Excuse me, what did you say? Pt. 4

"Is God punishing me, mom? Did I do something bad?"
"I can't do this anymore."
"Am I going to die?"
"I need to go to the hospital."
"Don't cry mom. You do everything for me. You are doing your best mom. "

Oh, how her words can just pierce my heart. My daughter, Natalie, and I have had some of the most amazing, beautiful, gut-wrenching, and powerful conversations as a result of her condition. Even typing this out brings me to tears. It is hard to empower your child, when you feel powerless. It is difficult to speak encouragement into her heart, when you yourself are discouraged. It is tough to calm your child in the midst of a storm, when your own heart is racing (and breaking). It is impossible to try and explain God's ways when we don't really know the plans he has or the reasons behind them. But you do it. You do it all. Calmly. One breath at a time. Because, after all, you are the mom. Then, you go in the bathroom, let it all out, dry your eyes, and move forward. At least, that is what I do.

I am not afraid to cry in front of my kids. I think it is good for them to see their parents working through the emotions of life. But, when your child is struggling, you need to be strong and show them it's going to be okay.  When Natalie had the "mother of all episodes" in July, she was a mess. I had put her in the shower because sometimes it helps. She sat on the floor because she became to weak to stand, and just let all of the water run over her. I sat right there on the outside of the shower. She started to cry and ask me if she was going to die. I knew she wasn't, but the desperation and fear in her voice coupled with the question she asked, just broke me. I told her she wasn't and part way through my response I started to cry. She reached over and said, "Don't cry mom. You do everything for me. You are doing your best mom. You always do." I am pretty sure that made me cry harder because here she was, miserable and scared, and she was breathing life into me. What a gift. I love that kid.

Natalie is starting to speak more about her illness and all that comes with it. She is taking on more of an active role at the doctor's visits. She is just beginning to find her voice in all of this. I asked her if she would like to write a blog entry to share her perspective and take on a more active role in raising awareness.  Here is her entry below. I am so proud of her.

Hi, my name is Natalie and I am 9 ½ years old. I like sports, acting, spelling, and art. I love spending time with my friends. I also love my dogs, Elliot and Otis. Elliot is 5 years old and Otis is 1 year old. Otis is 80 pounds of puppy. My dogs make me laugh all the time. I love my Dad, my Mom, and my brother Kyle, too. They are very special to me.

This week is Mitochondrial Disease Awareness Week and that is important to me because I have that illness.  Mitochondrial Disease is where your mitochondria don’t produce as much energy as other people’s do. This makes it hard for your body to work right.

My problems started on Thanksgiving in 2010. We went to a 5k race and I got sick. I couldn’t stop throwing up. My mom and dad took me to the hospital where I stayed for a lot of days. After that, I started having problems with nausea and being tired all of the time. I had to go to lots of doctors and have lots of blood work. No one could figure out what was wrong. I had to go to the hospital two more times a couple of months later. I missed like 30 days of school and didn’t really get to see my friends very much. I felt sad and really wanted the doctors to figure out what I had. 

In the summer time, my mom was researching on the Internet and found this great doctor, Dr. Boles.  He knew most of the things about mitochondrial disease and he was the first doctor to understand what I was going through. He said I needed to take a “mito cocktail” which has L-carnitine, B-100, COQ10, and multi-vitamins. He also explained a plan for how I needed to eat, rest, and take care of myself. My mom took me to a therapist named Aubrey to help me with my fears about what I had and learn what helps me feel better when I was having nausea or other problems. I was really scared about throwing up in public so she put together a kit with Mentos, sour candies, a bag in case I needed to get sick. I picked out a special purse to put it all in that I carried all the time.  I felt like Aubrey knew everything because she told me how the brain works and tells messages to your body. She also told me that my brain doesn’t like when problems are going on in my body so it comes up with all of these ideas in my head. Then, I get scared about throwing up or other things. She helped me a lot and I still go to her when I need to every once in a while.

I started feeling a lot better and 3^rd grade was a pretty good year. I wasn’t missing much school and got to be with my friends. I wasn’t having nausea episodes, which was great.

At the end of the 3^rd grade, I started having episodes again. They were different because my head started hurting with them. I started having them many times a week. I had to go to the hospital on Friday, the 13^th because my head hurt really bad, I was shaky all over, I couldn’t stop throwing up, and I had shortness of breath.  I really was scared I was going to die.

We went in an ambulance and I had to stay at the hospital for nine days. I have been in the hospital lots of times before, but this was the longest. Dr. Boles said that the migraines and shortness of breath were symptoms of the mitochondrial disease. He said I was having new problems and more problems because my body is changing and working hard.  I had a new doctor I met too named Dr. Asaikar. Dr. Boles and Dr. Asaikar added new medicines to help me. I started taking magnesium, riboflavin, and a prescription. It took like a month to work. I still had episodes in July and had to stay inside mostly.

I also have some other symptoms. My right arm sometimes feels like there is an IV in it. My left arm hurts and feels tingly sometimes. My legs ache a lot. I feel weak all over my body, but sometimes just in my arms. I see spots and lines before I get headaches or when I have headaches. My skin gets mottled which looks all squiggly with purple blotches. I get really tired especially if I don’t go to bed on time. The heat makes my nausea and headache worse. My legs get tingly, too. I really don’t like it when my breathing feels weird. It scares me. My mom messages Dr. Boles sometimes when I am scared about my symptoms to find out why I am having them. I call Dr. Boles “Dr. Bulldozer” because he always bulldozes all my fears with his responses. He gets back to my mom fast.

School started on August 20^th, I have missed 4 days I think. My nausea and headaches were too bad to go. It makes me sad because I like school. I also don’t get to see my friends. When I am school, I stay in for recess and PE because it’s so hot and I have problems if I am out there too long.

I asked my mom last summer if I did something wrong and God was punishing me. I thought that I didn’t deserve this. I still think this sometimes, but not most of the time.  I saw the movie Soul Surfer. It inspired me because Bethany Hamilton was a surfer who got her arm taken off by a shark when she was 13 and I thought it was amazing because she didn’t say why did God do this to me. She said why did God choose me to be a leader for others.  It made me think I wanted to be just like her. She didn’t give up. She was relentless. She let God use her.  I got this verse from her. “I can do everything through Him that gives me strength. - Philippians 4:13”. When I have fears, my mom reminds me to be “Bethany Brave” and I think of this verse.

A really hard part of this for me is not having sleepovers with my friends because I just don’t feel good. I also get scared because I have a lot of new symptoms and every day is different. I don’t know what to expect or what is going to be bad or if I am going to have to go to the hospital.

I feel like people don’t understand what it is really like to have Mitochondrial Disease. People don’t understand how hard it is for me inside to handle all of this. I have a lot of emotions about it.

 A lot of doctors don’t know about it so it takes a long time to figure out that kids have this. We need to inform people about it and do things to teach them. We are trying to do a run in February to raise awareness and maybe even money to help find cures for it. It makes me sad that other kids have this, too. Some are even way worse.

I hope this helps you understand a little more about Mitochondrial Disease. Even though it’s hard, I learn things every day.