Well now these last few days he has been having more. Maybe ten or so and it is so hard for me. On one hand it scares me to death thinking that maybe they are becoming uncontrollable. On the other hand I want answers again. Why is this happening? I wonder if he is becoming immune to these medications. I called neurology a week ago and still haven't heard back. I just can't understand why they don't return calls when they know I am a concerned mom. I know they are busy, but I can't wait on them forever.
I am such a wreck again, waking up each morning so worried and uneasy. I just have this feeling that this is all affecting him. His development, his little body, his soul. As hard as it is for me to see him in this state, I can't begin to imagine how he must feel. It is draining us all. I want the best for him and when my hands are tied it breaks me heart. My purpose as his mom is to make him happy, care for his every need and protect him from any discomfort. Not being able to do that is the hardest thing right now.
All I can do is hope it will just be a matter of time before his body reacts to the Keppra and they will be gone. After all I am so glad he is only having ten seizures on a bad day, it used to be close to twenty or thirty. That is still progress and I will take it. Funny how I have learned to take what I can get.
Last night we went to dinner for my dad's birthday, and to Greg's old neighbors graduation party. It was a great night and good for us to get out and have some fun. But I still found myself having such a hard time enjoying myself, with so many more "important" things to worry about. I just want this to not affect my life in a negative way. It is God's plan and I trust him with all that we have been through, but I don't want to sacrifice my life for it. I know one day Truitt will be okay, the seizures will be gone, but its the waiting and wishing and hoping that breaks me.
Truitt at the grad party, he was worn out.
Lauren
3 comments:
Another mountin to climb...another bump in the road! We need to trust and believe that things will be better soon. Truitt is so happy. As a Mother it is heart breaking when one of our children might be hurting. With all the love and support around you that helps. As I have learned over the years, no matter what, we are alone with our thoughts and concerns. Feelings are real and sometime are hard to deal with. Accept those and believe that you will get through this too. Everyone hates not knowing answers but they will come....So proud of you and Grey and the strength and weakness they you show...thats what parents do! Truitt is so lucky and you can see it in his beautiful smile.
I heard the song "The Climb" for the first time on the radio yesterday. All I could do was think about Truitt while the song played! That song will now always be connected to Truitt in my eyes.
You know he's got a strong fighting spirit which is a trait he got from both his parents.
You are not being annoying by calling your doctor and asking questions. You are certainly paying them good money for their services - that is their job. A week is unacceptable. Maybe the message got lost or something. The squeaky wheel gets the oil :)
- Love,
Julie
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