What SHE Deserves

What does my stunning, red-headed, ornery, smart, strong-willed, funny special needs child deserve from EVERY educator that EVER is blessed enough to be a part of her educational journey?

She DESERVES to be treated with dignity
She DESERVES to be given respect
She DESERVES to have that educator be a role model to the other students on how she should be treated
She DESERVES to be pushed to succeed to the highest level of her ability
She DESERVES to feel safe

Does Emma deserve to have it announced in front of her entire class....and 5 minutes later in front of the entire school...that she was "naughty" today and maybe tomorrow she will choose not to be a "bad" girl?

Does she deserve to step off of the bus and come running to me with tears rolling down her face while she is saying, "I lost my sticker, but I'm not a bad girl...I'm a good girl"....and continue to cry about it until 10:00 at night? Only to have the same teacher the next day say, "Well, she doesn't look too traumatized from it!

Do Emma's parents deserve to open her communication notebook (the teacher writes what she did at school that day) to read the words, "Emma was VERY NASTY to me today".

Is it just me or does the "educator" need to be "educated" on how to be a professional.

I have gone through so many different emotions on this whole thing. This is just one of MANY incidents from this year that have happened. But, I am done.....I am turning it over to my husband for him to deal with.

This "teacher" used to be one of my best friends, and I think that makes this situation that much more difficult. She came to Denver (10 hour drive) for both of Em's major surgeries, she has watched Emma for us at times that no one else would......she used to really CARE about Emma.....but now it is quite apparent from her words and actions that she does not like her at all!! It makes me sad....it makes me mad....I do not understand....

And it makes me feel that throughout Emma's educational journey this is what we are constantly going to come up against....teachers who do not see Emma as someone who deserves dignity and respect....teachers who do not treat her as they would any other child....teachers who know that she cannot go home and fully communicate her thoughts about what happened at school that day so that her parents can decipher through it to know if she is being treated well.

I was out of the building the day that the above happened.....I heard it through the grapevine after I made some calls when Em was crying. I feel bad that others are talking about this teacher, but then again I don't!!!

I have taught in that school for 10 years, and I can honestly say that I cannot think of one incident where I said or did something that I would not want a child to go home and tell his/her parents about. So, if the teacher didn't want it to get back to me....she shouldn't have done it....and she shouldn't have written it in the notebook.

A meeting has been scheduled. A meeting between us, the teacher, and the principal. I have had 2 other conversations with this teacher this year about this same issue....apparently it is not going to change with just me. The principal has also already spoken to her (after 6 out of 8 of our staff went to talk to him about the way she was treating Emma). It's an issue that is bigger than I can make it sound on here. I don't know what will be done about it???

Yes, we could move Em to another school, but should we really have to do that when the school that she is in is best for her in every other way?? Should we really have to do that when the teacher is the problem???

Too many questions...too many issues....have I mentioned that I am tired???

I'm Tired

Can I just take a little break from seeing a silver lining on everything that I write about on here. I just need an outlet for a little while and maybe...just maybe it will make me feel a little bit better.

Can I just say that I am TIRED.

I am tired of CONTINUALLY having to advocate for anything and everything that my child needs.

I am tired or worrying about the future....or if there will be a future for Emma.

I am tired of her hitting and kicking and pushing and me not being able to understand WHY?????

I am tired of other children omitting her from games because she isn't always "nice" (see the previous).

I am tired of not being able to explain her behaviors.

I am tired a person who works with her who DOES.NOT.LIKE.HER....and it becomes more and more obvious every day.

I am tired of educators that I can already see placing a "ceiling" on her learning capabilities.

I am tired of not having Emma be invited over to friend's houses for play dates.

I am tired of daily medications.

I am tired of Emma not being able to name her colors....no matter how much I work with her on them.

I am tired of being on an anti-depressant to deal with my depression...and still feeling depressed.

OK...there is A LOT more that I am tired of....but right now I am just tired and I need to go to bed so I can start a new day that will HOPEFULLY not be as tiring!!

Still thankful....just VERY tired!

Everyday

As you enter into our house, you will see a large sign that states "Everyday is a Gift". Different people may have various interpretations of that sign. 6 years ago I clung by every thread of life that was in me to make each and every breath that my child took...into a gift for I was unsure how long the gift that I had been given would be on this Earth with me. 6 years ago today we waited...and waited....and waited some more. What were we waiting for? We were waiting for our INSURANCE. Our insurance was slower than the tortoise in the Tortoise and the Hare in deciding if all systems were go for our precious child to be listed for a transplant. Every time the phone rang we would get our hopes up, and every breath she took we watched....and we waited. The moments that she was awake (at that time it was about 3-4 hours a day) we cherished. We begged for her to be given a second chance at life....her first chance seemed far too short to us. She was only 5 months old...we could not fathom losing her 5 short months after we first saw her face.

