MAY 2020

 

Families… We have lived and experienced a variety of realities. Much learning no doubt … moments of joy and confusion, all at the same time.

My daughter, almost 12, with autism, now she is verbal – she shared her love for her grandmother and expressed her feelings recently, at her memorial. …
The most significant moment until today, May 26, 2020 … is to realize how strong my daughter is. Also, it is surviving indescribable moments for our human race. It is adjusting to big changes. It is living, feeling and expressing ourselves in different ways.

My mother passed away … and all of our preconceptions about raising a daughter considered disabled in a variety of situations we experience, are on trial.

This writing reflects this moment, what I feel and what worries me. I want to generate a constructive dialogue and share solutions.

 

When You’re Gone!

by Yadira V. Calderon

5/22/2020

 

Go at peace knowing that your child is loved.

Go at peace fulfilled after giving your all to your descendants.

Go at peace realizing you did everything in your power to raise an independent and healthy child.

 

Go at peace with the pain survived.

Go at peace after crying alone and no one knew this happened. 

Go at peace making amends with those who wronged you.

 

Go at peace discovering you loved to look at the sky everyday at 7pm.

Go at peace since you hurt many and you could never say I’m sorry.

Go at peace whereas you loved without limit.

 

Go at peace and leave all doubts behind.

Go at peace having kissed your loved ones.

Go at peace ready to guard the ones who cry for your soul.

Go at Peace

Go at Peace

Go at Peace

My mother recently passed away and for two months I witnessed her suffering and regrets. For many reasons, my thoughts and emotions were not relating to her suffering. I knew these were the final days. I realized her body could not fight anymore.
I helped care for a terminal patient. I was caring for the woman who brought me to this world, who sacrificed so much and gave immense quantities of help to others. Love guided my days. I love my mom but I could not afford additional seconds thinking about the sadness of her medical reality when I have my daughter to keep caring for and raise. My mom would somewhat understand my actions and thoughts. I know she appreciated the fact that thanks to Covid19 we were able to give ourselves fully to easing her pain and being by her side.
Do not take me as a cold or callous person. On the contrary, I am beyond caring, helpful and others may come before me in some situations. But in this instance, I mostly thought about my daughter. She is almost 12yrs old, with autism, now verbal, pre-teen and with an attitude. I only thought about how she may or may not have the ability or willingness to do what I was doing for my mom.
But my emotions moved on as the days passed and I further understood I have so much work to do. I must create a plan. I need to talk to so many people. I need to provide stability in this uncertain reality.
In our reality, I cannot expect my child to stop doing whatever may be important in her life at the time, when my body may be ready to bid farewell to this realm of existence. If I were to be gone today, my daughter cannot take care of me. I know that. My daughter cannot keep organized all the paper work that must be handled in these circumstances (will, accounts, power of attorney, etc). My daughter is a minor and if I do not organize all my documents, she could run the risk of becoming a warden of the state. I cringe at this thought.

What do I need to do???

I must first keep reminding my child that I am not eternal – physically!
Second, I must organize all my documents – prioirity: write a living will. (see link below. Please contact an attorney or Notary – to confirm the laws in your state/country)
Third, I must speak to her dad and keep him informed of every step.
Fourth, my closest relatives will be the immediate go to’s if I were to be gone. I must explain our needs and ask who is willing to support my child when I’m gone and while her dad gets to her.
* Power of attorney and legalities are needed to achieve this – please speak with a lawyer. If the child is a minor or older than 18, different laws apply.
Fifth, everyday since May 1, 2020 when my mom passed away, I continue to remind my daughter that she is strong, she is mighty, she can learn, she is powerful, she is loved and she can do so much.
Sixth, I go back to my first thought… I remind my child that I will not live forever. And I cry.
To every parent raising a child with neurological delays, with chronic health issues, I beg you… Create a plan. Cry. Stomp your feet. But take control of the future of your child.
We are here today, we may not be here tomorrow. Reality.

NOTES:

If I’ve missed an important detail, please let me know. My loved ones will thank you.

* How to write a living will https://www.nolo.com/legal-encyclopedia/how-write-living-will.html

* A mom suggested this:

SEPTEMBER 2020

Mom, child by a Fountain –  from a Picasso 1901 piece by Rainbow Mosho

Another incredible mom suggests this:

I created an email address for my daughter whose 7 right now and I’ve stored the password to this email address in a folder I have created for her. In this folder I have all important documents, accounts and banking information, medication dr contacts and a list of important contacts. I update it annually and keep it on the top shelf of my closet. I’ve also told a few very close family member where this folder is just in case they need to access it. Periodically, I write notes/letters to her and send it to this email address for her to read when I am no longer here.
Love the idea. It is brilliant. It is thoughtful. It brings peace.

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