Just another Day in Paradise ...

Lord, its me again.... 
  I'm really trying to keep it together but when I see things like this it really hurts and it 

really humbles my heart.  I am so thankful we have had God when there has been no one 

else! I am so glad He is there even though we may not see Him, or know that He is there 

because the very pit of our gut is just wrenching because, well we are still human. 


  Today was one of those days. We are thankful for what we have, thankful for Gods grace and His never- ending LOVE. We are thankful for one another we are thankful for all that we have and thankful that it belongs to God. I am just "THANKFUL",

   There are days like today that the emotions just really get to me. I am tired.  It is difficult having this road for over 9 years now that there has been no break and no vacation and no time away for me.  Really, no time away. Before you jump to conclusions that I want time away from my family I don't - I want a real vacation with my family.  I am tired of work 24/7 and no time for rest or fun.  It makes me angry and it makes me bitter.  

  Today was a bitter and hurtful day to me. I have made no secret of saying that I felt we have not had family and friends support during all of this with Abigaile.  I will say that there are a couple of friends who have been supportive of us even if it is to pray for us. There are many including family who have not.  

  It is difficult enough to try and care full time for a child to make decisions for her and our family and to be her private caregiver, her private chef ( I don't mean throwing a box full of dinner in the microwave) her nutrition and dietary requirements go beyond what most people can even comprehend and I'm not talking GFCF from a box or a special diet. It is a little more complicated than this.  It takes a lot of time, planning and sometimes days of preparation and cooking. I don't get to look at someone else to do my planning or make suggestions for me. I also coordinate her treatments , her care and logistics of her treatments and therapy. I really have no time left. I also have stayed in college obtaining my degree to further help my child so that I can understand how to better meet her needs. I am her full time teacher.  The school system can not guarantee her safety, meaning that they can not meet her needs. This is much more extensive than most people realize.  I am blessed by being paid but it is not enough.  

  The birthdays for the girls have been without friends (we had some friends who were part of our lives in Arkansas - and have met some really wonderful people since moving here) but it is difficult to orchestrate a birthday party or other get together unless the family is going through the same as us. I don't expect everyone to understand this, I realize more the majority does not understand. 

Today I saw a blow up bouncey house a couple of doors down in the front yard. I saw Abigaile slowly migrating toward the sofa. She loves to look out the window and watch all the people go by. Her name for playmates or friends (which she has really never had or known) is Boppee.  We saw children arriving at the party and starting to jump on the bouncey house. She sat there for almost 3 hours, wouldn't move watching and talking (chattering) and laughing. She was saying "hi" to all the children who were walking up the sidewalk to go to the party (these children were all about 6-10 years old) her age. It was just a raw and horrible feeling. She has only had one birthday party and there was no one to play with her that other kids were at. In the past we had the girls birthday parties together so there would at least be kids at Abigailes party otherwise there would be no one but her dad and I and her sister.  I watched her little eyes with anticipation as each child arrived and then she watched eagerly, then she would chatter to Natascha and I .. it was just heart breaking. I am thankful that she had a hope, a hope to play with these kids. 
I know how difficult to have what you call "normal" children (kids with our limitations) but people really miss the mark and teach their children horrible things when they don't explain to their children that our children with limitations even if they are temporary or not can play also.  I refuse to be bitter and shame on those people who have nothing to do with my child especially if you are family.  We are better off without those negative people in our lives. Those people who judge me for staying at home with my children instead of having a job outside the home I am doing what God called me to do and if you don't like it, I don't care.  The girls know who love them and who cares for them and they also know there are not people in their lives and I refuse to make them like people just because they have a family label on them.  I don't teach my children that ugliness. 
  
  This is the life of a vaccine injured family, not just a child - each and every one of our family members have been injured and have sacrificed for helping to make our Abigaile well. 

Please God heal our hearts and make us whole- 

Jer. 30:17 says, 
For I will restore you to health And I will heal you of your wounds,' declares the LORD, 'Because they have called you an outcast, saying: "It is Zion; no one cares for her."'

Thank you God that you bind up our wounds to heal us and make us whole. 

living with a servants heart