Making an effort

to get back into taking pictures.  Not professional, but fun snapshots of the kids.  I've just not taken the time to grab the camera in so long and poor Jaemin really is the typical baby and has fewer pictures than the other kids, so I'm going to really, really try.

Cole's Therapy

We decided that between Cole spending so much time at his friend's house so he can play pool and needing something for him to do inside while he recovers from his surgery, it would be good to get a pool table.  We had been thinking about it for awhile and kinda watching, but we kicked it in a little bit when there was more of a reality he'd probably need his heart fixed again.

We finally found a good deal on a table on craig's list and put it up today.  We had to do a lot of purging, which really just meant throwing out puzzles that were missing half the pieces, etc.  Not a big sacrifice.  We actually were able to rearrange the rec room to make a little more sense and now there's about an 8x10 living room area (seriously small I know) and then the bookshelf with some toys and books is lined up in the hall from the garage and then the pool table area.  But it works and the kids are super happy....at least the older 3 that can play pool.  We figured with 5 kids, it would be a good investment and way to spend more time together and also to get to know their friends.  We played several rounds tonight and had a lot of laughs.  Mostly at the expense of Chase and I because we're so bad, but who's really keeping track.  The boys thought the gloves that came with the set were pretty funny, but then got attached to them saying they could shoot better.  And one of these days someone will have to google what the set of tiny balls are for.  I have no idea.

We were playing a game where we each had a number and you had to make sure it didn't get knocked in.  If it did you were out.  Brian couldn't remember which one his was, so I reminded them they needed to keep better track of their balls and well, Chase couldn't stop laughing.  Such a 13 year old.

And when I asked the big  boys to show me their gloves, little man Jae had to join in with his brothers.  That his hand front and center.

And my little Jae loves his picture taken and despises wearing clothes.  This is usually all he'll wear.  Needs new Ninja Turtle pants.

Such an awesome gift!!

Korea found a baby (younger) picture of Jaemin.  I've never had one until he was 5 months old and sitting up in Seoul.  Nothing prior to Seoul.  I had asked before and they said they had nothing.  But, I asked again and they found this.  It looks to be newborn and he looks so much like Chels (side by side).  He IS SO cute and looks just like the Jaemin I love today.  My heart just beats.

this is my truth

Maybe if I actually write it all out, I'll accept it and give my my own hopes and dreams for my kids and let them have their own.  I shouldn't even say hopes and dreams as much as  letting them suffer the repercussions of their actions or nonactions.

I love my kids, I love my husband, but we are not perfect.  We're not perfect spouses, we do not have a perfect marriage and we do not have perfect children nor are we perfect parents.  My struggle is and has been, for a long time, watching Cole  struggle so much in school.  I sometimes wish I had known then what I know now.  I wish I had known that heart conditions come with neuro delays in emotional  and social areas and ADHD is extremely common to go along with the difficulties of a heart condition as serious as his.  Maybe then, I would have gotten an IEP.  Then, when he was younger would he have gotten more help and been a more  confident student.  Maybe he just really never did care?  Maybe it's time that I just let go and realize that regardless of his inattention to school and the ability to really dig in and study due to his heart condition or maybe not due to his heart condition, there is nothing I can do.  I can't help him.  I can't change things.  We have bribed him in every way possible.

It is no doubt that since he found out about having his surgery his grades have slid.  He's been able to barely get that B average and slide in there, but now it's not even that.  It's not terribly lower, but lower.  I know he's scared.  He won't say it.  He won't admit it, but what teenager wouldn't be scared of something so big they've never encountered before?  I know some teenagers take this kind of life and flourish.  They don't let it get to them.  He's just not that kind of kid.  I don't think he really doesn't think he has to get good grades and do something with his life.  I think a part of him, right now is paralyzed with some fear.

I need to let go.  I need to let go of the hope of him becoming 'that' kid.....'that' student.  The one who doesn't let the disease get to them and no excuses.  He is scared, he does let it get to him and he just is who he is.  He's not going to suddenly pull his grades up and say "hey, I'm in charge of my future and I care".  There.  I said it.  I'm saying it and hoping I can let  it go.  I'm hoping I can quit trying to fix it.  Let him really fix it or......not fix it and fail on his own.  I will always love him.  I will always care, but I can't do it for him.  I've tried for years to help him.  It's time he does it for himself.  I don't want to ever be able to say I told you so.  I will always have hope that he will get it, but I can't dream about that anymore.  He is his own person.  After Saturday he will only have one more year until adulthood.  I can keep trying to help him and give him my pearls of wisdom when he'll hear it, but it is HIS life.

