Tuesday, January 10, 2017

A Typical Day

Today I woke up to a quiet house, it was a little nerve wracking.  My son walked into my room, actual walked and didn't run.  He came to my bed and said "good morning Mommy, can we cuddle?"  He didn't hit me or scream.  He watched some cartoons while I made breakfast and then he ate his breakfast, and he ate some more, and he didn't start screaming and crying or say that it was too soggy or made him gag.  He played with his brother.   I heard them laughing, there wasn't any fighting or hitting or crying.  Later, I went upstairs,  it was too quiet, I was worried that something was wrong.  Storm and his brother were "making a movie" together.  Later that day I heard Storm, it was his normal voice, he was having a conversation with his sister, "Yes, I'd love to color with you."  And he sat down and they drew pictures together and walked around hand in hand--these two are so close when he is doing well.  There was no screeching or screaming, or repeating words over and over.  Later today all the kids were out side jumping on the trampoline, their laughter rang in the air.  It was the laughter of children, playing outside in the warm sun and just being free to have fun and enjoy each other.  Storm wasn't trying to control who jumped and when, or anxious about having everything just so--he was free to be a brother and to be a kid and have simple, typical fun.  This is how it should be every day, this should be a typical day, but this has become the rarest of days in our home.    This was day was like a gift, much like a sunny 60 degree day in the beginning of January;  It was a sweet surprise and really unexpected.  My son hugged me over and over today, he kept telling me every few minutes "Mommy, I love you so much."  "Mommy, I love you with all my heart."  "Mommy you are the best Mommy."  I close my eyes tonight, wondering if he was trying to say as much as he could, while he was with me, in case tomorrow I wake up to someone else.  I cherished every part of this day, I drank it in, I soaked in the sun.  I felt happy for the first time, in a very long time.  I felt hopeful, I know my son is here, I pray so hard that he will stay, that we are on to something--that he could be healed so we can always have these days or at least more of them.  How I miss this boy so much.  It was so hard to say goodnight, I hugged him so many times today and also told him how much I loved him.  I told him, do you remember how hard it's been these past few weeks?  He lowered his head and turned his eyes from me "Yes, Mommy."  "You know it's not your fault right?  You know that strep throat is making you sick inside right?  We are giving you medicine now to get rid of it, it's going to help you.  You know I love you and I'm not upset and it wasn't your fault."   "Yes Mommy. I love you."  I don't want this day to end.  This is the best day we've had in 4 months.  It was healing for us all.  I'm excited, but scared, have we finally found a way to help him?  With all my heart I hope so.  

We recently found out that our son has PANDAS, after four years of misdiagnosis we are finally treating him correctly.  I will continue to update my site with all that I am learning so that we can help others who are fighting for their children's lives.

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