Wills, insurance & trusts

Do you have any of the above? I have an insurance policy for all in my household (yes, even Elijah, through work). I am aware that children who receive SSI can't have more than $2000 in their own money. My biggest concern is a will. I do not have one, although I know I should. If you have one, can you pm & help me through it? I know it may be different for me because of Elijah and him having his dad as second custodian, but I still need to have SOMETHING. The reason this is on my mind now is I know someone who did not have anything in place, and passed away and left a disabled child behind. I would hate for something to happen to both me and Casey, and not have my children protected. I'm aware that no one in my family will have access to Elijah if I were to pass & that scares the crap out of me.

Little Red Cheeks

Down Syndrome mommies/daddies...does your childs cheeks get red & peel? Elijahs has been doing this for weeks and I can't find anything to help them. It's not windburn, and he doesn't have a rash anywhere else. Ive used about 20 different creams/lotions, most prescriptions. The dermatology clinic is out of ideas. Any ideas from my fellow parents? E.

IEPs, transitions, and moving on

3 years ago my little man entered the world of special needs preschool. I have always been thrilled with his services and can never believe that people have trouble with their child's school. Elijah has therapy at school 1x a week for each therapy, goes to adaptive gym at "the big school," and rides the bus to/from school. He attends full time...4 days a week, for full days. When he started I was worried that more time in school than home (it seemed that way, isn't really I know) would hinder progress and that he would have a difficult time coping. Yes, I will not sugar coat it...it has been TOUGH. When you have a multi-disabled child, every worry is ALWAYS THERE. I worry about feeding, potty breaks, having friends, having, fun, and most importantly LEARNING. We had a rough time after his Cochlear Implant failed (after his dx of Autism, we elected to not use it because of the overload of sound) I was scared that he'd never be able to communicate. Monday I did what I've been dreading for 6 years. You see, Elijah has now "aged out" of preschool, so we are preparing to transition to school age services. I was TERRIFIED, like wanting-to-puke terrified that I was going to have to fight tooth and nail like I've heard so many times. But I was so very pleasantly surprised. Our meeting consisted of 9-11 people that were talking about my boy. His teacher, therapists, teacher for the deaf, school psychologist, special Ed people, and a few others. While I will not go into his particulars, I will say this. Everyone is on the same page. Everyone knows what Elijah needs. I am confident in his home district, and the Sepcial education school he will likely spend his educational career. I know that it will more than likely be impossible to ever have him in an inclusion setting. I know he will always need help, more than most children. Unless you've set through an IEP of his degree you'll never understand the feeling that I had to go through. This is not self pity, this is cold, hard fact. In a world where I am his voice, more than once I caught myself tearing up. I tried to keep my emotions in check. I tried to put on that poker fighting face, in case I needed to fight. I didn't have to fight though. Everyone already knew what he needed and was doing everything in their power to make it come to fruition. I left the meeting at peace. I left knowing that everyone cared for him almost as much as I do, and just want what's best for him. With any luck, the transition to "the big school" will be a success. When you have a deaf, non verbal child, you just NEVER know what to expect. Keep us in mind in the coming months, as I transition one child to a new school and FINGERS CROSSED another into school. E.

That rut that never ends...and milestones

I've been thinking for a few days about things going on around my house. To be honest, it's quite crazy. Being off during the week has really given me time to see things that need to be done, or things I should probably get done. We moved into our house 4 months ago, but it seems like I haven't unpacked anything! I have sent nearly 50 bags (no joke!!!!) to the Special Olympics bin. We lost a lot of space when we moved, and I still am trying to find a home for the things that haven't got unpacked. We put up ceiling fans and freed up that space in our closet. Anytime I go to the thrift store I take at LEAST that much out of whomever's closet I have bought for. I rearranged the top section of Elijah's closet and put away all the tons of diapers for this month. I have tried to keep up on the laundry but honestly...it's a never-ending job. I do multiple loads a day and still have left overs that haven't got done. And then, I have a pretty down day...for whatever reason...and BAMMMM!!! Smacked right. in. the. face! I try to be nice to everyone possible. I try to help whoever I can...I try to give advice and I definitely try to be the best mother I can be. Whenever I get a message from another mom (or family member), I try to be as comforting as I can. I try to reassure that whatever they're going through will probably pass. Then I sometimes get messages that AREN'T nice...ones that I really wish I hadn't got. Like the ones from last night for instance. Let me just say...again...if you are going to send me messages, please have the guts to do it with your name attached. I recently took a cyber break because of this crap. The messages I got last night were not only anonymous, but they were outright MEAN. I can't imagine, as an adult, telling another adult that they should "end their life so that everyone else can stop suffering." Really!? Anyways, the next message I get like this will end this blog, my facebook page, and everything cyber for me. Please realize that I NEED this support. I NEED the people I converse with. I need everyone that I interact with, (or don't, I don't really know who sent these latest messages), and I will not tolerate anymore of this. Moving on. Tomorrow marks 4 years since I married my husband. Totally unbelievable that he survived this long! :) And today was the first day RaeLynne survived more than 8 hours in big girl panties! If she wouldn't have slept so long, she may have been able to make it to the bathroom. She came out of her room crying that she "tried really hard to hold it, but just couldn't..." I felt so bad for her. She really wants this! This weekend is Easter. I will be taking a cyber break after Friday night for the weekend. Anyone that needs me can contact me via phone. Hope you all have a great weekend! E.

