.  Our kids were the best examples of just putting one foot in front of the other.  The next day they insisted on going to school so that they could be distracted from the pain and so that they could maintain normalcy.  They didn’t care that they were wearing the same clothes as yesterday, they were happy that they at least had one full outfit.  Thank  you God for our children, for the love that they showed one another.

"As for me and my house we will serve the Lord"
You can still see OUSE WE :-)

 Over the next few weeks we had clothing pour in from our friends, strangers, our girl scout troop that we had not been able to attend in person for literally about two years.  We had equipment come from complete strangers that saw our story on the news and had to drive hours and part with things that belonged to their children who are now in heaven.  The love from strangers and friends was overwhelming.  We new that there were no words for the gratefulness that we had for each of them, many unnamed that would leave stuff at the front desk.  We had gift cards and messages of encouragement.  Notes just telling us that people were praying for us.  And it was amazing.

Unfortunately, we quickly learned our horrible mistake.  When assessing how much personal property insurance we did not include the replacement of all of Avagrace’s medical equipment.  Even though it was on the forms that we filled out with the insurance company when we first moved in, giving them a generalized inventory of our belongings, it was never calculated into the personal property total.  On top of that we did not know that you can purchase separate insurance as a separate line item for special needs/medical equipment, homeschool supplies, electronics, jewelry etc.  So the fact of the matter was that we were grossly underinsured when it came to personal property.  Our house was insured properly so the rebuild would go on without a hitch so that was good.  But we had no idea what we were going to do about our other stuff and we are still taking this one day at a time.  We currently have rental furniture that is covered by our insurance until we move back into our home.  And we have purchased beds for everyone.  So when we moved back in we at least have that!! 

The highlight of April was that we had a visit from one of my very best friends and her husband spent their 10th anniversary flying to Oklahoma to help us get organized in the hotel and looking for rentals so that we could all be under one roof again (yes we were in the same hotel but two separate not conjoined rooms).  I have known my friend since I was four years old.  We even worked at the same place as teens.  We grew up together so it was so nice to have someone who had seen you through many phases of life and who is like family, present during this time.  While we loved our hotel and were so grateful for the extremes that they went to to try to make us feel loved when we felt utterly alone, we longed for a place that we could all be together, playing and healing. Unfortunately, we were about to get another blow.  Just after a wonderful Easter celebration with our dear friends that took care of our dog Felicity for us during the time we were in the hotel, we found out that our Felicity had breast cancer and needed to be put down because it was in the final stage.  She was not getting enough oxygen, had lost a lot of weight, and was suffering.  She was Avagrace’s best friend and our families first fur baby.  Our kids were very upset at this point and felt like they could loose no more, that this was too much and more that they were able to handle.  But through this they learned that they could in fact go on and that even if more heart ache was to come, we would get through it as a family and by the Grace and Love of God.  The kids wanted to have a funeral and so in one of our hotel rooms we crowded onto one of the queen sized beds and all shared our favorite memories of our pets, and then stories of the house and toys or mementos that were now gone.  They had finally gotten out all of their grief and it seemed that this turned into our first real phase of healing.

Felicity Snuggled in Gracies Bed

 Our prayers for a rent house were answered in the end of May and we were able to move into a home close to base but in a new school district for the kids.  We also found a builder that we absolutely loved and who loved us in return.  His wife and daughters dug through the ash and rubble to try to find our childrens baby blankets.  In the end she found 5 out of 6 blankets and washed them over and over until they no longer held a single scent of fire!!  When my kids got those memories back there were tears of joy.  J

Because of the generosity of my mom I was scheduled to fly home to Pennsylvania in the end of May.  I was going to pick up some things to help the family like hand me downs from friends and a car that use to be mine, was now my moms, and was going to be ours again thanks to her.  We would officially own a second car for the first time in 8 years!  It is a Ford Focus, so not something to fit the family, but second car for Brendan to get to work, what a blessing!  I was also going to get to see my grandparents both in their 90’s whose health had been all over the place and I would be spending time with my nieces and nephews and of course the other adults in my family before I drove back to Oklahoma.



 However, on the way to the airport we were stopped in rush hour traffic on a highway right near the hotel we moved out of the day before.  That is when a 19 year old who was texting and talking on the phone hit us going 60mph.   The sound of crashing metal and screaming children is still in my dreams.  When I turned around Violet and Breya who were in the third row seats in our van, were covered in glass from the trunk window.  Aidan was in shock and Liam was so scared.  Miraculously, Gracie, in her special needs car seat was just confused and actually was the calmest of anyone, she did not even have any GTC’s (those are grand mal seizures) until later that night.  Looking back she was probably in shock too. 




