Category: Uncategorized

The Boy’s Cardiac Status

Heading home from yet another trip to Dallas…our 15th year of appointments at Children’s Dallas.

This time we moved with Dr. Zellers over to the Plano hospital, and I am quite impressed!  Was just really wierd not going to the main hospital after doing this for so long. However, we got to spend alot more personal time with Dr. Z and had virtually no wait time.

So where are we with Kaston’s cardiac status?


He had a 24 hour Holter monitor done Monday/Tuesday but Dr. Z didn’t have time to get the reading done on it. He wants to compare it to his last one and see if he sees anything different. His EKG and Echo looked good and he is in normal sinus rhythm.

He said he may want him to come back and do an exercise, or stress test, to rule anything out.  Basically, we are trying to get to the root of his extreme fatigue.  He sleeps all the time and it’s only getting worse.  (He’s asleep right now and slept 12 hours last night) When he is active, his recovery time is twice as long as it used to be.

We feel it is likely a combination of things.  His heart rate really doesn’t get above 115 or so and his average heart rate is in the 40s.  This in itself will cause anyone to slow down.  Top that with his 60% cardiac output from his Fontan anatomy.  And add the demands of puberty into the mix.

This may be just how his life will be. Could a pacemaker help?  Maybe.  But could that harm him too because of his anotomical design? Maybe.

Is there an underlying cause we’re missing? Maybe.

So we will wait to hear back from him next week and see where we go from here.  We may need to go back and do the stress test.  We may just let him push through it and see if he improves.  We might have to just say, it is what it is.  And let the boy sleep.

I am not sure how I feel about it all. Part of me says if, it is what it is and this is what his life will be like from now on, I knew this day would come, just not quite so early.  We knew he would start slowing down and his heart would not be able to  manage the demands he puts on it. So that’s a little disheartening if that’s what it is.

If he needs a pacemaker, that’s a whole new set of responsibilities and limitations for him to worry about. But if it improves his quality of life, then that’s what we need fo do.

I just have to remind myself it could be worse.  He is in relatively good health, his liver seems to be doing ok, his heart function looks decent, his lungs are junk but nothing we can’t deal with, and he gets to lead an easy and adventurous life. Because we designed it that way for him. Let’s get as many as those peak life experiences in as long as we can, because that opportunity will not always be around for him.

Dr. Z seemed pretty excited for him to have gone scuba diving and was glad to hear he did so well.  He said he only had a couple of Fontan patients that had attempted it.  And he asked what his next adventure was going to be…skydiving?  Of course Kaston said yes, one of these days!

So, we’ll just keep on keepin on until we hear differently!






Snydertime Update

Gonna try this blogging thing again…since I tend to be long-winded. Hoping to keep it more updated, especially as our family enters into another new phase in life!

Totally missing my kiddos tonight and been a pretty big funk today! Probably why I wanted to hop on here and share some thoughts since I have no one else to talk to (Bob is working…more on that later)!!! 😁 Also, it’s been 6 years ago today that we had Debbie’s (Bob’s mom) funeral.  She died on our 14 year anniversary, so each year is bittersweet for us on June 7.  Grief has a strange way of showing up unexpectedly and both her and Drew have been heavy on my heart lately.  I think it’s mostly because I feel bad for Bob no longer having any of his parents. And I hate that my kids don’t get to know them the way we did.  I know they both would be so proud of our kids and totally involved and supportive of them. I miss that relationship so much and am grateful that my parents have the ability and means to do fun things with the kids and spend quality time with them.


Debbie in the mountains, one of her favorite places

Got to facetime Korah for awhile tonight. She is having a great time and making friends from all over the world! I was able to meet her friend from Slovakia tonight.  There are several other countries that some of the counselors and campers are from also! She is having a blast teaching her campers archery and is doing quite well herself, earning some sort of medal for something?? They played softball today and went for a swim in the Guad (Guadalupe River) and can’t wait to serve us dinner “family style”. She and another counselor are in charge of 8 girls at meal time and have to grade them on their table manners!  It was great seeing her smiling face and interacting with all of her new friends! She seems very content and happy and well adjusted.  She has had some difficulties with a pretty massive heat rash on her feet and legs but seems to getting it under control.  It happened to her when we were in Mexico too.  She was pretty miserable a few days ago but it seems to be subsiding.


Haven’t yet heard from Kaston, as they are off the grid with no service. Briefly talked to the parentals the other day about the storm that hit their house. But am sure he’s having fun up in the mountains of Arizona riding dirt bikes and hanging out with my parents, my brother and his family.

Other #SnyderTime news…Bob is back on Group, meaning he is back to shift work…4 on/4 off…month of days/month of nights. It will definitely be an another big adjustment for our family again, but there are positives to it as well. Always gotta look for the positive, right??!! Glad I have my pups to keep me company at night!!


Thanks to the Ishams for having me this week-end! Was so good to be back out on the water, even if it was windy. Had a great time with new/old friends! Looking forward to spending the rest of the summer with friends at different lakes all over!  We of course have friends here at Tanglewood, and then the Ishams at Ute lake in NM, work friends at Possum Kingdom, and then our Jones friends up in OK we hope to visit at a lake near them!


Was itching to book another vacation the other night, so we booked our next family vacation!  Headed to Playa del Carmen in Nov for 6 nights, 7 days with the kids and a group of friends! Super excited to be staying at another 4 Diamond resort.  We aren’t traveling quite as much this year as we have in years past because we’re doing an Alaskan cruise next summer for mom & dad’s 50th and there’s talk of maybe Scotland next fall since we didn’t get to do a 20 yr anniversary trip this month (Bob’s work stuff got in the way). Those are pretty big trips so we had to scale back this year. Plus mine & Korah’s London trip was a big one too. We just so love exploring new cultures and new food and new experiences!! And we of course are always looking for people that wanna come with us and wonder how we travel like we do! We can definitely help fulfill some of the items on your bucketlist!! We have ways to make it happen for you just like us!


Our house is still for sale and haven’t really had many showings.  There are about 30 houses for sale down here right now and nothing is really moving real estate wise for some reason. But “they” are predicting the market to improve within the next couple of months. As far as our plans go, still undecided! We may build another house down here at LTW but are looking at maybe building something over at the neighboring River Falls community as well. Just will depend one what’s available when that time comes!

Got some exciting new stuff in the works but gotta keep a lid on it for awhile! Can’t wait to see how it will affect our future! We definitely have technology to our advantage on this one!

Thanks for reading the #SnyderTime scoop! Until next time!


Thanks for all the support y’all! Quick update…Korah is still down and out so I called Teladoc today-one of our many benefits of our travel club membership – crazy, I know! It didn’t cost us anything to get a doctor to call me back – within 5 minutes – and get her a prescription called in. Been doing essential oils too so maybe she will be better in a couple of days.  She has been on the couch since Sunday night!

Kaston’s Holter results will be sent to Dallas for review that we will discuss next Friday during our visit. We are not expecting any surprises heart wise that we aren’t already aware of.

Other issues to address will be liver damage, as new studies and information kids/adults with the Fontan circulation have some degree of liver damage, whether just scarring of the liver and gradually fibrosis and full blown cirrhosis of the liver. Some of the top centers like Children’s Boston and CHOP (Philadelphia) are starting screening immediately on all Fontan patients and some centers their standard is 10 years post Fontan.  He is 11 years post Fontan. We are not sure if Childrens Dallas is screening the liver or if they even have a program in place yet.

So many times these kids are referred out to bigger more advanced centers (like when we referred to Texas Childrens in Houston for neuro issues). Dallas is great and a top center in the nation but not as big as TCH or CHOP.

