Thursday, December 31, 2009

Happy New Year's!!!

Myspace Graphics

My goodness, another year has passed. Not only that, we have passed a full decade in to the Millennium. How many of you remember the Y2K fears? I do. I remember December 31, 1999 going to downtown Tempe for the Fiesta Bowl Block Party and if I remember correctly, University of Nebraska was playing at the Fiesta Bowl. I also remember it being the first New Year's in which I could legally drink alcohol but my friends weren't quite there yet. We went down to wait for the clock to hit midnight and welcome the insanity that was to happen at that point. Pop! Boom! Fizz... seriously? That's it? Oh well, it's always exciting to wonder about the unknown. I guess that's why I like dystopian, speculative, paranormal, urban fantasies, scifi, fantasy and mysteries sooo much. Ahh, though, to be young and 21 again..

As I am sitting at home, running a fever due to a stomach virus I caught from my daughter, I am looking back over the last decade. CRAZY! I can not believe how much two people have been able to take and survive! Looking back... I see life, death, births, happiness, heartache, disappointments, goals, let downs, child abuse, trials, heart attacks, cancer, job losses, job gains, losses again, finding old friends, making new friends, family, homelessness, recovery, Iraq war, and this list can go on. These things listed have been happening in my personal life (whether to me personally or my family) but some didn't survive (my first two daughters didn't survive long after their births and my mother lost her life to cancer) but the rest of us did. We haven't come out of this first part of 2000s unscathed but I refuse to let the last 10 years dictate the next 10 of my life. I am turning 32 in 10 days and am not getting younger.

I like New Year's Resolutions. They are goals that you write and hope to keep. They are a positive motivator to want to better ourselves.

10 years and how about 10 resolutions???

1. Being more stable with employment, education and health. No gaps.

2. Work on my patience levels.

3. Be a kinder person.

4. Lead a healthier lifestyle- eat healthier, exercise more, phase out caffeine completely, go to my doctor for a healthy lifestyle plan, staying positive being a BETTER FRIEND and being open to have healthier interpersonal relationships. Also, being more accepting of all the things in the past and give it up that I can NOT change what has happened but to continue to better myself for it!

5. Reading more, having a faster turn around for reviews, and keeping up with my blog more. Maybe even start a book club? I love Dog-eared used books (, a local independent used book store, and may hook up with them for a club! I want to though, feature them on my blog and take some photos!

6. Volunteer in the community more with Emma and getting her into Girl Scouts. I feel so much of her time outside the home is school and therapies, she needs more, I don't want to see productive because school and therapies are productive, socially productive time. This also includes doing more for Child Abuse prevention right here in my community.

7. Do more activities with my daughter. Library, parks, crafts, etc.

8. Getting Emma potty trained and out of her wheelchair!

9. Fix myself up more. I rarely wear makeup, style my hair or get dressed up. I need to do that more. Just for me.

10. Last but not least.. no more slacking on housework!

Oh wait, one more.

11. Get out more. I spend so much time at home, work and school is starting up later in January, I need more social time. Seriously. Also, included will be getting back home to visit family and friends more. I also add in the Shaken Baby Conference in September as part of my resolution.

Friday, November 27, 2009

Fundraising site for Emma's bike!

This is the widget that will connect over to paypal in which any funds that come in will go DIRECTLY to Freedom Concepts, the manufacturer of the bike. I will not see a penny, it goes right in to Emma's bike account. Once the full amount is raised, then the bike will be built and shipped to Emma. I love the Widget, it shows the progress. You can also remain anonymous. It's GREAT!

Below is the link to the site, just copy and paste to your browser so you can read more!

Thank you! We know times are tough for everybody, even if you can forward to link to your readers, family, friends, and such, that would help so much. I am starting a new job on Monday, the 30th, so I won't be able to contribute for a few weeks and then not again until my tax refund has been sent to me. Then whatever is left at that time on the balance towards the bike, my tax refund should cover it! Will make a great Spring time gift for Emma!

Thursday, November 26, 2009

Take the Pledge to Help Stop the Spread of Germs

Take the Pledge to Help Stop the Spread of Germs: "Pledge today at to help keep your family and community healthy this cold and flu season. You'll get a valuable coupon and we'll provide a donation to The Kids In Need Foundation for the first 100,000 pledges submitted!"