Brendan Liam and Avagrace stayed to talk to the police while Aidan, Violet, Breya and I all went by ambulance with neck braces on to the local children’s hospital.  I refused to leave my kids alone.  When it was evident that I had to go to the adult side of the hospital in their own ER I posted on Facebook (I don’t’ even remember doing this) something to the affect of “Please if anyone can come to children’s ER right now please do.”  Within the hour I had friends surrounding us enough for everyone of us to have someone to  keep us company!!!  And let me tell you the mamas that were by my children’s sides fought for their care just as well as this mama bear would have on my best day.  Even though that day was terrible in so many ways I still look back on it as one of the most life changing beautiful days in my life.  Those friends didn’t ask questions, they didn’t think twice, they dropped what they were doing and they came to our sides.  They had no idea why we needed people.  They did not know about the accident.  They just knew that we needed help.  They stayed until the wee hours of morning, they fed our children, they stayed at our rental house until we were released, and they showed Gods love to my children, Brendan, and I. 



The worst thing to come from this horrible accident was that some of us were injured with lasting injuries that we would carry with us forever.  One of my children will always have to go to physical therapy and do things just a little differently because of how hard we were hit.  All of us were wearing seat belts and the four youngest (ages 10, 8, 7, and 6 were ALL in car seats and I share this because if they wouldn’t have been, this would have been a much different outcomes) I will never stop being an advocate for using car seats for as long as possible.  They make car seats that go up to 100 pounds or more and if your child can fit in it, use it!

The other burdens stemming from the accident were that our van that fit everything was gone-totaled!!  Also, the girl who hit us also had the same car insurance we now had a conflict of interest even though it was completely her fault and no fault of ours.  So we had to get a lawyer and we have yet to see any money from this accident.  It will be a long time before we are reimbursed and of course our much loved van was completely paid off and our only car, so we had a rental for a while but then had to find a new used vehicle.  While we love our “new to us” Ford Flex it barely fits all of us and our medical equipment.  It is a tight squeeze and I am not able to take all kids and medical equipment grocery shopping because there is no room for the groceries!  Two of us need to go to physical therapy on top of Avagrace’s full appointment schedule.  One of us goes three times a week and is about to see the third specialist in hopes of getting help for what is broken and still sprained.  This child is in pain constantly and is too shy about it to share because they have seen the negativity in others when it comes to special needs.  I remind them of the positivity, kindness and understanding that people show but still they fear rejection. 

Well enough about that!

In June I was overjoyed when my brother finally married my now sister and even though we could not make it to the wedding the pictures are priceless.  We are so thankful to have this beautiful caring person added to our family!  And we practically share an anniversary with them because Brendan and I celebrated 9 years of marriage and 12 years of being together In the same week!  It is hard to believe it has been that long.  We were very lucky to still have our very loved baby sitter and friend available so that we could go on a date (she had been there for us many times even when in the hotel and we have known her for several years) But shortly after our anniversary she moved as all of our Air Force friends eventually do.  Around this time we were blessed with a visit from Brendan’s parents and Aunt.  They helped us get our rent house cleaned up, organized and they helped us get some things that we had not been able to replace yet.  By the time they left I was a mess because it was so wonderful to have family around, it can be really hard being a military family sometimes and this year was definitely one of those times.



By that time I had already pulled out of YouTube and was barely posting on Facebook or even keeping in touch with friends because the sheer number of appointments and time that was needed for our family to heal was obviously the most important thing to focus on.  So in July we just unplugged and spent time with family.  Also in August I was finally able to make that trip home to Pennsylvania.  I was able to spend the fourth with my nieces nephews, brothers and sisters and mom.  I saw some of my friends that are as close as family, I had a car filled to the brim with hand me down clothing and some house supplies, and the best part is that I got to spend time with my grandparents.  My grandmother had just started hospice comfort care and was not doing well.  But I was able to hold her hand, pray with her, and love on her every day while I was home.  She even had some times when she could hold conversations and she gave me some wise marriage advice.  Again that was a very obvious God moment.  I wasn’t talking about Brendan at all.  I was just listening to her talk about her and my grandfathers beautiful 74 years and 11 months.  When she turned and looked at me and said something that I needed to hear.  It was if God had told her to say it.  I cherish the time that I had with her there.  She is a true gem!  It was so hard to leave when it was time for me to go home, I long for the day that we can live closer to family.  But in leaving I was able to stay with one of my best friends who use to be stationed here and has since moved on to other bases.  But she was visiting family in Tennessee and I was able to spend the night at her parents house with her, her husband, and their two young children whom I had not yet been able to meet.  My heart was overflowing with gratitude for my mother who had made this trip possible!

