Category: Today


Snyder Time is active again!

St. Lucia, West Indies

St. Lucia, West Indies

I sort of forgot about  this little blog of mine and decided to see if it was even still available!  So I’ve spent the afternoon going over all of my past posts and I can’t believe it was Christmas of 2012 since I last posted!  Wow, So Much Has Happened since then!  For those of you that I am friends with on Facebook, most of you know what’s been going on the last couple of years.  My intentions are to start this blog up again, so I can communicate better with close friends and family, and those who want to keep up with the Snyder Times!  Not to mention, writing has always been therapeutic for me and allows me to go back and reflect.

To catch everyone up since 2012, I will back up and try to cover the top events of the last 2 years.  Shortly after we got back from Kaston’s Make-A-Wish trip, one of the biggest blessings ever came into our lives.  More about that later.  In June of 2013, we had the opportunity to go to San Diego, CA for a much needed family vacation for a few days.  We were still dealing with the death of Bob’s mom Debbie and taking care of his dad and his high medical needs, along with maintaining 2 households.  It was amazing and we had so much fun being on the West Coast and getting to see the Pacific Ocean when Bob had just first seen the ocean only 6 months prior on Kaston’s Make-A-Wish trip!  And ever since Debbie’s passing, his dad, Drew had been in very bad health due to unmanaged diabetes.  Unfortunately, July 3, 2013, Bob’s dad, Drew, passed away.  Bob found him at home in his bedroom.  His kidneys had failed him.  So we planned yet another funeral during the summer.  4 funerals in 4 summers in 1 family.  The Boxwell Brothers have been amazing to our family, but just as Bart told us, we really hope we don’t see each other for a very long time.

A lot of you may not know this, but Bob has been surrounded by an incredible amount of death in his life and his dad’s took the cake.  When Bob was 14, his only sister tragically died in a car wreck.  She was 16 years old.  Over the years other great-aunts & uncles passed along with Debbie’s parents, as is expected as people get older and most people experience.  In 2006, his biological mother passed away at age 53.  In the summer of 2010, his grandmother that he was extremely close to  and spent his childhood summers with passed away.  In the summer of 2011, Debbie passed at age 59.  In the summer of 2012, Debbie’s brother Gary passed away at age 61.  In the summer of 2013, his dad Drew passed away at the age of 60. And of most of you may remember, not even two months after Drew passed away, Bob’s 25 year old brother Matt was in a terrible car wreck that almost killed him.  He is still recovering a year and 4 surgeries later.  To say that a black cloud has been hanging over this family is an understatement…not to mention Kaston’s near death experiences when he was a baby with his heart condition.  So we pledged and prayed that 2014 was the year of the Snyder’s.  And we made it through the summer without anyone dying or having to attend a funeral!  It was a much needed relief for our family and our kids.  Besides Kaston being born with his medical issues and the amount of stress that brought on our family, those 3 years were the very hardest times of our lives and our marriage.  If our marriage can make it through those situations, I have no doubt we can get through anything! The demands of caring for dying parents is excruciating.  And we are young.  Most people do not have to do this so close together and at this age.  Maybe one parent dies tragically or unexpectedly, but to have 3 parents die so young and so close together is unusual.  And we finally feel like we have some normalcy in our lives now.  After thousands of dollars spent on attorneys fees trying to settle both estates, and paying two mortgage and maintaining 2 households for 3 years, we are getting closer to being finished.  We finally were able to clean out his parent’s house and get it ready to sell and is currently on the market.  Our realtor has been showing it non-stop for the last week and we actually have an offer on it.  Just waiting for them to accept our counter offer.  Once that is complete, hopefully that chapter of our lives will be closed and we can continue on with the wonderful memories that we have of his parents.

So, let’s back up to our blessing that was brought into our life in January 2013, shortly after we were home from Kaston’s Make-A-Wish trip!  Some friends introduced us to something that has allowed us to travel the world this year.  It’s hard to go into detail about it, because there’s just so much to it, but it has allowed us to have a life I have only dreamt of and still have to pinch myself some times!  It has taken some mental changes on our part and made us get outside of our comfort zone a little bit, but we have dove head first into a life changing thing!  It is a great place to be in at this time of our lives and we have grown so much over the last year just from the personal development we have gone through.  Our dreams are becoming realities.  Kaston’s Make-A-Wish trip opened up something in us we never really had, nor knew what we were missing.  We simply didn’t know what we didn’t know.  The desire to travel.

