Never crossed my mind

I belong to a support group for Tetralogy of Fallot (Cole's heart condition).  It's comprised of mothers-to-be with a diagnosis for her baby, parents of minor children (such as myself), parents of adult children and the tet adults themselves.

Mostly, I belong, for the same reason I keep up with adoption support groups, because you never know when something will change and it's the best way to find out.  Sometimes I pose questions to adults hoping for a glimpse into Cole's future, praying for evidence of a happy, healthy one for him.  Sometimes the other parents post asking about pediatric cardiologist opinions, and sometimes, mostly mothers-to-be post because they're terribly frightened about the diagnosis they've been given for their baby to be born.

First, I did not know Cole had this when I was pregnant.  I did have an inkling something was wrong with his heart because of a mistake the sonographer made by making a comment, but she obviously never followed up with my OB.  I'm glad I didn't know.  I see the extra worry these moms go through and truth is you cannot do anything until the baby is born anyways.  And few of these kids are born with such issues that they must be addressed immediately upon birth.  Meaning, rarely do you have to have the child born in a hospital with a PC on staff.

I had not even thought of this aspect until a mom posted last night asking if others' marriages were devastated by the disease.  Granted I was very young (almost 23) when I gave birth to Cole, but it never crossed my mind that this could be difficult on a marriage.  By the time Cole was born it had been 1 year since we lost our first child.  After finding out Cole had tet and breaking down for a few minutes until the PC ensured me Cole would survive, I was just happy to have a healthy baby.  Albeit, not perfectly healthy according to everyone's standards, but it was fixable over his lifetime and he was with us, so I was content.  I remember freaking out a bit when he would have a cyanotic episode.  God just must have been with me the whole way. Always, the words of his PC stayed with me.  Treat him like a normal child.  He IS normal.  I only remembered he had a condition when he was sicker than usual, which was rare, had an episode or we had a doctor's appointment.  I guess I took it to heart.  When the day for his surgery came I was very calm.  It never really entered my young mind to worry.  I don't know if God was just with me the whole day or if I'm just like my mom and put on a brave face, only reserving my worst for real crisis?

I answered this other mother back, but had to really think back.  Did his condition ever put strain on our marriage??  It's been a long time.  But, honestly, it never ever did.  The loss of our child did.  Our pregnancies did from time-to-time.  Brian's accident, definitely did.  But, Cole.  He never did.  For a second I thought, wow lady, you should be so lucky for this to be the strife in your life so awful to not have a marriage left after it.  But, then I reminded myself.  You never know.  Maybe she had a terrible husband who only wanted the perfect family (though this disease is far from devastating in most cases).  Maybe this really is the hardest thing she's ever been through and has never had any disappointment in life and didn't know how to handle disappointment or fear.  Maybe their marriage wasn't good from the start.  Plenty of couples, statistically, divorce when one becomes a paraplegic or quadriplegic.  It changes more than just abilities to walk, never running again or changing the way they can or can't do simple tasks.  I kind of have a glimpse into understanding these family's breakups and crumbles more than anyone I know.  At the  same time you never actually really know anyone.  We are far from what we look like on the surface.  And even though I share enough in common with these people to want to judge them, I have to remember there are commonalities between us, but plenty of differences as well.

Our marriage is far from perfect.  I pray my kids' handle their disappointments better than I do.  But, we have enough love in us to always fight and work through the things (not disappointments) that have been thrown at us.  Life will continue to change and hopefully we will as well....in the right way.  Everyone changes as they age and grown.  When you go through such shifts in your core as we have and countless other families, it sends you in directions you never saw on the map you had outlined in your head.  That's when it's truly amazing that couples stay together.  I mean if you live in a fairly perfect world with little disappointment and unsolicited change, life's a breeze and marriage should be too.  But some don't just get a little ripple or bump, they get the whole earthquake.  Support those with the earthquake.  You never know when it could be you and don't judge them, or try not to, for the way they respond when they're in the middle of the 9.0.  It's all instinct.  And sometimes, some don't even respond in the middle.  Some are like me and they don't respond until all of the tremors and aftershocks are gone.  In the quiet, they realize their life has been turned upside down and they finally feel free to scream and be scared and try to find some control in their new world.

