Magical Vacation

I've been off the grid for awhile now. What can I say? Sometimes I get so busy living life that I have no time left to blog about it. But, I do want to catch up on the very important events so that I can hold on to those memories forever.

We just got home night before last from our Make A Wish trip to Give Kids the World Village in Kissimmee, Florida. Just to clarify, it wasn't just a Disney trip (using "just" loosely here); it was a magical week at a 70 acre village designed just for families with kids with life threatening conditions that included the option to visit the Disney parks for free if we wanted. We arrived Thursday afternoon at the village, and we spent that evening enjoying the warm weather and nightly party held there. The night we arrived, the theme was Winter Wonderland, and the village was decorated with snowflakes and all things Christmas. Christmas music was playing over the speakers, little tents with crafts and activities for the kids were set up all along the avenue, and Santa was also there with a toy for each child. We were completely blown away by the effort the volunteers and workers at GKTW went to to make the night special. We quickly realized that they did everything with the same level of extravagance and generosity.

The next day, we didn't leave the village. We thought we would, but our kids were exhausted from the big day of travel and excitement, so we let them sleep in. We spent our morning at the giant Candyland playground. Like everything else at the village, it was amazing and had a story attached to it. Apparently, years ago a family visited GKTW, and soon after their son passed. His favorite game was Candyland, so the family donated "Matthew's Boundless Playland" to the village. It is actually a life sized game board where they hold weekly games. It's also fully handicapped accessible, so there were swings that Avery could swing on and a wheelchair ramp going above the climbers and all around the play area. We spent the early afternoon at the zero entry, heated pool, which my kids loved! Avery splashed and giggled. Then there were the rides on the Enchanted Carousel, activities in he Castle of Miracles, evening party, which was pirates and princess themed. Oh, and I can't leave out the food, which was delicious and always available, and the ice cream palace that served ice cream from 7:30 am to 9:00 pm, as much and as many kinds as one could possibly want. I admit, I ate ice cream every day! My kids and husband had it more than once almost every day!

SeaWorld was our first park outing. Bryson was amazed by the whales! If you know him at all, you understand why. We enjoyed the walrus and otter show and especially the dolphin show. The weather was perfect, and we got back to the village with sunburns and sore feet, and after a brief break in our villa, we headed out for the evening festivities.

We did visit Magic Kingdom. We loved the parade and the Show in front of the palace. With our Make A Wish buttons, we were fast passed in every line and taken aside for photos with the characters. Avery loved the characters! At one point, he had ahold of Goofy's hand and wouldn't let go. It was precious! Em was terrified of them all, so we had to hold her the whole time. While we enjoyed our time at the Magic Kingdom, we were all ready to get back to our village. Yes, you've probably figured it out by now that there was another big party, more fun, games, food, ice cream and characters.

And I can't leave out the Gift Fairies! Each day while we were out of our villa, the fairies would come and leave gifts for the kids on our table. Really nice gifts too! Needless to say, we brought home MUCH more than what we took with us!

We required another day off from parks on Monday. Yes, they were fun, but with small kids, it is pretty exhausting as well. Not to mention there were so many things we wanted to do at the village. So Monday was another pool day and party evening.

Tuesday, we went to Disney's Animal Kingdom, and I think we enjoyed it more than Magic Kingdom. The Kilamanjaro Safari was awesome with all kinds of animals literally feet away from our safari truck. Avery's wheelchair was able to be strapped down on the truck, and it was a fantastic view. We saw the Finding Nemo musical and The Festival of the Lion King show as well. Both were amazing. Of course, there were characters to see and a few rides as well. Like before though, we were ready to get back to the village.

We spent most of Wednesday exploring a few things at the village we hadn't had a chance to yet, like the Dino Putt Putt course and the game rooms. Our flight didn't leave until 6:30 that evening, so we had a lot of time left. We got back into Dayton around 9:00 that night, and the temperature change was shocking! Our limo was waiting for us ( oh yeah, I didn't mention that a limousine was our ride to and from the airport), and we officially said good bye to our vacation as we pulled up in from of our house.