Then, the other thought that was wearing on my mind.....another family would have to lose their child for mine to live. What kind of a sick person was I to wish that upon anyone, but I just wanted my baby to get better. I wanted to plan her future whatever it may be. I wanted to see her go to school her first day and lose her first tooth. There were so many plans I had for her and I to do together. I came to the conclusion that whomever she received the liver from would unfortunately lose his/her life anyway (whether my child needed a new liver or not). That was the only way that I could get past my thoughts. I just prayed that the family of that child would make the decision to donate.

Yes, everyday is a true gift. I often lose sight of the package that I get to open every single day. When that beautiful child comes bouncing into my room each morning to wake me up....it begins a new day that is to unfold. The gift is in whatever happens that day. 6 years ago I was clinging to every day and praying that my baby would open her eyes the next day. Today, I am blessed to watch her growing and becoming a child that I am so very proud of (and fiercely protective of).

Tomorrow marks 6 years since Emma was placed on the transplant list (after a 45 day wait from the time she was evaluated and deemed to be a "proper" candidate for a transplant. Insurance took 45 days!). Tomorrow I will cherish every breath that Emma takes, and I will breath a lot easier than I did 6 years ago. I will be enjoying the gift!!

Here's Miss Em 6 years ago....do you see her glowing eyes? She was such a pistol....even when she felt lousy....she would never keep her oxygen in her nose!!

3 in 1 WOW!

My baby is growing up. One week ago we were SO excited that she had lost her 1st tooth. The tooth fairy came and gave her $2.00....although she told everyone that she got $5.00. She must have had a premonition because 5 days later she lost 2 MORE TEETH!! She was playing with a chip clip (the kind that holds the bag of chips shut). I don't know exactly what happened but she started crying and I went in the living room to find blood all over her face and 2 teeth laying on her lap?? The teeth WERE loose, but they weren't ready to come out yet. So, my baby girl lost 3 teeth in 1 WEEK!!! For the 2 teeth the tooth fairy came and she DID bring $5.00. So, Emma's a rich little girl who is now trying to pull all of her teeth out to bulk up that piggy bank:).

Her new teeth have already started to come in, and they scare me just to see them! They are so crooked!!! Her little mouth just has no room for big teeth (it didn't even have room for her little teeth). So, my hope is that they will at least be WHITE!! Here's a little trivia for you (maybe you already know but I sure didn't in my before Emma days)....if a baby is severely jaundice (to the point of transplant....not just "new born jaundice" which is actually a different kind of billirubin) while his/her teeth are forming, the jaundice gets in the teeth. With a new liver the jaundice leaves the skin, but the teeth are permanently stained. PHEW! Aren't you glad that you know that bit of useless trivia now? So, Em's teeth are a yellowish-greenish-gray...and always have been. I just want to see white in her permanent teeth (because those were not forming at the time of her jaundice).

HA! I just had to laugh when many commented that you had never seen me before:). Maybe I'll post more pics of myself soon....after I lose about 20 pounds!! I think it would be MUCH easier to just never get fat in the 1st place and maintain your weight than to gain weight and try to lose it!! I do not like to work out....and I love food!! Bad combination!!! I've never had a problem with weight....until I went through 2 pregnancies (where I kept on 10 lbs. each time). I know that it's not a ton of weight, but I.CAN.NOT.LOSE.IT!!!! Hmmmm.....maybe I'll go get a cookie now:). I wouldn't trade my 20 lbs. back and not have my children though!! They are SOOOO worth it:).

Owen's girlfriend:)

I know that it seems like I have fallen off of the face of the Earth. Quite honestly, at times lately that has sounded like a good plan (no....I'm not suicidal or anything....just some things that are going on that are difficult....in regard to Emma). Sometimes it's just easier for me to hide in my little hole than it is to share. So, I disappeared for awhile, BUT I am back now. I'm going to take a little break from my day-to-day Make-a-Wish trip postings, but I am going to share a few MAW pictures.

Owen FELL.IN.LOVE with Ariel. I may have mentioned this before, but he was quite smitten! However, he was totally playing hard to get. If you go to YouTube and type in Owen with Ariel you will see my little man in action. It is quite hilarious:).

Here are a couple of pictures of Owen and Ariel:





And here is a picture of our family in front of some of the 5 million lights from the Osbourne family spectacular! They lit up the streets in Disney Hollywood. It was fantastic!