No MAW Update

Quite a few people have asked me if we've heard anything from Make a Wish for Cole's wishes. We haven't heard anything. Trust me. As soon as he knows I will say something. Then, everyone asks if that means he's not getting the trip to Korea, his #1 wish option. I don't have any idea for sure, but my theory is that they just don't know, but they must be at least trying for Korea. His wishes were turned in over a month ago to the main office for our state. Usually families hear back really quick; as in days to less than a month. But, since we put down travel date options as next year they know they have time with us. I think that as long as they think it's a possibility, they're not going to totally rule Korea out and give him the #2 wish. I would say that as soon as they burn up all their options and realize that they can't send our, large, family to Korea they'll notify him pretty quickly that he'll get his #2 wish for a Cabela's shopping spree. I wouldn't think that would be a terribly difficult wish to grant. So, the short answer is we really do know nothing. We're still hoping and planning to go to Korea next year, no matter what. The thick of it is that Cole is going to have his surgery. We don't know when, but it is inevitable. We want to go as long as he's in the clear and before we're treading on too thin of ice and getting too close to the date. So, next year seems like a good time. If we drain ourselves to go, we drain ourselves. You can't wait for everything in life. There's never a perfect time for important things in your life, you just have to grab it and experience it. We're looking forward to such a memorable experience together. 

Make a Wish Meeting Soon

The Make a Wish folks called tonight to set up our first meeting.  They will come out later this week to talk to all the kids to find out what all the likes and dislikes are and to talk, in-depth, to Cole.  We got the packet from them late last week and went through it to see what to expect.  Since Cole's top wishes originally were a car to drive when he turns 16 or a hunting trip and they can no longer grant those he had to rethink.

The packet says they need 2 wishes in case their number 1 can't be accomplished.  Cole told us tonight that his #1 wish it for us all to go to Korea, to which I'm very proud of him for, but don't see how they can possibly accomplish that for a family of 7.  I asked him if he had a #2 he really wanted and he said no, not yet.  He's really been struggling with this.  I told him just to tell them the truth that he doesn't have a #2 that he really, really wants and then they can help him figure something out.

I asked him if he really wanted to go to Korea and he said 'yes'.  I didn't really know he'd thought that much about it. He never talks to us about it.  Teens are so non-verbal....like having a toddler again.  I guess this should be interesting to say the least.  And while I do know of a family of 7 that were granted the trip to Korea, I think they were just lucky enough they happened to find a donor willing to pay for the entire trip.  What are the chances of this chapter finding that person?  We'll see.  All I know is we had to have copies of our drivers licenses and the kids' birth certificates (all 5) ready for the meeting, so Brian did that Saturday.  Aren't you impressed?  Brian figured out how to use the scanner, so I wouldn't have to.

my big boy....

My first born will be 15 on Thursday.  Where did the time go?  Tonight he got his Varsity letter in wrestling.  It was kinda nice because they did freshmen and sophomores first and just had them all come up.  There wasn't supposed to be any clapping until they were all up there and coach went through his little spiel for each kid (he wrote something specific to each kid and what he though of their past and future).  When Cole was called the other boys clapped for him.  I thought maybe it was just because he was the last freshman to get called, but when they did the other grades they didn't clap like that.  They all know of his heart condition...kinda hard not to since you have to strip for weighins and they asked when they got curious about his chest scar.

I think Cole felt a little freeing when he finally told his teammates at some of those first practices.  He's never talked about it with any of his classmates and hadn't even told his best friend until about sometime last year.  He just is sort of quiet with personal things like that.  I think it surprised him with how supportive they all were and in return I think they were surprised with how tough he was.  He never gives in regardless...never weakens....always tries his best.

And tomorrow night, Cole gets his car.  We committed to buy a 1998 Blazer last night from someone that lives nearby.  And while it has a couple hundred thousand miles (close to anyways) it's in pretty nice shape and seems to run nice.  Though I had to figure out the ticking it was making and it seems like we will need to change the multi-function switch.  It's okay...the part is about $85 and I think we have some help for putting it in.  Otherwise the internet says it could cost $300 to replace.  We'll get it in.  He's SUPER excited.  It's really want he wanted and we got to stay within our budget, including taxes, so we're pretty happy too.  Now, we just have to hope that he gets some good mileage out of it before the motor goes.  We know it will eventually happen, but hopefully we get a monetary breather first.  It does look pretty nice for a 14 year old vehicle.

It was desserts only tonight and Jaemin LOVED the selection.  He really loved the green icing cupcake!

Another appt, hopefully

Another year.

