Thursday, May 13, 2010

oh, seriously, come ON!!! enough is enough, already!!!!

Now, you know i don’t usually post this sort of thing, but i really need to get this out, and i figured, hey, why not blog it for everyone to read? Because i know you’re all dying to know about the insane minutiae of our lives. (haha)
First up, the week’s goings on at home. Sigh.
It had been pretty windy and rainy here earlier in the week. So much so, in fact, that a branch on a large tree in the backyard battered the chimney, and on Tuesday night, as i was out taking asher’s meds over to his dad’s place... the chimney fell. Not the whole thing, mind you. Just the top 3 feet or so. Three feet of cinderblock and clay. Came crashing down. Onto the roof of the bathroom.
Now let me explain this a bit so you have a visual:  the house is two storeys at the front, with the bedrooms on the second floor. At the back of the house is a one-storey addition which houses the kitchen and bathroom. The chimney is attached to the 2-storey part, and it was quite high because of the high peak. So it probably fell about 15 feet onto the roof of the bathroom. About 400 lbs crashing down, which dented the roof, broke the frame beneath, and sent a broken beam through the bathroom ceiling, along with all kinds of insulation and drywall. The ceiling was literally caving in.
I’m happy to say that insurance is covering it, which is nice, although i had a couple not-so-small panic attacks when i thought about the deductible. I’m a single mom with no income, so where i was supposed to come up with $500 is beyond me. BUT!! When the adjuster and project manager came over to assess the situation the next morning, we were outside looking at the chimney and he (project manager) was talking about rebuilding the chimney. So i said, “well, the chimney isn’t used anymore. The exhaust from the furnace comes out of that pipe over there by the ground.” He and the adjuster looked at each other, and she (adjuster) asked him if he could just level the chimney off and cap it, which he said they could do very easily, so she looked at me and said the most glorious sentence i have heard in a loooooooong time: “well, since that’s the case, i’m going to waive the deductible for you, since to rebuild it would have cost a lot more money.” That’s right, folks, no more deductible for me!! hooray!!!!!! So that was a relief, so much so that i nearly burst into tears.
now, during the repairs, we can't stay at the house. this is our only bathroom, and it's going to be out of order for a couple days while they re-do the bathroom. so... they're going to put us up at a hotel for a couple days, and i don't have to pay a cent for that!! hooray!!!! and to be honest, i'm looking forward to it. and so are the kids. it's not a holiday per se, but it's as close to one as we're gonna get for a while, so we're pretty excited.
in the meantime, a couple crews have been out to seal up the roof and make it water-tight, which is nice, since we don't need water damage in addition to all of this. and yesterday, another crew came out, tore out a lot of the drywall from the ceiling (all of which needs to be replaced, by the way), and sealed it up with plastic so that (theoretically, at least) that nothing else will come crashing down. it's all sealed up, as well, and the broken beam and other heavily damaged areas are now braced with 2x4s. but the kids all know not to go near the beams; asher was telling smokey today, "no touchie touchie, smokey. no touchie." too cute. especially given that he was shaking his finger at her from the other side of the room. i love that boy.
but you may have surmised from the title of this post that this is not the end of the chimney saga. and you'd be right. you see, this afternoon, i noticed that the tree, which is about 6 feet (if that) from the house... is broken. twisted, cracked and leaning on an unnatural angle. and the top of the tree, which is higher than my house, is hanging directly above the back bedroom. my back bedroom. and the bedroom at the front of the house on that side. the boys' bedroom. where asher sleeps. right next to the outside wall. not that it matters which side of the room he's on when the ceiling and attic and roof all come crashing down. so tonight i'm praying the tree holds in the storm (which it has so far), and i'm going to be pointing it out to the adjuster tomorrow. i'm hoping that they will pay to have the tree removed to avoid any further damage to the house. because if they don't take it down, it's going to come down on its own, and it will take the house with it, which will cost them WAY more money than a simple tree removal. so pray/cross your crossables/send reasonable vibes that they'll go for this idea, and i won't have to pay to have the tree removed. (i've already called the city. it's too far onto private property for them to remove it. which means i'll have to take care of it myself. so i'm hoping i don't. because i really can't afford to do it. ugh.)
so that's the house this week.
now for asher, which is going to be a short report this time. he's been doing very well lately. in fact, he's much better. that is, if you ask him. haha i shouldn't laugh. he is doing well. he's got a lot of energy lately, which is lovely to see. however, he is still pale, and while he has a lot of energy, he also gets tired much more quickly than pre-fontan, and he gets short of breath pretty quickly. he is also still sweating while he sleeps, and he doesn't always have a great appetite lately. we're hoping that he'll just need a minor adjustment to his pacemaker, which they can do in clinic on monday morning, so i'll keep you posted. 
and we're hoping for something simple like this, because frankly, i'm running out of steam here, and i don't know how much longer i can keep going like this. the last few months have really taken their toll on me emotionally. i'm completely worn out and don't have the energy or brain power to handle any more crap. right now i'm on the verge of tears just typing this, which might also be due to the fact that i'm really tired at the moment. a good sleep just might do the trick, but there's been so much stress over the last while that i'm really feeling worn out and drained. i know i'll keep going, and whatever is going on, i'll deal with it, because that's what i do. but i'll also admit that i haven't always been taking care of myself the way i should, but that's my own fault, and i can and will fix that. so no worries there.
and yes, there's more. and this is a rant, so feel free to stop reading now. i just need to get this off my chest.
for those of you reading who are not heart parents, or for those of you whose heart kid is (relatively) mild... say, has never had surgery... don't try to tell me that i don't get it.
i received an email this week from someone, and it really hurt me. and insulted me. and frustrated me. i was told that i "don't understand what it's like to have a child who gets admitted for things that everyone else's kid gets over in a heartbeat." apparently, i don't know what it's like to have a child on whom "the little things take a real toll." i have no idea what it's like to have a child who is unstable. i don't understand.
apparently, this person has forgotten that asher has spent time in ICU with a cold. that he has been admitted three times for a HEADACHE!! (ok, granted, it was migraines that were causing febrile seizures, but still! who else gets admitted for a migraine?! and three times, at that!!) and that one of these headaches sent his CHF into overdrive and he needed open heart surgery because it devastated his heart, but he couldn't have the surgery because his pressures were so high the operation would kill him. croup required an extra trip to cardio. RSV, for which bram spent 4 days in hospital, got asher admitted for four days. 
i am sick and tired of people trying to "beat" me in some sick, twisted competition to see whose child is more unstable. really? is that a competition you really want to be in? because you can't win that one against me. i'm sure (hoping, for purely selfish reasons, admittedly) that there is someone out there who can beat me. but i don't know who they are. sure, i take asher's stuff in stride and deal with it and somehow manage to laugh and rejoice and smile through (most of) it. but it's hard sometimes. really hard.
because it doesn't stop. and while some people just keep their eyes peeled for the tiniest things that might be going wrong with their child, i would much rather bury my head in the sand. i can't even count the number of times i have said to doctors, "what i'm looking for here is, 'mom, you're paranoid. go home.'" and you know what happens instead? we get admitted. (but you'll notice that i said this to doctors, which means that i took him in anyway, even though i didn't want to, and i was hoping i was wrong.)
know what sucks? HLHS. 
know what else sucks? someone telling you that you have no idea what it's like to have a child who is unstable and could die from something little. being told that you don't understand what it's like to have a child who is in and out of hospital all the time. being told that you just don't understand this life at all.
because let me tell you, i could write a book about it!! (or at least a blog or two.)
if you want to be supportive, or a friend, or even if you're venting about the crap in your own life (which i'm very understanding of; we all need to vent, because we all have stress, and what's nothing to me might be major to you, and i get that, so vent away). just don't. don't. DON'T tell me that i don't understand. because if that's what you think, knowing anything about asher and his journey...
then just leave me alone.


