Monday, December 24, 2012

It has been to Long

KAte and Nevaeh Christmas of 2012
 Wow, How life changes so quickly ... Nevaeh Iris came home safe and should and as you can see by the pictures she is growing and is a blast to be around. Her smile is able to light up the room.
Kate is doing ok. She is struggling with her JHD. It causes her to fall or trip. It has caused her swallowing to be servery affected. The medication she was on before has caused many ticks and other issues. So we are weaning her off it and hopefully we can either stop medications or we can use a different one.
I am angry that the ticks she developed from the medication she was on. It does NOT seem fair that I made sure to have her enrolled with doctors that specialized in JHD and HD and yet this happened  I am angry that no matter what it is a losing battle. I am mad that HD has taken over our lives! ...
Kate is fighting to keep going. I see her depression and I worry. I feel my depression and realized that even when I am doing my best it is not enough. I know that God has a plan and for that I am thankful. I often times see others and hear them fuss about their lives.. AND i want to scream "REALLY ... I CANT DO THIS ANYMORE.. instead I walk away. I walk away and pray for guidance. and peace.
I am sorry if it seems that I am overwhelmed.. the truth be told I am... Between Shawn being Autistic and ADHD  and trying to help Kate it can be overwhelming.

I see my loved ones and I know that they are here, and that I thank God for them each day. The struggles with the depression and anxiety I have are more to deal with my worries for my children. Kate, Mikey, Landon Shawn and Gabe. How to be a mother to them all and how to keep things going. And how to help all of them.I see our family and it makes me smile... I also at times what to run away screaming!! :)
Nevaeh Kate's little princess and out little ray of sunshine
How to make sure Mikey Landon and Gabe all feel that their thoughts and feelings matter.and what to say when people look at Kate thinking she is drunk or something is wrong with her.. I look at her and see my daughter, My child how drives me nuts who makes me smile who can make me cry and most of all who I LOVE... She works so hard at caring for her daughter and dealing with JHD
Each day with all our children is a blessing and there are times when I wish I could fix things for them give them whatever they need... I know this is not possible  I give them my love and show them my faith. and pray that God takes care of the rest.

Landon (button Boy) and his favorite little person Nevaeh
It been a hard year. But it has been filled with blessings and love too. My depression will go away and my anger to and it will come back .. But so long as I accept God is in control... I will keep fighting.

I wrote this Poem shortly after Kate's testing and we found out she was positive for JHD

I woke up and realized that my life had not ended
I saw the sun rise even with pain and sorrow in my heart
I heard laughter of children even with pain in my soul 
I felt safe even when my world was shattering 
I saw the blue skies in spite of my tears 

I woke up and realized that my heart still beat 
I saw the sun rise and caught a moment of hope
I heard laughter of children and heard my voice join 
I felt safe because my world had just opened more
I saw blue skies because the tears washed my eyes clean

I woke up and felt heavy and weak 
I saw the sun rise and felt cold and alone
I heard laughter of children and could not smile
I felt alone even surrounded by people
I saw the blue skies but felt the biting wind

I woke up and prayed
I felt the sun rise and warmth on my face 
I heard laughter of children and stayed on my knees
I felt at peace as my heart poured out to My Father
I saw the Blue of the skies and knew He was there. 

I never though I would share this and I only do so that you many feel the hope and peace that God offers. I was broken and torn apart. I couldn't breath with out wanting to scream and fight. I know that I still fight this battle. I am able to win each day because of God and the people he has led me to. 
I thank each of you for loving me and my family in so many ways. Thank you for kind words when we need them and love you show each day. 
Thank you God for bring me to this Place.. even in times of pain You are there.... I in my human way just need to remember this always
Thank You God for your Gift of your Son..thank you for the Blessing that don't feel like blessings.. Your plan is perfect,  thank you for reminding me that I am never alone.. and that it is my job to trust you. Thank you God. I may fall and falter and stummble and mess up.. But God you are perfect and you will never fail me.
God Bless and Merry Christmas!!