What is July 25?

My sister died on July 25, 2003.

So it’s been seven years. And this year was it. I didn’t post about it. Well, I’m posting about it now, after the fact, because it didn’t occur to me to post about it then.

An internet acquaintance of mine recently lost her sister and I wanted so badly to tell her that no matter how awful it it now, it won’t be forever. I didn’t, because it wasn’t what she wanted or needed to hear. I told her I know it’s awful, and nothing I could say could make it better, and that was the simple truth and the best thing I had to say.

Apparently seven years is the magic “not forever” number. Who knew?

It might help that I don’t have anything else to associate the date with. September 16 will never come and go. It’s a scant two days after my eldest son’s birthday. She held on long enough to see him turn six, and that was that. Maybe it will come and go? Maybe it’s just still too soon, too fresh. I still can’t think of her without wanting to cry, my eyes stinging and tearing up. Maybe in 2013 September 16 will come and go and just be another day of celebration in Dorian’s Birthday-Week.

Anyway, when I was a little girl, and I passed by “wishing wells” (read: anything which caused me to beg for pocket change from my parents to throw away and make a wish) I’d throw in my pennies (nickels, dimes) and wish the same wish every time. I always wished Erin could walk and talk and be the kind of sister I could play with instead of play next to. Don’t get me wrong. We shared books, music, the television. She loved just hanging out, but it was a little one sided when it came down to it. My grandmother used to tell me how I would sit there and rub her legs and tell people we had to make them strong so she could walk.

Purpose of this overly emotional road trip?

I had the best dream last night. For some reason I can’t explain Erin was living in a residential home, which turned out to not be a bad thing. See, we showed up one day to visit, and out she comes with Jim (her boyfriend at school), walking. Not the easy gait of someone whose been walking since they were a year old. The uneasy, kind of stilted gait of someone who has recently learned how. Oh, I got the biggest hug and just started crying.

I have long said that since Erin died she is in a better place doing all the things she couldn’t do while she was here. I’m not big on god or heaven or hell. I’d like to think that when we die we move on to whatever is next. Death is just one stop in our journey. I’m not so sure about reincarnation as the only thing, but I think it might be an option. I believe the Universe as a whole wants us happy and healthy.

I haven’t had an Erin dream in a very long time. I can’t remember the last time, if ever, that I had one where she was walking. Even when I was a little girl, the Erin in my dreams was in a wheelchair. It has taken a long time, but I am so happy my wish has finally been granted. What a great way to start the day.

I haven’t posted it in a while, mainly because I’ve kind of switched gears to Autism. UCP is an excellent place to donate money to. Like all groups, there is always more money going out than coming in. I am a little biased and would love to see your charitable donation go directly to Delrey School, I think I spent as much time there as a child as I did at home. In the form, choose a local affiliate and then pick UCP of Maryland. Everyone dollar counts and the staff, kids and parents are so grateful for them.

All the said, this Post Secret hit home for me today. I’ve save the image in case blogspot doesn’t host it at some point, but I have linked it to the original.

I constantly see cards I want to get for people who just don’t care if they get a card anymore or not, and on the flip side, I see cards I wish I would get from them, because they are just the type of card they would purchase. It doesn’t make important days any harder or easier, but it always makes me smile when I spot one. I wonder if I got them and sent them to the cemetery if whoever gets the mail there would think I’m nuts.

Eshiva just came up to me with a picture of Erin that is in a red heart frame.

She told me “Mommy, this is my love”

I asked if she knew who that was (of course not) and I told her.

She said “I love her, can I put this on the piano?”

I said of course. She’s carrying it around telling everyone she loves her, this is part of my love too. She’s a part of my family.

Malachai is telling her that she (Erin) is dead, and two people in our family are dead.

Eshiva is telling him she isn’t dead, she is a part of our family. T

They are going back and forth. It’s cute.

<3

Eshiva is named for Erin (for those who don’t know). She died in 03, Shivie never knew her (obviously) – I don’t know that Malachai even remembers her.

She just came up to me to tell me Erin is dead, but we love her and she is still a part of our family and we have a picture of her when she was alive.

AGE OF AUTISM: MMR: It’s ALL or NOTHING! Say goodbye to choice..

Your choice to work with your pediatrician on safer vaccine schedule has just received a very large blow.  Merck and Co. has decided to take away your option of separating the MMR, instead of getting the whole shebang at once.  Forget those who may be predisposed to not handling 3 viruses at once; you know the weak, the infant who may need a bit more time.  What if they are unable to take one of the viruses due to allergy of an ingredient, but have decided to go ahead with one or both of the others?  Well too bad, allergy or not you have lost your right to choose.  It’s now, all or nothing.

Merck has removed the option to split the MMR into it’s three components. Now you get all three at once, or none at all.

I’ve bitched and moaned about vaccines before. I don’t feel like doing it now. I just wonder, why remove a parents choice to get 2 out of 3 or 1 out of 3 in the belief they will at least do that? I mean, looking at it from a vaccinating parent point of view? I am not a vaccinating parent. I have an autistic child. I stand behind my decision with feet firmly planted in position.

What if I was the parent of a child with life threatening allergies? What if my child was alleric to product B but not A and C? I am fucked out of luck because I wont risk their life delivering A, B and C. Aren’t A and C better than nothing?

I just don’t understand. I am the last person to push vaccines, but I am the first to acknowledge the good they have done for us as a people in the past, why take away choices in the future?