Here’s a simple explanation from Mayo Clinic.

I have read so many of these hospital sites and read studies from so many journals it would make your head spin.  One of the last reports indicated 100% of Fontan kids/adults screened have a certain degree of liver damage. Problem is, they know what’s causing it but have no way of fixing it, except for transplant, when it is completely failing. By then it puts so much pressure on the heart that many end up in heart/liver transplant.  A few years ago Kaston had some blood work come back with terrible numbers on his liver and it freaked everyone out. They chalked it up to bad test results.  Now I am beginning to wonder??

Of course we have only been seeing this information come out over the last year so this is all very new to us, as well as the medical community.

Alot to wrap your brain around, and the source of some anxiety in mom!

Overall we think the visit will go like they usually do, EKG, Echo, see the doc, answer/ask questions on both parts and we’ll be outta there!



Snyder kids

Please keep my kiddos in your prayers as you go throughout your day today! Korah has been pretty sick all week and not getting any better. She told me she wanted to go to the doctor tomorrow if she isn’t any better by then.  And that’s saying alot because she absolutely despises medicine and shots.

Kaston has a 24 hour Holter monitor strapped to his chest like a mini bomb- it’s basically a portable EKG machine monitors his heart rate and rhythm for 24 hours, as he is at risk for abnormalities and his heart rate is typically Bradycardic, meaning slower than average and his Dallas cardiologist likes to look at that once a year.  This always affects him emotionally. I guess it just brings his CHD to his forethought constantly and affects his attitude on a big level. 

He and I will be headed to Children’s Dallas next Thursday for his annual visit. Letting the familiar anxiety settle in a bit.

Snydertime 2016

Well, this blog thing hasn’t really been used in quite some time, but I really would like to develop it a little more. As alot of you guys know, I enjoy writing so whether you read any of this or not, it’s really a great way for me to jot some thoughts down and gives me the ability to organize the craziness that goes on inside my head that keeps me up late at night!  Sort of like a journal you could say.  And if it can help any of you, then that’s just adds to it! It is my #1 goal in life to help people and have a servant’s heart, so maybe this can just be an extension of that for those that want to follow along!

So as I was scrolling thru FB land, my Time Hop popped up and 1 year ago today we were skiing in the Rocky Mountains in New Mexico!  It was the first time we had ever been as a family together.

The year before on this day, Bob and I were in Kentucky enjoying the distilleries of the Smokey Mountains.

And here we are year #3 headed home from Orlando.  Twice in the last 7 months. Out of the country 4 times in 2 years. Countless vacations and bucket list item after bucket list item checked off.  Who would have ever thought this would be our life?!

The last 10 days has been an incredible experience and full of reflection, goal setting, personal development along with preparation for our future.

One of the best things about the last 10 days is that I got to have so many peak life experiences with my mom. She is checking bucket list items off of her list too! I am so so blessed that she is able and capable and willing to experience new things, even at the young age of 66!! And I am grateful I have a dad that allows her those opportunities to spread her wings. It’s what makes their marriage work, for more than 47 years. She is adventurous and spur of the moment…a free spirit. He is steady and hard working and content. An awesome combination that works. It was such a great experience her sharing new things with her grandkids and especially her love of Star Wars with Kaston. And then of course wearing matching John Lennon shirts with Korah! Her time at Give Kids The World was very fulfilling and I am so glad to have shared that incredible experience with her. Just a great time overall!

So where am I going with all of this?

A little over 3 years ago, our lives changed forever in yet another direction that we had not planned for.  Crazy how when you give over control to God to help you find your path, destiny and purpose, where He will lead you. As you all know Kaston was granted a Wish through Make A Wish, and it was to go to Disney World.  It was something, at that time in our lives, that we never even thought would ever be a possibility to ever provide for him. And man was it an incredible experience that can ever be or will be recreated again, nor would I want it to be. It was such a special time for our son and our family and we will forever be indebted to Make-Wish for what they did for us.  Kaston will always be a Wish child and will always carry that throughout his life. And we as a family will always be a part of MAW as well.

What it did for us, however, was to open up a world of possibilities for our family and put in us an intense desire to travel more. And for us to volunteer more. We basically opened up our hearts and mind and asked God for the desires of our hearts and for Him to reveal His purpose in our life and boy has He delivered since!

For us to have had the opportunity we have had this week has made things come full circle since that first Florida experience and I can’t wait to see what the next chapter in our life will bring us. We are on the path to our destiny and purpose God has placed in our lives and I have no doubt the future is going to bring so many more opportunities our way.

The fulfillment we experienced in volunteering at Give Kids The World far surpassed anything I could have ever expected for myself and for my kids.  To be able to serve other families like we were served 3 years ago is priceless.  It taught our children compassion for others and is developing a servant’s heart in them at a young age, something I only started learning in my 20s. Those things can only be taught by experiencing it. You can talk and preach it but until you do it, it won’t ever develop.

And honestly, even though when we left there 3 years ago we really wanted to go back to volunteer,  we figured it would be maybe 20 years from now that we would have the opportunity to do so, like when we retired! Who would have ever thought it would be a short 3 years later??!!! But sometimes when opportunities present themselves, you just gotta run with it! And for my mom and her friend to have just a little taste of that made it even better! Because you can talk about and show pictures about places far and wide, but until you are actually EXPERIENCING it first hand, it just won’t have the same impact.

It’s the same as travelling.  You can read about something or even see it on TV but until you actually see it, feel it, smell it, taste it, EXPERIENCE it, you really have no idea what it is like.

Something I have been reflecting on the last few days, and actually has been heavy on my heart for quite some time, is knowing that not everyone has the ability to travel like we do. Or do you? We have so many people that have questioned us, the good, the bad and the downright ugly, about why and how we travel so much. But I want you to think about something for a minute.  Most families I know have something they enjoy spending their “extra” money on.  It ranges from shoes and purses, clothes and jewelry, to maybe a nicer house or nicer car.  So many families have their kids involved in sports (I know families that spend THOUSANDS on their kids sporting activities). Many people I know enjoy camping and have expensive campers, toy haulers, RVs and the usual toys that go along with that lifestyle, like boats and motorcycles and all terrain vehicles. Some ladies I know spend a TON of money on getting their hair and nails done and have the best make-up out there. Some people choose to spend lots of money on alcohol or eating out or tatoos. If you add up some people’s ink, it would provide for a pretty awesome vacation, right??!! Then there’s the gym people that have gym memberships and the best and most expensive nutrition products on the market. And of course don’t forget about the people that have the newest phone or gaming system and have to buy the newest and latest version the week they come out and spend more on their phone and data plans, video games and televisions and computers and tablets than we do airline tickets. Or maybe sending your kids or yourself to college has been a priority, which is perfect if that’s what YOU want. I just see it as funding a TON of peak life experiences instead! College just isn’t our thing…but that’s cool if it IS your thing. Same with public school. It’s just not our thing.  Then there’s the guys that spend a fortune on hunting and fishing and golf. Or maybe a Harley. Or maybe gambling on your favorite sports teams.

So really, isn’t it more about where you personally enjoy spending your own money? It doesn’t necessarily mean you can’t afford to travel, it just means you choose to spend your hard earned cash else where!  And all of the above is ok! It’s your decision to invest in what you feel is best suited for you and your family and what your interests and hobbies are.  We spend our extra money on travel and on a boat and time at the lake. We truly enjoy meeting new people, exploring new places, having new experiences. When was the last time you did something for the first time?? Our kids aren’t in sports, but what most parents spend on sending their kids to sports camps, club ball, rodeo-ing, 4H or whatever else, sends my daughter to Costa Rica or Europe!

