Friday, October 31, 2008

Happy Halloween

Update on Emma's most recent Doctor's appointment! For the last 4 years a good chunk of Emma's skull is gone, hence the need for a helmet. Every doctor's appointment, it's been "Maybe a year, let's watch the thickness of her skull and see". Earlier this year we met with the Craniofacial Plastic Surgeon and she needed to confer with her neurosurgeon over Emma's skull because she felt Emma's skull is not quite thick enough to have done it this past summer. Well, this morning he said.. Anytime we are ready, the docs are ready and that Emma is a good candidate for reconstruction NOW!! Whoo hoo! HOWEVER.. We are going to schedule for this summer for a few reasons. 1. I would prefer Emma to not miss any school.

I know, I know... I feel like I have been saying this forever but it's really happening this time. Dr. Shafron is going to start scheduling and coordinating everything ASAP!! We could have done it now but we all agree that summer will be better for Emma. Sooooo... look forward to emails and photos around June of Emma's surgery! YAY!!

So what will be done is a Calvarium Split/Splice. Another area of her skull will be removed, sliced in half. With half going back to where it came from and the other half being placed in open area and grafted and anchored in. Her down time will most likely only be 3 weeks, of course depending on no complications post surgery. Don't get me wrong, I am scared to death. Nothing scares me more then the thought of Emma not surviving this or any other complication that may arise due to her seizures, her shunt, etc. I am staying positive. Emma survived once.. she can do it again.

I always thought closure meant seeing Tom go to prison and him telling us what truly happened. I have accepted that has not and will never happen. Tom will never tell us what really happened, and he will not go to prison unless he violates his probation. HOWEVER, it no longer matters. As long as he NEVER lays his hands on another child, Emma and I will have closure when her skull is repaired. Emma has a long road ahead of her and my job is to guide her and let her see the beauty of her life and the chances she has been given in this world. I don't want her to grow up with despair or anger over this brutality she has suffered. She has lived and lives a great life and I want her to see that each and every day.

Also, I am starting a new job on Thursday with a GREAT and progressive Oncology office. I am very excited! The pay is great, the benefits are awesome. So, Emma will have plenty of insurance. So, she will have her Medicaid, the CRS (Children's Rehabilitation Services), ALTCS (Arizona Long Term Care Services), DDD (Department of Developmental Disabilities) and now, add Blue Cross Blue Shield. Of course, since Emma has been declared permanently disabled since she was 11 months old, Emma will always be covered under any insurance plan I have, no matter her age (even at the age of 40!) Can it get any better? After 4 years of worrying, this is a GREAT year!

Emma is steadily progressing and she is beginning to walk more and more with less assistance. She can stand for 60 seconds with NO HELP! She just gets scared, as long as she knows somebody is right beside her, she is more willing to be a little more adventurous! She has quite the personality, though. she has sent me to time out many times. As a matter of fact, as I had a heated conversation and fight with her Dentist's office Wednesday morning (long story.. but they are fired), I kinda forgot she was in front of me and I was getting a little loud and Emma said "Momma.. you talk nice or you go outside!!" She is a hoot! The Dr's got such a kick out of her today, she was showing off for them and being just the cutest!

She is a smart little cookie and a tough one at that! She is totally in to Barbies, Princesses (She says she is Cinderella, she calls me Belle and Aunt Thereasa is Sleeping Beauty). When she is mad at me for sitting her on the potty chair, she is telling me off- while singing! It's the funniest thing ever!

On another area, though, I am hoping that for next April (Child Abuse Prevention Month) my friend, Jessica and I, in conjunction with Phoenix Children's can get a candlelight vigil for survivors and non survivors of Child Abuse. As we take baby steps, we would like to create a park in honor of Child Abuse Victims. That will, however, be in the future.. but slow and steady wins the race! Is this the beginning of all the good things to come? I think so!I am attaching pictures of Emma in her costume this morning (she trick or treated at the CRS Clinic this morning). She is a Wooland Fairy!

Please keep Emma in your thoughts, hearts, etc. as we start getting closer to this surgery!

Thank you all for all of your continued support!

Jaime and Emma

PS Hi Salena!! Yup, I am getting more active! You made me a blogger addict! LOL

And Mary, send me your email and I will email you my number and I will also post a blog about the entire story about what happened to Emma.

Thursday, October 30, 2008

Oh Mother, My mother...

Just an old poem I was given back when I lost my first 2 babies at birth. .... I would post their photos on here but my blog is private and I don't think I would like to upset anybody with photos of my deceased daughters.