Different kinda night

I reluctantly let Cole go to work last night.  It was supposed to drop snow, ice or both at some point, but they couldn't seem to narrow it down at all.  Our weather forecasters this winter have not done a good job at all!

The girls, Jaemin and I watched the end of Thor and had some popcorn.  They definitely enjoyed!

I knew I wouldn't sleep well since Cole had to work past midnight.  I'm sorry, it's ridiculous that McDonalds lets almost children manage their restaurants without enough sense to send a 16 year old child home when ice and sleet set in.  He had our 4 wheel drive, but nothing fairs well on this stuff.

1am came and went and nothing.  He finally called and said he'd made the 10 minute drive in 40 minutes!  He said it was really, really bad.  Well, then he tried to back down the driveway and slid all the way down until our swingset, dog kennel and basketball goad stopped him.  The kennel is bent (Camo was in the house due to the cold) and he sheared the basketball pole clean off.  I think it scared the crap out of him.  He was crying.  I told him we didn't care about the pole or the dent it might have left in that almost 20 year old truck.  I was really thankful that he had made it home in one piece.

Needless to say, this morning we had a talk about just parking in the yard at the top of the hill, who cares about the yard.  We also told him that a stupid minimum wage McDonalds job is not worth his life and next time he has to tell them if it starts he has to leave.  His life doesn't depend on that money, but his life does depend on him making it home alive.  I told him after his surgery he needs to look for a job that isn't so stupid and immature and irresponsible to their employees.  Brian and I decided we need to get an estimate on some more concrete at the top so he has a place to park without worrying about him hitting the house or sliding into the woods on nights like these.  I'm tired of being up, worried for hours like last night.  Hopefully, it won't be terribly expensive, but we have to do something.  Chase will be driving in 2 more years and we'll have 2 of them to worry about.

God please keep my kids safe.  And please let adults who are responsible for them have a better head on their shoulders than these people have.

After some tears and anxiety we have the date set

He had picked the day a few days ago.  We worked with the 2 weeks in March the cardiac nurse gave to us.  I called and left her a voicemail, but she never called back.  So, then, I called and she said the doctor (there are two cardiac surgeons) she was planning on may be on Spring break that week.  Uhhhh....why did you give us the choice then?  She said she would call back later that day or the next day.  Me, thinking by the same time the next day was growing inpatient by Friday.  I had to leave work at 12:45 to get Jaemin to kindergarten screening by 1:30.  Needless to say, I knew I couldn't talk to her in the middle of his screening at the busy elementary school, so I called to ask before I left.  Well, the receptionist decided I really needed to be stressed out and she asked how she could help me.  When I let her know I just needed to find out if we were getting the date or not she told me the nurse was wrong and the doctor would not do his surgery that day.  I told her that that day worked out perfectly and I needed to know for sure before they moved it up an entire week and I only had 1 week to prepare, at home, work, etc. plus figure out what to do with the kids because Cole specifically picked a day the kids would have no school to work around.  She couldn't seem to understand what I could possibly need to do before his surgery with 5 kids to think about.

The nurse called shortly after and I explained to her that the weekend was here, we only had 2 weeks left to plan, I had almost no minutes left on my prepaid phone to keep calling to get this arranged and get my questions asked.  I explained that I just needed to know.  She was NOT very nice to me.  I won't go into exactly how she talked to me, but needless to say I ended the conversation with "I'm at work and can't deal with this right now, by the time you call this afternoon at home I will have talked to Cole and maybe we'll get a 2nd opinion at the neighboring children's hospital".  I was starting to cry from the frustration and stress and didn't want that at work.  She called back and left me a voicemail to apologize for how she spoke to me and said she would call after kindergarten screening.

I walked in the door after getting the kids, after screening, and one of the surgeons called.  He said he just wanted to make sure we weren't stressed about the date because the idea of this surgery is stressful enough on a family.  He assured me one of the two would be there that day and he would be set to have surgery.  He said in addition, to alleviate some financial stress (yep, the out of pocket max on our insurance is high deductible, so that is high too) by paying for our hospital night since we have to come the afternoon before to meet and run tests.  He said the nurse would be calling that night.