I know I left out some things like the Magic Pillows my kids got from the Magic Pillow tree, the horse back rides my boys took, the visits from animals, school bands and choirs, trick or treat at the Halloween Party, and a bunch of other things. Let me just say, it was a vacation that we'll never be able to top!

We were surrounded by so much love and kindness while we were gone. There were a lot of kids there with all kinds of health issues and special needs, and I couldn't help but get teary a time or two as I watched these precious kids and their families enjoy themselves. At Give Kids the World, they recognize the life changer that having a sick child is for the entire family, how every decision and action is premeditated and planned around him or her and the amount of stress that goes along with the endless appointments and worries for what the future holds. They truly go above and beyond to give the Wish child and his/her family a week with no worry or limits. I told Phillip one night that if love and kindness could heal, Avery would for sure be the healthiest child alive.

If you're interested, I'd encourage you to look up Give Kids The World village (the story behind it is really amazing too), and be aware of organizations like Make A Wish, who bring hope and happiness to so many kids. I'm beyond grateful to them for what they do!

Here are some highlights of our trip!

The limo ride to the airport.

The entrance to the amazing Candyland playground, named for a former guest.

Phillip and me.

My little Avery enjoying the swing...as long as he doesn't go too high!

Em enjoying the sunshine!

My babies in the pool.

Three princesses. :-)

Whale show at SeaWorld.

Bryson and Em headed to the pool.

Fishing!

Bryson and Mickey.

Nemo show

The palace at Magic Kingdom.

Em and Mickey. She was scared of the real one.

Great view for Em!

Lion King show.

Mommy and Avery.

Gotta love Mary Poppins!

More Magic Kingdom fun!

The main man.

Em and one of her many ice cream snacks.

Travelin' On

Since my last post, I have done something I hadn't done in a really long time...traveled outside of the state of Ohio borders.  Besides quick weekend trips to Indiana to see my parents, the last year and half we have pretty much been home or in the hospital.  Before that, we were constrained by Avery's need for blood and platelet transfusions every few days, so trips were planned and short.  As 2013 began, Phillip and I vowed that if we didn't do anything else, we were going to try to get out and enjoy some things we've not been able to for a while now.

We headed to Tennessee for the last few days of January and the first few of February.  Phillip has always wanted our family to attend the Minister's Conference in Pigeon Forge, so this year, we made it happen.  We took Bryson out of school and spent about five days in Tennessee at the meeting and then at Phillip's dad's and step-mom's house.  It was both refreshing and encouraging to be around so many people that we hadn't seen in so long and hear some amazing messages.  We mixed a little fun in with a tiny bit of shopping and dining.

We got home with just enough time for me to unpack and catch up on laundry, and four days later, Avery, Emerson, and I headed even further south to Alabama with my mom for a visit with my sister, Rebecca.  It had been nearly two years since I'd been there!  It was so nice to spend that much time with Rebecca and let the kids play together.  Unfortunately, all the kids had colds, Rebecca is dealing with serious pregnancy-related nausea, and Avery spiked a fever while we were there, which all put a damper on any plans to go anywhere.  We ended up staying at the house pretty much the whole time, cooking each day, and chasing the two little princesses, Ava and Emerson.  Mom did watch the kids a couple of times for Rebecca and I to do a little shopping, and then I stayed home with kids while Mom, Rebecca, and Brandon went for an ultrasound revealing that Becca is having another girl!  We had a great time just being together, despite having sick kiddos.

So now I'm finally home...for a little while anyway.  We have Avery's Make-A-Wish trip to Florida scheduled for March 14th, so in less than a month, we'll be gone for another week. All of this traveling isn't just about catching up with friends, family, and experiences that we've missed out on recently, but it also represents a new chapter in our lives where we recognize more than ever the importance of living in the moment because you really never know what the future holds.  We're still being cautious about taking Avery around crowds, but we're enjoying the freedom to go if we wish and looking forward to making lots of memories together!