In the end of July we welcomed a new bird into our family.  Bae is a white bellied caique who resented us at first because he/she did not like that his previous family no longer wanted him, but soon Bae warmed up to us and is now a little ball of feathered fun J who loves each and every one of us and makes sure to show it!




In the very last part of summer Aidan was able to go to Kevin Durants basketball Pro Camps!  It was two days of intense coaching and during the camp we were able to watch him.  Kevin Durant was present both days.  On the first day Aidan got to shake his hand and get pictures with him-I thought Aidan was going to faint-just kidding Aidan acted like it was no big thing and later he almost fainted.  The second day Avagrace had had a long night prior and day of seizures.  We were afraid that Aidan might miss the camp.  She was able to get a nap and was ready in time to go.  She was in her wheelchair and the other kids and I were sitting on the court off to the side just watching the campers.  I was taking pictures and behind me I heard Liam say “Hi Mr. Keving Durant”  I thought he was playing until I hear a familiar yet unfamiliar voice say “He little buddy” I turn my head and then have to look up to see this very tall basketball player that our family adores for his good character, Kind heart, and so many other reasons.  I was able to mumble out the words, do you mind if I take your picture with my kids?  So he, the MVP of the NBA, stops and I try to get the kids around him quickly so that I am not wasting his time.  I was able to snap a quick shot of him with the other four kiddos.  He shook each of our hands and then was off to help with camp.  Breya was so shocked that she just sat quietly soaking the moment in for about 15 minutes!  Gracie couldn’t stop flapping her arms and kicking out her legs giggling and I was so thankful that my kids were blessed with one of their dreams. 





Shortly after that camp and just shy of her 75th wedding anniversary my grandmother went to be with Jesus.  Gracie still wasn’t strong enough to travel and we had no more vacation days or finances to make the trip back for her funeral so we celebrated her life from Oklahoma.  It was then that I realized just how much I missed my scrapbooks, pictures, and items that my grandfather had made for me as a child.  My grandmother was literally my second parent, second mom, and one of my best friends growing up.  I am her namesake and together we were like two peas in a pod.  She was so intelligent and such a role model for marriage.  When I am a grandmother I can only hope to be one tenth as good as she was.  

In August school started for the kids.  Aidan is in middle school and because we are living in a different school district with our rental we had to apply for out of district transfer for him to be able to start middle school once, with the kids he went to elementary school with.  Fortunately this was approved.  It was not approved for the elementary school but we could not be happier with that outcome.  The younger kids are in the best school that they have ever been in (other than homeschooling of course).  We are having the best results and the kids love going to school!  We are praying that when we move back to our house that they will approve an out of district transfer so that I can continue taking them to the schools that they are in right now.  Avagrace is still homeschooling and she is thriving as well.  We have added some essential oils to her regimen and I now sell DoTerra oils because of how much they have changed our lives.  They have replaced medication for one of our children, and even one of my prescriptions and they have helped Gracie in ways that have left doctors baffled.   She has in no way been cured but any improvement is a huge deal to us.

So fall came with a bit of fanfare, I was able to attend the DoTerra convention in Salt Lake City Utah and I was able to see some of the beautiful things that this city offers.  It was a magnificent learning experience as I listened to a full panel of doctors that taught all about things that I had already been studying with all of my research and advocacy for the legalization of cannabis oil for children and adults with epilepsy and other serious medical conditions.  It was awesome to hear that this essential oil company was using gas chromatography (also used by chemists who make prescription medications and other scientists) to test their oils to make sure that we were not getting junk but the purest most authentic form of oils that came from the plants grown in their authentic and optimal growing conditions.  This is a company that does things differently than any other oil company and they are truly setting a standard that other companies should be forced to follow.  It is work like this that will help the FDA learn how to regulate natural medicines. (can you tell I am excited?)    When an essential oils company does the hard work that the Realm of Caring does to test their charlottes web (if you don’t know what this is you can check out my vlogs on legalizing medical cannabis aka oils  from the marijuana plant for children with epilepsy).

Ok, so back to the family!!  In September Brendan was still working swing shift, which meant that he went to work just before I had to pick the kids up from school.  This left very little time for him to spend with the kids.  But that was going to change and when it did we were finally able to get back to a routine again.  It was so appreciated and long overdue.  With the change in season and the change in schedule we pulled in together a bit more and we cherished each day we had, not caring about the things or the challenges, but simply each others company.  We had truly learned what real joy is and we were not about to let that go.  We were also learning how involved rebuilding a house is and while it is sometimes fun it is also sometimes a lot of stress and work. 

