Have you ever pondered the connection between the tree of life, the placenta, and mother earth? The roots of the placenta are similar to the tree of life, the mother offers her child courage, strength, and protection from the moment the child is conceived, the love is endless and goes on through eternity. As, I grew into motherhood and did my on the job training, and it was on the job training I received. I did not receive a master book that said if, you do things this way your results will be 100%. When your child is born you get your directions from your child, you receive your directions through the different sounds and cries of your child. I am cold cry, I am hungry feed me cry, I need to be changed cry. I called my newborn’s cries the I am’s, those were my first directions of all the directions I received. Yes, I received the help of my mom and my grandmother and their expertise was always welcomed because, being a mom believe it or not; is a very difficult career to navigate. I chose motherhood or maybe motherhood chose me however, it came to be. I was happy and fulfilled it gave me some of my most joyful moments. Being a mom was the best job ever. Why? You may ask why? Because, it was a job that offered up unconditional love every single day. You learned something new everyday that you did not know the day before. You see our children are our teachers and they teach us what we need to know about life. They teach us what they need from us the minute they are born. However, more importantly they teach us genuineness, how, to love every single day. They show us what it means to love someone unconditionally. Can you love me when I am angry? Can you love me when I say the words I hate you? You can understand the frustrations of a five year old, a ten year old, and a 15 year old that does not get what they have asked for. You can understand the anger because, you are the adult and you can always take the time to put yourself in their shoes to understand their feelings. If, you do not have your child with you; you are still connected to your child they will be with you forever, and a day until you take your last breathe. I am sharing my thoughts on this today for Mother’s Day, as, there are many mothers like me, that I know and don’t know celebrating Mother's Day without a child or children. I feel that it is important to hold a place in your heart today for your child or children that are not here with you in body this Mother’s Day. Know, that you are still connected to them their spirit still lives because, you are connected to mother earth, the roots run deep. Honour yourself this Mother's Day, whether, you are a mother, grandmother, or a caregiver of a child know, that you are not alone your child, your loved one will be there with you because, your heart will be holding a space for them today and everyday. My heart is with you always.
"Brothers have the same deadly disease but only 1 gets what their parents hope is life-saving treatment" ~Rosa Marchitelli CBC News https://www.cbc.ca
Reading this story this morning quickly took me back to 2002, when we found ourselves in a similar situation. Our son was diagnosed with a Rare Disease called Batten disease. I am writing you this comment with the thought, that maybe the information in this report “From Hope to Despair" will help this family.
On September 1, 2005 “From Hope to Despair” was an investigation by the Ombudsman of Ontario into rare diseases. I have included the link to the report below, to bring awareness to the report and with the hope it could help anyone in the community now or in the near future.
Thank you, for telling this story and keeping HOPE alive for all the Rare Children in Canada and around the world.
“Kindness matters for our self-growth, it helps us heal.”~Wendy Comeau
Whether the Ministry of Health and Long-Term Care’s refusal to fund the drug Cystagon for treatment of Batten’s Disease is unreasonable and unfair
“From Hope to Despair”
OMBUDSMAN OF ONTARIO SEPTEMBER 1, 2005
TABLE OF CONTENTS
“From Hope to Despair”
The Disease and the Miracle Drug
The Cost of Care
Errors, Excuses and Omissions: Roadblocks to Help
The Medical Care Complex
Seeking Funding – An Exercise in Bureaucratic Futility
The Irrelevance of the Ontario Pharmacy Notice
Six Troubling Things
A Bad Policy – How “Approved for Sale” Fetters Ministerial Discretion Irrationally