I read this and started crying. I don’t know if everyone will/would, but stories like this always make me cry. I always see myself in them. I think all siblings of special needs children are like this (or I’ve never met one who wasn’t). It’s almost the same as a parent/child relationship, but it’s different too. I would have given my arm for my sister to be normal. I would have done anything. I used to tell my gram to rub her legs, so she could walk. I wanted to be a therapist when I grew up. I took care of her, I loved her, and I defended her to strangers all the time. A pierce of me died when she did, and it’s a piece I notice missing all the time. A huge piece of her grew in me, and I know it’s there every day when I interact with my own children.

I feel for this little boy. He has no idea. His entire life is already different from his peers, and it isn’t better and it isn’t worse, but it is most definitely different. He will grow up knowing things that I wish we could instill in every child in the world. He will grow up a little faster, perhaps he already has, and he will grow up a little slower, because that’s just how it is. I wish him and his brother the very best.

I’m doing our secret swap again this year, so here is my all about me post for this year. It’s pretty much the same one from last year, and the year before.

What I am… I am a mom, a daughter, a sister, a wife, and all the things those roles define. I act as an accountant, a chef (gourmet and diner varieties), a maid, a washing woman, seamstress, personal shopper, and any other menial household task you can think of. I am also a taxi service on occasion as well as a nurse.

Now that I have (somewhat) defined my role, here is who I am (on this day)… I haven’t knitted in ages, so please, no yarn. I like reading, but I am picky. I am a web and graphic designer by trade, and I do that in my spare time. I co-own and operate Punky Moms, the rockin’est (is that a word? It is now!) parenting forum out there. I spend way more time there than is probably healthy, but I seriously love it and couldn’t think of a better way to spend my spare time. And all my other time. And time that doesn’t exist yet. I like to think I can sew and do all sorts of other crafty things, but in reality, there isn’t any time left over for it. I am kinda-sorta learning to tattoo, but I seem to be out of time and a cheering section.

I have lots of tattoos and big ears. My lobes are stretched to 3/4 of an inch, my double conches are an 8g, my tragii are a 10g and my helixes are at a 2G. I’ve had my navel pierced since I was 14 and yes it’s still there. Everything else I’ve removed.

I have a general wishlist posted here: http://quirkymom.com/wishful/

I am a stay at home mom.

I live in South Florida, where it’s hot all the time, but I can’t think of anyplace better to live. I grew up in MD but I don’t want to move back.

Hm… I can’t think of anything else right now. If my secret pal wants to know anything in particular, just drop me an email!

Obama Positioned to Quickly Reverse Bush Actions – washingtonpost.com.

The article is fab, and points out he is not planning on focusing solely on undoing Bush policy. I just think it’s fab that some of the first things he is planning on doing deliver on promises made (and don’t just create broken promises) and do so much to move us forward, and not backward.

The article also goes into greenhouse emissions, planned parenthood/abortion, stem cell research and more.

Sorry if you can’t vote quite yet – I just grabbed my entire address book. I also apologize if you get this multiple times!

It is so important this year. I don’t care who you vote for (that’s a lie, I do care, but let’s pretend I don’t) either way it’s history in the making and don’t you want to be a part of that?

We’ve voted already (early voting) but if you were not able to take advantage of early voting or absentee voting, please make sure you take the time to go vote today.

Many places are offering voting incentives! StarBucks is offering a free cappuccino if you bring in your “I voted” sticker, my kids school is offering the class with the most “I voted” stickers a party of some sort, and I’ve heard many other businesses are offering goodies as well.

So quit reading your email (well, your blog list), go vote!

My world is entirely Jenn-centric. Isn’t yours?

I realize that the universe didn’t give us Erin just to prepare me for Malachai. That would be a little too Jenn-centric, even for me, but…. Well, you just never know, right?

So I texted my husband, whom I adore, and told him I was missing mom and I wanted to go out when he got home, even if it was just to StarFuckers or someplace like that, to sit. Well, Eshiva wouldn’t go to sleep, and finally did around 9.30, so we went out. Can I shoehorn in here, that my sister had her friend go home so she could keep an eye on Esh? She is such a love. I had him print out the free drink coupon for B&N, so that’s where we wound up.

Normally B&N is a bad, bad, bad idea for me. I can drop a hundo easy there, and usually do. Well, we get there, and I’m not even in the door yet and I realize I don’t want a cup of coffee (or whatever frou-frou drink the coupon is for) and we just shmy around for a half hour or so. I see a ton of books and magazines I want, but don’t get any. This is bad people, I am beyond pick-me-up shopping and into save the money, I don’t need it anyway territory. Everything I looked at was photography, graphic or cooking related. It all reminds me that I let everything fall by the wayside, that I can’t stick to doing anything. Which of course, puts my somewhat funky mood into piss-off territory.

So we come home, my husband feels like crap because he can’t fix it (and he isn’t expected to, but I appreciate the thought) and I get in bed and turn the lights out and listen to an audiobook. Fin.

This morning I was woken up at 6.30 because dad is still at work and will not be home to wake and take the twins to school. So I wake up Sara and Michael wakes up Michael and agian, being the love that he is, takes them to school because I just can’t drive at this hour safely.

Malachai was impressed with himself that he woke up before the alarm clock went off. We had a nice chat. He told me his teeth feel like there are little people in there playing them like xylaphones. He asked when his birthday was going to be. Tomorrow? No Mal. After tomorrow? After lots of tomorrows, yes. I have no idea if he understands time outside of yesterday, today and tomorrow, because any real length of time is just “after tomorrow.” I know he gets that it’s eight days to Halloween and ten days till we go back to the beach, but I think he still thinks of it in terms of “after tomorrow.” It’s kind of endearing.

Today is a half day, so I need to figure out what this afternoon will bring. Tomorrow is off, which will be interesting as we have Edinea at 9.15, so we’ll have to figure that out. Maybe we’ll take them all and go to breakfast after. We’ll see.