I'd like some ice in my milk, Mom

After getting Elijah ready for bed tonight, I had already poured his milk, gave him his 3 meds, fed him, and cleaned him up.  He had a new diaper (or two, actually) on and his jammies were fresh out of the dryer.  That only took me about 15 minutes.  By the time I handed him his milk when he laid down, it was promptly thrown on the floor, hitting my knee on it's way down.  I picked it up, and sure enough, it wasn't ICEBOX cold anymore.  How dare I!

The nurse that discharged us (you know, from the hospital visit that never happened...) made a comment about how it was funny that he insisted on ice cold milk.  Well, honey, it's not funny at 3 am when he won't drink his milk you take him after changing a diaper because it's luke-warm.  So, I took it back to the kitchen, melted down some icecubes that would fit in the milk cup (ok, ok, the bottle.  He won't DRINK out of a cup at night, sue me!).  I took it back into him and sure enough, he took it right out of my hand and had it half downed before I left the room.  Little brat adorable child that knows exactly what he wants! :)

Before you make a single comment about my nearly-6 year old drinking from a bottle:  Let me assure you, I do not care what you think!  You do what you have to do.  It may not be conventional for you, you may not agree, it may seem stupid, or you may just not like it...whatever your thought about hating me because my child drinks from a bottle...guess what?  He still wears diapers too!  So there!

He will eventually someday, a long time in the future, grow up.  I will deal with that bridge when we come to it.  However, right now, his comfort is his bottle.  Given the pure sh** that he goes through 1/2 the week, I will do whatever I can to make sure he is happy when he is with me!  Bottles, diapers, and all of my love!

E.

Dear Haters,

There is obviously something so wrong with your life, that you need to make others feel just as bad. No one would make up the things Elijah goes through, including his last hospital stay (yes, people are still on THAT). would you like to speak with my friend that visited us? How about my aunt that was there when they transferred him to Children's? No? Then kindly shut up.

You think because your child has cancer or problems 'bigger' than Elijah that I would make hospital stays up? Really? Maybe YOUR child isn't as sick as you say. This makes me think of the blog The People I Want To Punch In The Throat. You can definitely insert your own opinion on what I mean here.

My son suffers. Everyday. Hell, we ALL suffer, everyday. Maybe not your kind of suffering, but if we all suffered the same...what kind of life would that be? So, to the haters, keep your big mouths shut if you have something to say about me or how I parent my children. I never talk about how so and so parents, because I don't know their situations personally. You don't know mine either. a friend of mine has told me the mothers that act like they've got it all together sit at home and rock back and forth. I'm beginning to believe that. Just admit that things aren't ok, like I did. It makes the rocking go away.

Happy Sunday!!

Elisha

Hello, 3am. Fancy seeing you.

You would think I'd be used to seeing 3:05am on the computer. I do work 3rd shift. There's something about being home, in your own bed, able to be asleep, yet 2 Ambien, Tylenol PM, and 2 benadryl later, I am wide-a-freaking wake. Funny thing is, the children are spending the night with their grandma (Rae), and Aunt (Eli). So I could theoretically COULD be sleeping. SHOULD be sleeping. Am I sleeping?

Hell to the no.

Epic fail tonight.

Hope you are all sleeping well.

E.

A post from earlier today.

