Letting it all out...

[Elyssa414]

Okay, so I need to VENT. And since I can't afford therapy, any of you who are unlucky enough to stumble upon this journal will be the chosen recipients of my overflow of emotions and stress and worry and grief.

First, the insurance factor.

After 10 months of fighting tooth and nail to get our medicaid back for our medically fragile child, I found our loophole! It's not that we don't have insurance, it's that regular insurance is laughably inadequate when it comes to a child who is in and out of the hospital... So, the loophole: IF we do not have insurance, we can just squeeze under the financial restrictions for the SCHIP program! (meaning we pay a small premium every month, but get the same coverage as before!!! Which is all of his appointments, therapies and medical supplies covered 100%!) However, if we have access to insurance, (which we do), and we cancel it on purpose, (which we did), there is a four month waiting period before he would get on medicaid. Hahahaha... 4 months with no coverage?!?! Not a freaking chance! Not for our little bundle of joy! So, here comes the said loophole: IF I cancel BOTH the kid's insurance than the ammount we are saving in insurance premiums is greater than 2.5% of our gross income, meaning that they can WAIVE the 4 month wait!!! But, alas, there is a catch. We have to have proof in our hot little hands that they have lost their insurance BEFORE we can apply for the SCHIP program... But, if we don't have the application in 10 days before the end of the month, then coverage wont start on the first. AND Our insurance company WONT give us a "last date of coverage letter" until the coverage actually ends... on the LAST day of the month. URGH. Total catch 22. Basically no matter what I do, we will have a month of NO coverage. A scary thought for a child who is having well over 100 seizures a day. Worth it, though. If we can make it through November, or find a way to get the medicaid started as soon as we get that precious letter, because because then brain surgeries, numer 3, 4 and 5 will be covered along with rehab and therapy and follow up at no cost to us... (the other viable option would be to shoot my husband and use the life insurance to pay for all of this, but the glitch there is that I actually like my husband, and $300,000 really wont cover that much anyways... lol)

So here we are at October 22nd, knowing that the kids will lose their coverage with Regence on the 31st, and biting our fingernails until we can get ahold of that magic letter from them stating that they are no longer covered... Now if something goes wrong, and we CAN'T get back on the medicaid for some reason, we are COMPLETELY SCREWED, because there WILL be a lapse in coverage, which means that no insurance company will EVER take on Elijah's pre-existing condition ever again... Do you get HOW MUCH PRESSURE there is on me to make sure I have all my facts straight, and I'm doing the right thing, when every single freaking idiot at DSHS has a different story about how to go about making this crucial transition???!?!?!?! I'm TERRIFIED! Which is a good thing because it's keeping my mind off stress factor number 2:

The brain surgery factor:

After six years of fighting these seizures with steroids, hormones, every anti-epileptic drug within reason, the ketogenic diet, a VNS implant, naturopathic care, and 2 brain surgeries four years ago... We are back to brain surgery again. The good news is that according to our surgeon, he has "a greater chance of dying from the seizures than the surgeries" (because that is somehow going to make me feel better about what is going to happen!?) All of our pre-op testing is done, and his case was supposed to be conferenced this week, so next we sit down one more time with the neurosurgeon, and then schedule... Hmmm, what would be a good time for you to have your kids skull cracked open, have electrodes sewed to and shoved deep into his brain, sit there with him for days on end with his skull just lightly resting on the wires coming from his brain to the EEG machine, and then after watching him suffer and begging the nurses for more morphine for as long as you can take it, let them go back in to remove the electrodes along with any parts of his brain that he still has that might be "problem areas"... Is there a way to look at your calendar and think, "Oh gosh, December 5th is open! Lets do it then!" Knowing that the risk of stroke is so much higher this time around... How do I live with myself if something goes wrong?? How do I look at him and know that I made the choice to let them try this god awful surgery AGAIN, and have him worse off than before surgery if something goes wrong???!!!! But on the other hand, how do I watch him have seizures all day every day? How do I comfort him through each batch, begging the universe to make it stop, and do nothing to try and help him?? Don't worry, no answer to these questions is expected. There is no answer. Either option is just horrible. Having seizures like this has brought us back to this awful decision. The same one we had to make four years ago... And still with all the knowlege we've gained in that time, all the experts and specialists we've talked to, all the tests we've done. There is no good answer. So. Since I can't find a way to wrap my head around the brain surgeries, which are going to happen, I face other, smaller problems... like:

The guilt factor.

I am so utterly consumed with brain surgery, that I have not been a good friend or wife or even mother. Every other thought that I have is "brain surgery" I'm walking along, talking to my younger son, and suddenly this graphic bloody image of Elijah's skull being lifted off his head pops into my mind, and the wind is knocked out of me, and I have no idea what we were just talking about or doing. I wake up at 4am every single night and panic, and think of all the reasons why we can't put him through this again, and then remember all the reasons that we will, and then give up on sleeping, because I now have to go kiss both of the boys and make sure they are okay... And then I have this terrible thought that Elijah is going to have the surgeries and be FINE, and live a long seizure-free life, but Liam will get hit by a bus and I wont be able to live with myself because I never ever spent enough time worrying about him! Because he's the easy, healthy, typical child, and if it's not brain surgery in this house, it's not really a big deal...