In October we got a fantastic present and that was the arrival of another one of our best friends who was being stationed at our current Air Force base again!!  Their family had been gone for a few years and yet was still very much a part of our lives.  I was so very happy to have such a wonderful friend live in the same city as I do again! 

Also in October we were able to go to a Thunder pre season game that just so happened be in the school district that we now lived in.  They arranged for Avagrace to have a front row seat for her wheelchair and for us to have seats around her.  We all were in the first and second rows of a Thunder game that she could actually go too!!  There were no flashing lights, or crazy special effects.  Just a good old fashion game of basketball with our favorite team and favorite players!  Kevin Durant and Russell Westbrooke came over and shook her hand and asked her how she was doing!!  We talked to some of the other players too and got some great pictures.  So it was now official Aidan got to meet both of his favorite players, Avagrace got to check off two things from her life list to meet Kevin Durant and Russell Westbrooke and see the Thunder play!  Ironically the players had been to the hospital on two separate occasions when she was inpatient but she was not well enough to go down to see them.  And there would have been no other way to have her see a game in person.  Gods blessings are amazing.  He new long before we moved into the school district that we are in, that this game was going to take place and that Gracie and the rest of our family would be blessed in this way.









In November we love to make extra sure that our focus is on Thankfulness and giving to others.  While we did not collect toys for the hospital this year we did participate in the schools food drive and Violet won for giving the most.  It was so special to see her and her siblings going through our pantry and then going to the store with their birthday/special money getting items for the food drive.   It was a blessing to us to be able to give back in this small way when we have been given much this year.  Amazingly, our GoFundMe site had brought in about 3,000 dollars by this point and so we were finally able to order some more of Gracie’s replacement equipment.  I am not going to share what yet because it will be in a future video.  

We spent Thanksgiving with another family that is so special to us and has been a part of our life for several years.  Fortunately, they are also stationed here and Brendan works with the husband and his wife is one of the sweetest ladies I know.  They are constantly opening their home to others on the holidays and she always cooks a huge feast.  We are quite partial to their cook outs in the summer months J.  Not only did they welcome our family to their house for Thanksgiving but because I no longer had a wedding or engagement ring and because her husband had gotten her a new set for their last anniversary, she gave me her original set!  Talk about a blessing!  I am still blown away by her generosity and desire to bless me in this way.  I feel so honored and so loved to wear this ring that represents not only our marriage and the love of a friend, but also the amazing Godly example of their marriage. 

Unfortunately, when challenges face people it is often a time when one learns who their true friends are.  Sadly, we learned a lot this year and this was one of those heart-breaking lessons.  When you spend years with people and invest time and resources into their lives only to learn that it is a one way street it can be very hard.  And for me especially, someone who wears my heart on my sleeve, I have to learn to guard my heart better than I am.  I could go into more details but honestly for this specific topic I think it is best if I simply leave it at that. 

And finally, December.  Brendan had a short deployment but was back in time for Christmas.  I was excited about our reentry to Youtube and Facebook although I am still tip toeing around Facebook with just updates and a few times checking in on others.  I find social media to be a challenging thing to embrace when our hearts are still healing.  We ended the year with flu, Strept, and at least three doctors appointments a week (not including therapy appointments), and a few wake up calls that are definitely going to influence my focus as an individual and our focus as a family for 2015. 








I am so glad that 2014 is over and am thrilled at the prospects of a clean slate.  It is like when you ask Jesus into your heart and then purpose to follow his covenants.  You accept all the blessings even if those blessings are painful losses and you purpose to live your life better and stronger because of all that you have learned.  Our family devotionals for December were written by one of my absolute favorite bloggers and authors Anne Voskamp (who actually featured Avagrace’s story a few years ago on her blog to help raise awareness for epilepsy!!  Sorry fan girl moment) The book was called “Unwrapping the Greatest Gift” and it will be a December tradition in our house for years to come! 

Most importantly even if 2015 is another year like this one, I know that whatever it is we can face it as a family as long as we are keeping our eyes on God who is in control of everything. 

So with that I want to leave you with a bit of unsolicited advice lol  2015 is your year, regardless of circumstances we can make it joyful or miserable by our attitudes and choices even when that is the hardest thing for you to do.  Trust me, being happy during some of these challenges was the last thing that I wanted to be, but  it was a choice that I had t omake because I was not the only one going through these challenges.  And even if I was, why would I choose anger and bitterness?  That is not freeing.  Choosing JOY when you feel the least joyful, now that is freeing and truly the best feeling because even when emotion comes first, your actions will determine your feelings!


Thank you so much for supporting our family, we pray for our readers/watchers/friends/family and our hope is that you have a wonderful 2015



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