Bethany

Music to My Ears

With the arctic temperatures we've been having lately, this stay-at-home mom has been staying home more than normal.  Not to mention that this year has been an epic one for influenza, and the thought of my little ones getting it, especially Avery, has pushed my germ paranoia to a new level.  So just to be clear, I've been home A LOT lately.  There are times when staying indoors too much gives me cabin fever, and I'm sure as spring gets closer, that will happen.  But for now, I'm okay with staying home.  I have to admit though, I have become one of those frumpy moms who stays in her pajamas all day.  If I have nowhere to go, I shower and put clean pj's back on.  One would think that being home so much would result in a perfectly clean house, right?  Wrong!  Somehow, we make even bigger messes despite my non-stop cleaning.  Plus, somehow, me getting dressed only results in more laundry, since at some point in the day I usually end up with someone's food...or worse on me.  Never judge a person until you've walked a mile in her shoes...or in my case, pajamas, right?  Don't worry.  I'll be dressed appropriately when the weather warms up and I'm tempted to leave my cozy home.

Anyway, one thing I've enjoyed especially lately has been just listening and watching my kids play together. I absolutely love how my kids are playmates and friends.  Avery wasn't so fond of Emerson when he first got home from the hospital, but he has warmed up to her so much that I think she's officially gone from "noisy, suspicious person" to "entertaining, fun person" in his book.  While Bryson is gone to school during the day, Em and Avery share toys and watch Barney or Elmo together.  She yells and points whenever she sees drool coming from his mouth so that I'll come clean him right away.  She peeks down the back of his diaper and even sticks her nose down there to see if he needs a change.  She waves her hand back and forth and says, "Shoo!"  even if he's clean!  Many times I catch her sitting in his lap, and he's just looking like, "Okay, whatever!"  They giggle and laugh, and she tries to "help" take care of him.  She thinks his therapy sessions are supposed to involve her, and even when the therapists aren't here, she pushes his walker over to him as if to say, "Time to exercise!"  She kisses him, and he gets his hands around her legs or in her hands sometimes.  They're truly so much fun to watch!

At a doctor's appointment together.

Em checking out the diaper situation.

Sharing!

And then Em climbs up in her little chair at the front window as it gets close to time for Bryson to get home from school.  She stands there and points and yells "Bub Bub" until the big yellow bus finally stops in front of our house.  She follows Bryson wherever he goes, whether its down to the basement, up to his bedroom, or into the living room with Avery.  Admittedly, it gets a little noisy, and I have to offer frequent, "Settle down" reminders as they chase each other in circles or hide from one another.  And Em has developed an ear-piercing shriek that must be the result of her being the youngest of three and baby to two big brothers.  She certainly doesn't go unheard!

The other night, Phillip and I were sitting on the couch down stairs talking and all three little ones were up in the boys' room playing.  We heard thumps and shrieks and clapping.  Yes, they were being way too noisy and making way too big of a mess, but I told Phillip that listening to them was what I always envisioned it would be like when I was a mommy.  Of all the many surprises and complications we've had, watching my kids play, love, and learn together is what makes the hard times of being a parent seem so much easier.

Those giggles are like beautiful music to my ears.  And then I'm brought back down to earth again as Bryson yells, "Mo-oom!  Emerson is... (fill in the blank with some annoying or destructive toddler behavior)."

Oh Bryson, I think to myself.  You've not seen anything yet!

