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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 . http://www.nfu.org/about-nfu/history

from the Texas State Historical Association.  http://www.tshaonline.org/handbook/online/articles/fgrab.  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.

http://www.carepages.com/carepages/kastonsnyder/updates/132600

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.

Blessings,

the Snyder’s

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Tired Children!

FINALLY!! The kids got their wakeboards wet Sunday! You couldn’t wipe the smiles off of our faces! They both did great and Korah was even catchin a little air! They only did one set, and they didn’t even seem to think it was too cold. But they are soooo sore today though! They haven’t used those muscles since Sept I suppose!

Plus we hiked in Palo Duro Canyon on Saturday. Not just walking the trails…climbing up & climbing down & climbing through caves with exits only Kaston could get through! CrAzY! Bob was with us so the kids (and myself) were less hesitant on where it was safe to go. So we went. And they begged us to stay longer and hike more. We are going to try & take them camping – in the true sense of the word…in a tent (not like what we usually do in the 5th wheel with beds and toilets & the niceties that come along w/it!) But actual camping like we grew up doing! Of course, we’re gonna have to find a tent, and something to sleep on, and dust off our old coleman stove & lanterns! We were wanting to this week-end, but the weather supposed to get nasty. So we may have to wait awhile.

Your prayers are working for Bob’s mom! They have got her pain somewhat under control and she is handling the new chemo well. She actually ate 1/2 a burger on Friday after Bob took her to her treatment! That’s huge for her. And Korah was able to spend the night with her on Saturday – something she hasn’t been able to do in months! So keep the prayers coming.
It’s Tuesday now, so I’m goin to bed!
Have a blessed week!
Jamie

So much to say…

So much to say, so much to say (lyrics fr/one of my favorite DMB songs)

Where do I even begin?!?! I won’t go over every detail of the last 3 months, but here are the highlights & how our lives have changed…it’s long.

Kaston does NOT need a pacemaker…yet!  Woo hoo!  We just monitor him & will check him again in June.  His heart rate is unusually low, but nothing of concern just yet.  Heart wise, he seems to be doing well, only complaining about being dizzy occassionally – could be his medication, but totally manageable.  Health wise, he seems to be on the mend and hasn’t been sick in a while.  But he has been spending more time outside with the warmer weather, so that helps with his immunity as well.  Korah broke her wrist & was in a cast & splint for 6 weeks.  She tripped playing basketball, and fell backwards, and tried catching herself on the concrete.  She’s my kid that breaks bones (Kaston has only broken his foot) and she IS her father’s daughter!

We started doing rock-climbing at the local rock climbing house & the kids LOVE IT!  They are both doing really good and the people there are so nice and really help them learn. We go every Monday from 4-5 and they look forward to it every week.  They have different colored routes you can take, depending on your level.  Some are super easy & some are impossible!  So the kids have been pushing themselves to do some of the harder routes and they’ve been teaching them some techniques that will help them.  I didn’t realize there was so much to it!  Bob & I have learned alot too and are going to take a class to be a certified belayer – or the harnessed person that is anchored on the ground and tied to the climber to prevent them from falling.  They enjoy it so much and it’s great exercise for both of them.  Korah even wants to celebrate her birthday there!  I took them (along w/3 other kids) to Palo Duro Canyon State Park – it’s known as the mini Grand Canyon and Lake Tanglewood, where we live, is part of PDC.  They have walking & bike trails & hiking.  They LOVED IT!  And ask every week when I’m taking them back.  They really didn’t care for the trails; they just wanted to CLIMB!  They’ve even started climbing around down in the ravine behind our house (that was on fire a few weeks ago).  Which brings us to…the fire!

I posted alot of info when it happened on facebook, so alot of this is repeat information.  But…on Feb 27th, wildfires broke out in the area that we live in (and across the Texas Panhandle).  We had 60 mph winds that day & it’s always a fire hazard on super windy days around here.  I was just about to leave to go into town (as us country folk say) and noticed smoke behind my house.  I had heard sirens about an hour earlier, but didn’t think much of it, because it was a windy day – it happens all the time.  As I sat in my driveway, I noticed there were lots of cars at the house across the street where an elderly lady lives.  I thought maybe she had passed away.  They all started to leave & I saw Mrs. Watson in her car so I pulled her driver over & asked if everything was OK.  She said that we were being evacuated!  I started making phone calls – Bob was at Lake Greenbelt, an hour away with Kaston.  Korah was w/Niki – in town, and I called dad – in Phoenix.  He’s a retired firefighter.  I called Jacob, he’s a firefighter too.