Have we always been this way or felt this way?  Heck no!  Have we changed??!! Heck yes!!  Our lives have changed, our needs and wants have changed, our goals and aspirations have changed. We have had very very different life circumstances happen in our lives than most people we know and that has molded us into totally different people, for which we are thankful for.

Besides that we NEVER EVER pay what most people do to travel. We have found a better way. We love getting free rooms, free flights, and deeply discounted trips, excursions thrown in, etc. Sometimes our trips are 100% paid for.  So why wouldn’t we, right? Where in the world are the Snyders, right?? We just have the deal. And it helps us with our passion and life goal of fun, freedom and fulfillment.

It’s simply what we enjoy doing with our family.  It’s our hobby.  You guys brag on your kids games or events or grades or accomplishments or jobs or your new purse or new jewelry or that big fish or the one that got away or your house or your car or your cute nails and new haircut.  Ours just happens to be travel. It’s who we are and what we do.

I do sometimes have guilt about how we are able to do what we do. I know the struggle is real for so many families. Believe me…we’ve been there!

Sometimes in life, however, you just have to learn to trust God to provide direction for you and He will puts things in place for you.  God wants to fulfill the desires of your heart!

What are your desires?

What are your goals for your life?

What are your gifts?

Where do you see yourself in 5 years?

In 10 years?

In 20 years?

Do you have vision for your future?

Do you know what your purpose is?

Does your purpose, your future and your goals align with each other? Are you and your spouse on the same page? Do you know each others dreams and goals and desires? Do you have a bucket list to fufill? How are you gonna accomplish that?  Do you have a plan in place? Or are you just gonna go to work day in and day out and let life deal it’s cards to you for the next 30-40 years while the world goes by?

Yes, this past 10 days was incredible. The parks, the volunteering, being in Florida, have all been incredible.  Saturday and Sunday was astounding. I encourage each of you to grow and challenge yourselves mentally and spiritually. What are you filling your days with? Do you watch mindless television, stupid youtube and facebook videos and sporting events on TV (aka Income Reducer). Or are you investing in yourself and your future? I never knew what personal development was until 3 years ago. I didn’t understand that there were books out there that you can read that can help you to think and grow as a person, as a leader and, if you choose to be, successful. I had the misconception that the only way a person could become successful in life is if they went to college and got a degree!  And that wasn’t us!! I just thought that since we never completed college and got a degree that we would ever be successful.  And actually I have found it to be quite opposite!  I would say that 95% of the most successful people I know personally didn’t go that path!  They are outside the box thinkers and taking risks drives them to become more successful.

Low and behold, there are other ways to become successful in life! Choose to surround yourself with GOOD and motivated people and it will change your life! Because you are the average of the 10 people you surround yourself with!

So if you want something to change in your life, then you’re gonna have to be willing to change and invest in yourself to make those changes.

Here’s what I know to be true. You are in charge of your destiny. Who is guiding it? Are you just letting life happen or are you going out and MAKING things happen for yourself?

I have learned that all people can tell you is no. And if you have an idea or a thought or a dream or a vision, what’s keeping you from fulfilling it?? Is it money, or resources, or an unsupportive spouse, or time?  Whatever it is, you actually DO have permission to make it different for yourself!

Moral of my story…be who you wanna be! Travel the world if you want to!! We do!  And would love for our friends and family to come along, if that’s your desire! Are you tired of life just happening and passing you by and wishing things were different?  Well, who in the world told you that you had to live a mediocre life?  Some of you may have a great life with no struggles and are content and happy and desire nothing more, nothing better and are 100% happy with every single aspect of your life. I personally don’t know anyone like that, so if you are that person, I wanna talk to you and see what your secret is! Of course, I am blessed beyond measure and have no real complaints in my life, but I feel there is ALWAYS room for improvement and for dreaming and aspirations and to become a better human being overall. And of course, to become everything I am destined and called to be.

That is all.


Where Dreams Come True

Where Dreams Come True

Side Note:  if you don’t want to read my long-winded tendancy style of writing my emotions and details…scroll down to the bottom to see the pictures – it’s long too.

Hope everyone had a blessed Christmas! We had a simple Christmas yesterday with Bob’s dad Drew and his brother, Matt. My folks are out in Phoenix with my brother in his family for the holidays and should be home soon! The kids are super excited to see their grandparents and have yet another Christmas (which means more presents!)
We have actually been celebrating Christmas for a month now! November 26th we embarked on an experience that was most definitely once in a lifetime!
There are just too many emotions and experiences that we had to describe it in words. The best way to describe it is that we felt like celebrities everywhere we went! We were taken care of so very well, ate like kings and the magic of it all…just so unbelievable.
Give Kids the World is like no other place you EVER have been or ever will go. It is completely a fantasy world that you live in, for 7 days. There is so much joy in that place. I have never in my life experienced true joy as I did while we were there. Granted, there have been joyful moments in my life…wedding day, birth of kids and such, but nothing like this. I can’t tell you how many times I was in tears because of the pure joy of the moment.

I would love to write out everything we did and the emotions we experienced, but we would be here for a while! Here are the highlights. I will say I always thought “Disney World, Where Dreams Come True” and “The Happiest Place on Earth” was so cliche. But now I understand it. Dreams do come true there and it is one of the happiest places I have ever been in my life. I don’t know whether it was just Disney World or just all of it. Make-A-Wish, Disney, Universal, Sea World, the Ocean, Shaun Murray, GKTW made it where Kaston’s dreams came true and brought us to one of the most happiest places we have ever been.

Note: Disney World is actually 4 parks – none of which we really understood until we were there and Bob still doesn’t get!
Magic Kingdom = the Castle
Hollywood Studios = the Hat
Animal Kingdom = the Tree
Epcot = the Ball

Day 1 Travel to Florida
Being greeted with a sign with Kaston’s name at the airport
Our villa – it was decorated for Christmas!
Day 2:
ice cream after breakfast
Animal Kingdom – The Lion King (I cried during “Can You Feel the Love Tonight”. We played that song during our wedding (a really long time ago!)
Hollywood Studios – Star Tours and Kaston getting to fight Darth Vader during the Jedi Training
ice cream when we got back to the village
Day 3 Universal Studios & Islands of Adventure
Hollywood Rip Ride Rockit – 17 stories straight up while Motley Crue is blasting in your head followed by the most awesome roller coaster ride ever!
Kaston got chosen as a volunteer for Animal Actors on Location.
Ice cream at the village
Day 4
Ice cream after lunch
Boggy Creek Boat Ride and Relax at the Village
Saw a bald eagle and alligators in their natural habitat, held a baby gator
The Village…again, no place like it. Kids swam, they did their magic pillows and Kaston did his Castle of Miracles Star, Korah got a manicure and they did tattoos, rode on the carousel, played putt-putt, pool, video games, had Christmas Dinner, ate ice cream, met Santa, got presents, had a parade, made ornaments, cookies, snow cones, played in the snow, danced. I cried, again. To see the joy in the children’s faces and within these families is something I have never experienced. The volunteers that make it happen…so much joy. So many of the kids are in wheelchairs and have obvious physical and mental impairments. But to see the pain released and the outward joy of so many people that struggle just to survive is an amazing experience. We are blessed.
Day 5
Eric from Mauiva Air Tours took us flying over Orlando!
It was amazing and Kaston flew the plane most of the time…seriously. We flew over Epcot and the others and then headed to Epcot, which was my favorite park by far. They were all amazing, but Epcot is geared more towards adult in my opinion.
Highlights…Mission Space, Soarin’, the food, margaritas and daquiries, the most amazing fireworks show EVER! Think about the best fireworks show you’ve ever seen. Now, multiply that by 1000. And to watch my kids faces and their smiles…there’s not enough money in the world to ever recreate that magical moment in time. We did not want to leave Epcot. We sat for awhile at the front and just basked in the joy of our hearts. And had our picture taken.
Day 6 Magic Kingdom
It’s nostaligic. We did the nostalgic rides…for me. I wanted the Jungle Cruise experience, the Dumbo experience and the Tea Cup pictures, like you see on the commercial and we have all wondered and dreamt about since we were kids and understood what Disney was. So my family went along with it. And it was fun. Not thrilling fun, but nostalgic fun. We loved Space Mountain and rode it twice. Just being there was fun. It was a little crowded, as they were filming the Disney Christmas Parade and lots of celebrities were there (which we did NOT get to watch yesterday and I forgot to TiVo it…stupid stupid stupid!) but it was so Christmassy, so amazing. Again, such a fabulous fireworks show…it’s called Wishes. How appropriate! Tears for me again. Loved the Big Thunder Mountain Railroad roller coaster. Only got to ride it once because it was down for part of the day. Would totally love to have rode it again. Hall of Presidents was really neat and I was so proud that my kids new every single president, in order. Unlike the man behind us that didn’t even know who Abraham Lincoln was.