Bethany

Speaking Up

I'm just taking a moment before Avery's speech therapist arrives to post, because I haven't been the most regular in my blogging lately.  2013 is shaping up to be an interesting year.  It's funny how when you're young, you imagine that when you're finally an adult at the ripe ole' age of 31, life will be smooth and make so much sense, and decisions will be so clear to make.  Reality check.  Not true!  At least for this gal!  It seems like there's this life that I've envisioned and then there's this one I'm living.  Don't get me wrong; I enjoy my life, and I'm blessed in ways beyond what I ever imagined!  But there's doors that seem to be cracking open that I didn't anticipate and others slammed shut that I thought for sure were right for my family and me. 

Right now we're fighting a "battle" if you will, with Avery's insurance coverage.  Phillip and I started off as a married couple with very little.  Our new home literally had mattresses on the floor, an old cedar bed set in the spare room, an outdated stereo that belonged to his parents, a hand-me-down computer, and a Christmas tree.  We both worked hard and tried to make wise decisions with our money.  I finished college and worked full time five years until I had Avery.  Phillip went back to school and made a career change simply so that he could have a steady income and insurance and I'd be able to stay home with the kids.  We never bought flashy cars or took big vacations.  We lived within, and most of the time, below our means, remodeling horrifying-ly dirty foreclosed houses and made them our homes so that we could build equity in each one.  The Lord has blessed us, and we have met some of our goals...others have been modified along the way.  Now it seems like all of these "wise" choices are backfiring on us, as we're coming to understand the realities of government and healthcare. 

We've had to tighten our belt over the last couple of years as I have quit working, and only teach occasionally part-time.  Phillip's job, like many others, has changed leaving him with lower pay, fewer hours, higher insurance premiums and deductibles, leading to a much smaller take-home pay.  I'm not complaining.  His work has been so flexible with him dealing with Avery's health issues, and we have had to make do  like many other Americans, cut out the extras, and we live a comfortable life because we thankfully avoided accumulating mountains of debt over the years.  Yeah, I shop off of clearance racks and second-hand stores, I drive a minivan, and Phillip has an older model truck.  But seriously, I'm happy to do it!

The problem is that Avery's medical care isn't like the normal person who may have a health issue a couple of times a year that requires medical attention or even hospitalization.  Those kinds of things can be dealt with.  A co-pay on one or two monthly medications isn't unreasonable.  However, Avery takes at least seven monthly medications (down from about 15), he is fed strictly by g-tube, and each can of formula is $43, his leg braces that he outgrows yearly cost a couple thousand dollars, his wheelchair we picked was cheap at $2500, his walker is about $3500, he has eye surgeries nearly monthly, blood work regularly that sometimes leads to expensive infusions depending on his counts, not to mention the weekly therapy sessions.  When our primary insurance only wants to pay 80% (sometimes less) for expensive medical equipment, and we have high deductibles and co pays in different categories, medical bills could pile up quickly.  I have to say we have been SO blessed with insurance coverage in the last year or two.  But Avery's health care is going to be a life-long issue, and our "wise" choices in the past are backfiring on us now.  We've been denied disability for Avery because of our assets.  (We don't have that much, but the limit is $2000 total, including housing/cars/bank accounts).  We've considered giving up our home, renting, and re-allocating our other assets, but giving up what we've worked so hard to have seems really wrong.

The good news is that yesterday I spoke to someone through the Board of Developmental Disabilities giving me an update on our Medicaid Waiver that we applied for a year ago.  We've been on a waiting list that is about 2-3 years long.  We were moved up based on Avery's need priority from number 1200 to number 21, and yesterday we were assigned a case worker.  A waiver for Avery would mean that he would have medicaid insurance that isn't income based or based on his parents' assets.  It would also allow him to have some nursing care/respite care at home so that if I wanted to go to the grocery store during the day when Phillip is at work, I might actually be able to do that.  This would be a HUGE relief for us because we've felt very trapped recently trying to hold onto as much insurance coverage for Avery as we can.  The downside is that these waivers are state based, and we have prayed about and considered moving to a different state.  If we chose to do that, it would be completely on faith, because we would have to start all over waiting who-knows-how many years to get Avery specialized insurance, and in that amount of time, we could be forced to live in a cardboard box.  Not really :-), but you get the point!