30 shades of grey

Sometimes things just keep right on coming.  It seems like the last few weeks have been pretty "meh" and I feel pretty much in a rut.  I'm tired (probably exhausted), and neither kid likes to sleep when I do.

I have started my new shift at work (yesterday) and now I have the whole week until Friday night to do...what?  I don't know.  Clean probably.  I know we are planning an adult get away briefly Wednesday.  But other than that...I don't know. I have never had more than a day or two off at a time, now this will be our new normal.

I don't really know how to adjust.  I don't like having TOO much time off.  Now it may be.  But it is what we needed and we'll adjust like we have every single time something has changed.

I have started reading a new (to me) blog, as well as her ebook.  Please consider going to the link below and showing this mom some love.  Her daughter, Addison, is amazingly beautiful! :)

Please visit this Mom, here

She is one strong lady.

Bear with me while I try to contain my excitement that I don't have to leave at 11pm to go to work! The only downside to going to bed tonight is that I have to be up early for an appt for me.  Prayers for that would be appreciated.

Hope everyone has a great week!

E.

An emotional post-A week in the making

Sometimes I can spew out words and not think twice.  Sometimes, like now, for instance, I sit on a post for days (or weeks) without posting because I can't get through it without crying.  Some posts are more emotional than others, and some just take time.  If you are a special needs parent, then this post will probably hit closer to home.  If you are not a special needs parent (or family member), please TAKE THIS POST TO HEART!  You never know when what you say to someone will scar them.

When I gave birth to my son 6 years ago, I had just turned 19.  We knew prenatally that he was going to have Down Syndrome, but we both decided that we could handle it with the education that we knew we were going to need.  Both of our families supported our choice to have Elijah, and many times it wasn't just us that went to our ultrasounds.  We also knew that he was going to have a heart problem that was going to require surgery, probably sooner than later.

He was born on a cold February night.  The days prior to his birth were great, I was finally able to get out and move around after months of being in either the hospital or the bed.  We were planning a c-section (due to his heart) the middle of February.  He was due March 7, 2006.  We thought that would give us plenty of time to deliver him without worrying about him coming early.  HA!

Little man had other plans.  He was born at our local hospital at 21:06 on 2/1/06.  He wanted to make sure Momma could NEVER forget the time he was born! :) After spending a few hours in the nursery (we were not allowed to hold him, only gently touch his hand) the Children's hospital had sent an ambulance for him.  I had to let my little man go.  After only briefly seeing him and not holding him...I had to let him go with people I didn't know.

It was a rough night of no sleep.  But finally I was able to go to Children's Hospital to see him where I spent the next 3 weeks.  Finally I convinced them that the nursery down home could teach him to eat, and we were reverse transferred back.

Now fast forward 4 years.  He is now 4 years old, and we have gotten additional diagnosis.  He now is completely deaf, and has been diagnosed with Autism.  He's had a Cochlear Implant (unsuccessful), and heart surgery.

For some reason, complete strangers think it's ok to not only stare but sometimes actually speak.  Nothing makes me feel better when I get negative comments than knowing Elijah will never have to hear them.

WARNING:
The things you are about to read are things that have been said to me personally.  They are comments from real (as real as you can be!) people.  They are not really that polite, and really, they are very painful to relive.  So please, upon reading, know that everyone has feelings and please do not repeat the things you are about to read to anyone!

*WHY WOULD YOU CONTINUE TO HAVE CHILDREN AFTER HAVING THAT? (POINTING TO ELIJAH)


*HE WAS GOD'S WAY OF TELLING YOU TO NOT RE-CREATE AGAIN.


*WHY DIDN'T YOU ABORT HIM? YOU BOTH WOULD HAVE HAD BETTER LIVES.


*YOU ARE SO YOUNG, WHY WOULD YOU DO THIS TO YOURSELF?


*YOU SHOULD GET RID OF HIM, HE'S ONLY GOING TO MAKE YOUR LIFE HELL.


