My thankful Thursday post today will be spiritual in nature. Today I am thankful to god for giving me the best gift of my life, Jason. One might ask why would you be thankful when you have a child who was severely physically challenged? Please know I am not thankful that he lived his entire 28 years in a wheelchair and could not communicate or function as a normal human being. I prayed for a normal life with my twin boys.
Lets face reality, he was born prematurely and developed a brain hemorrhage. Life sucks at times. One could be swallowed in their sorrow or one could pick their self up and do the job god gave you and asked you to do. He asked me to care for this child. He knew I was living a life that needing some meaning. I needed something and I didn’t know but god did. Jason was born and he chose me to take care of him. This is what I am thankful for.
Jason taught me to move out of the shell I created within my soul and speak out for his rights and advocate for his needs. He taught me what life is really about. When one is faced with a challenge I experienced, you use the excess energy for positive results, not to sulk and feel sorry for yourself. I learned that lesson one week after he was born and have been going strong ever since.
I hope my soon released book will reach other families who have been dealt the challenges as I had. I hope they will learn from my experiences. It was really hard but I can look back now and know I made god proud.
Below is a scrap book page I created two years after Jason’s death. I laid out my feelings clearly on this page. I was mourning Jason and by writing down my thoughts on this page helped me accept his death.
I can’t believe that it is over two years since you passed away. I still miss you so very much and I always will. My memory of your wonderful smile is embedded in my soul and whenever I think about you, that is the first thing I see, your smile.
Why did you give up on your life? Why did you decide this was the time and why did you choose to leave me without holding my hand to help guide you? I have been thinking about these questions for a long time and I think I know the why.
Why…you were tired of existing 28 years with a disabled body that wasn’t functioning…I understand that now. I know you were tired of all the hospitalizations and treatments and the last straw, having to cope with just one more…the tracheotomy. I get it now. You hid your pain behind your smile. You didn’t want me to see you that way anymore and it was getting harder and harder to hide your frustrations. I understand.
Why did you leave without me being there to hold your hand…well, I have to admit, I had some difficulty with that. I was with you the last month of your life, holding your hand. Jason.. I think I now understand. I understand that you didn’t want to say goodbye to me. In your own infinite way you needed to do this all alone and that is okay with me now. I understand the pain you were in and that you couldn’t cope anymore. You knew we were looking for a new facility that you could live in that would be capable of caring for your increasingly complex medical needs. I know you loved where you lived and had many loving friends and you didn’t want to leave them. You didn’t want to move to a strange place.
Jason I am now at peace because I know for the first time in your life you are finally at peace too. You are probably running, walking, talking and doing everything you couldn’t do and I am very happy for you.
Yes…I now understand and I love you and may God Bless you…Mom
Hugs to you all