Saturday, November 7, 2009


Too make a long story short, Emma was born a happy, healthy normal baby until she suffered a horrific act of child abuse called "Shaken Baby Syndrome" (SBS). Emma suffered SBS with a blunt force trauma. She was in the Pediatric Intensive Care Unit for one month following major brain surgery in which a portion of her brain had to be removed, part of her skull removed, a shunt placed to keep fluid off of her brain, and just overall recovery. After the month long stay, she was moved to the Neurological Rehabilitation Unit for another month in which she endured grueling physical, occupation and speech therapies. She had to learn to eat again, to sit up again, to smile, and regain all she had lost. She ended up being put on a feeding tube as she wasn't intaking enough calories and she was inhaling most of her fluids which put her at risk for pneumonia and other lung issues. She wore a helmet, a leg brace, an arm brace and had issues with her vision due to the brain damage.

Now 5 years later, she is just starting to walk, she has cerebral palsy on the left side of her body, she is cognitively delayed, speech delayed, and no longer wears a helmet after having major surgery this last July.

One issue we have is that due to her Cerebral Palsy, she can not walk very fast. Which means not enough cardio. The best way to get that heart beating is riding a bicycle! Today we were fitted for a bicycle along with several other special needs kids. These bikes are adapted for each child's different disabilities. These bikes, however, are not covered by insurance and are very expensive. We are going to do some fundraising activities so that all the children can own a bike and lead independent lives. These bikes, as I said, are expensive. However, they will last many years, to adulthood with changing a few things (seat, handle bars, etc) in the future. I am also going to call on those in the Blogosphere for help! This is going to be Emma's Christmas gift. Since I have been unemployed, I just don't have the money. I start a job at the end of November and hope I can come up with $500.

$1 will go soooo far in this quest. Let's say through the internet we raise enough to buy Emma's bike and THEN some, the left over money will go to the pot for other kids. I am brainstorming right now.

The company that makes the bikes is going to email me the estimate and a link to set up a page for Emma for donations. I am so excited. If I can get her this bike, it will be such an AMAZING gift for her. Hours upon hours of happiness. The chance to join other kids outside, to be independent, and just be happy. Most of the kids with disabilities don't get a chance to play with other kids because their free time is spent on therapies (Physical, speech, occupational), doctors, and just to do a normal activity takes much longer. They spend so much of their time working.

I just hope that when I get the link that I can ask you all to pass it around. Like I said, $1 will be sooo huge!!!!


Tuesday, November 3, 2009

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Tuesday, October 20, 2009

Some day..

Good will overcome evil. Until then, I want to push this video to the forefront. A reminder of a life so beautiful, crushed and then rebounding stronger then ever.

It shall never be forgotten that it is NEVER, under ANY circumstance, OKAY TO SHAKE A BABY!!!!!!!!!!! Shaking a baby shatters lives. Many many lives. I can't stress how much pain we have gone through watching all that Emma has had to endure. So much pain... it still hurts each and every single day to see the damages shaken baby syndrome has caused to my sweet, perfect Emma....

"The only thing necessary for evil to thrive is for good men of conscience to do nothing'"
Edmund Burke

Never forget to be a good citizen, child abuse affects each and every person on our planet. If you suspect ANYTHING call call CALL! Don't say "I don't want to be involved!" Why? If you turn a blind eye and don't protect a child/the elderly/the disabled/our neighbors.. you are just as culpable as the person committing the crime! This has to end.. NOW! Be a good neighbor.

Always remember.. somebody somewhere is fighting a bigger battle then you know. A kind smile, a hello, how are you, or can I help you can go a long, long, long way in somebody's life.... Pay it forward. Kindness, goodness, love, and compassion. We are capable of it. I know it. I know we can be good again. I know I am not perfect, I don't even pretend to be, I am working so hard on being kinder, gentler, and more understanding, compassionate, and loving. We can do it.. just one person can make a huge impact. With the economy, the healthcare and unrest in our world, we are people under stress and uncertainty but there are people dying of hunger who would give anything to have some rice. Some are lonely and would love a hug...

Wow.. how did I get on THAT soapbox?

Throw me some ideas. What can we do? What will YOU do?