At the risk of getting responses like I did to last night's vent on my personal FB, I am just going to post here because I guarantee a lot more of you will understand. If you don't have a child with Autism, you don't know what it's like. I don't care if they have another disability...it is NOT the same!!! Roll in Down Syndrome and Hearing loss, and your child is pretty much stuck inside a little body!
I'm not only PISSED but I am extremely frustrated with some of the things people had the nerve to send me via PM. Of course, they couldn't post it to my status, because then they would have had to answer in front of all of FB. But, no, please send a very exhausted, scared, sad and desperate mother a message telling her that she should be glad that "the disabilities he HAS is ALL he has!"
F. YOU!
NO, I WON'T be thankful. Never. I will never be thankful that my son will never be able to tell me he loves me. I will NEVER be thankful that I will never hear him utter a single word. I will NEVER EVER EVER be thankful that he fights and struggles SO F'ING hard and for what? I will not be thankful...because quite literally this situation SUCKS.
I know that you all know what I mean. Autism in and of itself SUCKS. Sleepless, restless nights SUCK. Emotional breakdowns SUCK. IEPs suck. Being stared at sucks. Every damn thing
about Autism sucks. Want to know what is worse...having the trifecta of Down Syndrome and being deaf added in. I am NOT saying that my child is more special than yours, I am saying that my child struggles so much that I don't know how to do this. I have never in my life doubted myself as a mother, until last night. I cried for 3 hours after Elijah was asleep because I just felt like..."I couldn't do it anymore." Who thinks that about their child? Me.
I can't believe that after 6 years (on Wednesday, the 1st)...I am really concerned about Elijah's quality of life. What is he going to be able to do? To make me feel so much worse, I just got his "Transistion" Paper in the mail. They are ready for him to move on to school age services. Are you f'ing kidding me? 3 years of the preschool is not enough. I mean, it is...but what is he going to be able to do? When I get the papers home at the end of the school day that he has "completed" I literally want to cry. He does NOT complete them. He doesn't know how to do a damn thing that comes home on those papers. I love his teacher...I love his class...and I am scared to death that this is the last year that he is going to be there. The women that has been in his life for the last 3 years are no longer going to be there. What. the. hell.
To make matters worse, his poor little sister (3 y.o.) Does NOT get why bubby is "mean" to her. She doesn't understand why he can't talk or hear, and when I say, "Hunny, he can not hear you, he can not talk back." She starts to talk LOUDER like it's going to make any difference. I know that I should be happy to have one "healthy" child but quite frankly, she's been a battle of a whole nother spectrum.
I am terribly sorry for being negative. But tonight while I was at the store looking at birthday cards and invitations...I thought..."Why? Why even bother? He's not going to read them, or give a crap that I bought it. Hell, he isn't even going to care that there is a party..."
I feel like the most worthless mother in the world. I am THANKFUL that I have my children...please don't mistake that. Sometimes, though, and an incredibly lot lately...I just wish that things weren't so damn hard for them.
So, now, that my keyboard is soaked in tears, and I'm going to have to change my shirt because it's also soaked....I don't feel any better. Whatever. :(



E.

To both of my babies. You always make Momma smile...even when I am on the verge of tears!

The end of day 1

I can't say that I will ever be a good blogger.  I just know that at this point and time, this is what I need.  I am so thankful to have friends and family that love and care about me and my children.  No one goes through what we do exactly but to have multiple people take time out of their day to help me, to reach out to me, or to just say that they are there if I would need them....it makes my prospective a whole lot brighter!  I love everyone of you that have taken time to come and visit this new blog-in-progress.  I hope to use it as a way to keep from biting anyone's head off that doesn't deserve it!

Much love to you all and goodnight!

E.

http://abclocal.go.com/wpvi/story?section=news%2Fpolitics&id=8522942

About Me

I'm not going to come on here and act like I know everything.  In fact, there is a lot that I don't know.  But I will tell you what I know a little bit about.

Special Needs Children.

In fact, I have 2 of them.  My son, Elijah, will be 6 years old in just a few days:

And then, there is his sister, RaeLynne.  She just turned 3 years old in November:

They have made Special Needs my life.  After 5 years of being a stay at home mom, I decided to take the leap into the working mom's life.  Guess where I ended up?  As a habilitation specialist for adults with Special needs.  Funny how that works, huh?

I can tell you the things this blog will NOT be.  I will not make money off of it.  I will not beg you to buy things that are unnecessary or stupid.  I may just be a little brass at times, and I definitely don't need any one to "approve" of it.  I may post a lot.  I may not post for days.  The kids have a lot of appointments, so you will probably be hearing about those.  We see close to 15 specialists at Nationwide Children's Hospital.  It seems like if I am not working, we are at an appointment somewhere!

Well then, what WILL this blog be?

Autism.  Down Syndrome.  Hearing loss and deafness.  Extreme prematurity.  Shared Parenting of the Special Needs child.  Blood disorders.  Heart Defects.  Multiple appointments a week.  IEPs.  The blended family.  What it's like to be a full time working mom and deal with all of that.

Let me introduce each of my children and identify their "disabilities," if you will.

Elijah Thomas

Born 2/1/06 at 9:06pm

4 # 14 oz and 18 inches long

This beauty was born 6 weeks early.  We knew before he was born that he was going to have Down Syndrome and a heart defect that was going to require surgery sometime shortly after birth.  We were VERY lucky in the sense that we had 5 months to fatten him up to get him ready for that surgery.  THAT surgery that lasted a long 14 hours.  Every single minute that passed I was just SURE that they were going to walk out at any minute and tell me that they weren't able to repair it or that he didn't make it.  Yes, I was a 19 year old Mom that had no other children, no experience with special needs and sure as hell NO experience with hospitals or surgeries.  But Peanut, as he was called, DID make it.  We spent 5 days in the hospital, but man, once he came home...it was like he did a total 360.  His life improved dramatically.  He was able to eat a whole bottle without sleeping every 15 minutes and didn't take a whole day to drink a bottle.  He started rolling over and growing like a champ.  Heck, his WHOLE LIFE IMPROVED.  I will be forever indebted to Dr. Alistair Philips who changed my life forever.