And I heard that my BEST FRIEND'S daughter is getting off of her seizure meds because she's been seizure-free for 2 years... And I'm OVER THE MOON happy for them. I really am! I'm thrilled! But I get off the phone and I cry because when we first met the kids were 2, and Elijah was so far ahead of Avrie. I used to feel so guilty about all the things that he could do that Avrie couldn't... And boy have those roles ever reversed! Elijah is still 2, developmentally, and Avrie, (at age 8), is more like a 4 year old... And she's getting off her seizure meds, and Elijah is boring to her, because she's so far past that stage, she's left him behind. And I wouldn't wish for ANYTHING else for them, but god it hurts that it can't be my kid, too! I don't want to feel petty things like jealousy, especially about my best friend in the whole world... But I do. I'm so heart broken that I haven't been able to help Elijah more. Aren't Mommies supposed to help their kids? Make it all better??? Instead I am going to sign a permision slip to let these surgeons go at his head with their hacksaws AGAIN. What kind of a mother puts her child through that TWICE? I know. I know. I'm trying to help him, and it's for his own good, and in the long run it's better than letting these seizures go unchecked... but inside I'm kicking and screaming and fighting this.

Then there's the wish factor.

A bunch of people, including some friends and Elijah's teacher and doctor encouraged us until I finally gave in and sent in our refferal to the Make-A-Wish foundation! And they approved him! They are going to grant him a wish!!! We are going to take him to Disney World for his wish, (since he can't tell us what he would want)... And I am SO SO GRATEFUL. And I am SO SO EXCITED for him. And it is a WONDERFUL thing, and a wonderful foundation, and he DESERVES this after he makes it through his next round of massive scary brain surgeries! But crap. You tell people that he's getting wish, and they all clap and cheer and say how wonderful it is, but you know what they're all thinking... Because you're thinking it too. I don't want my child to qualify for a Make-A-Wish. The best thing they could have done for us would've been to say, "I'm sorry. You're son is too healthy! He can't go to Disney World." Now THAT would have really given me a reason to dance! lol, and of course I know that it doesn't mean we're losing our battle with seizures. His doctor told me over and over that it doesn't mean he's dying, just that he has a life-threatening condition, which of course I knew... But still. I don't want to know that. I don't want it. I want to say "thank you SO much for the trip to Disney World, and the week of a life-time, but I would like to trade it in for a healthy Elijah, please." But there's this giant sign on the Make-A-Wish door that says, "No exchanges." (I'm making that up. We don't even go to them, they come to us. lol... I have no idea what it says on their door.) But I bet I'm not the only mom that's wished that my child could make a wish for a magic wand instead of a magic week. I'm not going to apologize for sounding less than grateful, because this is my "letting it all out" journal, and I dare any one of you to feel differently in my shoes. (wow, that sounded rather petulant... oh well...)

God, there's more. Our finances are STRESSING ME OUT. I can't seem to get the housework done. I let my kids watch too much TV. I never want to have sex with my poor husband, 9who is also SO freaking stressed out that I barely recognic=ze him anymore. I love him to death, but when you are this scared and worried and stressed out all  the time, all you can to is walk through hell next to eachother, but somehow separate. Whenever I confide how far beyond stressed I am, I can see his heart break just a little bit more, because he feels the same way I do. Daddy should be able to make it all better, too.

Okay. I'll leave it at that for now. My emergency release valve has run out of steam...

"The soul would have no rainbows, had the eyes no tears..." -unknown

[angellady535]

Oct. 23, 2009 at 12:37 AM

 My heart goes out to you and your family  .  I pray that the window of heaven will open up and send down the miracle of Jesus now ."   Amen !

[jennyjlj]

Oct. 23, 2009 at 1:19 AM

Oh elyssa!!! ((((HUGS))))) Its bee so long since we have seen you!! I think of you everytime they talk about swine flu hoping its not bad so you can get this done and over with.  I hope the insurance thing goes well!!!! ((( HUGS )))

[ms_mommy_sue]

Oct. 23, 2009 at 10:44 AM

NO words that can help I am sure, but here is some cyber hugs!!!! I'd offer real hugs if you were clower. ((((((((((((((((((((((HUGS))))))))))))))))))))))

[prinsesK]

Oct. 23, 2009 at 11:08 AM

still thinking about you guys!  wish there was something i could do to make it all better!

[Heartlight617]

Oct. 23, 2009 at 9:42 PM Well, Elyssa, the good news is that you should not feel guilty for not being Martha Stewart, not cleaning your house (way overrated!) and not being a tigress in the bedroom. You have been a mother many of us admire, a tireless fighter for your family. I think I have been through the mill, with my mom's brain injury/dementia, daughter's mental illness and son's neurosurgery-and I haven't even come close to what you have been through. It's what's called "Hobson's Choice." Google it. There IS no choice. You have to take a leap of faith, because it's the only thing that might help Elijah. Might is a great big carrot dangling before us-go for it. There are a handfull of Supermoms I know and love-you are one of them. Now go sit quietly and eat that candy bar I know you have stashed right about where I stash mine! Love ya, and remember: There are alot of us in Holland. It's a good place. The people are the best!

[ninajo]

Oct. 29, 2009 at 2:47 PM

All I dare say is Love and Prayers....God Bless

[things_not_sane]

Oct. 29, 2009 at 2:58 PM

Elyssa, I don't think I've ever read anything that has pulled at my heart so much. I can't say I know what you are going through, but I understand. I wish you and your family the best of luck during the long road ahead. Your one strong woman!