Cole had his annual cardiology appt....the usual....EKG and echo.  Doc said that his heart function looked good.  Since he sees us in a satellite office some years he doesn't have his full records with him.  So he said when he got back he'd check last years and compare size of his right ventricle to this year's tests.  He said he'll call if anything's different, so I don't expect that.  I like this guy.  He seems more patient and gives us his time, which is so important in any doctor let alone a pediatric cardiologist.

I asked him to reexplain his heart defect since it's been nearly 15 years since I've had that and I wanted Cole to hear it so he begins to understand his own health.  He will have to start taking control, so he needs to have a beginning to understanding the complexity.  It was nice that he explained how a normal heart functions and then showed him how his heart worked before surgery and now.  He explained how his patch that replaced what may have existed of a pulmonary valve is not perfect and is now not closing after the blood pushes through and it regurgitates back down into the right ventricle. The right ventricle, in turn, is filling up with both that blood and the blood that comes in after circulation through the body causing it to enlarge.  At some point, his ventricle will get tot he point it can only do so much more and that is when he will go into failure.  But, they have to catch it before the enlargement causes his right ventricle (muscle) to stretch so much that it cannot perform it's job anymore because it's stretched out so-to-speak.  It's tissue can't 'remember' at a certain point and won't pump like it's supposed to if it becomes too damaged.  Fine line.

He always seems so shocked when he asks the standard, yearly, questions of "does your heart feel funny, feel like it's skipping, thumping out of your chest or racing?", "Do you feel abnormally tired or out of breath?".  Cole always says no and it's this look of disbelief.  He told me that we're fortunate to be on year 15 of a this repair.  We already knew that though.  We know the time is very limited now.  I did ask if he can continue with wrestling off-season and next year and if he can try to get his life guard certification and he said it was all fine.  But, if he has any of those symptoms just once it's over and he's done.  I know the time is getting very limited for Cole's valve and it's very necessary replacement, but we know it's coming we know it's eventual and we know we won't get by without it.  Until then, he'll keep enjoying his life.  And the doc is always so great to tell us how great of care he's getting to be doing this well this long.  I'd like to take credit, but I think God's just been taking care of him this whole time.  For all of this we're thankful.

I probably will no longer post after his cardiology appointments to say another year because we no longer know.  We're running into borrowed time, so we will do what we did in the beginning, when he was a baby.  We'll take a day at a time and enjoy whatever until we're told otherwise.  Here's to a healthy heart.

What to do, what to do

Such a quandary my son is in.  He has the 'chore' of coming up with something he would like to have or do.  Of course, I'm sure there is a monetary limit, so it's not the sky's the limit, but it's still a great opportunity.  As much as it is just that, it's sort of hard for him.  Think about it.  You can come up with one thing you really want to do?  Anything?  He's started a list and I've asked him to come up with a family thing too in case they ask him too.  It seems most kids' wishes include their families in some way.  He's got time, but he still needs to come up with some real ideas...which is so much harder than you think for a 14 year old.

What am I talking about?  Cole got approved for Make a Wish Foundation and the Make a Wish wish granters will be visiting us in a few weeks to talk with him and us about his ideas and to give us some ideas.  My understanding, after that, is that they go off and come up with a way to make a dream come true for him and they come back when it's all set up and the doctor gives him a physical okay (for health reasons).

I got the voicemail today from Make a Wish that his cardiologist had approved him.  I just always thought this was for terminally ill children, but if you actually read their web site, it's for kids with 'life threatening diseases'.  They throw them into different categories within that category and if their condition is 'progressive' they can be approved.

I was completely shocked to find out, but so happy for Cole.  He's had many years of being told no to so much when he felt well enough to do it, for his own protection.  He gets to be special for this now and have some sort of special experience or get something special.  I don't know what it will be in the end.  I don't know what he'll narrow it down to or what they grant.  It will be another surprise and very possibly still in 2012.  So make fun of me, 'cause yeah I cried when I heard the message.  Cole, the otherhand, was very matter of fact when I told him, but he said it will feel more real when there's  a wish.  I get that too.  He's a guy. 

The season has come to an end

Cole is done wrestling.  He definitely gave it his all and if he'd had one more win he would have made it to the final 4 for the district. But, then again he was up against a sophomore with a lot of experience.  The other 3 were the top ranked in the state.  Tough challenge.  He did well and we're so proud of him.  He wants to continue on with conditioning with one of the coaches until next season, which is his choice, but good for him.  Next year will be better, I know it.  To celebrate I bought him some nice, fattening, ice cream since he's had to watch his weight for last few months.  Hopefully the cardiologist will have good news for us in two weeks.  This will be the very first time he's competed in any sport and worked out regularly, so I can't help but wonder if or how it might affect his heart.