This year has been filled with many firsts and allowed us to start checking off things on our bucket lists! I have been on an airplane more this year that I have in all of my previous years combined!  Beginning in January, Bob and I spent 5 days in Louisville, Kentucky.  It was a great getaway for us and we enjoyed our time at the Jim Beam and Maker’s Mark Distilleries, along with our tour of the Churchhill Downs.  In March, we embarked on an amazing journey together and travelled the Atlantic and spent 10 days in Ireland.  I can’t even begin to describe what an amazing time we had there!  The pictures do not do it justice.  We will take our kids there when they are a little older.  We topped it off with 2 days in London.  I fell in love.  We will take our kids there someday too.  The kids and I spent a few days in Ruidoso, NM with my family for my grandmother’s birthday, Bob & I went to Indianapolis, Indiana in June for the Mended Little Hearts Conference, Las Vegas in July, and then add in a couple of trips to Dallas/Ft. Worth, Oklahoma City, and Possum Kingdom along with a lake trip to Lake Tenkiller in Oklahoma and I’d say we had an incredibly busy summer traveling and blew the last 3 summers out of the water!  We ended it with a 8 day cruise out of San Juan, Puerto Rico in the Caribbean just a couple of weeks ago – St. Thomas, St. Kitts, St. Maarten, St. Lucia, and Barbados were our ports of call.  WOW!  We had an amazing time and it was the kids first time to travel out of the country!  The water and beaches were amazing, the cruise itself was unforgettable and I can’t wait to have to opportunity to go back to the Caribbean and stay on my favorite island…St. Maarten!  We have made friends with people all over the country and met some amazing people from other countries – the people of Ireland are the friendliest by far!

We have some big trips coming up for 2015 and I can not wait to have them on the books permanently!  Just trying to figure out when and where, but it’s gonna be another epic year for our family!  I guess when you go through what we’ve gone through, priorities change.  Cleaning out Bob’s parents house was very emotionally draining.  They worked their entire lives for a house full of stuff that had no value.  The only thing we wanted to keep were the things that had memories attached to them.  And there were so many things we simply just had to get rid of.  An entire, albeit short, lifetime of working 40-60 hours a week for a house full of things.  Oh how I wish we had more memories with them.  More peak life experiences shared with them.  Because in the end, that’s all we really have.

I want to show our kids the world.  I am so glad we said “yes” to an idea that we weren’t sure of but took a leap of faith.  And man, it has sure changed our lives for the better.  Bigger things are coming our way and our future has been changed forever.  It’s a really good place to be at and I thank God every day for placing such an amazing opportunity in our lives.  It’s crazy how God likes to give you the desires of our hearts…we just sometimes have to ask.  And it may not be anything you ever expected, but you know it when you see it.  It’s hard to believe that He has placed the people in our lives that he has and that we have had the opportunity to meet the people we have.  And I know this is only the beginning.

Homeschool is going well and it really fits our family and our family perfectly.  We have so much freedom and this new lifestyle fits our schedule nicely!

Of course, there’s so much more that has happened, but these are the biggest things that have impacted our family the most over the last couple of years.  I hope to be able to keep this page updated more frequently.  We have some big things coming up that I will share with you later, so until then…

 

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Last Week

 

Is it summer yet?

Hanging out in Meme’s front yard in Austin (this summer)

What a week we had last week!  I just wanted to share with you the events so that maybe you could gain some knowledge, whether in a spiritual sense or otherwise.  I will leave it up to you.

Kaston has not been feeling all too well for about the past month since he had walking pneumonia right before Christmas. So off to the dr. we went on the 1st day back to school from Christmas Break. He had been running a fever the day before & threw up in the bathtub. It was time.
His O2 was low 90’s, everything else checked out fine, all tests were negative – RSV, Strep, Flu. No other symptoms, so he was thinking something else was going on inside that we couldn’t see. To the lab we go for a blood draw – he did GREAT! Amazing that an 8 yr old doesn’t cry when they take blood – I hate needles and am glad I haven’t transferred my spirit of fear to him!