Oh Mother, My Mother
Author Unknown

Oh Mother, my Mother
I touch your tears
invisible fingers
soothing your skin
I know you think of me so often
in the day, in the night,
in your dreams
going into an empty nursery
knowing I'll never be there
but I your heart
in your soul, I shall always be
for you gave so unselfishly
of yourself.
Inside of you, you created
such a world of laughter, of love,
of sadness, of sorrow
every emotion people come to know
you shared with me.
And even though I may never
fell your arms around me
I felt your heart beating,
like a lullaby, singing me to sleep
and your spirit giving me a safe haven
already protecting me
nurturing me
preparing me of things to come.
But sometimes the journey
of life pulls souls apart
and yes, I had to go on
to another place.
I wish I could stay
I wish this was a decision
I could make
and I know you do too.
Know this wherever you are:
I will always remember
that yours was the first love
the first joy, the first soul
I will ever know
you gave me the courage to
go on in my journey
I hope I can do the same for you
your heart beat will always
call me to you.
Love, your child

Thursday, October 16, 2008

Picture Game!!

Go to your pictures, then to your 4th folder, then to the 4th picture.. then try to remember that day. And tell us something about it.
Heh. Pretty self explanatory. Emma was rocking her baby to sleep! This was in late 2006 or early 2007

Wednesday, October 15, 2008

Commandments of Raising a Special Needs child..

This is soooo true!

By Michele Steifel

I. Do not avoid talking about our child with us. Do ask how he is doing. We may not answer much in the beginning — or we may spill our guts! Either way, we remember those who asked and can't seem to forget those who didn't.

II. Touch us; touch our child. A hug, a hand on an arm, a look into our eyes lets us know that you care. A gentle caress on a child's cheek or holding a hand makes us feel "normal." We feel very alone and different in the beginning.

III. Don't tell us how we should or shouldn't feel! We feel what we feel and that's that! We are struggling with raw emotion that is usually right near the surface.

IV. Don't say, "God only gives us as much as we can handle!" We are just trying to survive from one day to the next, especially in the beginning. What an additional load to put on someone who often doesn't feel like he or she is handling anything well at all!

V. Don't say, "I admire you" or "You are so noble" or You are so strong." Unless the parents willingly went out to adopt a child with special needs, we didn't want it to happen! We don't feel noble. At times we even feel trapped!

VI. Do offer to help. Come and sit with the child so we can take a much needed break. Cook a meal or two and deliver them. Offer to take the siblings out for ice cream or pizza. Tell us that you are just a phone call away if we need anything — and then call us back to see how things are going.

VII. Be patient with us. It is very hard to work through our grief. In the beginning, all we can see are the things that our child can't or will not be able to do. If we have always been independent or overachievers ourselves, it may be hard for us to accept your help right away. Please persevere; eventually we will be ready to accept your help.

VIII. Be sure to acknowledge the sibling of the special needs child. In the aftermath of a diagnosis, etc., The sibling can get lost in the turmoil. If you go to visit, take something special for the brother or sister, too. Be sure to say hello to them. Talk with them before you make a fuss over the baby.

IX. Please don't stare. If our child doesn't look "normal" or acts differently, we are very aware of it. In fact, that's all we see at first. Find something positive to say — something as simple as "What beautiful eyes!" can be music to our ears.

X. Remember, no matter what kind of disability our child has, he is still a child. He has a need to be loved and accepted. He has a need to be happy and to belong. He needs hugs and laughter, music and friends. He needs you — and so do we!

Monday, October 13, 2008

Loving being an auntie.. and a great aunt too!

Ok, I have a HUUUUGGGGEEEEE family. 5 brothers, 3 sisters. I have a whole buttload of nieces and nephews. As a matter of fact, we welcomed my newest niece on October 7th. Also, in July we welcomed my great niece. I also have a great nephew and a great niece coming soon. Man, I don't know how I am going to remember all of these birthdays!! I can barely remember when mine is. One of these days, I am going to be the awesome aunt who ALWAYS sends a birthday card. One of these days, oh yes, I will...
However, the top one is the newest niece. Isn't she beautiful??? I think so. The smiling cuteness? That would be my great niece. I swear, I have the most beautiful family eva!!!

Sunday, October 12, 2008

Not yet popular...

Sigh. I have no followers on my blog. It's ok though.

Ok, I am officially 30. According to society, I should be at a completely different point in my life. You know what, I really don't care.

I am single.

I am a single mom.

I am raising a disabled child.

I am still trying to finish my education.

I am not a homeowner.

I only work part time.

I drive a POS Saturn.

All those things, if I look at this in a negative aspect, I would say I am a loser. However, I look at this from a positive point of view:

I am single. Meaning, I can have my entire apartment pink with no input from the man cave. Also, I don't have to shave my legs unless I am having a "visitor". I can eat ice cream for dinner. Answer to no one.

I am a mother. It's great. I love her. She is my precious. She is my world.

I am raising a disabled child. She wasn't expected to survive her injuries. She is alive and doing much better then ever expected. Her being disabled, I think, makes me a better mother. She is smart, witty, amazing and more loving then you can ever imagine.

I am still working on my education at the age of 30. less chance of a midlife crisis. Seriously. I am working on my bachelors! I can do this because I am working part time, I am a renter and my POS Saturn is paid in full.