So that's what's been on my mind today...and actually a lot of days recently.  We want to be able to go wherever God wants us and do whatever God wants us to do.  I've teased Phillip that I'm ready for my mudhut in Africa now, but seriously, we're that willing.  But as you can see, we also feel very torn between trying to be smart and keep our son near his medical providers and in a place where his medical care can be paid for and having faith that God will provide.  If you think of us, pray that God will lead us.  As I mentioned, it seems like there are some doors creaking open that I never anticipated, and we want to make the right decisions.

I've learned that children with special needs are an incredibly under-represented group in many ways.  The more I learn about how our system works, the more frustrated I get.  I'm trying hard as a mom to be an advocate for my son and make his voice heard.  It's definitely a battle, but he's so worth it! 

Bethany

Holi-Daze

While Christmas is my most favorite time of the year, I'm glad it eventually ends.  All the fun just wears me out!

There's the build up to December 25th with all the shopping, wrapping, and special Christmas events like plays, lights, and such.  And then the day arrives with all of its fun festivities.  Here's what our Christmas morning looked like.

Then we spent the afternoon at Phillip's sisters house, which involved more presents and way too much eating.  Then it was an evening at my grandparents house with my parents.  By the time we made it home, we were exhausted and my house literally looked like a tornado had gone through it with all the clutter from gift opening and all the new toys.

My sister Rebecca flew in from Alabama on Christmas night with my little niece, Ava.  We spent the next day catching up on months worth of visiting and packing for our trip to Indiana.  The following day, we headed to Indiana for the Lakes family's version of Christmas, which included picking up Brandon from the Indianapolis airport, eating at a Japanese restaurant, and then plunging through 8 inches of snow to a cabin in Nashville, Indiana.  We had a ball there!  The kids and adults played in the snow, building an impressive snow man and throwing a few snow balls.  We ate.  Then we took turns getting in the hot tub.  We ate.  Then we lit a big fire in the fire place and thawed out.  We ate.  Then we pretended like we knew how to play pool on the billiard table (pretended being the key word).  We ate some more. 

 Several pounds heavier, we left the cabin for mom and dad's house, since the next day was Sunday.  We all went to church together at Tunnel Hill, and we did something that was LONG overdue...had Miss Em dedicated.  Yes, I realize that 17 months is a little old for the typical dedication, but we didn't get it done in the two months we had prior to Avery's transplant, then the year after that was out of the question if we wanted him to participate (which I did).  Since our family was actually all going to be in church together, it was a good opportunity to go ahead and do it.  She was much more wiggly than a newborn would have been, but she did pretty well.

By the time we headed home that evening from Indiana, we were almost dead on our feet.  Unfortunately, I had to drop Phillip off at the ER once we got into Dayton because he was having serious pain in his leg around an incision from a recent minor surgical procedure.  He was diagnosed with cellulitis and put on antibiotics...unfortunately again for us, they were the wrong antibiotics, and two days later the minor infection had turned into a pretty serious staph infection.  Phillip spent his first two days of 2013 in the hospital and has been off of work since.  He is recovering and should be cleared to return to work tomorrow.  This certainly wasn't how I had hoped to kick off 2013, but we've kind of learned to just roll with the punches. 

I think we've finally recovered from all the excitement of the holiday season and my house is returning to its normal state of affairs FINALLY as well.  We're not making any major new year's resolutions this year, but we're just hoping and praying that while last year was focused on Avery's health, this year we can re-focus on living closer to God and finding his direction for us.

And that just about wraps up our 2012 excitement.  Happy new year, friends!
Bethany

It's Beginning to Look a Lot Like Christmas!