        Cole, I love you and I'm so proud of you.

And from his first black eye, earlier in the season.

Ups and Downs; parenting is not for whimps!

I have hurt so much, in my heart, over the years of parenting.  It's so awesome to celebrate with the kids, but when they hurt I'm not convinced I don't hurt double.  It literally hurts to see or hear them hurting.

Cole, came home from practice yesterday and was definitely upset.  It took awhile, but I got it out of him that a volunteer coach, that is not affiliated with the school in any way, said some things that I found less than an appropriate for an adult to say to a 14 year old.  He said that he 'sucked' and would 'never win a match' and 'never amount to anything'.  He cried so hard he gasped. That's so hard to watch your tough teenager do that.  The 'coach', and I say that lightly, said it quiet enough to make sure the other boys didn't hear it and he waited for the head coach and assistant coach (the teacher/paid coaches) to leave before he did it.  It was something he had planned and waited for his moment to break him.

We both talked to him for awhile last night.  We tried to talk him into bringing it to the attention of the head coach, but a part of him was afraid one of the other volunteer coaches (who is a teacher and this guy's friend) would retaliate against him, academically.  I could see that based on conversations I've had with this teacher.  So as hard as it was I said nothing last night or today.  We spoke to him again tonight and Cole says it's all fine he just wants to forget about it.  We told him he should still approach the head coach, but we decided to leave it up to him.  I asked him to write down his exact words and the date in case he pulled anything next year, should Cole decide to wrestle and I told him if he did say anything or do anything next year something will said and it will be stopped immediately.  Bullying is hard enough from your peers, which Cole has experiences, but adults?  Come, stinkin' on!

As of last night he said he wasn't going to wrestle next year, but tonight he said he probably still will.  We told him, last night, he cannot let this guy keep him from doing what he enjoys.  I would be livid if he quit after liking it so well, because of what this adult said!  As long as he still plans to wrestle, on his own terms, I won't say anything.  He seems much more upbeat today and is ready for districts.  So, while I'm still a little upset and know this guy had no place saying such a thing to any kid, I am respecting Cole's decision after much discussion.  He went out with some friends after practice (I know he was shocked I let him go too) and seemed pretty happy after all that.

I know I've said it before.  People think terrible twos and threes, etc. are so horrible.  The older your child get the harder it gets.  The harder the hurts are for them and that hurts so much on mom.  Now, I'm praying, like crazy, and if you can pray too that would be great, that there will be an upset at districts and somehow he'll be a state qualifier.  I want nothing more than for this heart kid to do things no one thought he ever would.  I don't mind watching my kid lose, honestly.  It's not about bragging rights, but for all the other heart kids out there and just for his spirit I want to see him go just that far!

Praise God!

Cole's cardiologist called and told us about the MRI last week.  He said he saw nothing he wasn't expecting.  I asked him, point blank, if we should discontinue planning our trip to Korea in 2013 and he said keep planning it.  He thought that when he sees him next year he'll know he'll either have to do it then or it may even wait until after the trip.  Now he's saying he may be able to wait until after the trip.  He said definitely no more than a few years, but maybe more than a couple.  He said 11 minutes on the treadmill was great, so we're happy!

Two days of doctors down

Cole is done with his workup.  Very painless and all done.  Results of the EKG and echo were no different than in July, which was expected.  We'll have MRI results and dilation of his right ventricle later in the week or early next week.  Still unsure if he'll have a good idea of when surgery will be off of that.  Not sure if we should plan to go to Korea anymore or not.  But, Cole and I had a nice day together.  Nothing says love like spending 11 hours with you mom.  We talked a lot and it was nice!

I spent today trying to get Jaemin's autism evaluation set up.  While I'm not completely convinced of it, the ped says he has enough symptoms to be concerned and he may just be very low on the spectrum...meaning very high functioning.  While we wait for his April evaluation we're trying some changes to his acid reflux med and giving him yogurt to make sure it's not a yeast sensitivity.  I feel like we have to do something in the next two months.  May as well.