We get a frantic call on Tuesday that we needed to bring him in immediately for more labs.  His liver enzymes are way way off, meaning his liver is failing (and would possibly need a transplant), white cell counts are not where they need to be – something was definitely going on with our little boy.  Needless to say, Bob & I were totally freaked out!  Bob was at work and was able to take off for a couple of hours to meet me at the lab – Kaston does so much better when he’s there for draws (again, because of my fear of needles, and well, I’m mom, & dad is so much cooler than mom!).  Again, he did so good & barely even said ouch.  He thought it was cool that he had 3 red dots on his arms (they missed on the 1st draw the 2nd day).  Of course, he milked the sympathy card the rest of the day!  And of course, we obliged.

Tuesday night was BAD.  I haven’t felt that scared or worried or anxious or helpless in a very very long time.  So I did all I knew to do and prayed – and leaned on my friends for advice – and prayed some more.  Thank goodness for great, unbelievable friends.  More than that, thank God for who He is and all that He promises to be to us – more about that in a minute.  That evening, Kaston was complaining, alot, that his back hurt really bad, he had a bad headache & just hurt all over.  Dr. Young told us to call him if he got worse.  So, Wednesday morning, we called him.  And went back in – for the 3rd time in 3 days.  Going into that office was a surreal feeling.  All of the staff knew something wasn’t right – they’d heard about the lab results, heard the fear in my voice when I called – again and  just the looks on all of their faces was horrific.  What were we facing?  Liver transplant, heart failure, what?  Ahhhh, the unknowns of CHD.  Dr. Young still was waiting for lab results to come back and examined him more than he has EVER examined him – in 8 years.  He was worried.  I could tell by the look on his face and him studying his body and listening and feeling and studying his notes and the labs.  In the mean time, he ran another flu test – because of course, there are occasionally false negatives.  And studied the labs some more.

God answers prayers.  How else do you explain TWO lab results being messed up?  He tested positive for the flu.  Oh yeah, and a staph infection in his nose but has zero signs of it.  We both looked at each other with our heads cocked to one side like lab puppies.  No symptoms of staph – huh?  And his additional lab work on his liver was NORMAL.  Apparently, the first one somehow got messed up – just the liver part & nothing else.  And I’m perfectly fine with that.  Thank God for false negatives and messed up labs.  Make of it what you want, but what I know to be true is that He answered so many prayers that night.  For this little boy to not be fighting the fight of his life, again, for the 3rd time in his short 8 years.  He promises to take care of us, and He did in every since of the meaning.  All through something so simple as some messed up lab work. So just when you think you are facing the worse, it may not be as bad as it seems.  There’s all kinds of messed up lab work in life and God can mess up what you think you know to be true.  Do not assume anything.

We are still concerned with his low heart rate & lowered O2 levels.  He has been super pale for over a month now & his eyes are just so dark all the time, and had unusually low heart rates even now that he’s been on meds for 5 days and seems to be over any and all symptoms (or lack thereof) related to the flu or staph.  Of course, the question still remains, is this just because he’s been so sick the last month or is this heart related?  I am standing on faith that it is simply his body playing catch up.  We are pumping him full of vitamins and immune boosters and antibiotics and tamiflu trying to get this kid healthy.  He acts like he feels OK, but just looks plain scary – the best way to describe him is that he looks like someone on TV or in a movie that is really really sick or dying and they have all that make-up on them that makes them look really pale and pasty with dark circles under their eyes – that’s been Kaston for about a month & 1/2 and I know that he hasn’t had the flu & staph for a month & 1/2!  So we will see what Dr. Zellers in Dallas has to say about all of this on Friday for his annual cardiac work-up.  Until then, I will not assume anything!