Today is day one of Bryson's Christmas break from school.  Grace spent the night with him last night, and they were up by 8:00 playing.  She went home, but now all three of my babies are playing in the boys' room together.  I can hear all kinds of thumps and bumps coming from the room above me and Avery's happy noises. 

I was up as soon as I heard the kids moving around, and have already gotten beds stripped and in the washer/dryer, house straightened up as much as it's going to get today, spent a little alone time with the Lord, and have a couple of recipes laying on my counter for Bryson and I to bake later.  For now, everyone is healthy and content, and I couldn't ask for more.

There's a light blanket of snow on the ground, and despite the fact that it seems a few more lights go out on my Christmas tree each day, it's beginning to look like Christmas!  I'm getting excited about the upcoming festivities of the week. 

Thank you, Jesus, for blessing me beyond what I could ever deserve!

Now, let the merriment begin...

Let There Be Peace on Earth...

It's halfway through December, and I have yet to post once.  I won't bore you with all the gory details, but if you read my previous post, then you know we were battling sickness around here.  Well, Avery and Em did slowly improve, and just when I was pretty sure we were out of the woods, Bryson started with fever and flu-like symptoms.  As he was getting his strength back, Em's fever came back, so I took her to our pediatrician, who put her on antibiotics since she's been sick so long.  At the same time, Avery was in Lexington at the University of Kentucky Hospital with his daddy having a second glaucoma surgery.  They returned home, and the very next day, I came down with a fever.  That was four days ago, and I've had fever, headache, body aches, fatigue, and a throat that feels like it's on fire.  Yesterday, my doctor gave me an antibiotic shot and a prescription, and today, I'm feeling slightly more human.  Dare I even hope to think that we're getting over this awful sickness around here?  And yet, I can't help but be thankful that even in our sicknesses, God has been merciful.  It has been spaced out so that at least when I was sick, my little ones weren't and it just happened to be my husband's weekend off work and the day after I taught my last class for the term.

In between caring for sick children, I've managed to sneak out twice for some Christmas shopping.  I have done much of it online since it is much less hassle.  When I came home from my shopping, I told Phillip that I was kind of disappointed and frustrated with how CRAZY everyone and every place is this time of year.  Isn't this season supposed to be about peace, joy, and love?  Seriously, the aisles at Toys R Us looked like they'd been ransacked, and I somehow kept ending up in the same area as an older couple shopping apparently for their grandchildren.  Their cart was heaped and nearly overflowing, and they bickered the entire time.  Each time I'd see them, they were arguing about what to get, what to put back, how many to buy...

And then all of a sudden, all of my petty concerns about my holiday plans were shaken when those 26 people were so senselessly killed a few days ago.  I have cried and cried just thinking about those precious children and their families.  As a human being, as a mother of a kindergartener, as a former public school teacher who practiced all the lockdown drills in case of the unthinkable, it has affected me on so many levels as it has people everywhere.  I can't help but think that this particular time of year has to make it even so much more difficult for the families.  I'm sure there were presents wrapped under trees with the names of these babies on them.   

I've spent a lot of time in children's hospitals over the last several years.  I've watched as teams of doctors and other health care professionals have gone to extreme measures to save lives of children or at least improve the quality of life they experience for them and their families.  So much time, money, effort, and scientific research is dedicated to saving the life of just one child, and then to see 20 perfectly healthy children with bright futures have their lives ended so violently and senselessly seems to be just too hard to comprehend.

I laid in bed last night and thought about how dark our world seems right now.  But then I started thinking about when Jesus was born.  When He came, the world was plagued with violence and fear too.  After all, didn't King Herod order the death of innocent little babies in order to protect his throne?  Jesus was born into this sinful, fallen world to offer us hope and peace despite all of the hopelessness and fear we're surrounded by.  My heart will continue to be heavy for those families who are suffering right now.  I don't even pretend to have answers to all of the questions surrounding these events, but I do know that the only peace I have experienced has come through Jesus. 

Praying for peace and comfort this season,
Bethany