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.

Saturday, August 27, 2016


We had a some good moments with Storm a  few weeks ago, and those moments are always bitter- sweet.   It's honestly been years since we've seen him functioning that well, we had almost a week of just happy moments with the light in his eyes.  It was like he was back with us, but it didn't last very long.  This is the story I've been re-telling the Dr's for years, like a broken record--but we are still far from being heard.  Explaining how my son has periods of functioning for a few days and then switches to an intense drive to decorate, with a need to buy things, he starts talking very fast and has so many ideas that he is overwhelmed by them at times.  This then switches to him becoming extremely irritable, angry, unreachable and sometimes dangerous when he is in a rage.   It's hard to talk about these things, but it's even harder to live through them every day.  It's akin to losing your child over and over again, without knowing  how or if we will ever be able to help him.  This poem expresses what it is like loving a child who has a mental illness, what it's like to live through the storm, over and over.  We are in the midst of it ...


When time slows down and the autumn leaves sway,
               Like the changing of seasons, my heart aches, "please stay."
In your deep gentle eyes, like a tide near the shore,
               I ask you to linger, just a little bit more
Like the breeze brushing past me, a kite ready to soar
              I wish to be with you, the way it was before
For a moment I held you, I saw you were there
             You knew me, you saw me, inside there somewhere
Briefly we laughed, we cried, we embraced
             I desperately wanted to keep you,
To stay in this place
             If I could capture this moment and hold it in time,
I would stay here forever and you would be mine
            The love that I love you with, binds me in chains
While I helplessly watch you, destroy what remains
            My gentle sweet boy, with the sweet humble eyes,
Taken away to a place we can't find
            A place, of forgetting, a place of lies
A place where you hate us, a place we despise
            A place so unreachable, where you can't hear
A place where you're lonely, full of great fear
           I've tried to reach you, I've tried to get in,
Yet love cannot pierce what holds you within
           I claw uselessly, desperately to unlock the door,
That holds you in darkness, until you are no more
           I look in the same eyes, once full of joy
Looking back full of hate, an unrecognizable boy
          My world getting smaller, my heart full of grief
I long for your freedom, for peace and relief
          I feel your deep sorrow, your anger and pain
Flooding your heart like a down-pouring rain
         In the midst of the storm, I can't find you at all
I know that I've lost you, you're deaf to my call
         Yet I hope, beyond hope, as I look for the light
I hold out a candle, I wait out the night
         I pray that I'll find you, when the storm finally clears
I ache to just hold you and keep you near
        Then I see it, I see you, like a flicker of light
And I run to embrace you, and I stand up to fight
         I brush off my injuries, bind up my wounds
Walk into the fire and reach for the moon
         I grasp through the darkness, I run through the deep
I pray without ceasing, my child to keep
        Just when I'm close enough, your light in my view
The darkness and shadows, consume what I knew
        If only time could be stopped in its place
I'd linger with you, caressing your face
        Stolen from me, the months and the years
Washed away is your childhood with each fallen tear
         I sit in the shadows, as autumn leaves sway
If I find you again, I'll beg you to stay