And to top it all off, Korah puked in the hallway at school on Thursday – poor baby.  Again, I have the best friends in the whole world.  Our friend, Big Jake, was so kind as to pick Korah up from school and bring her all the way out to Tanglewood so I didn’t have to get Kaston out of the house.  The benefits of being a fireman also benefit fireman’s friends!  His big 6ft 6in body makes him a little intimidating but his heart matches his size.  She puked all day Thurs & Fri & part of Saturday.  Not sure if she had the flu or not – different symptoms – but definitely flu-like.  Luckily for her, her body is able to fight all of that off fairly quick and she is back at school today.

Praying that Bob & I remain free from these infections.  What a week.  My mind goes on and on forever about our future and what it holds and what our obligations are.  More of that to come later.

God is good, all the time.

Jamie

8 Years Ago…

November 22, 2002

 

our lives changed forever.  Of course, any time a child is brought into this world, the course of the parents lives change forever.  But having Kaston altered the course and direction that our lives would have normally went. 

Little did we know that the reason he was so blue after delivery was due to a life threatening heart defect.  Something that we would have to deal with on a daily basis for the rest of his life, the rest of our lives. 

Having a child with a chronic illness has altered everything in my life.  Who I am as a person, as a mom, a wife, a daughter, a friend, every aspect of my every being.  My faith has strengthened because I have witnessed miracles with my own eyes.  My courage has seen it’s ups and downs, but I can face obstacles with a better sense now.  My hope waivers from time to time, but I realize it’s all I can do.  But enough about me.

Kaston has brought so much to so many.  He has such a kind spirit, he’s adorable, funny, vibrant and everyone wants to be his friend.  He still loves his stuffed puppy “Bassil” that he got from his Mamaw for his first open-heart surgery (we’re on Bassil #4).  He loves Star Wars, especially Yoda – because he’s the Jedi Master and overcomes the dark side, just like Jesus did as he tells it.  He loves wakeboarding and Shaun Murray is his favorite pro rider.  He loves to swim and ride in the boat and climb trees.  He is afraid of spiders – well all insects – and bobcats.  But that’s about it.  He asks questions about life that most 8 year olds probably don’t.  Like “When am I going to get married?” and “When am I going to die?” and “How come I can’t play football?” and “Why does it smell like cow poop outside?” (well that one’s just for kids that live in the Texas Panhandle!)  He loves hunting and fishing with his dad, riding 4-wheelers with his Mamaw & Grampa, spending the night with his Moppy & Poppy so Poppy can tell him silly stories, and cuddling with his mama.  He says his big sister Korah is his best friend.  He gets his feelings hurt very easily when he messes up and he gets in bad trouble and does NOT like getting a spanking from his daddy or getting shots at the doctor.  He is…Kaston. 

I can only imagine what these next 8 years will be like.  Up until now, I have prayed that he will stay healthy, have no hospitalizations or surgeries and that his heart will keep on keepin’ on.  I haven’t really ever allowed myself to think beyond his health and look into his future.   And now, I find myself looking forward to normal things.  Like middle school, him shooting his first deer, learning an invert (in wakeboarding, it’s where you go upside down), his first school dance, being baptized, getting his golf cart license, puberty (I know-I’m crazy!), his first girlfriend, his first car.  Just everyday things. 

What an amazing little boy we’ve been blessed with.  I often times wonder why we were chosen to be his parents; not because of all of the hardships that we’ve been thru since his birth, but because of how much joy he has brought to our lives.

Happy 8th birthday Kaston!

September 2010

Better Than

This has been my favorite song for a couple of weeks. I heard it a long time ago; just lovin me some John Butler lately and I love these lyrics and try to apply them to my life & the life of my kids.  Especially in today’s world of middle class suburban households.  Life is not what’s about better.

All you want is
What you can’t have
And if you just look around man
You see you got magic
So just sit back relax
Enjoy it while you still have it
Don’t look back on life man and only see tragic

Because you could be better than that
Don’t let it get the better of you
What could be better than now
Life’s not about what’s better than
You can be better than that
Don’t let it get the better of you
What could be better than now
Life’s not about what’s better

All the time while you’re looking away
There are things you can do man
There’s things you can say
To the the ones you’re with
With whom you’re spending your day
Get your gaze off tomorrow
And let come what may

Because you could be better than that
Don’t let it get the better of you
What could be better than now
Life’s not about what’s better than
You can be better than that
Don’t let it get the better of you
What could be better than now
Life’s not about what’s better

All I know is sometimes things can be hard
But you should know by now
They come and they go
So why, oh why
Do I look to the other side
‘Cos I know the grass is greener but
Just as hard to mow

Life’s not about what’s better than.

