Tuesday, April 7, 2015

Absence Just Makes Things Difficult

I realize that I have not written on Eliah's blog in almost a year.  And the reasons for such are varied.  Part of my lack of writing is the fact that there is an ongoing custody battle, and anything I write about my children could be seen in a negative light.  I can't complain about the situation or say what's been happening, because that could be construed as libelous, no matter how true I know the facts to be.

The other big part of why I have not written is that it hurts to be away from my children.  It continues to hurt to think about them all the time and not have opportunity to be with them as much as I want.  I feel like I am missing their childhoods, and they are growing without me or my influence.  I am missing the "firsts" in their life,  their birthday parties, their field trips, their first time at Disney, and even the mundane things like homework.  Unfortunately, I don't even see those photos and it kills me.

My heart is torn that I only get a handful of hours a week with them.  It's NEVER enough.  I am constantly thinking about what I'm missing, and my heart aches.  I visit their schools to see them every week.  I email Natalie.  I beg for more time, because they need me as much as I need them.

For the past year and a half, I feel like I've been treated like a criminal for having cancer.  But even when I was close to death, I've never stopped loving or wanting to be with my children.  And I will never stop trying to get them home.  Some have even called me "relentless".  Damn straight I am.  Why wouldn't I be for my own children?

The good part is, I'm healthy, cancer is gone, and I know this storm will also pass.  One day, I will once again be reunited with Natalie and Eliah.  And that gives me great hope and meaning to continue.  But I will always mourn this time that I am missing.  I deserve to watch them grow and have an influence in the people they become.  And they deserve to have their mother's love and guidance every day.

So, although I have not written here in almost a year, it is not the end.  I believe, in time, good things will happen.

Wednesday, May 28, 2014

Happy 7th Birthday Eliah!

I'm so proud of you Eliah.  You are strong and resilient.  You've had a great school year, and you've done so well dealing with change.  I miss you all the time, and I can't wait to have you home with me.  I love you with all my heart!

Monday, February 24, 2014

Ode to Playskool's Busy Ball-tivity Center Toy

In that wheelchair, there sits a boy
So clever, so smart, so full of joy
Amazing strength, from deep inside
He lifts his head, to smile with pride

The little boy, who cannot walk
The super boy, trying hard to talk
His vision impaired, he can't see as before
He chooses instead, to believe there is more

To explore the world, with hands and sounds
And rolling himself, all over the ground
In the blink of an eye, he's across the floor
To get where he's going, just a little bit more

There awaits a toy, so loud and so bold
It's the last of it's kind, or so I've been told
Who knew when I got it, those many years past,
couldn't live without, it became such a blast

He makes it there, the button he hits
The toy comes to life, throwing him into fits
A smile, a squeal, and laughter it sparks
Wiggling and kicking, right from the start

The toy lasts a week, or two if he's gentle
Playing non-stop, makes everyone mental
It breaks each time, the same way as before
He's lost a best friend, as I search for more

Seven to date, all the purchased intent
To see that smile, so worth what I've spent
Another toy, it arrives in the mail
No more of it's kind, don't let it fail

If it breaks we'll survive, I'm sure he'll be fine
I love making him happy, one toy at a time
And when he grows up, I hope he recalls
The music and laughter, and three spinning balls

One last hurrah, with the favorite of all
The toy my boy loves, that taught him to crawl
One season of life, stored and collected
Made happy his heart, the parts now neglected

I bought this toy for Eliah seven times now. I have a stack of broken ones in his room. It's been two years since they discontinued it, but I occasionally find one on Ebay. And since we postponed Christmas until spring, I was able to find one last one to give as his Christmas present. He will be thrilled to see it again, as the last one broke a year ago.


Monday, November 11, 2013


Eliah has been having small jerks/startles for several months, but never realized they were seizures.  I thought maybe they were his hip joints rubbing together, biting his tongue, or something that I just didn't know.  When I took Eliah to the Neurologist in August, it was just for a check up.  While at the doctor's office, Eliah startled a couple times and the doctor took notice.  He immediately requested an EEG.  

We went back to do the EEG for about 45 minutes, and during that time, Eliah had the "jerks" about every three minutes.  The doctor came in to tell me that those were seizures, and that Eliah was having LOTS of them.  Based on the fact that he was having them every 3-4 minutes all day long, I calculated that he was having 50-200 a day on top of his bi-weekly large seizures.

Last night, Kelley called to tell me that Eliah had a major seizure in the car.  He stopped breathing, and it took 15 minutes before Versed (sedative) started to calm him down.  When they got to the emergency room, Eliah's temperature was 104 and chest x-ray showed that he has pneumonia.  Eliah also spent several hours on an EEG today.  

When I arrived at the hospital this afternoon, Eliah was still getting his EEG.  The Neurologist was called in to see that Eliah's seizures have gotten much worse since August.  He said that his brain is in almost a constant state of seizure while Eliah is sleeping, and there are many while he is awake.  The seizures are stemming from the Occipital lobe of the brain.  He wants to see if that is just because of whatever Eliah's illness is, or if it's all the time, so he wants to repeat the EEG in a few days. 

I personally believe that the increased seizure activity is due to stress of his new schedule with school and the fact that the children have not been able to see me on a regular basis.  

