Krista's Courage

by Krista McFall from Texas 

 I am the Mother of Gabrielle "Gabby" Yambo. Gabby had her right hemispherectomy on Jan 8, 2008. My name is Krista and my husband's name is Rick. Many of you are facing or will soon be facing the unknown, stressful, and emotionally trying time of your child having seizures and the complete emotional and physical devastation of your child having the hemispherectomy surgery. The toll affects not just the child, but the entire family.

 I am here to discuss how it almost destroyed my family and how we are learning to become strong and overcome the grief and stress we all face daily. Gabby had a major seizure in Feb 2006 which absolutely devastated our entire lives immediately. We had no clue of her brain abnormalities at all, which is HME, Neuronal Migrational disorder (with several others that fall into this category), and mental retardation. We woke up and found her seizing and found out later that she suffered a stroke from the several hour seizure which landed her in the ICU in septic shock on a ventilator, fighting for her life. Honestly I was instantly a nervous wreck, I have had several traumatic incidents go on through my life and this was another and my coping mechanism was to eat. Stress takes its toll on people in many ways.  Some people do not eat, some people run away from their feelings only to have them come up later in life and others eat. That was me and my husband. It is what I had always turned to in times of stress. I was overweight when Gabby became ill, but not like what I was going to experience over the next few years as I ate and ate and ate all of my emotions. I was a wreck watching my only child start to have seizures to the point she was having over 100 a day. Also while trying to keep our finances and all my relationships intact including the one to my husband. As you know, a child getting sick can really make or break a marriage on top of everything else. I lost the ability to work due to her health and that was enough to cause a financial mess, not including all the while trying to get services for her and navigate the health care system in order to find out what was really going on with Gabby.

What I want to teach others is when going through such an emotional time it is very important to still take care of yourself, something I never really knew how to do since my weight was spiraling out of control and I did not care about myself because I was just trying to care for my child. It is a fine line to find balance in a situation like this and it is a daily struggle I still deal with because I am addicted to food and any time you have any addictions, a traumatic event will compound those issues and bring those demons to the forefront. The key is to learn how to manage your emotional stress while caring for your family and hemi child (or any child with any illness).

I reached a whopping 470 pounds a year and a half ago and I was finally at the point I could no longer stand the way I felt. I was peripatetic, hypothyroid, high blood pressure, and I was 34 yrs old. Way too young to have any of these issues much less weigh close to 500 pounds. I was killing myself with food, a slow suicide, but I was so sad and helpless. I started to try and find a solution to get myself, my husband, and my entire family to regain our health. We needed to be here for Gabby and live for her because she will always need us and we want to provide her with the best life possible and we could not do that if we were sick or much less not here.

I started reaching out for help and looking into better ways to deal with our stress and emotions and I was pretty desperate that we contacted a TV show for help. I knew we needed a big change and well after trying out and interviewing and going through a long process to get chosen. We were chosen by Extreme Makeover: Weight Loss edition and that's how I met Chris Powell - the angel I needed to get my life back. I worked with him for a year and lost 180 pounds and now I am down 203. Yes, I still have a ways to go to reach my goal weight but its all about the fight. The fight to stay healthy is what keeps us in check mentally and physically.

I want all the families who are facing a tough road to really start from the beginning or right were you are and just change the way you deal with your stress during this time. I wish I did not wait, but its my lesson learned that I hope inspires others to change today. I would suggest to carve out time for some exercise even if it is a 20 minute walk a day, it will clear your head of the emotions you are facing and help give you some of that time or take a family stroll, however it fits into your schedule it will help. Checking your nutrition is a must.  I know it's hard when we are tired and exhausted to just choose what is easy, but you can eat easy that is still healthy.

Gabby recently in the last 7 months started having seizures again after almost 3 years seizure free. She is currently back on medication. This was unfortunately very frustrating and scary for us. At first, it totally derailed my goals of weight loss and I gained 25 pounds back initially because I fell back into old habits. Yes, I was still working out, but I was eating horribly. After the first few months of her seizures starting, I felt so defeated and the thought of her neurologist telling us that she will have to undergo a redo hemisurgery once she fails this medicine is extremely disheartening. I was told not if, but when!!! Those words you do not want to hear. I realized I had to change my thinking and quit trying to control everything because I cannot control what is going on with her and I had to put myself in a place of thinking, "I know Gabby is being taken care of to the best of our abilities, we have always done anything for her and always will fight for her and until we have to be back at the hospital doing her surgery".  I will deal with it then instead of letting my anxiety control my emotions by what is not happened yet. This is something I literally have to tell myself daily, but it has helped me a lot. I cannot change the future or change the outcome, but I can change the way I think about it and how I let it affect me. That is the new me and I am now in a much better place.

I give praise to those families who have been able to change and those who were already doing this during all of this. It was a huge wakeup call for us and this goes for not just eating, but drinking and emotional issues too. Please reach out for help if you need it during this time or for that matter any time because you are not alone and we all need help to navigate our lives when our lives are rocked by hard times. Reach for counseling, ask for help, whatever it is just try not to keep your emotions bottled up because we are all here in the same boat dealing with a lot of the same issues.  Yes, some harder than others, but the emotions are the same when it comes to your child's health and having to be strong. We are all stronger than we think, so take that strength and make it a point to keep yourself happy and healthy even when there is not a lot to smile about all the time.  This is something that I have really learned to do, because as you all know it could be worse and that keeps me going and fighting for a healthy me!!!

Click here to view Krista's episode on Extreme Makeover:  Weight Loss Edition. 

Click here to view Krista's FaceBook Fan Page. 

I am here to help.  I have free nutritional programming, meal plans, and healthy eating recipes for my hemifamilies if they are wanting some advice.  I am certified in sports nutrition and certified in personal training too!!!  For more details or questions, you can contact me at:  kristamcfall75@gmail.com.  

The Hemispherectomy Foundation is pleased to introduce the newly added  Infantile Spasms resource page! This is a great addition to The Hemi Foundation's website, and its purpose is to share more information about this condition that so many hemi kids and their families have experienced. Visit

 http://hemifoundation.intuitwebsites.com/infantilespasms.html 

now to see the page!

So what exactly are infantile spasms? It is a catastrophic form of epilepsy that affects young children typically before one year of age, but sometimes older. Infantile spasms are very distinct with certain characteristics that help identify and diagnose them. Infantile spasms can be very difficult to control and their effect on young children is very serious. Finding the underlying condition of why these spasms happen is very important to stop them, and in some cases, results in hemispherectomy. 

Our goal with the addition of the Infantile Spasms resource page is to help others wanting to learn more or who may be faced with surgery

decisions after experiencing infantile spasms. It is here where others

can come to learn more about infantile spasms, what they look like,what underlying conditions are known to cause them, and what treatment options might be available. Connect with other infantile spasms families through the Hemi Yahoo! Support Group through a link on the page or contact a Parent Representative directly at David@hemifoundation.org .

Also, please visit the Hemi Foundation's Medical Advisory Board to find a specialist with experience in infantile spasms and hemispherectomy. Have questions? Want to learn more about about infantile spasms? Let us help you find more answers! Visit the infantile spasms research database at the bottom of the page for great links and citations to articles and studies.