I will say this about Disney. No one, I mean No One, does it like Disney. Their staff (or cast members) are amazing, their facilities are amazing, their attention to detail…amazing. This may seem stupid, but even their bathroom facilities were the best. Every door shut properly, they were always clean, always had toilet paper. More companies and businesses need to take note of how this works. Disney employs over 65,000 people in central Florida! And they do it right.
Another great thing about ALL of the parks we went to was that they treated us like royalty. Kaston was given a GKTW button with his name on it with our village dates. That was the magical button. It gave us special access to wherever we wanted to go. We never waited more than 10 minutes for any ride. We had special seating everywhere we went…front and center. We were IN FRONT of Fast Pass most of the time, or simply ushered to the exit where we were promptly put on a ride. Alot of times, it was, “Right this way, we’ve been waiting for you!” GKTW has an amazing partnership with the Disney, Universal and Sea World corporations and every.single.person we came into contact knew exactly who we were.  Not us as the Snyder’s, but us, as guests of Give Kids the World.  From the parking ticket taker (which of course, we had complimentary and at the very front of every park), to the ticket turnstile workers to the photographers that took tons of pictures of us, complimentary of course.  We were definitely spoiled and it will be hard to go to another theme park again!

Day 7  Departure and Sea World

We didn’t want to leave.   I cried.  Again.  Not because I was sad, but that me and my family got to experience what we did and that so many people volunteered their time, money and hearts to make it happen for us.  Not just us, but for 100,000 children and their families.  We ate breakfast, had 1 last ice cream palace visit and headed out after visiting the House Of Hope.  A place that talks about Henry Landwirth’s amazing story of being a Holocaust survivor.  A place of dedication to the hundreds of companies and individuals that have donated money and hard work and where a hand shake actually meant something.  A place of dedication to the thousands of individuals that volunteer their time, every single week, to make this happen for families like ours.  Although we had to check-out, we will definitely be going back in the future (which we are always welcome to visit at any time since we are now considered alumni) and we will volunteer.  I am already looking forward to it.

After we left, we had to take care of the rental van to extend it to the next week and we headed to Sea World.  It’s Bob’s all-time favorite park.  We had so much fun!  Kaston, FINALLY got the nerve up to ride a big roller coaster, the Manta.  He cried the first few seconds and then it was pure happiness and excitement from there.  We rode it and the other big coaster twice.  The shows are always great, of course.  We got to feed the dolphins and pet the sting rays.  We went on the Polar Express simulator and sat front and center at the Shamu Christmas show, Miracles.  Again, so appropriate.  We weren’t in the splash zone, we were in the SOAKED zone.  Great fireworks show, again, and peppermint hot chocolate. 

We were changing out of our wet clothes in the parking lot trying to decide where to go from there.  We were winging it the rest of the week.  Which, if you know me, kinda freaked me out a little.  It was 10:00 at night, I had no reservations and had no idea where we were going!  So, we decided we wanted to watch the sun rise over the Atlantic so we drove to Cocoa Beach!  We found a great hotel right next to the pier and fell asleep with our balcony door open to the sound of the waves crashing ashore!  My familie’s first ocean experience!

Day 8 Cocoa Beach

Bob arose with the sun and caught his first glimpse of the ocean.  He went to the pier and had coffee and chatted with the fisherman.  He absolutely loved it.  We did breakfast and headed down the A1A (Beach Front Avenue) to find a cooler and go to Ron Jon’s, the largest surf shop in America!  It was our kinda place!  We hung out on the beach all day, played in the surf, the kids did some boogie boarding and Korah & I collected sea shells.  She even found a complete sand dollar.  We went swimming in the heated pool later (the ocean is cold!) and cleaned up for a fabulous seafood dinner on the Pier.

Day 9  Woke up with the sun rising again of the Atlantic.  We wanted to hit the Kennedy Space Center for a few hours before we left the Space Coast for Orlando.  We only had 3 hours there and it was really really cool.  We could have spent all day there but had to get back to Orlando for a 2:00 appointment with professional wake-boarder, Shaun Murray.  I had been emailing his wakeboarding school since we found out we were going to be in Florida.  During the time that we had available, there wasn’t going to be anyone at The Boarding School, so Shaun emailed us and said to just come by his house and we could hang out for awhile and he and Kaston could ride together.  So we headed back to Orlando and found his house.  Of course it was gated, so he rides his skateboard up the drive-way to meet us at the gate and we follow him to the back of his house.  We are sitting in Shuan Murray’s drive-way, staring at his boat dock and lake.  What a very surreal feeling.  His wife, Kerri, and their little girl were waiting outside with professional wake-boarder Emily Copeland Durham and her daughter.  Emily is one of Korah’s favorite riders as well.  It was just so crazy that we were sitting there visiting with these athletes and their families that my kids have pictures and autographs on their walls of.  We headed out to the dock and hopped in Shaun’s ($108k) Nautique.  Aaron Perkins was driving…he’s another big name in wakeboarding and another one of Shaun’s neighbors, as is Emily.  So Shaun went first and was just doing his thing, throwing out tricks like it was nothing!  Tantrums and raleys and backside 180s and half cabs and whirleybird 540s (which he invented along with the bell air, egg roll and tweety bird)  CRAZY!  So then he busts and tells Kaston to come on out in the water with him.  So they ride together for awhile.  He teaches him to deep water start and to switch and is just instructing him out there.  He falls a few times and as we’re passing by he tells us to get our cameras ready…he’s gonna do a Raley over Kaston.  Got the video – got the picture!  Amazing.  They called it quits after that as the water was pretty cool and Kaston was turning blue.  We headed to the dock and he asked if we had plans, of course which we did not – again!  He asked if we wanted to go back out in the boat because he needed to do some filming for a movie he was making.  So he got his RC airplane that was rigged up with a camera and they went out and did some filming.  I stayed on the dock and just took it all in!  Once they were done filming, we just hung out.  I visited with Kerri and his daughter while the kids jumped on the trampoline with Shaun.  We finally figured we needed to head out so Shaun busted out sponsor stickers and autographed some pics.  Which by the way, his sponsors include Nautique, Fox , Jet Pilot life jackets, Hyperlite, Cobian, HDX, Springfree Trampolines, the Boarding School,, 2012 Detention, Performance Ski & Surf.  And he has his own line of boards, bindings, ropes, rope handles, boardshorts, clothes, helps design the boats.  He is the Tiger Woods of Wakeboarding.  And we went to his house and rode in his boat and Kaston wakeboarded with him!  This day was a wish in itself (actually, it was Kaston’s back-up wish when Make-A-Wish came to our house!)  So very grateful to Shaun and Kerri and Aaron for making it possible. 

