Mom....I feel Good!!

1 year ago I remember sitting in church with a very heavy heart. I knew that something was very wrong with Kourtney and I knew I needed to take her to the hospital. Our experience at Children's Hospital turned into the most traumatic experience of our lives as we watched an infection ravage her body and cause pain beyond anything we could ever imagine.We watched our daugter change from a care free dancing queen to a quiet, bitter child that would could not move without a lot of pain. Enough said.

Kourtney's skin has settle down dramatically so this summer our goal was to get Kourtney walking straight and walking more. We came up with plan to get her moving everyday. She had to walk or go swimming, that was the deal. The plan seemed like a good idea, but Kourtney viewed this as torture and decided to not just cry, but wail every time we (Mona, Lorraine, Todd, Brittany, Lexi, Shaelyn, Grandma/pa and myself) would suggest a walk or to go swimming. Any available energy that she had was used up in her protest.

As the summer progressed there was less exercising going on. Walking outside was difficult due to the heat wave and trying to get Kourtney to swim became a battle . No matter what was suggested, Kourtney had already decided that she couldn't do it and came up with every excuse not to. The protests were loud as she attempted to make everyone around her feel sorry for her, how could we make this poor child move. We all knew that the longer you stay in a position the more "stiff" your body becomes and her little body was becoming more stooped. Add this to the sedentary lifestyle further added to her predisposition for depression.


This habitual charade that she performed was exhausting and unrlenting. I was beside myself and I knew that we were at a crossroads with her. If I didn't push her she would lose her ability to walk and if I did make her walk she would throw temper tantrums and make me feel guilty for making her do it. After our trip to Children's and finding out her hemoglobin was so low, I had a guilty moment and thought I was pushing her to hard but I wasn't going to let my guilt stop my child from walking. There was no way really for me to know if she was in pain or if she was just being stubborn, my mom's intuition knew it was more Kourtney just being terribley stubborn. Daughter like mother I knew my stubborness had met it's genetic match!!

When Dr. Courtemanche came out I asked him for advice. He told me that I should push her. He said that we need to learn to hate the disease and fight it every day and not let Kourtney give in to it. With that advice I was bound and determined that Kourtney would start walking even if it was baby steps. I started making "little" changes in the way things were done around the house, sitting on a exercise ball when wathcing TV, not putting her feet up when in her recliner chair, I even stopped one of her pain meds to see if that would help with her energy levels.Kourtney continued the protest but we all perservered. One night there was a lot of yelling, screaming, and many tears between the two of us. I finally asked Kourtney, Do you want to walk? She said yes . . . and I told her I would have to continue on pushing her.

After that talk Kourtney seemed to "perk up". She was phoning friends and making plans to do things. We also went to the pshyciatrist at Children's, and came up with a plan for spending quality time together. The pshychiatrist was insightful, pratical and was able to direct us in this transitional period. Kourtney's antidepressant was also increased. I was skeptical that this plan was going to work especially when her hemoglobin was so low and continued to gear up for the battle.

Last Sunday Kourtney woke up and told me "mom I feel good today". Her eyes looked different, she was happy, she was moving around better and attempting to do activities. This week the old Kourtney is back, she is intereacting with people, giggling with the puppy and not crying every morning when she wakes up.The change? I don't know. It is very possible it is the combination of everything, but whatever it is we are loving having our old Kourtney back. It has been one full year and we can honestly say....she is back. We are encouraged that the baby steps that she is taking are helping and we continue to endure as a family.We are optimistic that Kourtney does have it in her to continue fighting this disease. She is a trooper and we are extremely happy to have our child back.