My New 'Normal'

Writing this blog entry has been on my mind for a few weeks. My eyes have been opened to a reality that I didn't want to see for a long time. A few days before we left for California Katie started having some strange weakness and stiffness in her legs. She has always been a little stiff in her hamstrings but stretching and massage has usually loosened her up. She began to stumble and changing her diaper seemed painful. By the third day she wasn't even standing or walking, she would cry for help standing and seemed in a lot if pain. I thought she might be anemic after looking up some of her symptoms. I called her pediatrician and made an appointment for her to be seen. When we went in he checked her and suggested we go to see a neurologist. Unfortunately the only way we could see one on a Friday morning was to take her into the emergency room at Primary Children's hospital. Colt and I arranged for Emma and Carly to go to grandma's and I packed an overnight bag for Katie and I just in case. We arrived in the ER and waited 4 hours before a Dr came in to see her. When we did see a Dr she assessed Katie and went to talk to a Neurosurgeon. When we finally heard back from the Dr she said it may be an infection from her tethered cord surgery but that was unlikely because that surgery was more than 2 years ago. She then said she wanted to rule out Guiamme-barre syndrome. I didn't know what that was but the look on Colt's face scared me. Then I looked it up. All I could do was cry. Guiamme-barre Syndrome can be very serious and could take a very long time to recover from. (click the link for more) Both Colt and my mother in law knew people that had it and it took a very long time for them to recover and some were close to death. I just waited in shock and scared to death that my special girl would be admitted for a life threatening condition and my family would have to go on vacation without us.

Colt had to leave to take care of the dogs and we were just waiting so I held her and thought about all that she has been through. I questioned what I was supposed to do. When you are secluded and waiting for answers your mind wanders and reality creeps into view. Katie was admitted to the neuro-trauma unit for observation overnight. She was tested and we waited for news of an MRI but by morning the team following her care ruled out anything life threatening and we were thankfully discharged to go home. We were advised to watch her carefully for any worsening symptoms and told to follow up with the spina bifida clinic when we returned home from vacation. I can't tell you how long and hard I prayed all night that nothing serious would be found. All the noise and craziness of the hospital makes me nervous and it was tough to sleep but we made it through the night.

I thought about Katie all night long. She amazes me at how far she has come and at the same time I am so sad at the things she may never do. Reality hit me so hard. I have a child with special needs. That is a sentence I have dreaded using for three years. Denial has been my best friend. I guess I just wanted everything to be like it was with Emma. I want everything to be easy and cute and not challenging. When we were trying to figure out what was happening with her while I was pregnant they told us that she may have downs syndrome. Colt was so upset because He didn't want other children to tease her and He didn't want her to have a hard life. Not having any genetic disorders was a relief but then I saw how Katie wasn't developing "normally". Even my sweet Carly has surpassed her big sister in development. Carly is already running and jumping while Katie is still so unsteady on her feet. I try so hard not to compare because I know each child is different in their own way.

 It is quite obvious that Katie has special needs. She has a lot of sensory sensitivity. She has obsessive tendencies where she'll play with the same necklace or set of spare keys because she likes the way they jingle in her hands and that she can manipulate them. She has an obvious fragile gait when she walks and she has certain facial expressions. She has a limited vocabulary but is able to express what she needs, sometimes it comes out in screams but she makes her point. One of the toughest parts of her disability is her anger. When she gets upset or frustrated she still hits her head against a wall or the floor. It is something I have struggled with for a long time on how to deal with it. Most of the time I can distract her and figure out what she needs but there are times when the only thing I can do is put her in her bed, shut the door and turn up the volume on the TV until she falls asleep. For a long time we have been using movies as an escape for us. She loves Mickey Mouse and we have a few videos I play in the spare bedroom. It gives me some peace and lets her be in her own little world. Lately she has become so demanding we have had to ground her from them because she gets too angry and screams. I have such a hard time figuring out what she wants when she gets upset that I need those to be a reward not a daily event. She was so well behaved while we were away from home. She did have a few melt downs but with the help of her necklaces, a squishy ball, keys and lots of veggie straws and cheetos we made it through them. She slept pretty good each night and only woke early once. She ate well and was a delight as long as she got to play occasionally. I am not sure how we'll get through the summer but I am looking for lots of activities for us to do so we can all stay active.

When I took Katie to the spina bifida clinic on Friday we got an official diagnosis for her. Katie does have spina bifida  (click for more info) though it is a mild form. She is unique because she had a tethered cord and no outward signs other than her dimple. The Dr's said that re-growth of a tether is unlikely and she has no degenerative disorders so we don't need to go back unless she shows any new symptoms. Katie is progressing and that's important but I felt that I needed a definite diagnosis because no one could ever tell me what was wrong other than she was developmentally delayed. It may not be important to some as far as needing a reason but knowing that there was a real medical specification for her disabilities even if it is minor was important for me. There are times when I question why things are the way they are. What could I have done while pregnant, what did I do to cause her prematurity? The most difficult of all the questions I have is why did Heavenly Father choose us for this challenge? I have a hard time seeing the lessons through all the pain and sadness that comes. I know there are other families that have much worse going on and I am grateful that things aren't worse but this is hard for me. I have a few friends that have recently lost babies right after birth and my heart breaks for them every time I think about what they are going through. At the same time I see how amazing these women are in their faith and how strong their testimonies are. It makes my pity party seem so insignificant.

I love my Katie. I have since I saw her as a tiny little blip on an ultrasound. I have worried and prayed and thanked my Father in Heaven for her every day. I have struggled with numerous sleepless nights, bruises, tears and heartache. I have praised every tiny achievement and huge obstacle she has overcome. I am so grateful she is with us and I truly can't imagine not having her here. I have learned so much from her and I still have lots to learn. Whatever happens with her disabilities I will do my best to remember her amazing abilities. She is a challenge I never expected but one I will never regret. I have a child with special needs and I love her.