Coming out of the dark

It has been awhile since I have posted as many of you have probably noticed.  You know we all have our storms and difficult seasons and this one has been especially hard on me.  After returning from Mayo, I felt empowered!  Only to return to the monotony that has been my life for the past months.  I have struggled with my purpose.  Each day I sit and watch others live out their lives only to have mine stand still.  I am confined to this house and my dependency on others has been overwhelmingly depressing. 

I know that I have a purpose, my father in heaven has given it to me in black in white.  However, sometimes (just being completely transparent) I feel as though I don't.  I am not the wife, mother or person I want to be.  I know, I know every one's situation is different and you shouldn't compare yourself to anyone else.  Everything happens for a reason.  I do believe this.  I do believe that God has a purpose for each and every one of us.  But I think that anyone would be lying if they said that they have never doubted it. 

Lately, I have felt alone and consumed by darkness.  I feel as if no one knows what I am going through and I try to explain it and all I get is "you know that's not true."  It's true to me.  Dysautonomia is the devil in sheep's clothing.  It has stolen so much of my life, happiness and identity.  I know that this is probably not a very positive read but I think it is therapeutic for me to get it out. 

These last few weeks I have fought with doctors to get the care I deserve when they don't want to listen.  My body has been attacked by sickness that has worsened my Dysautonomia and I have had my life dangled before me then taken away again.  A little over a week ago, I thought I was on the road to a better life.  I was able to take care of my son one entire day while my husband was at work and I was able for the first time in MONTHS to get out with my girlfriend and go to lunch and a movie without my wheelchair!  It was liberating!  I saw freedom and I was energized.  I began doing the exercises that the doctor wanted me to do, I was pushing myself to build strength only to have it quickly taken away again.  Since then, I've been back where I started.  I haven't left the house and I reluctantly sat in that chair I loath to be wheeled from the car last night. 

I know that I serve an awesome God.  I know that with him all things are possible but the truth is lately I feel more like a burden than a person.  I take so much more from my family than I give and although they reassure me I am not...it doesn't make the feeling go away.  People are quick to say give it to God, cast those thoughts from your mind you know they are not true...but they don't live the life I do.  It is a lot easier said than done.  I try!  I read my Bible, I talk to God but the mind can be an evil thing.  If I don't think it I dream it and when I try to talk to people they just want to fix me.  I can't even explain it to my best friend, my soul mate...my husband there aren't words.  I feel like a broken record telling him how I feel over and over and the darkness just takes over me. 

It's silly you see, today I had a moment of purpose.  The first one I've had in awhile.  I know that Collin is my son and that no one can ever take that away from me but I am not the mom that I think he deserves.  I want to give him more than I can.  He's been sick too.  I've always been the one to take care of him when he is sick and I haven't been able to the way I normally would. But today, I had a feeling something told me even though he was on antibiotics that he needed to go to the doctor.  He hasn't been eating and he's just not himself.  I was too sick to make the car ride to the doctor so my husband took him alone.  It broke my heart to not go but I tried not to show it.  After the appointment, my husband called me and said "You're the Mama."  Turns out his ear infection was raging in his left ear so much so that, his tubes we had put in, where blocked.  He had to be put on a stronger antibiotic and needed antibiotic ear drops as well.  For a moment, I felt proud of my self that no one else picked up on it but I knew there was something wrong with my baby. 

My husband often catches me pulling away from him and Collin and gets upset with me.  He encourages me to give my all whenever I can and I understand that.  But what he and everyone else for that matter doesn't understand is that when I am unable to do things or participate in family things it is easier for me to become numb to the situation and close down.  Otherwise, I will break down and I don't want people to know how weak I am.  To many of you this may make no sense at all.  But to me...this is my life.

Dysautonomia Video

New Hope for Blue Site!

Hey everybody!  Check out the brand new Hope for Blue Dysautonomia Foundation site.  http://www.hopeforblue.org/ or just click on the link in the bottom right hand corner of the screen.  Look for support meetings and awareness events coming soon!