Still Don't Know What Happened.......

 I have started this post many times now and really, the details of the story don't matter.

The fact is,  I live in a reality where my daughter cannot tell me a coherent story. I cannot get
facts or answers or clues.

I  live in a reality where I find that many times I have to totally entrust the care of my 11 year old over to someone else and that when something happens that shouldn't, I have to wait
for answers from other people who may or may not have them.
I have to piece together multiple parts of other people's stories to try to get at the true story.

However,  I also live in a reality where if  I didn't trust people to do their jobs, I would be putting Kellyanne at a distinct disadvantage, because, most of the time, most of  the people, do their jobs correctly.

I know mistakes happen.  But some mistakes just shouldn't.

 Let's just say Kellyanne had a VERY LONG afternoon bus ride today and missed her first day of camp.

Somebody made a mistake, it could have been costly.

Thank God it wasn't.

Memorial Memories

The beginning of summer....Memorial Day Weekend. 

I remember growing up, it was a huge day in our neighborhood.

There was a community picnic at the pool.

Kids played pool games like Dead Man's Float and 'Find the pennies at the bottom of the Pool'.

Mr. Rogers would man the barbecue and everyone would bring food to share and there were sodas for the kids and  kegs  for the grown-ups.

We'd spend the entire day at the pool. At least the kids would!  The water was always freezing. 

We'd meet the new lifeguard and the older, cooler kids would hang out in/near her office.

There were no fancy lounge chairs, just concrete benches to put our stuff on (brilliant .......)

It was the day when the private school kids and the public school kids would reunite.

Bikes came out and the neighborhood came alive.

This was my Memorial Day weekend from the time I was 6 until my early teens.

Such wonderful memories! 

I now have 2 new friends on Facebook that took me back in time to a land called Gingerville.
So to all of my Gingerville friends - thanks for such awesome memories! 

I hope everyone has a wonderful Memorial Day Weekend : )

A Bad Stretch.....For Mommy

Frustration....simply a part of life. I have a tendency to write/journal/blog/spew/etc. when I'm feeling frustrated, tired, anxious, depressed, angry, etc.  While it is good to dump all the sh*t that is clogging up my mind, I really should post more about the truely awesome things that are going on in our lives.  But for now, I need to unload.

I'm tired.  I feel like my tank is empty.  I feel like I could move far, far away and never return (so long as it is near the sea). I have a headache that won't go away, which is why I decided to write.  Trying to make sense of it, only makes it worse!

I have an awesome family. 4 terrific kids and an incredible husband - so why????
Today I watched Kellyanne play baseball with The Miracle League - amazing!  What are the other parents feeling? Are they as tired as I am? Are they frustrated? Do they lose their temper? Do they run out of patience as quickly as I do?  Lately, I haven't even been doing the "bulk of Kellyanne", Michael has.....so what the heck am I complaining about?

Even a little time away doesn't seem to help. Upon arrival home, it's all right there smacking me in the face.
Believe me folks, I realize the PROBLEM IS ME!!!!!!  I need to buck up and be the mom God called me to be, because lately I feel like I've sucked at it. I have not lost faith, just energy. I promise to post positive soon!.

Thanks for listening to the rant my friends/my readers......
Beth

The Life and Death of Muno

I had very few goals this Spring Break, but one of them was to get Kellyanne a fish. And we did. On Thursday, Kellyanne, her big brother Michael, and and I went to PetSmart.  We looked at the birds and lizards and snakes.  Met some cute dogs and visited with the cats.  We also picked out a fish. A red Betta who she wanted to name Emma, but changed it to Muno when we told her it was a boy (that took some doing)! 
We bought the Betta food and took Muno home to his already waiting fish bowl.  It took Muno a couple of days to really come to life.  It was like he wanted to feel safe in his new surroundings and last night he was as active as I had ever seen him since we brought him home.  I thought it was in response to the large number of people who were in and out yesterday (Easter) and that he finally felt safe. This morning he was happily swimming around in his bowl just enjoying the day, totally unaware of his fate. 
Eilis went to hang out with her friend,  Michael, Erin and I went to the bank and we left Kellyanne playing MarioKart Wii while daddy worked in his office.  We were gone for less than an hour.  When we walked in the door I immediately saw the fishbowl on the kitchen table, moved from it's spot on the desk. Muno did not look happy.  When I looked in the bowl there were about 50 pellets of food floating on top of the water - and Muno was floating too, listing a little to the side - looking like he had just experienced some really good drugs.  No one is really sure what happened to Muno. Kellyanne showed me the food container and that's all I got out of her.  I told her I thought Muno was dead and she showed some remorse but simply moved on to her next task.
I keep telling myself, maybe he's just in a food coma, but I think I'm just kidding myself.  Muno made a wonderful pet in the Hagan home for 5 days. And yes, I'm getting another Muno and we will try again.  I will hide the food and try to use this as a learning opportunity for Kellyanne about taking responsibility for her pet, I think she'll get it.  I might tick off some animal rights activists (do they care about fish?), but I have to give her another chance. And I have to believe that Muno had 5 wonderful days in our home, which beats living in a cup in a pet store......I think.

Muno

March 28, 2013 - April 1, 2013

RIP

There was a time.....

