Today was just a day full of emotions. I can truly say today I felt like I was on a roller coaster, a roller coaster of emotions. I woke up exhausted but was in a good mood. Made the kids strawberry banana smoothies and blueberry muffins for breakfast. Yum! Carter said he was feeling pretty good and everyone seemed to be in a great mood. Then 8 o'clock rolls around and the phone starts ringing and reality hits. Doctor's calling, hospitals calling and it just keeps on coming. After the first call about scheduling his EMG I was mad, mad because it is taking so long to get all this done, mad that no one else seems to feel the urgency I do. I guess just mad that I simply cannot do anything. I have no control and for a control freak that is hard to deal with. Yes, Sean, I did admit to being a control freak.
I wish we could just get all the tests done at once, in one place and not have to wait. The waiting is the hardest part. I know there are other patients but don't they understand this is Carter, this is MY SON, and I want answers! I need to know what type of CMT he has and how bad it is and how bad do they anticipate it getting? Should I be letting him run everyday? Their answer "If Carter feels like he can do it and isn't in pain let him." Huh?
1. The kid doesn't feel pain at least not like a normal person.
2. He is a fifteen yr old and thinks he is invincible.
3. He doesn't like to be a quitter.
Ugh! Just wish there was a way to have a direct line to one doctor who would be able to answer all my questions. Instead, I have too many doctors for different reasons and everyone decided to take a vaca over the fourth of July week! Don't they realize they have a crazy mom who can't sleep because she spends all her free time, whatever that is, searching for info on CMT. Oh and my other free time searching for right supra clavicle lymph node. Oh and what does a high level of immature white cell count mean? Seriously, I am not a Dr. nor do I play one on t.v.! I stole that line from Sean. I guess I will find out all this on Monday, when we go to the Oncologist.
By the afternoon my mood changed from anger to fear and sadness. Fear of what the future holds, fear that my son may never drive, fear that he won't be able to care for himself, fear that he won't be able to feel the sand beneath his toes soon. Sadness, sadness because I wish I would have done more with him. Sad because I kept saying there is always tomorrow and now I don't know that for sure. Sad because there are so many things I wanted to do with him and his brothers and now I feel like time is running out. Just utter sadness and sadness so deep it just consumes me. Is this grief I am going through? Can you grieve over what could happen to you child and all the things he or she may loose out on? Is this possible?
I guess being told your child has a disease in a way is a test. A test of what you are really made of. Are you a strong person? Can you hold it together when all you want to do is loose it? Can you take the lemon and make outstanding lemonade? I guess only time will tell. For right now, the anger is pushing me to be the strong person, to hold it together and only let go when I am up late at night or in the shower. For now, I must be strong for Carter, Sean, Zach, Ayden and Regan. So, for now the roller coaster continues.....
May God Bless you all! Much Love Michelle
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