I will think of something to do. I am going to keep my eyes open... there is a senior apartment complex near by. Maybe I can make something for somebody and leave a random "just because" gift.

Monday, October 19, 2009


How much cuter can you get? She is such a happy little thing. My big first grader. Sighh...

Sunday, October 18, 2009

The time has come...


The time has come where Emma is starting to be more and more aware of the things that are happening to her, about things that have happened to her and why she is "different".

She talks about her most recent surgery. She knows her head was fixed, although I am not exactly sure what her comprehension level is but she understands. I think more so then I give her credit for. So, today, I was looking at the photos I have of her from a few days after her head injury and her recovery. First she said "Oohhh poor baby! She's sick!". Then she noticed me in the other photos with "the sick baby" and she asked me "what's the baby's name?". I said "Emma". She said "like me?". "No, baby, that IS you. That is you when you were a baby and you had a head injury". (I have told her several times that she had a head injury.). She then asked me a loaded question. "Why?". I just looked at her with my jaw dropped, and tears pooling in my eyes and said "I don't know the answer just yet".

How does a mother look her daughter in her eyes and say "You were abused. You were a normal, healthy, bouncing beautiful baby and you were shaken. Your brain was murdered and your "normal" life was stolen. You were shaken and I can't tell you why because the person who did this will NEVER admit to doing it, let alone why". I don't want to lie to her, but how do you tell your child the truth, when this will be a painful truth. I am not ready to answer this, I need to wait until I think she is ready and can understand the impact of the answer. However, who am I to decide WHEN she is ready? How do I tell her? Is there any way in this world to lessen the heartache? Isn't that what a mom is supposed to do- make the heartache go away, kiss the boo-boo's goodbye?

It boils down to... I don't want to hurt her, but I don't want to lie to her because that will be more painful.

Bah. I am rambling. Remember.. it's NEVER ok to shake a baby!

September 2010, is the 11th International Conference on Shaken Baby Syndrome and it's in Atlanta Georgia this round. I have never been able to attend and I really, really hope I can this time. There are events and special rates for survivors and their families (and families of non-survivors). I am just hoping financially I can swing it. If you know anybody who wants to sponsor a struggling momma raising a child suffering from Shaken Impact Syndrome while going to college, let me know! LOL. Or better yet, let them know! Just kidding, but actually, not really. LOL. I am saving up and hoping to score a job on campus next semester for Work Study, I think that will be easier then working off campus. I really am wanting to go. It's a year away and will allow me time to be able to save up. I am nervous taking Emma on a trip like this, but it may not be as bad as I think. Either ways... Atlanta 2010 HERE WE COME! I just really, really want Emma to start meeting other children who are JUST LIKE HER! To know, she is not alone.

Here's the link to the conference and also, it's a GREAT site with a wealth of information about Shaken Baby Syndrome. National Center on Shaken Baby Syndrome

Sunday, October 4, 2009

NEVER Shake a Baby!!!!!!!!!!!!!!!!!!!!!!!!

Photobucket Today is a very very sad day. Too many babies are being shaken, some die, many have profound disabilities and some come out with minor disabilities. Why is today extra sad? I just learned that my friend, whom I met through a Shaken Baby Syndrome Support Group, lost her son today. When he was a newborn he was shaken so severely that he was left severely disabled. Today he was a 7th grader. He never learned to walk, talk, and was blind. His basic life was stolen from him as a baby and today, he is gone for good.
This is a strong reminder.. NEVER under any circumstance SHAKE A BABY!!!! Just walk away.
I am in a VERY bad mood right now. I am pissed off at another injustice in this world. He didn't deserve this, his mother didn't deserve this and NO BABY deserves this. His death hits very close to home, we never physically met but over the last 4 years I was able to call his mother friend and I thought of TJ quite often. What should be a joyous time in their lives is now tragedy.
A bloody travesty.

Sunday, August 16, 2009

Mmmm Cookies!

Cooked from the heart is hosting an AWESOME giveaway for Pillsbury Simply ...TM. The prize pack includes a canvas bag, a cookie jar, and a coupon for free cookies!! How awesome is that?

Head on over to her blog to enter!