Ok.  Now, each of the times things are said to me, I try to put myself in the person who is saying them's shoes.  I try to think, "They aren't educated, they aren't educated."  But, then Mama bear comes out and I want to kick ass.  So, let me tell you how I responded to each of the above comments.

1. RaeLynne was getting ready to come home and me and Elijah were in Walmart getting last minute things for her homecoming.  I was on emotion-overload.  The woman saw all the things in the cart (most were pink, some were way too small for Elijah) and thought she should speak.  After gathering myself, I stepped back from the cart, and looked her in the eye.  I said, "Listen, I had a baby 14 weeks early 4 months ago, and she is just now getting ready to come home.  I have been by her side daily for the last 4 months, and the first thing said to me by an outsider is what you just said.  He is not a THAT, he is my child.  And thank God, because I would feel sorry for him if he were YOURS.  I'm pretty sure you should continue your shopping and never speak like that to a stranger again.  You never know what they are going through.  You could have just sent me over the edge, had I not had a stable head on my shoulders.  Got it?"

She just looked at me, lipped "I'm sorry," and walked away quickly.  I doubt she speaks to people in public again.

2. This came from a woman with 5 children under 5 in her cart.  They were flithy, looked hungry, and honestly I would have loved to take them out of her cart, put them in mine, and take them home with me.  I wanted to ask her if she had heard of birth control, but I controlled myself.  I simply said, "This is my life, not yours.  You look like you have your hands full, maybe you should just move on." And I walked away.

3.  "I didn't abort him because he was my child regardless.  And you may have been able to live with yourself had YOU done that, but I couldn't.  I would NOT have had a better life, I would have been miserable.  He has a great life, and it was better before you came into it."

 4.  Yep, someone has said that.  "I didn't do this to myself, but I am glad that it was done to me.  He is the best thing that has happened to me."  This was before RaeLynne.

5.  Because people do that?  My life my suck at times, but in no way has HE made it hell.  I don't remember even responding to this a-hole.  I'm pretty sure I wanted to punch her, so I moved on.

People, please.  Think about what you are saying and who you are saying them to.  If our children are a tad older, then we have probably been through the routine.  It may take all we have to not slap you in the face.  We are more than likely sleep deprived.  We are usually hungry and grouchy.  We will not second guess our selves when we respond to you.

The first time I heard this song, after I stopped crying...I realized that this is all the things I wish I could say to Elijah!

Jason Mraz

I won't give up

This is another song that I wish Elijah could hear.  And every time anyone wants to butt heads with me, I just say, He's Mine.  

Rodney Atkins

He's Mine

...He's mine and he'll always be the best thing that's ever happened to me.  You can't turn it off like electricity, I love him unconditionally.  I'll take the blame and claim him every time!  

E.

A nap will do a Momma good!

Unbelievably, both of my children napped today. At the same time. For a long time. Elijah went to sleep around 2 pm and it is now going on 7 pm and I can still hear him snoring...lol. Rae slept for a few hours, work up for a drink, her rescue inhaler, and went back to sleep. It maybe that it's kinda hot in here (our central air hasn't been installed, yet) or just growth spurts. Whatever the reason, I am THRILLED. You don't even know! I have been able to take a nap myself, and have sat in my room, in the dark, alone, for over 2 hours. I am spoiled now. I don't know anther to wake them...or let them sleep. I know they'll probably be up all night if they sleep much longer...but my Mom always has said "let a sleeping baby lie," or in my sisters and I case as children growing up, "let adolescents lie..." lol! We rarely got woke up if we went to sleep after school. I pretty much follow this rule too...unless we have somewhere we HAVE to be. And since it's Friday night, it's pouring rain, and 7 pm, there's no where we need to go! They both look like they're growing, and we've tried to stay busy during the week after school. Guess it has helped wear them out! Today was my last day working third shift during the week. My schedule was Monday thru Thursday nights. I missed Elijah getting on the bus, and I only got a few (if any) hours of sleep because of lil sis or him getting off the bus. But finally, Daddy has taken on more hours at work, so I cut back a little bit, and totally re-did my schedule. Now I will be working Friday thru Sunday nights, third shift. I will only miss one morning of school, and will get to go to bed when everyone else does. I am hoping I won't be so. darn. tired. all. the. time. We are going to be having some major changes in our lives in the next few months. Schedule changes, multiple procedures for the kids (mostly Elijah) at Children's hospital, summer break, Elijahs transition to the big school, and maybe some other yet-unnamed things! I am looking for activities to keep the kids busy after school and this summer. Any ideas? Preferably not completely outside as both kids can't handle heat or sun exposure for very long. Me and Elijah went to town yesterday and walked the local "mall" for a while, just to be in the air, out of the heat and sun. If you have ideas, send them in a comment or to me on the Facebook page. Happy Friday! E.