Changes & Blessings, part 4

And I did, I listened most of the night, I woke several times and I slept very little. She made it through without a glitch. I thanked God and our doctors as she walked out of her room the next morning. The "emergency medication" has worked well. We give her a form of valium before she goes to sleep on nights that her seizure threshold is being espially challenged. We now know some of the signs of her being in danger and the valium prevents the seizures when Teale is most venerable. We joke that the other person who needs a valium on these scary nights is me. But of course I need to stay alert and on my game, so I will not even have a glass of wine to settle my nerves on such nights. Mark doesn't or at least never has awoken when Teale is in a seizure in the middle of the night. It has always been my Mother instinct that has suddenly been startled awake to hear the awful sounds. That is one of the many things that I think about when I have been away from home overnight. I always ask Mark to keep the monitor close & to turn the volume up. I have been away from home alone very few times, but the needed breaks are often a catch 22, as the stress of being away is there too. I worry much too much. The day after the seizure was Saturday and all went relatively well. Teale was a bit grumpy and moody, as is often the case the day after a night we have given the valium. She seems unsettled, tired but won't rest. We get through the day and night falls again. I am anxious to get to bed, fatigue from worry and lack of sleep is hitting me hard as the evening comes. We decide to give the valium again as the medication levels have not had enough time to increase. We know this means the next day Teale again will be crabby, moody, tired, but we also know a seizure can be life threatening for a child like Teale. I sleep a bit better, mostly out of exhaustion, my body does what it needs. The monitor still a bit louder than usual, but I am less worried about another seizure coming. Teale wakes early on Sunday, anxious to get out of the house, Mark and she often hit the local grocery store on the weekends together. Mark likes grocery shopping and for the most part so does Teale. He is not gone long when I get a disturbing text "She fell over on someone. We are now upstairs sitting and having breakfast." I call Mark for details and my heart sinks as he describes Teale's strange unsteady behavior. The description sounds neurological to me and I decide to call her pediatricians office. While I gather information and talk to the doctors another text comes in from Mark. Teale has vomited at the store, another neurological sign. Mark now believes Teale is in small multiply seizures and we are quickly directed to get to the emergency room at the hospital. I begin to work out what to do with my daughter Gwenn who is just nine years old. My Mother in law also lives with us and needs care too. A whole day away would mean she would not eat or drink anything on her own. Her ability to take care of herself has declined badly, so I get in touch with Mark's brother asking for help. I need to get to the hospital also. Mark should not have to be alone, ER with Teale is a tough place to be. Teale has vomited on her clothes, she has nothing to keep her occupied while they wait and her behavior in such situations can be extremely challenging. I have already asked for prayers on my Facebook page and friends offer to take Gwenn. Beau is out but I reach him saying I may need help. My kids and I have a deal, no matter where they are, if Teale is in trouble, they want to know. One time Teale had a seizure at church, we had to call an ambulance and Beau was in Sunday school at the time. He just knew in his heart the ambulance was for Teale and he was upset that Mark and I had not pulled him from Sunday school to let him know. So as I spoke calmly to Beau, hoping this was nothing, I knew his fear was probably high also. Uncertainty, it is our life, but in these times it is heightened. Soon after Mark gets to emergency, Teale vomits again, this time all over her treasured American Girl Doll catalogue. She goes into a rage, it is covered with vomit and Mark has to throw out the catalogue. The rage itself is not her normal kind of rage, causing Mark more alarm. Mark asks me to try and locate another catalogue, so  I throw the request on my Facebook page, knowing my dear friends will find me one if at all humanly possible. If there is one thing I have learned through the use of social media is how much people care about my family. It is an amazing thing and it reaches far and wide. I am often overwhelmed by the support and love we receive, both publicly and privately. I have had many relationships forged because I am so open and honest about our struggles. People may not be as willing or as able to share their challenges, but they have told me that they appreciate my sharing our life. It is not always pretty, there are things I have shared that others may find appalling. But it is almost like my calling in this life with Teale. I feel like her life, our lives with her, teach much. It was not very many years ago that you would not have seen a kid like Teale in the community. You would not have know the families pains, joys and challenges raising a child with multiple issues. So sharing our journey both in this blog and on Facebook has been somewhat therapeutic for me. It connects me to people like me and it teaches people who otherwise would not understand. The offers come in on my Facebook page and privately texted to my cell also, many are trying to find me an American Girl catalogue to take to Teale at the hospital. Moments like these that may not mean all that much in an everyday life, but I see the amazing love of those who want to help my daughter. ~to be continued