Friday, July 24, 2009

Once again, reminiscing

Photobucket (6 months old, before injury)

Looks like you have to click on the photos if you want to see them, they are too big for the blog :(
I am. See, I never wanted kids. So when I found out I was pregnant with Emma (despite all the precautions I took), I had planned to give her up for adoption. I was spoiled rotten, I was flighty, irresponsible, not the most patient and loved kids, but for a little while (liked to send them home after I spoiled them). However, when I had her, I fell in love with her and made her a promise. If I felt I couldn't handle her at any moment and couldn't find it in myself to give her what she needed, then I would go back to the adoption agency and give her what I physically and emotionally can't. Obviously, we know what happened :) I have to say, I am proud of myself. I fell head over heels in love with this little girl and am impressed with the direction my life went since I had her.

I am just reminiscing about what she has gone through over the last 5 years and am in jaw dropping awe and the resiliency she has endured. At 11 months of age, she suffered a brutal act of child abuse, Shaken Baby Syndrome with Impact, and had part of her skull and brain removed to save her life. She had to undergo several procedures. She suffered serious brain damage and a stroke and nobody knew if she would ever be anything more then a vegetable. She ended up spending a total of 4 weeks in Pediatric Intensive Care and another 4 weeks in neurological rehab, spending most of her days in therapy. She had to have a feeding tube, wear a helmet, leg and arm braces. She had to learn to sit up, eat, use her arms, hands and legs again. Even smiling. She had to learn to smile again. I lived with her in the hospital. Read to her while she was in a coma. Read to her while she was so exhausted from therapy. I like to think that reading to her is part of what saved her :)
Photobucket 3 days after injury and surgery
Photobucket (about 15 days after injury)
I had a hard time accepting what happened to her, I went through a huge state of denial believing the person's story that it was an accident. See, believing it was an accident made it easier to deal with my child. I didn't want to think that somebody really picked up my child, shook her and slammed. However, the truth came around. And the anger and sadness helped me heal which in turn helped Emma.
Photobucket (7 months old, before injury)

Now, that the person has been convicted of Child Abuse and Emma had her skull finally repaired, on July 16th of this year, we have closure. Literally and figuratively. Emma each and every day has shocked me. She is such a smart, loving, incredible, albeit FEISTY child.


Monday, July 20, 2009

YAY!! We're home!

Hi everybody!! Surgery was a success and Emma is doing absolutely, positively wonderful. The photo shows her eyes still very swollen but this morning they went WAY down and she looks great. She has quite a bit of bruising under her eyes on the right side of her head. She is not on any pain meds except Tylenol as needed.

I am exhausted and we are going to have a REAL sleep in OUR OWN BEDS right now and I will catch up much later tonight or even tomorrow!

Wednesday, July 15, 2009

Big Surgery tomorrow!

Alright my lovely book-loving blogging friends, my daughter's surgery is scheduled at 9:30 am tomorrow (July 16th) and we check in at 7:30 am. It's a 3-5 hour surgery, with a 3-7 day hospital stay. I seriously doubt I will be online much.

Just a few favorites of my daughter:

Until then, take care of yourselves!

Happy Reading!


Tuesday, June 30, 2009

So excited!

I have launched a book review blog and I couldn't be any more excited! It's still green and ground floor but so, far the few responses have been positive enough to receive brand new books to review! So without further adieu- I present the BookNerdExtraordinaire

Monday, June 29, 2009

Letter from your brain

I just think about Emma's injured brain when I read this:

A Letter From Your Brain


I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.


your wounded brain
Pretty Emma! June 14, 2009

Sunday, June 28, 2009

It's getting closer.....

July 8th is nearly here and that is the day Emma was shaken. It's a very difficult time for us and I thought I would share the letter I wrote to the sentencing investigator after the trial against the person who hurt her was over and this person received a verdict of GUILTY on reckless child abuse. Although this person was found guilty and it's public information, I am hiding the name due to this not being a blog to wish harm upon this person but to heal, to share and continue to move forward. At each milestone we hit, it's another piece fixed and to continue to harbor hatred or ill will, it will be detrimental to all the work we have done to continue our lives. As Emma is also going to have surgery July 16th, I just want to think about all that has happened and the bridges we have crossed. This letter was written May of 2008:

Emma Nichole was born on August 7, 2003. She was 8 lbs 6 ounces and 19 inches long. From the moment she came into my life, she was very much a wanted baby. My world revolved around Emma. She was the calmest baby I have ever encountered (I have 21 nieces and nephews, 6 great nephews). Even the day she was born she was calm. The OB nurse had a little laugh about it, when she removed Emma to give her first sponge bath, she said Emma just laid their calmly and allowed her to clean her up and check her temperature, and do other routine things, where most newborns would cry. I was very scared being a new mom raising a new baby, I wanted nothing but THE BEST for her. The first 6 weeks at home were actually very easy. Most new moms are sleep deprived, not me. Almost from day 1, she slept through the night. She would lay in bed with me and calmly listen to me read stories to her. She hit all of her milestones, sitting up at about 4 months, crawling at about 6 months, pulling herself up at 10 months and toddling along with us holding her hands at just before her 11 months. When she was teething, I didn't even know! She rarely made a peep! Never complained. Emma was constantly happy. There wasn't a day she didn't smile. Her laugh was infectious, she would giggle right from her eyes down to her toes. She had this glow about her that people would be so drawn to her. They would literally stop in their tracks at the stores and flock to her. She relished in that attention and would flash her beautiful smile. Emma had been sick at 4 months with the beginning of bronchitis in December 2003. Then she wasn't sick again until the first week of July. She began with an eye irritation that she would rub her eyes- ALOT and their was discharge and she also had a runny nose. That brings us to July 8, 2004. When she was seriously hurt. That was also when I learned her eye irritation was actually pink eye (actually it was July 11, when the ophthalmologist looked at her eyes and said it was conjunctivitis aka pink eye). The day she was hurt, she went through a major brain surgery. She had a portion of her brain removed due to the brain delivering itself due to so much pressure. The pressure caused her skull (she also had a 10 cm fracture that began over her left eye and went around the right side and ended in the left occipital region.. I may not be 100% correct on this information, but she had a BAD fracture that crossed suture lines) to be forced out on the right side and her right bone flap was removed. It's still gone to this day. She had a few maintenance procedures done after that. One to change her JP drain (to keep fluid off of her brain), another one to change from a JP drain to an EVD drain (her body was not reabsorbing the spinal fluid) and finally at the end of July, she had a right VP shunt placed (it's still there). So through the month of July she had 4 surgeries. Emma was also on a ventilator for I believe 10 days. I was told in the beginning she would not survive the night, nobody thought she was going to pull through this. It was THAT severe. The whole month of July she was in the Pediatric Intensive Care Unit. Then at the beginning of August, 2 days before her 1st birthday, she was moved to the Neuro rehabiliation unit at Phoenix Children's. She underwent countless hours of Rehab. Physical Therapy, Speech Therapy, and Occupational therapy. She was fed through an NG tube (a tube in her nose). Due to her suffering a stroke, her ability to swallow was affected. She has a low tone in her mouth and her coordination of her tongue was also affected. Her foods and liquids had to be thickened to the consistency of pudding to swallow safely. Eventually she ended up have a GTube (feeding tube surgically placed) placed before she could come home. She had to be fed through a pump as we worked on getting her strong enough to swallow. Emma was also found to have retinal hemorrhages in her right eye. All in all she spent 2 months in the hospital, suffered through 5 surgeries DURING her hospital stay, received a helmet to protect her brain and braces for her left leg. She did get hospitalized again in January 2005 due to catching RSV and she wasn't able to fight the virus on her own. .