After leaving Shaun’s, we headed to the Gulf of Mexico.  Can you believe you can drive across Florida in 3 hours?  That’s just crazy to me!  We drive 3 hours and are only 1/2 way to Dallas!  Clearwater Beach was our next destination.  We stayed at another hotel on the beach.  We ate at Frenchy’s…on the beach, and it was the best seafood I have ever had in my life!  Don’t know if I’ll ever be able to eat at Red Lobster or Pappadeux ever again!

Day 10 Korah figured out that there was an aquarium at Clearwater and come to find out it happen to be the home of Winter, the dolphin from the movie Dolphin Tale.  So we decided to check it out and it was an extra special unexpected, unplanned treat for us!  Clearwater Marine Aquarium is basically an animal hospital and the place where they filmed Dolphin Tale.  We basically were at the movie set, talked to cast members and saw Winter, up close and personal.  We took a ferry over to another area where they had the props and all the stuff related to the movie.  After that, we did a little shopping and headed to the beach.  Bob went and got snorkeling gear from across the street and Korah snorkelled, looking for sea shells.  It was pretty cold so Kaston snorkelled in the heated pool!  It was a nice relaxing afternoon, except for the sea gulls that attacked me and hit me in the head!  We watched the sunset down by the pier and looked at all the street vendors and entertainers and had yet another amazing dinner.  Back at the hotel, we hung out by the pool, which was on the beach, that had a small outdoor bar.  The kids were swimming and we were sitting on the beach at the bar having a beer – all within 20 yards from each other!  What a life! 

Day 11  We headed back to Orlando and did some shopping and checked into Disney’s All Star Music Resort.  What a fun hotel.  Again, no one does it like Disney!  The kids swam in the piano shaped pool and then the guitar shaped pool.  We headed back to our Rock N Roll hotel room with 2 story guitars on the front of it.  Headed to Downtown Disney for dinner.  We could have spent all day there if we had only known what it was!  They had shopping and dining and boat rides and arcades and live music.  It was great!  We rode a giant hot air balloon, Characters of Flight, that goes up 400 feet in the air.  Kaston wanted to do Disney Quest, the giant arcade with simulators where you can create your own rollercoaster and then ride it, but we didn’t have enough time.  It was a fabulous evening to end our once in a lifetime vacation.

Really, there are no words that can begin to describe what we got to do and experience.  I wanted to tell you all about this because what Make-A-Wish does and what Give Kids the World does is so important.  I simply can not wait to get involved more with these organizations and can only hope that I can be a part of helping a chronically ill child’s wish come true some day.  And I can only hope and wish that one day in the future, we can plan another family vacation to central Florida, and volunteer at Give Kids the World.  So if you ever want to support something, these 2 organizations are at the top of the list (of course, next to Mended Little Hearts!)  They’ve got a good thing going on and we are so very thankful that we have become a part of  and been blessed beyond words by these organizations.   

Without further ado…enjoy!

So Thankful…

Where do I even begin? Everyone has been posting what they’re thankful for since November 1.  I chose not to, well, because we do a “Thankful Journal” for school, which has now become a “Prayer/Thankful/Answered Prayer Journal”.  I think it’s a great movement and I love reading what everyone is thankful for.  And I believe it just opens the door to continue that mindset year round and for others to follow suit.  And I can’t possibly fit everything I’m thankful for in the month of November.  However, I will tell you about one of the very most important things in my life that I’m thankful for, that was born 10 years ago today. 

10 years…Ten years ago our lives changed forever. A whole decade has gone by since we’ve heard the words no parents ever want to hear from a doctor, “Your baby will need heart surgery in order to survive. Not just 1 surgery, but 2, guaranteed.  We do not know how long he will live, if he will live, and if he does live, what type of life he will have.  He has a something something heart something.  Mumble mumble blah blah blah.”  Oh my gosh I hear Charlie Brown’s mom!  Well, maybe not in those exact words, but that’s what I heard that day while I wondered where they took my brand new baby and why he was so blue.

How in the world can one child change a person’s life so dramatically in ten years? I’m not talking going from having no kids to having a new baby, but really CHANGING a person’s life…the direction of what was to be to what will now be.  I sometimes wonder where we would be if Kaston had been born with a healthy heart, a whole heart. I have no doubt that we would NOT be where we are at in this life if it wasn’t for a life-altering course of direction because of the birth of our 2nd child. We would be walking through the rigors of life with a warped sense of reality and truth. Bob would probably still be a cop, I most definitely would not have chosen to homeschool my kids (ha! who would have thought that would ever be in my future?) and we would not have the faith we have by witnessing so many miracles in front of our eyes or leaning on God when we had absolutely no one else in this world to lean on.
Instead, we have gained so much. We see the world in such a different perspective than most.  Not saying it’s a right or wrong perspective, just different. Bob changed careers to have better insurance and so he could provide for his family better. I got to be a SAHM for awhile, worked part-time and am again a SAHomeschoolM! We have met countless other amazing families that we would have otherwise had no connection with or had a reason to cross paths. We have a better marriage and strong relationships with our kids.  Our 13 year old daughter has such a servant’s heart and has huge desires to help others. Our son is tender-hearted, both physically and emotionally. Jeez, there’s so much to be thankful for and how Kaston changed us for the better that I could go on all night.

You may ask, however, at what cost? Is it all worth it? I don’t know that answer. I hate that he has gone through more pain and suffering, physically and emotionally, than most of us can ever possibly understand. That I won’t deny. But as we say, It is what it is. He has sacrificed so much. We have sacrificed SO MUCH. And will continue to do so for the next 10, 20, 40 years if need be. So, I am thankful for the blessing of that little baby 10 years ago, healthy or not.

Here’s a poem by a heart mom friend of mine I met online in about 2004, right before Kaston’s 2nd OH surgery. She is an amazing writer and I love to share my own thoughts through her poetry! (cuz frankly, she’s just so good at it!)

Sometimes I have those “moments”,
When I think…life’s just not fair,
Then I think of all you’ve been through,
And I see the scar you bear.
A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?
And so I trace that “perfect” scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.
What have you taught us?
You’ve taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don’t always go as you’ve planned)
People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)
Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, “Wow God”,
We just never know what lies in store.
If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be…
Much stronger than I thought.
It’s okay to be afraid,
And it’s alright to cry,
It’s okay to feel lost sometimes,
It’s even okay to ask…why?
You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.
No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you…
An ordinary life.
You’ve taught us to love one another,
(Helping each other to cope)
You’ve taught us compassion for others,
You’ve taught us to never lose hope.
You already have quite a story,
Which you can someday share,
And I can see it’s beauty,
Behind that scar you wear.

