Some times late at night I lay awake (no this isn’t a Garth Brooks song) watching TV while the rest of my family sleeps, it’s the time of night when all the house is still and it’s just me with my thoughts (very dangerous..lol). On this particular evening I started thinking about Meghan and her Epilepsy, I don’t know why I started to cry (probably because I’m overly hormonal), but the tears began to flow and I’m sorry kept running through my mind…
I’m sorry that my body was flawed and didn’t keep you safe from harm.
I’m sorry for what you went through as a small child in and out of hospitals.
I’m sorry that you may have to take medicine for the rest of your life.
I’m sorry that you will have to deal with adversity and discrimination.
I’m sorry that you will have fears.
All I ever want for you is to be happy and healthy.
I will always love you and as long as I’m breathing I will always be there for you.
I don’t know why these thoughts decided to plague my mind, probably because I was feeling a little melancholy. It’s an awful thing guilt…. add worry, hormones, a beautiful child sleeping next to you and you’ve got the makings for a night of chocolate ice cream and Kleenex.
My husband would like to have another baby, I’m not sure about it, I’m afraid, I guess, of the what ifs…. My two biggest fears are having another child with special needs and my anxiety getting worse. I would love to have another baby, I’m just really scared.
Anyway, I thought I’d share my midnight pity party with you in the hopes someone might offer up advice or say they’ve had similar thoughts and I wasn’t alone in breaking out the ice cream and tissues for a bit of midnight melancholy. Sigh!
Coffee, Chocolate & Xanax 
I don’t know the whole story, but my prayers are with you and your daughter.
My cousin has epilepsy and last month she went into a seizure for 2 hours… finally she snapped out of it, but I know it’s been hard for her. And I’m sure it’s hard as a parent to watch, because usually all you can do is what the doctors tell you and “ride it out”.
Don’t ever blame yourself… just keep telling yourself she’ll be ok. Because she will, you know.
She’s lucky to have you.
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Thanks for the warning. Everyone has their moments of sadness and melancholy. I think it’s cleansing sometimes actually, although you could totally blame it on the full moon from two weeks ago and I’ll believe you. 🙂
From the overall tone of your site, though, Meggers is extremely happy and overall healthy and your love for her shines in every word you write.
Big Internet hugs your way, Kirst.
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The world is a better place because your Meggers is in it. And I’m sure she is very happy to be here too. Everyone has struggles and difficulties in life, and hopefully these make us stronger. Life is not meant to be easy. I’m sure Meghan will never blame you for her epilepsy and you shouldn’t blame yourself either. Life can be so scary, but it is so worth it. 🙂
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I agree to all of the above. Do not blame yourself for anything – you are an awesome mother and your daughter is lucky to have you as you are her. I believe that God does not give us things that we can not handle. Life at times might be hard and full of trials but in the end we learn and grow and are a better person for it. Meghan is a precious gift – cherish and love her with all you have!
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I should say – continue to cherish and love her – I know that you already do!!!
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You would worry about a new baby’s health whether Meggers had epilepsy or not. I didn’t think epilepsy was a genetic thing. I thought it was one of those things that just happen. Through no fault of yours or your DNA. I would research that before I post this comment, but I’m too exhausted and I’m sure you know already. So you can tell me if I’m wrong.
If you and your husband would like a baby, then just do it. Don’t worry about what may or may not be wrong. Just do it and be happy when it happens.
Love ya!
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Thank you for all the kind words! I went back and forth on whether or not to post this. My blog is supposed to be my outlet for both the good and the bad right?
Again, you all were very sweet, thank you for indulging my moment of weakness and being so supportive.
As for another baby, I’m considering the possibility, but really nervous.
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My brother has epilepsy. He had his first grande mal when he was about 12. We think he’d been having petit mals for years but didn’t realize it. We just thought he was spacey. I don’t know the circumstances surrounding Meghan’s epilepsy, but my heart goes out to you. I sometimes wonder if my mom has some of these feelings. No matter how hard we try not to blame ourselves, it sometimes just hits us. I remember when I was preparing a presentation for my oldest daughter’s class on Down syndrome and I looked at Peanut’s genetic map. I always knew one of us was responsible for that extra chromosome, but I always kind of thought it was hubby. However, I discovered it was me. (It’s usually the mom). I didn’t do anything to cause it but it still hit me hard and I cried. I love Peanut just as she is, but I hate that she will have struggles in life. I’ve only just met you and yet I can tell what a sweet and caring person you are. We can’t go through life worrying about what might be and miss out on what will be.
Get some sleep. Things always seem better after we’ve rested. [hugs!] 🙂
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debbie – Wow! Thanks so much for the sound advice you hit it right on the nose. Glad you posted!
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You feel guilt and a lot of other stuff. But it isn’t your fault, yet you still find yourself crying and wanting to do anything to make it all better. I think you should consider having another baby, I understand your scared, and what IFS are I think the worst questions we are ourselves. Just relax and breathe. Everything gets better and the road ahead of us clears up eventually. Meghan is a beautiful little girl, you are lucky. And the best gift you can ever give her is loving her for who she is, which your doing an amazing job at!
-http://teaaa.wordpress.com
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Trying to get caught up and I came across this post.
Heavens, I am right there with you!
Majority of days I do ok. I try to take it all in as fact. It’s just how it’s going to be. We’re in the process of getting equipment for Emma. It’s just something that has to be done.
But there are times, and really it can just be that she smiles or makes a silly face, that I totally lose it.
Sometimes I feel very lucky with how Emma is. We received our IS diagnosis and days later were told that she had Canavan’s Disease. She would slowly degenerate in abilities and probably die before the age of 4. Thankfully that’s not the case, but compared to that I’d take the IS. We still don’t know what is causing the IS, but I’m good not knowing. Knowing what is causing it means something is really wrong.
But I’m right there with you on the couch with the tissues & the ice cream. I ask myself those same questions.
You’re not alone!
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It’s tough… you know it’s not your fault but you can’t help feeling a little responsible and knowing it’s one boo boo that you can’t fix can be a bit overwhelming sometimes.
I try to focus on giving her the tools to make the right decisions later on in life, but every once in a while I end up wth the tissues and ice cream.
Glad it wasn’t canavan’s Disease! It’s nice to know there are others out there that go through similar feelings. Thank you for all the kind posts.
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