All you want is
What you can’t have
And if you just look around man
You see you got magic
So just sit back relax
Enjoy it while you still have it
Don’t look back on life man and only see tragic

Because you could be better than that
Don’t let it get the better of you
What could be better than now
Life’s not about what’s better than
You can be better than that
Don’t let it get the better of you
What could be better than now
Life’s not about what’s better

Funk

My heart is heavy this week for so many reasons.  With so much social media these days, there comes with it the ability to connect with people all over the world, especially in the heart community.  You begin to build relationships with people all across the country/world, whether it be from being a part of Mended Little Hearts and knowing them in person or just coming across them from FaceBook.  I have heard about 7 people dying this last week of CHD, from an infant to a 22 yr old (and I’m sure there are many many more – I only follow 1 of these 7 kids, Baby Ewan).  You become emotionally invested in their life timeline and you pull for them and pray for them and message their parents on their blog , but sometimes they just don’t make it.  And it sucks.  It begins to sadden your soul because you really start to understand the gravity and the reality of CHD.

It’s not because more and more of them are dying.  We are just becoming more and more aware of all of the statistics.   Before it was just numbers on a piece of paper or in an online article; now it’s faces, names, pictures, raw emotion.  And LOTS of them.  Struggling, dying, living.

Top that all off with some devastating news we received within our family on Friday and it makes for a pretty pitiful week-end.  Death and the thought of death has surrounded me alot this last week.  But I have to realize that there is hope, there is healing and we serve a mighty God that can do miracles and I have to stand on that belief because there is no other way to cope.

Uggh.  I am in a funk.  I promise to post something more upbeat next time.  Until then…please pray for complete healing in the Snyder family.

My song for today…

All of Me

All of Me

Matt Hammitt

Afraid to love something that could break

Could I move on if you were torn away?

I’m so close to what I can’t control

Can’t give you half my heart and pray He makes you whole

You’re gonna have all of me

You’re gonna have all of me

You’re worth every falling tear

You’re worth facing any fear

You’re gonna know all my love

Even if it’s not enough

Enough to mend our broken hearts

But giving you all of me is where I’ll start

I won’t let sadness steal you from my arms

I won’t let pain keep you from my heart

I’ll trade the fear of all that I could lose

For every moment I’ll share with you

You’re gonna have all of me

You’re gonna have all of me

You’re worth every falling tear

You’re worth facing any fear

You’re gonna know all my love

Even if it’s not enough

Enough to mend our broken hearts

But giving you all of me is where I’ll start

Heaven brought you to this moment

It’s too wonderful to speak

You’re worth all of me

You’re worth all of me

Let me recklessly love you

Even if I bleed

You’re worth all of me

You’re worth all of me”

6 Years ago…

a couple of hours after surgery

this is what we were facing.  Sept 13, 2004 Kaston had his 2nd open-heart surgery, the Fenestrated Fontan.  To look at where he was and to look at where he is today seems impossible.  6 years ago today we were waiting for him to come off of the vent and praying his lung wouldn’t collapse like last time.  Praying for his silent tears and cries to go away.  Praying for him to not have to be tied to the bed anymore.  Praying “He heals the brokenhearted and binds up their wounds.”  Psalm 147:3  And exactly 6 years later I find myself praying this same thing for the Hammitt family as their son Bowen had his 1st surgery and is having complications.  A familiar feeling I, as well as so many others, are all too familiar with.  Bowen’s daddy, Matt Hammitt (lead singer for Sanctus Real) has been writing some AMAZING songs during this journey.  Check out Bowen’s Heart & you will see his post from 2 days ago with one of those awesome songs, Holding You.  Boy does it bring back a flood of emotions!