Still sitting in the car in my driveway, the flames had engulfed the ravine behind our house.  Then I noticed a fireman walking up to my front door.  I met him there & he said I needed to leave immediately.  He said if there was anything I needed to get from the house that he would help me.  All I could think was medicine and documents.  So I grabbed the basket of meds and as the fireman stood in my kitchen, I stood in my office closet, shaking and crying, trying to figure out what I needed to get.  I grabbed a folder that had our birth certificates, social security cards and marriage certificate.  My cat was sleeping on the bed in there & the fireman told me I needed to leave immediately & that I could take my cat with me if I wanted, but it was time to go.  I decided it was probably easier and safer to just put her outside.  Animals have the instinct to flee; I do not!  I didn’t even grab any clothes.  I basically had 1 trip to the car & I already had my cat in tow, my folder and a basket of meds.  The fireman had the other basket & he helped me into the car & didn’t leave until I did.

It took me about 20 minutes to get from my house to the gate that closes off our community to the public.  It’s usually a 1 minute drive.  There were tons of emergency vehicles everywhere.  And cars lined up forever.  All the while, I’m trying to get back in touch w/Bob (they had stopped at the Dairy Queen in Clarendon).  I had spoken to him earlier, just when I saw smoke, and it wasn’t a big deal at that point because we didn’t know what we were dealing with.  But now there were flames “IN MY BACK YARD” as I screamed at my dad!  He assured me our house would be OK.  What does he know?  As I’m trying to drive, and not hit any of the emergency vehicles in my way, I am FREAKING OUT!  Uncontrollable crying & shaking.  Finally got in touch w/Bob & they were speeding back, trying to get to us as soon as possible.  Outside of the gate, people were pulling over, so I, too pulled over.  And my friend Niki met me there with Korah.  I wanted to watch if my house was going to burn down and wasn’t leaving until they made me.  It was an indescribable feeling.  The only thing I can compare it to is that the devil was chasing me.  He was out to steal, kill & destroy.  Eventually, they had to get us all cleared out and with Niki’s persistence, I reluctantly left.  We ended up at mom & dads, about 5 minutes away, and stayed there for the night.  Thank GOD for the friends that stayed with us and tried to comfort us.

We had a friend that did not evacuate and after it got too bad down at his house, he ended up at our house – we’re up on the hill, he’s down in the canyon.  He said it looked like a war zone.  Indescribable.  And our house appeared to be the evacuation center for the animals.  It was blocking them from the smoke.  He hung out there for a while & then eventually left to be with his family.  2 houses behind his burned to the ground along with his 5th wheel.  He thought to turn on his sprinklers…it saved his home.  They ended up having to have all of their linens and clothes shipped off to get professionally cleaned. They stayed in a hotel for a couple of weeks while they cleaned up the smoke damage in their house.

We weren’t allowed to go back in until the next afternoon.  Our house was spared, thanks to the fireman, and of course, God -and the Bible buried in the concrete in front of our front doors, forever turned to the scripture of Joshua 24:15.  It would have burned if they hadn’t been there.  We were surrounded by fire on 3 sides of our home, within a couple hundred yards on each side.  7 homes were burned in Lake Tanglewood, 25 homes in Palisades, just adjacent of Lake Tanglewood, and 26 homes in Willow Creek (on the other side of town).  Praise God no one died.  Although there were many animals that were left in their homes and were burned alive.  And there was an animal rescue shelter that burned too.  Some were saved, more were burned.  There were evacuations going on all around the Texas Panhandle with more than 10 uncontrolled fires.    Our cat came home about 5 minutes after we did, all covered in ash & hungry & thirsty & tired.  She slept for 2 days.   We didn’t even get smoke damage…just a little stinky is all.  Crazy crazy day.  One of the most stressful days of my life.  One of the scariest days of my life.  And tomorrow they are predicting 60 mph winds again.  I am putting together an emergency bag tonight!

Homeschool…It started out that Kaston’s teacher was coming to our house for 4 hours a week after she was done at school.  So he did his school from 4-6 on Tues & Thurs.  We did that for about 6 weeks (and she even made him sick w/strep one time – duh…don’t come around if you were sick the day before).  He did really good and made tons of progress.  After the 6 week period, we had to make a decision as to whether to keep having the teachers come, put him back in class, or withdraw him for good.  After much prayer and discussion, we decided to withdraw him & homeschool him ourselves.  He is doing FABULOUS!