~Stephanie Husted

Even though I talk way too much about Kaston and his heart business on a regular basis, I do realize there’s more to him; actually he’s quite the complex little man.  Yes, I think about his broken heart every single day.  But it is hard not to when the scars are evident and the responsibility of meds ARE every single day.  Kaston, now age 10, is quite the guy! He loves music, his sister and nerf wars with his friends. His favorite color is blue (he says it’s because he was always blue when he was a baby) and he would drink root beer every day, all day if I let him. Sometimes I think he’s going to starve to death and then he downs an entire cheeseburger. He loves being in his underwear and knows more about guns than I do. Cherry donuts are his preference for breakfast, lunch and dinner and his left-handed writing would make any teacher cringe. He is immature for his age but old in his soul. He loves wholly with his half a heart and is so very afraid of insects, spiders and everything of the reptile species, especially those little dragon frogs called horny toads. He has the coordination of a star football, basketball and baseball player, instead perfecting his skills in wakeboarding, rock climbing and karate (and maybe his knowledge of the Vietnam War or the frequent song he sings “Yankee Doodle Dandee” – the long version.)  He is and that I’ve just had to learn to live with. He cuts a rug like no other and his best friend Thaddeus, he’s his “Mexican” brother from another mother. (and I’m Thaddeus’s white mom, fyi, and the fideo that his mom makes is Kaston’s favorite thing to eat at their house!)   He still sleeps with his stuffed puppy Bassil (shh, don’t tell him I said anything!) and isn’t afraid to jump off of cliffs at the lake.  He wants to be a Navy pilot and Top Gun is his favorite all time move – for now.  He just recently figured out he would never be able to be in the military (one of those discussions that is NEVER the right time to have) and said he would settle for just being a pilot of some sort if his heart could handle it, or maybe just own his own gun store.  He wants to know when he will get married and talks of “when I have kids” and “What if I had a boat with 100 motors!”  He hates to read, and quite frankly stinks at it, but can recite all the presidents and explain what Hamburger Hill was and show you where Columbus actually landed (San Salvadore).  He hates sleeping by himself and still likes to snuggle, he loves live music and helping his daddy gut a deer.  There’s so much to him.  And I am THANKFUL and blessed to be his mom.

So…enough of the sappy stuff!  Let’s get onto the real business!  First off, Kaston’s cardio appt.  I think I pretty much updated on FB what went on, but will recap again.  After his routine tests of EKG and Echo and a very lengthy visit with Dr. Z, we’re still on that path of hurry up and wait.  He had ordered a 24 hr Holter monitor before we went down there and his rates are still nowhere where he needs to be.  His low is low 40’s is high is 180’s.  He will continue to slow down and once he is in the 30’s then it will be time for this dreaded pacemaker.  We talked of liver failure and his complaints of his “gut” hurting and neurological development issues we’ve noticed since very young but really didn’t know what or why.  Now we know the what and why but still aren’t really sure where to go from here.  Developmental psychologist and therapists really don’t fit into our schedule and are they really necessary?  Or are we being selfish and in denial that there’s more to it than what we think and have just become accustom to certain behaviors and normal little boy struggles, like sitting still for long periods of time.  Who knows – as long as we see progress, hard work and determination, we’re good for now.  We figure God will lead us in the direction we need to go.  He hasn’t had any more episodes of spurratic heart rates and hasn’t complained of his gut hurting anymore, so hopefully those were just random things and he’s being honest (because he’s not so honest when it comes to what his body is doing – he is very scared of surgery now – I guess it comes with age and understanding?  Or maybe he just doesn’t pay all that much attention and doesn’t think that when he can’t breath or he gets lightheaded is anything to worry about! His lightheadedness comes with insufficient bloodflow to the brain – duh Kaston!  Dont’ you know that?!) So we go back in March and check him again.  I have a feeling that we will be doing this for awhile.  We know it’s coming but just don’t know exactly when.  So we will just try to keep on keepin on without any worries – yeah, ok.

S today is Thanksgiving…we celebrated yesterday with Bob’s dad and brother Matt.  So weird cooking for just 6 people.  Our norm is at least 15-20.  Mom & dad are out in Phoenix with my brother and his family and Bob’s gotta work (he’ll be up in one & 1/2 hours) so we celebrated a day early.  Kaston’s birthday is today (we celebrated that on Saturday – more later), we’re gonna decorate for Christmas and then START PACKING FOR FLORIDA!!!!

We had a dual surprise party for Kaston with Make-A-Wish on Saturday.  We were able to celebrate his birthday and present him with his Send-Off package!  The party was awesome, there were loads of friends and family there and he was so blessed by everyone’s generosity!  We served cherry and chocolate donuts and 8 different kinds of rootbeer.  By far the best party he’s ever had.  We leave on Monday 11-26 for 12 days!  We, needless to say, are super excited.  One more thing to be very thankful for!  It is going to be a jam packed schedule the first few days and then take the last leg of the trip and relax on the beach (Bob & the kids have never seen the ocean).  We will be staying at Give Kids the World; a 70-acre village created and designed by a Holocaust survivor, Henry Landwirth.  They will provide us with a “Villa” where the kids get the master suite, all meals are complimentary on site, unlimited ice cream from morning to night, activities scheduled every evening – including Christmas on Thursday, plus tickets to all the local attractions.  We will have access to 3 days of Disney parks, 2 days at Universal Studios/Islands of Adventure, Sea World and so many other things that the generous people of Central Florida have donated.  We were told to bring an extra suitcase just to bring gifts from GKTW home.  After our 7 day stay at GKTW, we’re going to head to Cocoa Beach and the Kennedy Space Center (I promised the kids this would be the only educational thing we would do!)  Maybe spend a day or two there, maybe head to the Gulf Coast?  We also were able to get in touch with pro wakeboarder Shaun Murray and set up a visit at his wakeboarding school in Orlando at some point.  Kaston does NOT know about this!  We are all just so excited and have been counting down the days since we got the dates, 30 something days ago!

I will try and update here if time allows, but most likely will just be posting on FB, so get ready!  I’m sure you all will be Disney’d out before it’s all said and done!

Hope everyone has a blessed Thanksgiving!

The Snyder’s

A long overdue update!

