I am the luckiest, most blessed mama on the planet. I have the coolest kids ever (although... my mom is pretty darned lucky too! LOL) and I don't even have any words to describe how fortunate I feel to have them in my life.
This has been a trying couple of weeks for me, personally...Sam's been ill since he received immunizations (see previous posts) on the 13th. He's having lots of seizures and is on increased doses of his meds and a new med (why not add more... we don't have enough meds around here anyhow?) but he "only" had three seizure clusters (for lack of a better term) today...that is significantly down from a few days ago when it was almost constant. I'm scared but anxious to get an EEG & whatever follow up he needs depending on the EEG results...I'm very anxious to find out if there is any permanent damage in my sweet baby's brain. But, he has been much happier, this second week (this past week, week # 2 of the reaction) than he was during the first...very hard to see him having all of these seizures, but most grateful that he is at least happy most of the time now. He's not really eating well, but he is still drinking his bottle so he is getting his meds down.
I think the reason that I am feeling so very blessed in the middle of such a difficult time is that I found a picture of Jonah today. He was about 3 in the picture and he just looked so sick. (check out the photo album linked to in a recent blog post) He looks so much better now. The photo was taken when he was having hundreds and hundreds of seizures every day and even with his physical and cognitive issues now, Oh my....I would not trade this for any of those days. I feel so fortunate that he is on a med combo that has him relatively stable seizure wise and even with the "fun" side effects of the meds....well...I'll take it. Look at the difference in the photos & you will see what I saw. I cried like a baby when I found that picture...but quickly felt better because his seizures are so much more controlled and he just looks so much better.
I can't even ask for a sweeter child than Daniel. He is so helpful and sometimes I feel bad that he has the brunt of chores & such. I do ask the older boys to help & sometimes Jonah just well... he's Jonah & by the time I've explained it again and again, Daniel's done it already. He loves helping but I try very hard to not give him too much...he likes helping & he gets an allowance for helping with simple things like letting the dogs outside, feeding the puppy, taking out recycling...So, like I said, not too terribly difficult stuff, but by the time I gather bottles & cardboard, Jonah has forgotten what I asked him to do in the first place. He's a sweet boy.
Sam is a little ham. He loves the camera, he loves attention, loves Elmo, loves cuddling and loves playing with his brothers.
All of the challenges that the boys have gone through are for a reason. I don't know what God's plan is for them, but I do know that the life lessons that they've taught me are priceless. Without them, I would most certainly not be the person I am today. I've never really had a problem with having a voice...yeah, that's always been a strong point of mine...but I never had such a clear purpose for my voice. Now, it is crystal clear... much to the chagrin of almost anyone who has ever come into contact with me and challenged me as to what I felt was best for my children. The vax reaction has taught me not to compromise...Most things with the boys, for me, are cut and dried... no compromise...but I did compromise on the vax, on "my terms" and delayed them...but had I gone with my gut...Sam wouldn't be suffering right now. I can't look back and say that I was wrong and kick myself for it...won't do a bit of good. I WAS wrong to compromise what I felt was best for my children and have learned that lesson the hard way that compromise is no longer in my vocabulary when it comes to the care of my children. That's a good thing....ha...good for my boys, good for me...big old pain in the butt for everyone in the health field. Oh wait...here's me pretending to care.... darn, that wasn't very convincing, was it?
OK...and last but not least, this has nothing to do with my amazing children, but I was kind of bummed about having to stay up until midnight tonight to catch the walmart.com sale (that was supposed to start at midnight) and I have been checking daily for an item that I hope my husband does not pick up for our boys, but it is out of stock...and the sale price was posted at 8:30 tonight! GRRRRRR. So, my sister said she saw them (Darth Vader voice changers) at the store the other day for the sale price (this was supposed to be an online only sale!) and so I called my least favorite store on the planet (well, maybe second least favorite... the one store in the mall with the neon beer signs has always bugged me) and FINALLY talked to someone in toys who confirmed that there are "a few" Darth Vader Voice Changer masks in the store and I was able to avoid bribing him to pull me a couple and I grabbed Jonah (who was just about to sit down to a bowl of chili) and we ran to walmart at 9:00 at night. Dressed for online shopping (LOL, it was almost 60* here today...we burned leaves in t-shirts!) we went into the store and got the TWO masks (for the SALE price!!!) and got the heck out of there! So...I didn't get to shop from the comfort of my cozy computer chair, but I DID get what the boys (my sister's twins) will be THRILLED with. I wish I had more $$ because I would have bought a bunch of them & sold them on ebay....they're flying off the shelves! But I would feel really guilty about doing that...If I paid $10 for it, I'd be like....oh, you seem nice...give me $14 to cover my cost & shipping...Merry Christmas... I'd be a really bad ebay seller! LOL... OK...So, I'm blessed. And I feel even more blessed because people, mostly people who don't know us, our family and friends know how blessed we are to know these little boys, but a lot of people perceive us as a "sad story" and I just want the world to know that my children are not sad. They are people & no matter what their medical diagnoses are, they are not numbers or cases...they are sweet, adorable, fun, funny, witty, helpful, charming, playful, rambunctious boys who are the light of our lives. Any perceived imperfections are in the heart of the beholder....Give kids a chance...I guarantee you that you will be pleasantly surprised every single time. I know I am.