There was a time, not so long ago, when Kellyanne had a fever, I would medicate the hell out of her - for fear of a febrile seizure. Funny, I don't do this anymore.  Two nights ago, she had a temp of 101.5. A while back I would have medicated her and then make sure she was re-medicated 6 hours later - again for fear of a seizure.  Two nights ago, I medicated for the primary purpose of making her comfortable, no fear of seizure, and did not re-medicate during the night.
 
There was a time that Kellyanne would go to bed, fall asleep as soon as her head hit the pillow and stay in her bed until morning.  Funny, she doesn't do this anymore. No, instead, she goes to bed and lies awake (sometimes creeping downstairs) until she eventually falls asleep.  She sleeps for an hour or two and then comes into our room to sleep.

There was a time when Kellyanne was small enough and young enough that her disability wasn't as apparent as it is now. I would be bothered by people's insensitive stares, glares and comments when she behaved in in a way not congruent with her age.  Now, it's pretty obvious that she has "something" going on.  The stares now seem to come more from children then adults...which is totally forgivable, because they are curious, not mean.

There was a time, 3 weeks ago to be exact, that I knew exactly where Kellyanne would be going to school next year... a second year in 5th grade at DES. Now, it is most likely that she will be moving on to 6th grade, with her class to BMS.  Michael and I have the exciting privilege of visiting the program and meeting with the teacher on Monday!

Time has a way of changing things. Some for better, some for worse - all for a purpose.
Time has a way of changing us - we decide how.

WOW!

WOW! So much time has passed since my last post.

Why haven't I posted?
Too busy, too lazy, too confused, too forgetful, too stuck. Yes, yes, yes, yes and yes.
I am busy, but that should not be an excuse! I am lazy, but no excuse there either. Confused? Absolutely. Forgetful, I actually have at times forgotten that I have a blog. And finally stuck - yep, that's the one.

Confused and stuck. When writing for the public eye to see, you want to hide the blemishes, I think. Maybe it's not actually hiding the blemishes, maybe it is more about talking about the blemishes without trying to sound proud or pitiful. Life this year has been rough. We have been faced with challenges that we weren't expecting to face, like Michael losing his job. Not to sound pitiful, but it sucks not knowing how to pay for the future (as in next month). Not to sound proud, but I really don't worry too much about it. So far we are doing okay. Yes, we have had to make some changes in the way we do things, but I know things will work out - don't know how, but know they will.

Kellyanne - well, do I write about the challenges there, or am I invading her privacy? As a mom of a pubescent daughter with special needs I feel like I should write. I know, I myself go searching for every bit of info I can soak up on this issue. If one person finds it and can relate, then it is worth it. However,this continues to be part of the confused and stuck part. What do I write, how do I write it, will it make people uncomfortable, am I exposing too much of Kellyanne? Still confused, still stuck.

Here goes.....Kellyanne will be 11 next month. Looking at her, she doesn't necessarily appear to have such global developmental delay. Spending time with her is another story.  Kellyanne still wears pull ups at night, tantrums, and speaks in choppy sentences. She wakes 3 to 4 times a night and comes into our room to try to sleep in our bed. Sometimes she succeeds. She needs assistance bathing, dressing, wiping, brushing teeth, taking her medicine, doing her hair and in most of these areas, not just assistance but total care.  She doesn't pick out her own outfits, she doesn't tell me what friend she wants to come play, she doesn't do crafts, she doesn't share secrets with girlfriends, she isn't begging me to take her to Justice or Aeropostale or to get her ears pierced.

On the other hand, Kellyanne loves to play with her Nook Tablet, the computer and Wii.   She loves to  go to church and Sunday School.  She loves her school and her teachers and her bus drivers. She smiles at everyone and only knows people as "friends". She loves to give hugs, sit next to anyone who will let her, and she is becoming quite the basketball fan for Eilis' HS team.  She doesn't hold a grudge, she doesn't know that she is different, if people say mean things about her, she wouldn't know it. She has no sense of time. She wakes up, gets dressed, eats breakfast, takes her medicine and goes wherever we send/take her. She rarely questions, if ever, she just goes. Kellyanne lives in the moment. She has no concept of a snow day, a day off from school, an upcoming weekend. She just trusts that when she wakes up we will be there and her day will be whatever it will be. And she is happy with that.

And now the truth....we are quickly approaching the time I was afraid of when she was first diagnosed. Full blown puberty!  We are taking her to a gynecologist who specializes in pediatrics and adolescents. Why are we going? To discuss how to handle the issues that she will soon be facing. The issues that most girls face with a little adjustment and a little embarrassment and maybe even a little fear. For Kellyanne, this is huge. How do you explain it? How do you help her make sense of it? How do you deal with it without screaming fits and wrestling matches? I think you know hat I am talking about.  So this Dr that we are going to will hopefully prepare us to prepare Kellyanne. Time continues to move, but Kellyanne stays stuck in a place of innocence and ignorance - a peaceful place on most days.

Kellyanne is to start Middle School next year. Another big change! I had every intention of keeping her in 5th grade for one more year, but now we are not so sure. It is most likely in her best interest to go. We will be visiting the program next month. I think she is ready to move on. I may not be ready for her to, but it's not about me.

I feel like I am all over the map here....but if I don't post it, who knows how long it will be until my next attempt.  There is still so much more I want to write, have to say, and things to get out of my head....but it will have to wait.

So Wow! Not sure what I wrote, how it flows or what the meaning of it is, but it's out and I have unblocked something. Hopefully writing won't be so hard in the near future.