So, apparently it’s been quite some time since I’ve updated this simple little blog of ours! In fact, it’s been over a year! So here’s what’s been going on…it’s  probably gonna be a long one!
Homeschool – We jumped into it head first last September and have loved it ever since. It has definitely been a lifestyle change, but we wouldn’t have it any other way. Of course, it’s been challenging at times, but more rewarding than we could have ever imagined! We are on OUR schedule and it has given us so much more flexibility to spend more time together as a family, allow our kids to progress at their own levels, and also to travel a little.
Bob had a 3 week class in Oak Ridge, TN (you know, where they developed and built the atomic bomb) and the kids & I were able to fly out there and stay with him for 2 of those weeks. We had a blast and it was simply amazing to be able to homeschool while we were there and learn SO MUCH HISTORY!
We also were able to go hunting and camping anytime we wanted, so that was great also. Korah went and spent 2 weeks with my grandma in Post, TX last fall and in May, the kids went to Phoenix to see my brother with my parents for 2 weeks. I had a MLH convention in Dallas and then flew from there to Phoenix for another week & 1/2. We recently went to Albuquerque, NM for 2 weeks for another school for Bob. And Korah is back in Post, TX for 3 weeks this time!  So it’s been quite an adventure in our travels and can’t wait to see what the future holds!  I’m hoping for a road trip to Washington, DC next fall…maybe in our camper????!!!!
As far as academics go, Kaston is doing well and progressing nicely. He still has some problem areas, but he’s getting there. There has been alot of recent research on CHD kids that show delays in the same areas Kaston has…reading, sequencing, fine motor skills (handwriting), hyperactivity – pretty much every problem we are having with him has showed up in research through the top surgeons, researchers and hospitals in the country. They believe it could be from a multitude of things, anywhere from having low oxygen levels early on in life, to being on bi-pass, to having insufficient blood flow, etc. So many things are starting to come up as they begin to study these kids. For so long, it has been, How can we keep these kids alive? And now that they’ve figured that out, it has become, What can we do to make them have a better quality of life? and Why are we seeing so many developmental problems in a large percentage of these kids? So for now, we are just working at his pace and making sure he gets enough rest and is happy.
As far as Korah is concerned, she’s done really well with her academics. She actually ended up skipping 7th grade last year and went straight into 8th. So this year she is in 9th, a year early. And it is tough! School has always been relatively easy for her. This year she is actually having to apply herself! She is very self motivated and knows what’s expected of her, so I really don’t have much that I have to help her with (which is a good thing, because when she does ask me a question, I never know the answer off hand and always have to look in the teacher key!)  She occassionally tells me she wants to go back to public school because she really misses the daily interaction with her friends.  And I totally get that.  And I know she does miss out on alot of stuff.  But she also gets to do so much more than her friends could ever dream of.  Like leave home for 3 weeks at a time, or travel across the country at any time for 2 weeks.  So she does sacrifice time with her friends to be with her family, but that’s more important in our book.  She still gets to go to football games and hang out with her friends on the week-ends, so really, she gets the best of both worlds and stays out of all the teen-age drama that comes with this age.   It’s a give and take and you have to weigh what is most important, because neither public school nor homeschool is perfect…both have their positive and negative aspects, but for us, homeschooling is the right choice for our family dynamics.
Both kids are in karate at American Freestyle Karate and it has been such a blessing to our family and especially for our kids. Kaston is now a purple belt and in the Black Belt club, where he learns the different weapons and Korah is a yellow belt, as she started about 9 months after Kaston and has only had 1 belt test.  It’s been great for their self-confidence and it teaches them so much self-discipline and accountance, which is rare in kids today.
We still occassionally go rock climbing and we’ve gone to Palo Duro Canyon a couple of times since I last posted. Of course, the summer brought lots of boat rides and time out on the water and even a trip to Possum Kingdom and Lake Greenbelt, but not nearly as much playtime as we wanted!  We had a super busy summer.
We were finally, after 3 years, able to put in a retaining wall, sprinkler system, yard, fence and garden in our back yard! It is SO nice having some privacy and having a place for the kids to go out and play! Of course, it took up most of our summer, as we did it ourselves (actually Bob did most of it, we were just occassional helpers!) So, our summer was just busy with work.

Bob was promoted to Captain and his job has become very demanding of him. Even more so here recently and he has been working non-stop. Right now, he’s on a 17-day stint of working with only 1 day off. And keep in mind, he works 13 hour days…gets up at 3:00 am and doesn’t get home until 6:30 pm. So it has made for a rough couple of weeks around here!  Please keep him in your prayers. 
We have also seen a steady decline in Kaston’s health, which tells us he’s getting closer to a pacemaker (we’ve been saying that for how long?) We go to Dallas week after next to do another evaluation and Holter monitor. His rates are now in the 40s-60s and he’s having short episodes where his heart rate shoots up to over 100 for no apparent reason, which then makes him nauseated. And his activity level has decreased and he seems more out of breath than usual and his stamina is minimal. He slept for 13 hours last night! And he seems to just lay around most days and has an aweful greyish color to him.  What is happening is that scar tissue from his heart surgeries have started to develop around the area of the body’s natural pacemaker and interrupting it.  So the mechanical pacemaker will help regulate it and not allow it to go under or over a certain bpm (beats per min).  I think it would make him feel so much better once he has it implanted.  It’s just waiting on his cardiologist to make the decision to do it.  His question to us last time was, “Is he passing out yet?”  What?  Come again?  I’m guessing that’s a common thing and we should expect it to happen.  We are getting close with more frequent dizzy spells and these episodes he’s having.
Part of me just wants to go ahead with this pacemaker thing so I don’t have to worry about it anymore and maybe Kaston can get back to himself. But what mother wants their kiddo to go through so much pain? It’s not just any standard procedure or like getting your tonsils taken out. But it’s not open-heart surgery either. Still, it is risky, it is many days in the hospital, and it’s 1 more thing to deal with. It’s not like implanting a pacemaker in a 60 year old’s heart.  That’s day surgery.  For these kids, they have to go up under their ribs and try to attach it to an area of the heart that is mangled with scar tissue.  Where a normal person would have the wires inserted doesn’t even exist in my child so they have to make do with what they have.  And of course anesthesia is always a risky thing.  But if it makes him feel better and it eliminates the risk of his heart stopping, then let’s get it done, right?!
Which brings us to Make-A-Wish and the reason why I wanted to start updating this blog again! Several months ago, after our last cadiology visit and the notion that a pacemaker is in the very near future, I decided to contact Make-A-Wish. Once Kaston has a pacemaker, he will be limited even more.  We’ve talked about this for awhile and he has never waivered from going to Disney World.  Korah and I have tried to convince him we need to go to Hawaii or the Bahamas or even an African safari.  Of course, we realize this is about his dreams, his wish, but we just wanted him to realize there is more available.  Once the MAW board approved Kaston for eligibility, we had the pleasure of Kaston’s Wish Grantor coming to our house, which happens to be the wife of someone we went to high school with and Bob has known since 5th grade!  Small world I’d say!  She asked him all kinds of questions about what his favorite things were, and of course, if he had 1 wish what would it be…I Wish To Be…I Wish to Have…I Wish to Go…I Wish to Meet.  And he wished to go to Disney World.  So we are (not so) patiently waiting for our dates!  We have requested to go sometime in November or the first week of December!  I am hoping we will hear something back next week so we can start planning appropriately!  It is going to be an awesome, well deserved, much needed vacation for our family and I can’t wait to be a part of the magical world of Disney, Give Kids the World and Make-A-Wish!

In the mean time, we will go to Dallas week after next for a couple of days for a cardiology visit.  Then we are planning to take Bob’s dad, Drew, to Red River the week-end after that.  He is in pretty bad health and they are prepping his veins next week for him to be put on permanent dialysis, so we figured we’d take him on a short trip…it’s been over 2 years since he’s been anywhere.  Once we get all that done, then I say it’s time to head to Flordia for a few days of relaxing sunshine!  I will keep it updated as we learn more!

Until then,

The Snyders

The Heart Kid 5K

For those of you interested in High Plains Mended Little Hearts “Heart Kid 5K”, please see the attached link for the registration form!  It’s this Saturday, May 12th at John Stiff Park, picnic area #10 at 8:00 am.  See the form for particular details.

5K Entry

Season of Mourning

So much has happened in the last 3 months!  I haven’t really had a chance to write, or even think for that matter, and just wanted to update you all on the times & lives of the Snyder Family.

Tuesday, June 7th, Bob & I celebrated our 14th wedding anniversary.  We also shared that date with Debbie’s arrival into heaven.  She passed away about 11:15 pm, with Drew asleep by her side in the chair, holding her hand.  The perfect way to go.  Her service was on Friday and couldn’t have gone any better.  It was amazing.  It was powerful.

Her fourth time to battle cancer – this time a very rare form of aggressive sarcoma that little is known about – she fought hard, and long and really never gave up.  She didn’t leave without a fight, that is for dang sure!  She asked to go into Hospice Care on Wednesday, June 1st.  She hadn’t been able to eat or drink anything for 3 days & needed some relief.  Thursday morning was the last time we saw her awake & spoke with her.  Over the course of the next 6 days, her heart rate was anywhere between 140-180…marathon runners rate.  6 days solid.  She died running a marathon.  I wouldn’t expect anything less from her.  I believe what Bob said to me the day before her heart stopped.  She never did give up.  She never said, “OK, God…I’m ready.”  She fought long and hard until the very last mile and finally God took her sweet spirit and said “Well done, good and faithful servant.”