Fast forward a few months.  That's when we found out that hearing loss and deafness were going to be the normal for us.  We fought, unsuccessfully, with hearing aids before getting a Cochlear Implant on September 12, 2008.  That went pretty well until Autism reared it's VERY. UGLY. HEAD.

I don't know what I hate more about Elijah's diagnosis'.  I think they all make him HIM, but they each suck in their own way.  I will say, that once the Autism really sunk it...he REALLLLLLY changed.  And not at all for the better.  We lost about 9 hours of sleep a night.  He literally slept MAYBE 3 hours a day.  Maybe.  That was on a realllly good day too.  We tried meds, we tried therapy...we even spent hours at a sleep clinic trying to figure out what to do with him.  He was in a toddler bed, but in a few short months, the Abilify (which we later switched to Risperdal) had shot his weight up about 15-20 lbs.  That is a LOT for a small, 29 lb toddler.  So, we decided to put a queen mattress (luckily someone was getting rid of a nice set right at that time) on the floor and his sleep forever changed.  He slept.  A lot.  Every single night he was sleeping nearly 9 hours. NINE. SOLID. HOURS.  Oh holiness. :)

But, 6 months in to the meds...he was up to SIXTY lbs.  Yes.  You read that correctly.  SIXTY.

We tried backing off of them...but changed our minds in the first few days.  He was evil.  Pure evil.  So the meds stayed and finally his weight leveled off and he was no longer gaining over 5 lbs at every checkup.  He is sitting at 61 lbs now.

So that's Elijah in a nutshell.  I could go on about him forever.  I really could.  He is and has been my world for 6 years.  When he was 2 years and 9 months old, his life, and mine changed forever.

This is where the shared parenting comes in.  I'm not going to go into the details of his life at his father's (we separated when he was a very small 8 month old).  There are a lot of things I don't like, but hey, I'm JUST the mom.  His step father and I got married almost 4 years ago and he is very good with him.  He doesn't necessarily know or really try to get involved a lot with his medical (because I'm his mom and I do it the very best, he tells me!)  But if I need him to go to an appointment with me, he is right there.  We have been through a LOT in 5 years.  A lot.

Ring in little sister.

RaeLynne Ruby Lee

Born 11/14/08 at 8:30am

1 # 14 oz and 11 inches long

Yep. You read that right.  Not even a whole 2 lbs when she was born.  Miss Rae blessed us 14 weeks early.  She was the tiniest thing I had ever seen, and I thought Elijah was small at less than 5 lbs!  We spent from October 21, 2008 (I was admitted in labor at this point), until March 7, 2009 in the hospital.  That is 113 days if you count it out.  It was the longest time I had ever been away from Elijah. I spent most of it by her side, never leaving her, because I feared that she would not be there when I got back.  I went home just a very few times during that period.  We had ups and downs, good days and bad, miserable days.  There were lots of days I didn't think we would ever leave...lots of times when I just KNEW that she wasn't going to make it.  But, thank God...she did and she is here with us now.  For the most part, she is a happy, healthy, bratty, typical 3 year old.  Yes, we still follow up with Childrens routinely, but we have cut it down to probably 3 or 4 clinics at this point.

She is something else.  Something else of another universe.  She is smart as a button, and quick on her feet.  She is witty, and let me tell you...you WILL not outsmart her.  She knows all her letters, numbers to 30, and is starting to write things correctly.  She can count to five in Chinese, and Spanish.  She is just something that I can't even begin to put into words.  She is my little angel.

Like I said when I started rambling...I will never try to say that I know EVERYTHING that there is to know about parenting.  I have had lots of challenges, lots of breakdowns and lots of times I wish I could just run away.  I do know, however, that typical, regular kids scare the crap out of me!  I was joking with the OB/GYN at my last appointment that if we DO have another child and it would happen to be "typical" that I would please like to exchange it for a model more like I am used to!  Of course, that is a joke, and any child is a blessing.  But how people take their children home merely days after having them is BEYOND me.  That conversation is for another day though.  I hope that by reading this blog you may learn something.  That I may help you through a situation that is pressing to you.  That you can laugh with me (or at me, either way!), and that we can just be in this thing called life together.

Ah, the Little things in life!

Elisha