I've been watching both of my boys so much more intently lately.  I'm waiting for Cole to suddenly go off, so to speak.  I mean when's he going to suddenly start having symptoms?  Is it going to be sudden like when he was an infant, or am I going to get some notice on surgery this time?  I have no idea what to expect and that's the part that scares me the most.  Jaemin, I just watch for anything he does that keeps him off the spectrum.  Cheering at anything he does...even though mostly he neurologically typical.  I find myself holding Jaemin more and seeing just how intense my love is for him and how lucky we are to have this little angel in our lives no matter what happens.

I'm the luckiest mom in the world!

Too many irons in the fire?

Just a saying, but I think that's where we are right now.  Unfortunately, with 5 kids, there's no good time for anything.  You just let life take you where it does and you try to respond rather than react.

We're coming off the 2nd week of Chelsi's play.  This weekend is it and we're DONE!  While I think she will miss seeing her castmates, we both very much need a break.  Too many late nights is doing me in and for sure her.  She acts like a diva and it's mostly lack of sleep.

Tomorrow, Cole has his big heart work up.  We'll spend all day at the hospital so he can get an EKG, echo, MRI and stress test.  Then, hopefully, in a few days they'll have a better idea of when his heart surgery will be.  I'm hoping for something, so we're out of this lost area I feel right now.  I know it's not a perfect science, but at some point they'll have to make the decision to do it before he has permanent damage to the right side.  It's a personal call in ways, but they will make it as a group of cardiologists in the practice and they have a formula they calculate off the MRI.  Forgive me because I don't explain things well.  This is all new to me since the previous doctor never ordered these tests and should have been so they could have been watching the progress of his leakage.

Next week....oh next week.  I'm dreading.  We're getting some hardwood done, so we have to move around furniture.  We just finished painting the girls room, which made them very happy.  It's the first time it's been painted in 11 years and was painted for Chase while I was pregnant with him.  They picked an orange color that's sort of like canteloupe.  Then, Kaelin picked out black and white rugs for the floor.  Right now their bunk beds and all their belongings are piled up in my bathroom on top of the tub.  I knew that large tub would some day be handy!  :)

I also have a quick procedure next week.  No anesthesia, just a local, but I'm not looking forward to it since the lump is fairly large.  A friend was diagnosed with breast cancer recently and after B talked to her about it she has been given the sebaceous cyst diagnosis first too.  I don't know when hers grew or how long it was there before she was biopsied and haven't had time to talk to her, but B wants it out right away, so I made the appointment with the surgeon I saw last year.  Remember the cyst, no it's an adenoma, no it's a cyst?  So, while it hasn't grown since they've been watching it for the last 1 1/2 years I'm going to have it removed.  It's probably been there for 3 years or pretty close to.  I guess at some point it grew, huh?

Then, after all that's over we can have our furniture back in place and resume living, right?  I'm always a little leary when we do something to the house of any substance or go on vacation.  We don't have the greatest track record.  The last house work incurred Brian a spinal cord injury the day after we committed and started and the last vacation ended up with Cole having an appendectomy 4 days prior and Chelsi a febrile seizure on the interstate in another state.  Those memories flood through my head and though I try to shove them out I can't help but be a little gun shy that it could recur.  Cole has a BAD habit of having surgeries on people's birthdays, so this heart work up worries me a bit.  He had his appy on Chase's birthday and his heart surgery on his dad's birthday.  Obviously not planned!

But, as I tell others who get worried or stressed about things, just try to breath and live your life.  Nothing's going to change what's going to happen!

Broken Heart

I'm still trying hard to understand Cole's heart.  I 'thought' I understood it 13 years ago.  I just can't believe what was explained to me was not really the whole story.  Our family doc is getting his full records so he can help explain things to me since the pediatric cardiologist is 2 hours from us.  I can't just pop in for an appointment and getting them on the phone has been near to impossible.  I just have generic questions, but since I can't see the post op to know exactly what was in there I can't ask those questions very well.

The PC said he has a goretex (PFTE) monocusp.  The NP (that works for the PC) said the documentation they have says transannular patch with monocusp.  I'm not totally understanding if they both actually mean the same thing or not.  I understand what the patch is, but I don't know if they replaced his valve, patched over his valve or if it was never there.  Since no one ever said atresia, I'm guessing it was there, just maybe damaged?  After all my googling it looks like standard procedure for a standard tetralogy case is to do what they told me they'd be doing.  They'd patch the holes between the ventricles (he had 2)...at least that's what I was told 13 years ago...who knows now...I'll check for that too.  Then they take out the muscle build up around the valve that is narrowing causing the stenosis.