She is no longer in pain and agony (you can’t possibly have any idea what her body went through…cancer is EVIL).  She is complete and whole.  And we miss her tremendously.

For those of you who didn’t know, Debbie was actually Bob’s step-mom, for 27 years.  His parents divorced when he was 6 & he went with his dad.  Drew & Debbie were married when Bob was 9.  They went through their ups and downs getting to know one another and through the teen-age years, but when he talked of his “mom”, he referred to Debbie.  She was the one that took him as her own, raised him, fed him, clothed him, loved him, disciplined him, took him to millions of sports practices and games, was fully involved in every aspect of his life.  I met Debbie when I was in junior high.  She has been a part of my own life for over 20 years.  And it’s so hard for her not to be here.

I wish everyone could have a mother-in-law like her.  We got along so well.  She was a mighty woman of God and I learned so much from her.  I didn’t always appreciate her, but have always gotten along with her, respected and admired her.  I have so much to live up to.

And our kids adored her. They are her only grandchildren.  “Moppy” was the icing on the cake to Korah & Kaston.  She was an amazing grandmother.  And I hate that they will live the rest of their lives without her.  And they are hurting…bad.  Kaston has daily 30 minute breakdowns for no reason.  Korah has no emotion what-so-ever.  She actually has been at church camp since Monday.  And I think it’s the best thing we could have done for her right now.

(finishing up this post  a few weeks later…)  It -church camp-was the best thing we could have done for her.  She told me she left her sorrow and sadness and anger for Moppy at camp, at the cross, so that Jesus could take care of it for her.  And she has been great ever since!  Kaston is doing much better now too.  We still use the phrase “Iiiiiii know it!” just like she used to, on a daily basis.  We don’t talk about her alot, but the impression she made on our kids lives (and us too) will always be with us.

On June 21st – 2 weeks to the day of Debbie’s passing, Drew (Bob’s dad) was admitted into the hospital with sugar levels over 300, an infected leg & failing kidneys.  He’s been battling diabetes for 25 years and it’s catching up with him now.  He was on dialysis off & on over the course of 3 weeks & was able to come home last Thursday, July 7th.  However, Bob took him to the ER on Monday  – just 4 days later and he’s in CCU now for failing kidneys.  He’s on dialysis again.  This time may be permanent; they’re hoping it’s temporary. We do not know what the future holds for us.

On July 6th, my great-uncle David Garrett passed away.  We (mom, dad, the kids, & I – oh and 3 dogs) left for the family farm in East Texas the next day.  It was a great celebration of his amazing life and we were able to visit with many family members we only see every few years.  Uncle David was a pillar to the Garrett – and Pippin – family.  He was the most honest, honorable, giving, respected, humble man of God I have ever known.  He was sort of like a grandpa to me since my own grandfathers passed away before I was born.  The funeral was amazing.  He was a veteran and a retired fire fighter (and still a farmer up until last month – he was baling hay!)  There were bag pipes & ringing bells and lots of uniforms and Dallas F.D. vehicles.  In farming communities in Texas, buildings are small.  So, we had the viewing at the funeral home in Sulpher Springs, the funeral at the Baptist Church in Miller Grove – officiated by their Methodist preacher & the burial was at the private family cemetery “down in the bottom” of the farm and the family meal was at the Baptist church in Emory that sits on the farm land that Uncle David donated.  It sits next to the dirt road that leads up to the “big house”, where we stayed – and is under 200 year old oak trees.  You have to cross 2 or 3 cattle guards to get to the “big house” down a long winding dirt road.  It is COUNTRY! 

I love the Garrett Farm.  It’s so peaceful and quiet.  And old. 1800’s old.  Slave ownership old (there are white Garretts & black Garretts in the community).  And really really old farm equipment old.  And beautiful dirt roads old.  And family cemetery’s old.  My mom’s dad is from that area too.  Visited Aunt Francis at her final resting place – where uncle David now lies eternally with his 1st wife of 32 years.  Visited my great grandparents, Presley & Pattie Pippin…they were born in 1899 & mamaw died when I just graduated high school at the age of 93. 

Her daddy was Newt Gresham – he founded the Farmer’s Union in Point, TX.  Which is now the National Farmer’s Union – “Supporting Family Farms and Co-ops since 1902” and is now based out of Washington, DC .

from the Texas State Historical Association.  Several years ago we (the Pippin decendants) were all honorary attendees at the 100 year celebration of the National Farmer’s Union.  Pretty cool, I think-just call me a nerd already.

Anyways, back to the cemetary…I get sidetracked easily, can you tell?!  Saw many many many babies with simply the family last name & baby.  So many babies…did any of them have a broken heart?  Is this maybe where Kaston’s roots lie?  This is where my roots lie (or at least a little bit of them).

So now, we sit & wait what the next chapter of our lives will bring.  We live on a daily schedule now (sometimes it’s hourly), as the future beyond tomorrow is unknown, for real.  We are still trying to finish up sending out thank-you cards from Debbie’s funeral (a month later – sorry to those of you who haven’t received an acknowledgment yet!), filing appropriate paperwork (Bob is now Drew’s Durable Power of Attorney, Medical POA, etc. etc.), still haven’t executed her will or been able to get into her lockbox, bank accounts need to be consolidated (there were several that we weren’t aware of) and personal items to go through.  So much to do, so much to do.

Other than that…we are trying to maintain a sense of normalcy for our kids.  Taking them wakeboarding when the opportunity arises, most times is when Bob gets home from work at 6:30 in the morning.  They go do a set or 2 then come back in & go back to bed!  Sometimes it’s on a Tuesday afternoon, which leads into a Tuesday evening.  Just whenever we decide to set life aside – it will be there when we get back – and veg out on the water.  Korah is at band camp for the next 2 weeks – she is super excited and I’m glad she is getting to experience the fruits of her labor!  She sold many many candy bars so she could go.  She raised $200 and all I had to pay was the additional $50.  I’m so proud of all her hard work.  She also helped pay for her church camp.  About $80 worth!  Now she wants to sell more candy so we can go to Oak Ridge, TN with Bob while he’s there for 3 weeks for training in September.  She is an awesome [sweetie pie].

For those of you visiting from Care Pages…WELCOME!  I figured since I had not posted any thing in like 10 months over there, I could get y’all redirected here & I hope you like it!  Care Pages (for those of you not familiar) was the first social media blog I found out about in 2004.  So I’ve been updating people from all over the world about Kaston the past 6-7 years through Care Pages.  And I have met ALOT of heart families there.  Before blogs and facebook and twitter and myspace, there was Care Pages.  The page name is simply kastonsnyder.

It was a great way for us to communicate with family & friends what was going on with Kaston during the dark days of open-heart surgeries, caths & all that mess that seems like so long ago (but just like yesterday!)  You can go back & read beginning August 10, 2004 what we were like and what we were going through.  There’s some pretty old pictures on there too.  I have had 707 visitors that have requested to follow him from America to Canada, from Ireland to South Africa.  Pretty profound that THAT many people have heard about him!

May everyone enjoy the rest of their summer break before school starts again in just 5 short weeks.  We already started our summer bridge program & learning about the Declaration of Independence and the flag – because of July 4th – duh, sand, glass, marine biology, and whatever else the kids wanna know about.  Will dive into 7th & 3rd grade…maybe sometime in September?  Who knows, maybe October.


the Snyder’s