After decompression surgery for ACM

As I wrote in my previous blog that both of my children had the decompression surgery for ACM, I also wanted to write that they both recovered without any long term effects.

While the surgery was not easy to endure from their prospective or mine, I am happy to report that both children fully recovered and began their new life without pain.  As a parent, I can't describe how I felt to watch both children transform from being in severe pain and bedridden most of the day due to the pain, to running, playing and being "normal" children again!  While they still have an occasional headache, the only tell-tale sign of their condition is the six inch scar down the back of their head, but their hair hides that.

Chiari One Malformation does not go away, but the pain and symptoms are alleviated with surgery.  There will always be a chance that they may have to have the surgery again, if the cerebellar tonsils grow back but for now, eight to ten years later, both children are doing great and leading normal, productive lives!  I might also add that both also graduated at the top of their classes and are currently enrolled in or have attended college.

For more information about Arnold Chiari Malformation, please go to: http://www.chg.duke.edu/diseases/chiari.html

Duke University has been researching ACM for many years and have a special interest in families that have two or more children with ACM.

Arnold Chiari Malformation

I guess it's time to continue this blog as there is so much to write about but not enough time or energy. 
I have two children (actually they are adults now) that were diagnosed with Arnold Chiari Malformation or Chiari One Malformation.

There are several forms of ACM, but both of my children have Chiari One Malformation.  Since this is a rare condition, I had to do alot of research to figure out what was wrong with my children that caused their symptoms and pain.

My son had severe headaches that kept him bedridden at times and his legs went out from under him. It took nearly one and a half years to get him diagnosed by a specialist.  I fought more "specialists" that tried to convince me that he had migraines, than I care to count.  I have to admit I really showed my ugly side to doctors that thought they knew what they were talking about, but I would do it again as any mother would.  As a matter of fact, his pediatrician received a nasty letter from me after she told me that I needed to calm down or I would be labeled a "hysterical mom"!  Trust me, she SAW the "hysterical mom" part of me.

Once I found a caring pediatrician, my son was diagnosed and had the required surgery to correct the problem...at least for the time being.  After his surgery, he was like a new child.  He ran and played and laughed again.  By the time he was diagnosed, he had lost the majority of his upper body strength and this was at the age of eight years old.

His brain surgery took it's toll on me.  Having lost one son, I was terrified I would lose my only other son.  However, he came through it like a trooper and was back in school within ten days.  I believe his most painful part of the whole ordeal was missing out on recess at school for six weeks!

When my daughter was diagnosed, she had headaches but also became dyslexic.  The neurosurgeon had never heard of that happening with Chiari before, so he was a bit baffled.  However, her surgery was schedule but she had more problems than my son.  She was in intensive care for nearly a week, due to the fact the doctors could not get her pain under control.  Then a doctor in the pediatric ward ordered her to have physical therapy, which her neurosurgeon was furious when he found out, as that set her recovery back. Luckily, her dyslexia disappeared after her corrective surgery.

My advice to parents and adults is, if you or your child is having severe headaches along with unexplainable symptoms, PLEASE have your physician order an MRI to rule out Arnold Chiari (KEE ARE EEE) Malformation.  I have found that there are still alot of medical professionals that have never heard of this condition, so research can help you.  Be informed.  Do NOT let anyone convince you that you or your child is having migraines, if you don't truly believe it.  My children each had severe headaches at the base of their skull/neck.  That is because the fluid pressure built up and that is where the pain was.  I told one pediatric neurosurgeon that I, as a layperson KNEW that migraine pain was NOT at the base of the skull.

It was a long, hard ride but I succeeded in finding the right pediatrician that actually knew there was something terribly wrong with my son.  Luckily, he saved my son's life.

Happy Mother's Day!

Happy Mother's Day to all the women (and some men) that have loved, raised, guided, and/or supported your own child, or someone else's child.  Being a mother is one of the most important and rewarding jobs to have!  Enjoy it and cherish the early years!

Another Excerpt from Greed at the Expen$e of a Child

Mr. Barber advised us that because I did not have any children, it might be difficult for the court to allow a visitation for that length of time. I couldn’t believe my ears! Tyler was the biological father of these girls and how in the world could it not be possible for him to take them on vacation because I did not have any biological children. After all, I was a mother figure to these girls on the weekend visits and there had never been a problem. Mr. Barber said he wanted to prepare us for the worst scenario.

Thankfully, our hearing went quite smoothly. The judge felt Tyler was entitled to more visitation than just weekends. He awarded Tyler three weeks visitation over the summer each year until the girls started school, then he was allowed four weeks per year. He never questioned my ability as a mother figure.

Over the next few years, we had several court hearings regarding visitation of the girls. Whenever Vera decided the girls should not come over, she would refuse visitation every weekend for months. We had to contact our attorney to set up a hearing each time to get visitation enforced. At the final visitation hearing, the judge warned Vera that if Tyler had to bring her back to court to enforce visitation one more time, she would be going to jail. She never had a good excuse as to why she refused visitation, she just refused to answer the door and allow the girls to come over. Her anger toward Tyler or I was quite obvious. We just didn’t know why.