I cut back my hours at work, only working 8:30-1:00 so I can teach him, and take care of Bob’s mom.  My mom & dad got back fr/their winter stint in Phoenix and they are watching him the days Bob works until I get off.  Mom takes care of his extra-curricular activities, like gardening – that’s what we consider science in the homeschool world!  He occasionally does say he misses school, and his classmates too, but we just try to make sure he is around other kids, like at church, our family friends, and has time to play with his best friend, Thaddeous; he lives behind us & on Saturdays, they play from sun-up until the late hours of the night.  They are “bros” he tells me.  “He’s like a brother, but not really my brother.  Ya’ know what I mean, mom?”  I even let him play late during the week too.  And he gets to skip chores so he can play – sometimes!  We’re just trying to find the right balance and allow ourselves an adjustment period, and it’s working out for us in this season of life.

As far as next school year, we are 99.8% sure we will homeschool both kids.  Korah can’t wait and I’m having a hard time keeping her motivated throughout the rest of the year.  In her mind, the decision is 100%.  I’m learning lots about home schooling and I can’t see myself NOT homeschooling them both.  It fits our life.  It fits our kids.  It’s fun.  It’s rewarding.  And the benefits of it outweigh the negatives.  At least for our family.  I agree it’s not for everyone.  But it is for us.  At least for now.  And we can always put them back in if it doesn’t work out.  So, we are preparing for this huge transition in our lives.  But I have peace about it and know that this is what we need to do.  I kept Korah home from school today because she hasn’t seen her dad since Sunday & won’t see him again until next week-end (I realize it could be so much worse, especially if he was in the military) but with all the stress we’ve had in our lives, she can skip a day of school to be with her dad.  And that is an example of how homeschool would so fit into our life.  We will do school when Bob has to work, and on his days off, we play.  Even if it is on a Tuesday.

I mentioned a while back that Bob’s mom has terminal cancer.  She is still fighting a good fight and has all the hope in the world that she is going to beat this ugly thing.  So we continue to hope for her and with her.  We are caring for her the best we can, despite the circumstances.  She starts a different type of chemo next week and we are praying that this is the one that’s gonna do the trick and give her some relief.  Especially some relief from the pain she’s enduring.  So please keep her in your prayers.  It has been a tremendous stress in all of our lives, the kids included, to see her struggling so much.  She is the strongest person I have ever met in my life.  And I continue to learn daily from her about grace and faithfulness and hope and humility.

Bob received the supervisor of the quarter award at work – the very first one awarded.  Which doesn’t surprise me at all.  That is Bob.  A natural born leader.  He basically runs the shift 1/2 the time and they call him in to run ALL of the drills they do.  Especially when the big guys are there, like Senators and Congressmen and Generals.  Because the plans they use are his & his captains design.  And it works.  Every time.  He so enjoys his job and rarely complains, except for when it’s 3:00 in the morning and he’s getting up and has worked seven 13 hour shifts in a row.  Who wouldn’t.  That’s one of the many many reason why I love him so much.  He works so hard to provide for his family.  And works hard at work; not to gain recognition, but because he’s passionate about securing and protecting our country from the evils of this world (have you ever heard of the Taliban?)  They want what we’ve got.

As for myself, just working, being a teacher, mom, wife, friend, and part-time caregiver to my in-laws, and running a non-profit.  We’re (High Plains Mended Little Hearts) doing a 5k run/walk in August sometime.  So we’re in the beginning stages of that.  So look forward to more info about how you can help!  Of course, we are always looking for volunteers and donations!

And we have 2 families (that we know of) that have been kept in Dallas until their next surgeries.  They’ve been there for months on end & the doctors aren’t comfortable them being so far away from them so they’re staying in hotels.  One baby won’t have her next surgery until August and they’ve been there since December I think.  It’s very hard on them because they have other kids at home & the kids are all split up between family members while dad works & mom is with baby in Dallas.  So, we’re trying to do what we can, which isn’t much in the big scope of things.  It’s nice to be around other moms/dads that have that commonality and it’s a great feeling to be able to help the younger ones.  I’m sort of a veteran in the CHD world.  Kaston is the oldest heart kid at age 8, in our group.  It’s very gratifying and humbling to know that you’ve helped someone’s life be a little easier in the darkest time of their life.  Hope goes a long way in the world in which we deal with.