Wednesday, November 6, 2013

Big Boy School

Back in September, I was working with Eliah's Neurologist to control newly found seizures.  Eliah was having little "jerks" throughout the day, and I wasn't sure what they were, so we did an EEG.  Turns out, those jerks were partial seizures.  He was having 50-200 a day, and we were trying in inch up one of his current medications to try and control them.  

When I was diagnosed with cancer, I had to give my ex temporary custody of the children so that I could put all my efforts into staying alive and fighting what's trying to destroy me.  Since then, it's been another big fight to even get time with the children, much less make sure that Eliah's seizures are controlled.  I've seen them only four times in the past six weeks, and only talked on the phone a handful of times (and only by speakerphone on their end), but that will hopefully be resolved soon.  I'm also hoping to find counseling for Natalie, since she told me she is not allowed to talk about me (or express her feelings about my situation) in my ex's home or his parents' home.

With the new custody arrangement, Kelley assured me and the judge that his new wife would quit her job and take care of Eliah full time in their home like I had always done.  Eliah was already set up for homebound schooling, physical therapy, occupational therapy, and speech therapy.  However, before the court order was even signed, they took Eliah to the doctor to change his medication completely, and then requested a special review for school without my knowledge.  

Although I adamantly disagreed with taking Eliah from one hour a day in the home to now almost nine hours a day (a full day of school and an hour bus ride each way), I couldn't do anything but watch.  I did, however, make my opinion known, and I explained my concerns over Eliah's health and safety.  I am still his mother and biggest advocate, you know.  

So, Monday, November 4th, was Eliah's first day of Big Boy School.  There are five students total in the class, all requiring special needs.  I believe Eliah is the only one without a feeding tube.  Eliah will have a nurse with him full time, and he will now get most of his therapies there at school. They even have a Multi-Sensory Environment with swing and ball pit (which makes me happy). 

I talked with Eliah's teacher at length, and gave her suggestions of things that can help Eliah.  She helped calm my fears and explained that Eliah is in good hands and that she will keep me in the loop.  And she was kind enough to send pictures of Eliah on his first couple days of school.  

On his first day of school, Eliah was the "Special Helper of the Day".  The teacher is so pleased with Eliah's ability to interact with the her and other students (He even has a girlfriend already).  She sees how much Eliah comprehends and can communicate through non-verbal actions (this is something that I've been trumpeting to deaf ears for years now).  And she sees how much Eliah wants to participate and learn.  I'm so happy that Eliah has another advocate and that she is so kind.  

So, in saying all of this, I admit that I am happy that, if Eliah cannot be with me during the day, that he is with people that will not only look after his best interests and needs, but listens to me and allows me to be a part of Eliah's plans and activities.  

Here are some pics of Eman enjoying his new school environment...

Eman snuggling with his new teacher 

Floor time

Floor time with toys

Working with new toys

My happy boy

Eman eating lunch, with my voice on the phone in the cup holder. :)

Eman playing and reading a BIG book! 

Tuesday, September 17, 2013

Post from my personal blog


September 16, 2013
Tidal Wave

For the past couple years, I have been travelling in the barrel of a giant wave, trying to keep my balance and sanity.  I've been teetering back and forth, caring for the kids, struggling with my ex, and trying to maintain a personal life of my own.  It hasn't been easy, but I have been patient, and kept my head up, looking for wonderful things towards the horizon.

Today, this emornmous wave has crashed down upon me.  I have just been diagnosed with an agressive form of breast cancer.  It has already spread, and I am still awaiting more testing to determine the extent.  The bottom line is, it was not caught early.  It's an awful feeling to know that something so destructive has been growing inside my body.

I am tumbling, gasping for air, and feel the full force of the shock.  A million questions race through my mind.  Could it have been diagnosed sooner?  How long will I live?  Will the children understand?  How will I have enough energy to fight this when I barely make it through a day as it is?  Am I strong enough?  If I'm not strong enough, will I feel like I've failed my family?

I'm not sad.  I trust that God has a plan.  The only fear I have is of the things I do not know yet.  But I know the answers will come in time.

As my friends, if you don't know what to do or say, maybe I can provide some insight.  It's wonderful to hear that you're there to help.  That's all I want or need.  I don't know the answers to a lot of questions being asked right now.  And I feel like I'm doing a lot of stuff to make other people feel okay about my cancer. "Don't worry, I'll be fine."  Honestly, I really don't know how it's going to turn out.

I don't have energy to talk to the many survivors that people are offering.  It's kind and generous to offer, but it's so stressful to me to try and make time for more people.  I can barely keep up.  I need time to process what is going on.  I need time to wallow, for at least a moment, in what is taking over my body.  I need time to figure out what my plans are, the what ifs, the challenges.  I just need time and support.

If you are going to pray, pray for one thing only, strength.  I do not question God's plan or ask him to change the course of my life.  I trust that he knows what he's doing.  I just ask that I am strong enough to handle what he gives.

This has been a relentless storm.  I have taken a beating over and over, and I wasn't even standing upright yet when I was hit again.   But I will fight as hard as I have to, for as long as I can.  After all, I did say I was Anncredible.