To present, Emma doesn't walk. She has left side hemiparesis in her left arm (essentially it's a Cerebral Palsy paralysis) and wears a brace on her left arm to keep her thumb out and as soon as we can desensitize her arm (her brain sends signals that she is in pain with being touched even just lightly), she will get botoxed so we can straighten out her hand. That left arm is atrophied. Her left leg wears an AFO due to her foot dropping from the Cerebral palsy in that side. There are also possibility of having a tendon lengthening surgery in the future and also botox. Her leg is pretty stiff at times. It's stronger then her arm, though. We have to purchase special shoes for the brace because there aren't any shoes in the regular stores available that will fit around the brace and also be deep enough to keep her even when walking. Those shoes cost $40 a pair. Emma mobility consists of her scooting on her bottom wtih dragging the left side of her body. She has wheelchair (Convaid Cruiser) for transportation. A Walker (Pacer Gait Trainer) for when we walk. Emma's eyes are a problem. She doesn't use her right eye due to the brain damage. Also she does have a left visual field neglect. So essentially she is using the central and right visual field of her left eye to rely on. Her right eye is "lazy". We are using atropine drops to her left eye to "take away" the vision and make her use her right eye. She also wears glasses for that purpose. She did have a surgery in May 2005 to correct the muscle on her right eye (surgery #6). She also has dental problems. Her 4 front teeth have rotted. In July 2005, she had root canals and caps on her front teeth done. (Surgery #7- she was placed under anesthesia and treated at the hospital. Also due to her shunt, every dental cleaning and procedure she must be on meds first to prevent bacteria from getting in the shunt). February 2006, 1 of her teeth abcessed and had to be pulled. July 2006, the 2 front teeth abcessed and are now gone. Emma is on anticonvulsants. She takes 100 mg of Carbatrol 2 times a day. She does have seizures but her medications now have them under control. Emma has excessive drooling due to still having a weak mouth. She can eat and drink normally (well, she is working on drinking from a cup), her feeding tube was removed on April 2006 (Surgery #8). My mother passed away February 2006, my mother never got to meet Emma before she passed away from lung cancer. All she knew of my daughter was from photos. We went home for my mother's funeral, and that drive from Arizona to Kansas made Emma sick for 2 weeks. She couldn't handle it. Also, we are in talks of repairing her skull. That won't be until she is around 6-7 years old. She will be going through a MAJOR surgery at that point.

Emma is learning delayed. She is a beautiful, loving child but has outbursts and mood swings that can be quite heart wrenching. My sweet baby that used to let me hold her and cuddle her, doesn't let me do it anymore. She doesn't like anybody or anything too close to her. She has a sensory problem and she becomes easily overstimulated and will start screaming and crying. Her speech is considered severely delayed. Her cognitive levels are severely delayed. Her IQ is 56. Which according to the DSM-IV classifies her as mentally retarded. Those are some hard words to read, knowing that Emma wasn't born like this and that her entire future has been altered at the hands of a *person* SHE and I trusted. She has trouble making friends due to the space issues. She will play side by side with them but doesn't play WITH them. Her hyperactivity and behavioral and emotional problems will impede her education. There are just days where she can not be comforted. Her teachers and day care instructors already know if we have a "Grumpy Emma day" that their days will be tough and she is hard to work with and make happy, she spends alot of those days in a quiet room where she can unwind. When we have a "Happy Emma Day", then those are the days I see the old Emma. Her teachers have a great day with her, she will sing, give hugs and kisses. Let me add, Emma will most likely always be in Special Education, most likely be in PT/OT/Speech therapies for as long as we can see. She currently attends a day care for Children with Special Needs.

I think this sums it up. The Emma I knew died on July 8, 2004 and that act of shaking and slamming my daughter gave birth to a new Emma. I love Emma with all of my heart, and I still continue to want nothing but the best for her. The new Emma is a child with a lot of problems. She is still my sweetheart, but we lost who she was that day. The dreams of signing her up for ballet and softball are gone. The days of watching her run have never happened. She should be potty trained but isn't. The sad thing, I get upset when her birthday rolls around. Chuck E Cheese isn't very handicapped friendly. I feel it's wrong to have the other children run and have a great time while Emma has to rely on help. We still do it, but it's heart breaking when she asks to "run with the kids" and she physically can't. Emma is just beginning to understand that she isn't "like the other kids". One day she is going to ask me what happened to her, I fear that day of telling her. I let my daughter down the day I met *that person*. I thought I found a wonderful *person*, only to learn that s/he was the enemy in the worst way. I still suffer nightmares and flashbacks of seeing my daughter being whisked away into an emergency surgery, I still see her being resuscitated in the Emergency Room at Phoenix Children's Hospital. I still hear those words ringing in my ears "She probably won't survive the night" I still wake up in cold sweats thinking about what horrors my daughter went through that day at the hands of a person I trusted with my most precious person- Emma. I went through a severe depression for 3 years because of this. It's a hard pill to swallow- Child Abuse. I was only able to work part time due to all of Emma's appointments. We are moving into a modified apartment for Emma to be barrier free (it's completely modified for wheelchair access). I am starting to work with the local Child Abuse groups to help teach others about what happens when a baby is shaken.