I also have the opportunity to go to New Orleans for the annual Mended Little Hearts convention in June.  I am soooo looking forward to this trip and can’t wait to see all the other fabulous coordinators from around the country.  And to see a little of New Orleans.  I fly in on Friday & leave on Sunday afternoon, and most of it is in a hotel, but we get to go on a river boat Friday night.  We’re staying 2 blocks from the French Quarter.  Should be exciting times!  You get a few stressed out moms away from their kids for a couple of days & you never know how the night’s gonna end up!

So that’s all I can think of that’s important in our lives right now.  Looking forward to warmer temps (the kids actually went for a quick swim in the lake the other evening in the shallow area by the sand bar; nothing like swimming in March!)  Going camping next week-end & then the last week-end in April.  The kids are ready to get their boards wet.  Still too cold I think though in the deep water.    Gonna try & take the kids hiking in the canyon the next available day we have.  Who knows when that will be between Bob’s schedule and the weather, but they ask me every week-end to go.  We will get there, some day.  And not before life settles down, because it never does in the Snyder house.  We just keep on keepin’ on!

Life Changes

We had a good visit in Dallas this week-end.  The kids were AMAZING and we had so much fun with them.  It’s crazy to me that our kids love going to the hospital.  What a dreadful place, but it is pure bliss for them…an adventure you might say.  Kaston went under his usual testing for his annual check-up; blood pressure, O2 sats, height, weight, EKG, Echocardiogram, a THOUSAND questions from the nurse & the cardiologist.  It appears that Kaston’s heart rate is slowly getting slower.  This might attribute to him being pale all the time, it might not.  So, we will do another Holter monitor to see where he’s at.  If he is getting too low or sees some delays, then it may be time for him to have a pacemaker to regulate it.  This is by no-means something unexpected.  LOTS of heart kiddos have pacemakers.  When you go messing around with the heart, alot of things get messed up so you just deal with them as they come at you.  It’s something that’s totally manageable.  Of course, it’s 1 more surgery (not open-heart – it’s a pretty minor procedure) and 1 more thing to have to keep up with.  Pacemakers do require regular maintenance.  What it DOES mean is that he can continue on and be as normal as possible.  And there is always the possibility that he doesn’t need one just yet.  So we will do the monitor and wait for the results and figure out where to go from there. 

He also talked to us about getting Kaston’s tonsils taken out to help out with the strep problem he’s had forever.  Now, this has been of some debate between his pediatrician and the cardiologist for about a year now.  The card. wants em out – the ped. not so much.  So we just need to get all of the information of the pros & cons & figure out what we need/want to do.  If he needs a pacemaker, they’ll do it in Dallas & we could do the tonsils at the same time.  No need in putting him under twice.  It’s risky enough as it is. 

So overall, a great visit!  The kids got to swim – alot – we ate some awesome food – alot – and did some much needed relaxing.  We took Korah to the Galleria mall and she ended up not buying one thing!  She’s such a miser when it comes to money!  And that’s a great attribute to have at such a young age!  Kaston takes after his mom & dad & spends every dime he has as soon as he has it!  Yesterday we visited the Children’s aquarium at Fair Park and got to pet sting rays & sharks – the kids loved it.  Then we went rock climbing at REI – Kaston’s a little spider man.  He gets up that wall in no time!  Korah struggled some, but the instructor did a really good job being patient with her.  She finally got over her fears and made it to the top!  Of course, Kaston had to try it again on the medium wall & did fabulous!  They want to check out our local rock wall place – maybe something to get the kids interested in?  Then we made a stop at Sam Moon – holy moly!  Not my kind of place!  But Korah loved it and found her a couple of purses that we could agree on and that were within her price range!  Overall – a great, inexpensive week-end.

With the events of last 2 weeks and just with life in general, Bob & I have come to the crossroads of life, yet again, as to “which path do we take?” regarding the care of our son.  Fortunately, we are hand in hand in this decision, praying that God guide us in the right direction.

It is concerning Kaston’s health and education. Do we or don’t we Home School.  Yes I said home school.  Ahhhhh….there are SO many unanswered questions right now, but oh so many signs. Signs that can’t be ignored. But the question is how do we make it happen? How is this even our reality now and and how is it even a possibility?

Kaston’s had a pretty rough winter being sick. I think he just got knocked down pretty hard and hasn’t been able to recover and his immune system is shot, even though he is on a pretty heavy regimen of vitamins and immune boosters. I would hate to see what it would be like if he wasn’t.  He misses ALOT of school.  And he is very far behind – about one grade behind.  It’s not because he doesn’t try – his teachers and the principal say that he is a great student, works hard, always participates – the ideal student.  But he still is being sent to remedial classes every day because he’s just not up with the other kids.  And it destroys him. 