ChristophersHeart said...

Well said Heather. All too often you hear of parents looking for problems where there aren't any, watching for teeny little signs and making themselves crazy. Not to mention the impact I feel it has to have on their child. I mean if you constantly run your child to the doctor, the child is going to grow up thinking they are fragile. It's so important to let our heart kids be first and foremost KIDS. Take them in when something is REALLY wrong, go to check ups, but make sure you remember these are children who deserve to just be kids and live as normal life as possible. And every day that your child is stable, that they are at home with you, within huggable distance, be very very grateful. Those are days worth celebrating.

Thank you for blogging about an important issue in this CHD world.

Hope's Blog said...

What a week you have had...ugh. House troubles are a pain, but at least you can spend a few nights in a hotel...hopefully with a pool!

Now...onto the email. I will never understand the need to compare children or how sick they are. What parent wants to spend any time at the hospital with their child? NONE. What parent wants to worry every single day about their child's health? NONE. And...HLHS does SUCK!!! I don't care what anyone says about does. I love my daughter and you love your son, but it SUCKS that we have to go through this with them. In a 'perfect' world, CHDs of any kind would not exist.

With that are a wonderful mom and I LOVE your blog!

Kerri said...

So sorry for your recent "troubles." Wow, the house, just wow. Oh well, a little room service never hurt anyone. Right?

Amen, sister on the "you just don't understand" card. I just love it when someone goes on and on about how a child's "cold/strep/allergies/asthma/fill the blank" is so awful. Or a simple hospital procedure that lasted for a week is just the "most difficult thing for a parent to go through." I find it very difficult to sympathize. I know I should, but really. Don't complain to me.

As a heart mom, I've been there, done that, times 10. I cherish simple colds. One week in the hospital, I could do with my eyes closed and hands tied behind my back!! Thanks for venting and allowing all of us other heart moms to read, feel validated and vent some more! :) Hope your hotel vacation is a fun one! :)

Kerri said...

Oh, and the Blaylock name. We too found it extremely ironic that the family name we had chosen very early on was the name of the actual procedure that saved Mary Clare's life!