I want this to face the maximum penalty of the State of Arizona. No matter what happens, Emma's brain will not get paroled and returned to her. Emma will never regain everything she has lost. My heart was permanently broken that day. I will never regain who I was ever again nor will I ever be able to trust another soul with my daughter. At the age of 4, my daughter has seen hell and back and has lived to see another day. That person nearly took Emma's life and has never shown any remorse for his/her actions, only concern for his/her own self. Never once asked about Emma's well being when she was dying or when she was laying in a Coma. Emma barely made it out alive. Just barely. I am not angry, as a matter of fact I have forgiven that person for what s/he did to Emma. However, it is not my forgiveness s/he needs to ask, it's Emma's. Right now, I am Emma's voice and until she can speak for herself, I will continue to be her voice and fight for her.

Thursday, June 25, 2009

We've come a LONG way...

Just a montage I made some time back. I know, I know that exist is spelled as EXIS on the last frame. I ran out of space. lol. I will pay for additional writing and time to build a better one. Turn your sound on and grab your kleenex because Emma has come a long, long way!

Sunday, May 31, 2009

It's been awhile and I am suffering from Insomnia. So how about an update?

It's been 6 months since my last post and quite a few things have been going on in our lives and in our world.

First off, a huge hoorah for Emma. Why? She has passed some MAJOR milestones. Milestones that I wasn't sure if they were going to come any time soon and they did!! YAY!! Here they are:

1. Walking by herself without ANY assistance for 10 feet!! This is huge. However, Emma needs to know somebody is close by just in case she loses her balance!

2. She has BIG GIRL TEETH!! OMG!!! She has her permanent teeth coming in and this is wild! I honestly have not really allowed myself to think too far ahead since she was injured, just taking it all day by day, and seeing ADULT teeth coming in was a shock to my system. She is no longer my baby. Can I cry now?????

3. She is afraid of the dark, has imaginary friends (ok, her index finger is her friend and his name is John. Cracks me up!), and is doing all the silly things CHILDREN should do. I know it seems weird that these little things are a milestone and it's things we sometimes take for granted, however, when you have a child who is developmentally delayed the "normal" nuances of childhood are so important. Seeing her imagination bloom is so important.

4. She finished kindergarten.

5. She is going to get her skull repaired. We have waited a long time for this and then we finally get a surgery date. April 15 and guess what? Bless her little heart, but she falls sick. We get a new surgery date of May 13th and what happens? Bronchitis. It's so crazy because Emma isn't a child that is normally sick. So, hopefully in July. I cried and cried after the second cancellation. I feel selfish, but when you have been through what we have gone through every teeny tiny thing that bring a type of normal is important. However, Emma's health and life is much more important.

I just feel extremely blessed each day I have with her. In all her spunky gloriousness, I am very lucky.

I have been having a lot of insomnia lately. Just worrying about the future. Emma will be 6 in August and I am just concerned about what the future holds for us. Some days I want to move back home to Kansas where my family and a huge chunk of my friends are but there are not a lot of resources to help Emma in the small town I am from. The waiting lists are long. I hate Arizona. Every single bad thing that could happen, happened here in Arizona. My first 2 daughters born extremely ill and premature and dying, my oldest brother being murdered and the criminal never caught, Emma being a victim of abuse, the list can go on and on. However, the major plus to Phoenix? Emma's doctors and therapists. I would be a fool to remove Emma from the quality of care she receives here.

So, Arizona we stay. Hopefully, I will find a new job in August when Emma returns to school and my new semester of school starts. I hope to be able to save up enough money to go home to Kansas for a visit. Who knows? Oh and most importantly, when Emma is walking 100% independently and stable, we have to make a trip to Disneyland!!! She would faint from seeing all of her Disney friends!! She falls over from excitement when people from Make a Wish are at the medical clinic dressed as Mickey Mouse, Minnie and Donald Duck!!

Til next time, take care of yourselves.. with love, peace and a positive future..

Jaime and Emma

PS Enjoy the photos from Disney on Ice