Think about it…you already are aware that you’re different in the physical sense, not just the scars and the medicines, but you don’t get to do the same things the other kids do…and you look just like them.  You add in that you are aware that you can’t read very good and are being taken out of the classroom every day because of it .  His self esteem has plummeted.  And he is usually such a happy little guy.  But we see changes in him.  He hates school, says he’s so stupid on a daily basis and doesn’t want to do anything besides watch TV (that could be health related as well- he has no energy to do anything besides watch TV).  When I work with him at home on the websites that his teachers have given us, he does fabulous.  I made him retake the ones he failed and he made 100’s on all of them.  He can’t wait to read with me, and loves the fact that I am teaching him cursive  because the kids in his class started learning that too.  And actually, he did surprisingly well for his 1st attempts.  Better than his normal handwriting I see on his papers from school.  I saw his self confidence change the end of last week when we did our “home school”. 

Is it time to pull him out of public school and try home schooling him for awhile?  For the sake of his health and for the sake of his education?  I feel that I am perfectly capable of getting him caught up to a level that he should be.  I’m not a teacher, but I’m resourceful.  And organized.  (ok I have good days & bad & please don’t look in my attic!)  Removing him from dirty little kids and germs and sickness everyday would also probably help him build up some immunity where he’s not having to fight something off constantly.  I always wonder what he comes in contact with and will this one be the one that lands him in the hospital again.  Of course, I realize I can’t keep him in a bubble, but I also can monitor who he is around and make sure he washes his hands more than he does at school (which I doubt is EVER!)

Bob & I had the very 1st conversation on this topic last Thursday.  Friday afternoon, the school principal called me to let me know that because Kaston is already in section 504, that if a doctor deems it necessary, that he could qualify for a homebound schooling program where a teacher comes to our house for 4-6 hrs/wk and maybe that might be what Kaston’s needs right now to keep him healthy.  What!?  Here’s your sign.  (and there have been many others, this one was just the most obvious!)

Of course, the answer seems easy in my mind.  Here’s the delimna – I have a job.  A job that I love, an employer that has allowed me to care for Kaston to the best of my ability and still work for him without fear of being fired.  More flexibility than I could EVER ask for.  Along with having a job is that extra income.  Where do we come up with the extra income?  I know, you say, cut extras out of your budget & you’ll come up with the extra money.  Easier said than done, short of selling everthing we own.  (which I have considered, not the husband so much! – I joke around and say “Let’s sell everything we own, buy a huge RV bus and travel around the country!”  I don’t see that happening unless we win the lottery!)  Bob will more than likely have the opportunity to put in for Captain soon, but it takes forever for those things to go through at Pantex, if it even opens up.  It would more than likely be summer time before we knew anything.  If he got it, it would be a considerable amount more – maybe even enough to cover what I make.  So maybe that will be the answer?  I’ve been trying to come up with things that we can make & sell online.  SOMETHING for extra income.  Anything.

I have a knot in my stomach just like I did when I had to quit my job shortly after Kaston was born.  We know what the answer is.  It’s just how do we do it?  How do we make this work.  And ultimately, is this the best decision for our son?  And would we do this for Korah eventually too?  We’ve talked to both of the kids about this and they are all on board.  They ‘think’ they understand homeschooling, but I just wonder if they really know.    Yes, they will give up alot.  But they will also gain alot too.  It’s a totally different mindset.  And it’s something that you have to be careful and aware of on so many levels.  But it’s doable and I see the rewards outweighing the negatives on so many of those levels.  I have TONS of questions and alot of research to do, but I also realize that we’ve only been discussing this for a little over a week and probably need to sit on it for a little bit longer before we change the direction of our lives forever.

I am ready for the happy days of spring and summer to arrive again.  ALL of my posts this winter have been heavy hearted – but it currently is a direct reflection of my life.  I am ready for the cold to go away and the sun to come out (tomorrow! tomorrow! bet your bottom dollar…eh hem) and to have all of life’s crazy questions answered  – well my own life anyways.  I have to know that God is ultimately in control and that He will bring that sunshine back into my life eventually, and will lead Bob & I onto the path that we should go that has the beautiful sunset at the end of it.  Because we sure can’t do this on our own.  It’s impossible without Him.