When Cole was in surgery they called us in the waiting room to tell us they thought they had finished, but had to put him back on bypass because his pressures were still too high.  They never explained what they did in that time, but the new PC's office says that's when the patch was put in place.  Makes sense.  But, why never tell us?  From what I understand, if reducing muscle is not enough that's when the patches are put on.  However, withing the first 20 years another surgery is always required and it's to replace the valve completely.  So even if they spared his valve it will be replaced.  The information I found shows that usually about 10 years out is when the leakage is too much.  Most kids are good until then, depending on their specific circumstances.  So, I guess if we make it 13+ years we're doing good?  Just wish we had known.

So, we'll have another appointment next Spring and do the full run of tests including, xray, EKG, echo, MRI and stress test.  Then, we're hoping they'll have a better idea of how well his heart is handling things, how much enlargement there is on the right side and when the surgery is coming.  For now, his xray confirmed his echo and he should do okay to next year.  Can't say I'm not still nervous, because for the first time in 13 years I am.

I'm trusting God.  I just remind myself of that and I feel better for a bit.

Lisa

Anxiety? Probably

For the 2nd night in a row I've had horrible dreams.  I don't even want to outright type what they're about.  And I won't.  It's too scary.  I know it has to be related to Cole's news.  I can't believe it's bothering me this bad.  I usually don't get so rocked like that.  Yeah, I might let go of a tear or two, but rarely does it hit me to the extent of dreams.  Hopefully, I get to have a conversation with the nurse practitioner tomorrow and questions get answered and maybe my subconscious can rest.

I hope.

Not so good news/Living for Today While Thinking about Tomorrow

I've never been good about living for today.  I've gotten much better after Brian's accident.  My little reality check that no matter how much you try to prepare for things you can't always.  And you never react the way you think.  The call for Jaemin taught me that or reinforced what I already knew.

We're planning to go to Korea in 2013, but at this point we're not sure.  Not sure if we should do it sooner or expect to do it later?  Not sure at all.

We went to a new pediatric cardiologist today, as I wrote about last night.  Cole has been seeing the same guy for 13 years.  We have been told for the last several years (since he was 5) that 'if' he needed anything it would be open heart, but there would be no way to know.  Then he always eluded to Cole never needing anything again after he entered adulthood.  We also were told a couple of years ago that he could do any high school sports he wanted to after being told in all the previous years that he couldn't.  I decided to let up on my overprotectedness this year and let him play football as he'd been wanting.  I asked specifically about football.

Today we saw the new doc, after personal references with other patients' parents.  We really liked him.  He took so much time with us and talked to Cole....not me.  He drew pictures of Cole's heart to explain to him and I what's going on.  And when I asked about football, he said 'no contact sports'.  So football is again out.  He can play baseball with a chestguard and basketball is okay, but the constant running could be hard on him.  Then, he proceeded to tell us something we'd never been told.  Cole's valve had been completely replaced at surgery in 1997 and valves don't, apparently, last this long.  He was astonished he was still okay after 13 years.  They don't use the valve he has anymore and the new ones only have a life of about 7-10 years and have to be replaced via open-heart.

So, today we were told open-heart surgery IS coming.  So he had to deal with being told he couldn't play the sport he wanted to and that this surgery is coming.  We don't know when.  He has no symptoms other than his right side is enlarged from the significant leakage from the valve, right now.  We're doing an xray to see how enlarged it is.  Then, next year he'll do a stress test, EKG, Echo, MRI and xray at the hospital.  He'll be able to better determine when the surgery may be.  So we literally don't know if it will be next week or 2 years from now.  It all depends on that valve that has already exceeded it's lifespan.

I drove back to work after the appointment and went through periods of telling myself everything is fine to periods of feeling like crying.  But, I won't.  I'll leave that to him.  And when I told him it was okay to cry and grieve his loss, he did.  I feel so bad for him.  I wish I could make him feel better, but right now there isn't anything I can do.  I just hugged him and talked to him and of course, threw in the usual "you have to remember there's always a kid in a worse situation than you".

For now, I will just pray that, as usual, God will take care of us and keep us all safe and healthy.  And that when the time comes He will guide the surgeon's hands as he did 13 years ago to take care of my son.  And I will hold onto and remind Cole that the surgeon said that if a new procedure passes the FDA in a few years that this may be his last open-heart.  Instead he could have it repaired by cath.  Can you believe that?  Valve replacement by cath.  Amazing!