Yesterday was Kaston’s “Fontanniversary” as they call it.  And it was very surreal being in Dallas for the DMB concert on Saturday 9-11.  I didn’t have to actually go to Children’s, but I was so close anyways (my friend unknowingly booked a hotel right in front of the hospital).  I really didn’t realize the date until we were sitting at the Denny’s in front of Children’s  at 1:00 in the morning that I had been in this exact same spot 6 years prior to.  But instead of sitting in a Denny’s, we were in a hotel room praying for what the next days held for us and our future and hanging out with our 22 month old son who had no clue what he was about to endure.

So many ironies the last few days, I’m not sure what to make of it all….

My Kids & Dave Matthews

And their hands too…

So here’s a picture of my kids from a long time ago.  It was right before Kaston, age 3 years, 4 mos, 8 days, was scheduled to have yet another heart cath, this time to insert an Amplatzer Closure Device into the fenestration purposely placed in the right atrial baffle that the surgeon’s stitched in during the 2nd open heart surgery that’s made of bovine pericardium to help redirect the unoxygenated blood away from his heart and go directly to his lungs instead so they can properly oxygenate his body since his heart has been reconfigured, twice, because he wasn’t born with his tricuspid valve open (which is in between the right atrium and right ventricle, which is SUPPOSED to pump blood through the pulmonary artery & into the lungs, but since the right ventricle only receives blood passively through the ventricular septal defect because the tricuspid valve never opened, the surgeon redirected the blood flow to bi-pass the right side of the heart completely and the superior vena cavas are now both tied in directly to the pulmonary artery, which means all the blood is oxygenated first then pumped out by the LEFT side of the heart, which does ALL of the work) and now has a hypoplastic right heart.  Yadda yadda yadda…You can see how I could go on & on, which sadly, there’s more to it that what I just rambled on in 1 continual run-on sentence.

Or as my conversation usually went those days “No, I didn’t paint his fingers & toes blue & no he didn’t just eat a blue popsicle or blue sucker or have anything near his mouth that was blue.  They put part of the lining of a cow’s heart in the top of his heart to redirect blood flow AWAY from his heart.  They also had to put a tiny hole in it to act as a pop-off valve for better results after surgery to regulate pressures.  The hole was supposed to close up on it’s own but his got bigger and now his oxygen has dropped 20% and they need to plug the hole!  That’s why he has blue fingers and toes and lips!  Thank God it’s not another open-heart surgery because just a couple of years back it would have been.”    That’s as about as simple as I can get it in laymen’s terms!  So if you have ever heard my kids, especially Kaston, say he has 1/2 of a cow heart, it isn’t true!  He only has 1/2 of his own heart with a very very small amount of cow tissue inside of his heart.  I always ask, where did they find the cow?  Surely it didn’t come from some sort of feed yard, did it?  I have been reassured that the cow that donated his heart to help save the life of my son (of course unintentionally) did not, in fact, come from a feed yard somewhere in Hereford, TX, but rather from some sort of facility that raises cows and pigs for this very type of thing.  I hope they were hand fed, because that’s how I like my beef!

So what does this have to do with Dave Matthews?  Well, I get to go to the Dave Matthews concert in Dallas on Sept 11th!  The only time I’ve gone to Dallas the last 7 years is to go to the hospital with Kaston, whether it’s for appointments, surgeries, heart caths, whatever.  But not to see Dave Matthews, only with my girlfriends – no kids, no husbands, no hospital, no doctors!   Just you and me together (we can do anything..BABY!)

I’ve Done It!

I’ve finally done it!  I’ve jumped into the world of blogging!  I learned alot about this little thing called a blog when I went to the Mended Little Hearts convention in Minneapolis in May.  It is something I know very little of, but all the great gals there encouraged me to try it & see what happens!  So, here I am, trying to figure all of this out.  I’m thinking I probably will like this, because if you know me very well, I like to write my thoughts down.  And it gives me the opportunity to update everyone on the Days of the Snyder Lives!  Maybe I can use this as an outlet instead of putting everything about us on Facebook, for EVERYONE in the world to see!  So bear with me as I build and maintain.