Excerpts from Greed at the Expen$e of a Child Ebook

"I am sure that you have had a time like this in your life. When you are faced with a decision that you know should be easy, it feels right… but something held you back. This was that moment for me. I had to wrap my head around what it meant to be involved with a man that had an ex-wife and two small children. Based on what I knew about Tyler’s and Vera’s marriage and divorce I knew that I was not going to be dealing with the most rational or civil person in the world… and what about the children. I loved kids, what I was concerned with was would they like me. Would they think I was going to try to be their mother? Would they hate me because I wasn’t their mother? Divorce was a new concept for me. No one in my family was divorced. I just didn’t know how to deal with it."

Another excerpt -

"As I was in the delivery room, I was terrified. I didn’t know what to expect. They would not let Tyler in with me. The Neonatal specialist explained that he wouldn’t know if the baby would survive until he saw him. They made me physically deliver the baby rather than taking him by c-section. As soon as he was delivered, I got a quick glimpse of him and the nurse ran out of the room with him. I was taken to a private room, where Tyler was able to be with me. The specialist came in shortly afterward and explained that it did not look good for our son. He explained that he was too premature and his skin bruised each time they touched him. I began crying hysterically. God couldn’t take my child from me. I knew our son was strong like us…he would survive."

How it all began...

"I said, Tyler and Vera were only married for four years. The events that led up to their divorce are a combination of distance and infidelity. Tyler worked for a well known company, and there were certain times during the year that Tyler was required to travel for six and seven days a week. He also had to put in long hours. This can be difficult on any couple, especially a newly married couple or a couple that has two small children. Vera was also young, and honestly was not ready to be married or mature enough to be a mother.


Rumors started flying around that Vera was out with other men when Tyler was on the road. The other men that Tyler worked with had seen her out intimately close with another man. They were not only coworkers but they were friends and felt that it was time Tyler knew what was going on. So they told him. He didn’t want to believe it. But the rumors didn’t go away, so Tyler wanted to find out for himself whether or not his wife was faithful.

One evening he asked his supervisor if he could leave early as he had a personal matter to take care of. He parked his car a couple blocks away, and walked home. Vera or the children were not home. He sat in the dark for nearly four hours before Vera arrived. When the door opened, Vera and Paul (their neighbor) walked in with Julia and Mandy. It was at that moment that Tyler confronted Vera and Paul. Needless to say, he was heartbroken at the fact that Vera would have an affair with their neighbor and friend. Tyler kicked Vera out of his house and filed for divorce."

Prologue to Greed at the Expen$e of a Child

Prologue



There are many times in life when we stand and question what we have done. We wonder if we had the chance to do it all over again, would we? I can tell you that when it comes to my journey with my husband and the children the answer is yes, I would. While I wish there was a way to go back and make things better for the children, I know that I would go back and take on this battle again, in hopes that I would be able to save them just one more day of pain and suffering.


What I am about to tell you is a love story, a true love story. This is our story, that of myself, my husband and all of our children. I have changed the names of all those involved to protect them and I have only given rough dates to provide a timeline, for you to see how long this has gone on.


I am sure you are wondering why I took the time to tell this story, to relive all the pain. The reason is quite simple. If by telling this story I can save one child from having to go through any of these events then my purpose has been fulfilled. See I can’t go back and make it easier for the girls. I don’t have a magic wand to wave to take away their pain, or erase the memories. All I can do is try to prevent other children from being used, abused and neglected.


If you are going through a divorce, or are close to someone that is going through a divorce and they have children I implore you to have them read this book. Children are not tools to be used, they are unwilling participants in what is happening to them. It is the job of the parent to protect them and make sure they are taken care of. Unfortunately when parents are going through a divorce they tend to forget the children and what is in their best interest.


In this story of true love you are going to see what happens when children are forgotten and used as pawns.

Children are "little people"

Each time I read about step-families and divorced couples with children, my heart bleeds for the children.  Having "been there, done that" I have flashbacks of my experiences in fighting for custody of my step-children.

I can't help but wonder and worry about what children are going through today versus many years ago when we fought our battle.  Have times changed much?  I read about co-parenting and shared custody now.  I know for a fact that would NOT have worked with us.  It takes two people to make a relationship work, whether it's ex-spouses or current spouses.  If both parents do not have the best interests of the children at heart, it won't work and the children suffer.  You may not actually see how deeply the child is suffering until many years down the road.

My husband's ex used their children as pawns.  The only reason she wanted them around was for the child support.  When she was ready to party, they came to our house, which of course we didn't mind, but the toll it took on the children is what was the most painful.

My husband's ex also deeply resented our marriage.  We have been married now nearly 30 years.  She on the other hand, has been married four times...so far.  I assume she will find another husband before too much longer.  I feel for the children, which are now adults, that have had three step-fathers, not to mention the various number of "boyfriends" that have been in and out of their lives.  I don't understand why someone would put their own happiness over that of their children.  But then there are alot of things I just don't understand.  Maybe I'm just getting old...

It's Spring!

I think it's finally spring!  Although the temperature doesn't really show us, other things do.  While mowing the lawn for the first time today, I found the first sign.  Although I wasn't welcome nearby from the parent, it was still nice to see.