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

What does CHD mean to you?

Written by a CHD warrior and a heart mom – this gives you some sort of perspective of what it is like to live with a CHD from an adults standpoint. I often wonder if Kaston thinks the same way.

From their perspective:

It’s always wondering “why me?”

It’s looking at others who are just like you, seeing they are worse, but still feeling bad.

It’s no one ever understanding, you look good, you look fine and healthy and when people see you they don’t even know your sick.

It’s them wondering why you’re sitting out.

It’s them wondering why you never do the normal things people your age do.

It’s them thinking you are lazy.

It’s them thinking you’re cranky and need to get over it.

It’s them knowing that you’re sick and still wondering why the hell you’re sitting down all day.

It’s them thinking you’re faking.

It’s them not believing.

It’s feeling so tired, and so bad, but you can’t express the feeling to anyone, not even yourself sometimes.

It’s worrying.

It’s knowing that every day you could be getting worse.

It’s never knowing when something will go wrong.

It’s that feeling inside that something is wrong and the fear of what now.

It’s never knowing if the cough will turn into full blown pneumonia.

It’s the scar, knowing you should love it, know it’s there and it saved your life, and it’s loving it. But wishing sometime that you could have just one picture without it.

It’s the medicine you take every day.

It’s the life style you have to learn because of it.

It’s the side effects of the medicine, the bruises, the need to pee, and even headaches and nausea.

It’s the pain.

It’s the rapid heart beats that just come out of no where.

It’s sitting still, breathing, trying to wait it out.

It’s taking deep breaths that hurt.

It’s having to do breathing treatments.

It’s the cost of the medicines, the cost of the doctors.

It’s fear.

It’s the emotions you feel watching your loved ones having to go through these emotions with you.

It’s the fact that you see how hard your spouse, parents, siblings, children want to help but cant.

It’s the upcoming years of knowing the long term affects from it.

It’s the depression that no one understands.

Its’ the days you spend in bed because you’re so exhausted for no reason.

It’s the sadness you feel when you see others doing all the things you want to do but are told no from your Dr.

Its’ the love you get from strangers.

It’s the stares, the looks the ignorance from people who see your scar and try to figure out what the heck??

From a parents perspective:

It’s the “always there in the back of your mind”.

It’s celebrating the small victories and letting things go that don’t really matter in the end.

It’s the constant test of strength mentally and emotionally.

It’s trying to balance being overly cautious with not cautious enough.

It’s the constant Praises to God for giving us a chance to love a little boy He allowed us to keep on Earth.

It’s the ‘I’m so sorry’ look from strangers that see the scar and having to put it all in a positive light, always.

It’s the out of nowhere blood pressure drops that cause your little one to fall to the floor.

It’s the fear of the unknown future, yet rejoicing in the present.

Its the biggest challenge we have ever faced.

Its the biggest blessing we have ever received.

Trying to stay positive!

It’s been sad times around the Snyder household lately and I’m ready for it to stop so we can get into the Christmas groove of things!

One of my best friends moved away this week, the CHD community lost a very important person yesterday and Bob’s mom & dad are at MD Anderson in Houston this week.

A couple of months ago Debbie (Bob’s mom) was admitted to the hospital for pnemonia. After tests & more tests, it has been determined that she has a very rare form of cancer – it is terminal. It is througout her entire body & the main areas of concern are the masses in her lungs and by her spinal column. She has done some radiation treatments for her lungs here in Amarillo, but that’s all they can do for her here. So, that’s why they decided to take her to MD Anderson in Houston. They are the experts on this type of cancer and they are wanting to evaluate her and see what type of treatment plan is best suited for her.

This is Debbie’s 4th time to have cancer throughout her life time! She battled breast cancer twice about 16-17 yrs ago. She had a cancerous tumor removed last year. At that time, we knew there was a chance that it might possibly end up in her lungs. But it’s beyond that.

Debbie is most definitely a fighter. She is probably the strongest person I have ever known. She has always had such a positive outlook on life, has an outgoing personality & a heart of gold. So I ask each of you to pray for her to have the peace and grace that she always has had and that may God’s healing hands completely surround her. I ask that you all pray for our family. Especially Drew, Bob’s dad (as he is not in the greatest of health either), his 21 yr old brother, Matt, and our kids. Pray for Bob & I to remain strong for this family and guide us in the decisions that will need to be made and the courage to face the obstacles that are coming our way.

Debbie in the mountains, one of her favorite places

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…