She called last night after we ran for groceries and apologized again.  She told me they knew their job and sometimes forget all of the planning a family has to do prior to surgery (especially for 7) and how stressful it is.  She told me they would get us the hotel room and maybe even a 2nd night so Brian wouldn't have to leave so late.  We're hoping to stay a 3rd night (on our own dime) so that if he gets moved to step-down by that Sunday the kids can see him before they leave.  They, more than likely, will not be allowed in ICU, so one of us will just keep them busy at the hotel until they can see him, unless they say it isn't going to happen.  I think it would make Chelsi and Jaemin feel better for sure.

The worst part will be 5-10 days of hospital food and the expense of it.  Luckily, she said they have a fridge and I can bring some snacks and food with me and I can get by on little.  He'll be well fed since he's the patient.  I felt so much better when she gave us the date for sure and we could move forward with the next step of planning.  With this kind of thing and this many people and a hospital far away, it takes a fair amount of planning in steps.  It's not like it's an outpatient surgery and he'll be out in a day or back to school in just a few days, this is 3 weeks away from work and school with the possibility of only returning part time until he gets his energy level and tolerance built back up.  I have no doubt he'll do well and luckily he's very strong and very healthy, but open heart surgery is tough on the body and stressful on a heart.

Soon enough, like all of the other things in our lives, we'll be able to look back and just smile at the memory of it.  And while he'll have a lifetime of these, the kids will be older and we'll be more seasoned at it as will he.  And, hopefully, there will be advances to lessen the number of open-heart surgeries and allow for some cath procedures here and there instead.

It's time, we've picked a date.

The Cardiac Coordinator called today.  She said we can pick any day.  Feels weird.  Well, today's  a good day to saw open my son's chest and play with the one thing keeping him alive.

She said there were no real, off-limits, days, so we decided Cole should decide.  We took the school schedule off the fridge and since they're off 1 1/2 days, after his birthday, next month, he decided he wanted it then.  It will be 1 1/2 less days of missed work.  It will also mean we can more easily take the other kids out of school to be there that day.  They will more than likely not be allowed to see him in the ICU since it will still be flu season.  She said they could come back when he's in the step-down unit, but that will be 2-3 days and it's a 2+ hour drive, so I doubt they will.

Now, I just have to wait for her to call me back tomorrow morning  to confirm.  We'll meet his surgeon the day before.  Don't think for a second I hadn't already done research on the two surgeons there.  He'll have blood tests, get xrays and sign some forms.  Then, we thought we could take the kids to a hotel (she says there are hospital discounts) for the night and they can swim before the stressful next day.  It will be good for Cole too.  Surgeries are at 7am except on Wednesdays, so it will be 7.  I'm dreading saying good bye to my sweet 5 year old for so long, but I know I need to be with Cole.  He will need me more.  Jaemin doesn't really need me and won't miss me half as much as I'll miss him.  Thank God for Skype!  I don't have many cell minutes since I'm on a prepaid plan, so that leaves my only real communication with Skype.  Not going to be easy for that long of a period, but it is what it is.  I'd like to up Cole's texts too, so he has something to do.

Hopefully, the pool table will delivered next week so he can do that.  With the snow in the forecast who knows.

I have 2 more weeks to tie things up at work before I'm gone for 3 weeks with Cole.  Just thinking about all this is so weird.  It's been 16 years of being told he will need a cath, then he'll need surgery, then he won't need surgery.  Then, we switched hospitals and were told he would definitely need surgery.  So thankful we switched 3 years ago.  They had never done an MRI and all tet  kids should have an MRI.  You cannot completely tell from an echo or EKG the true picture.  We would never had known without the MRI.  Dr. R said his heart function was still good but the dimension of his right ventricle had increased so much from 3 years ago and if he waited much longer he could lose function and you do NOT regain that.  Honestly, I think the other hospital would have killed him.   God tends to lead me the down the right path and even though I'm usually pretty scared and leery to go, I'm glad I do.

If you personally know us, we don't need a whole lot other than  prayers and maybe cards for Cole.