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The Mighty is a digital health community that connects people facing health challenges and empowers them to share their stories of living with mental illness, chronic illness, disability and rare disease.
No doubt, there is a very real dilemma between receiving necessary health care and respecting a child’s physical independence.
I can say with full certainty that I would not be on this road to healing if he had not shown me that it is possible.
"Finding the balance between being a good mother for my rare disease warrior and my other two boys can be very difficult and overwhelming."
I am writing to you from the years ahead because I have a few things that I need to say to you—a few things you need to hear.
"There is nothing you can do to stop it, but your mind over processes everything as if you were in slow motion."
"I know how tremendously isolating this experience is and how many judgements, questions or opinions you have faced and will face."
If you need support right now, call the National Suicide Prevention Lifeline…
"Labels should be used to help your child, not to define your child."
"Depression looks different from person to person, just like parenting styles differ from parent to parent."
"For me, it’s meant the risk of long-term immobility because my Symphis Pubis is at risk of rupture and I can no longer walk. It means another four and a half months minimum of immobility to go. If the SP ruptures it could mean further more extreme long term disability, loss of mobility, incontinence and need for surgical intervention."
There are valuable life lessons we get to impart to them by living our best disabled life, by taking all the bad and making the best of it—because that is all we can do. That is all any parent can do.
I see you dropping your child off at school, still in your pajamas, a beanie hat on your head to cover up the fact you hadn’t brushed your hair yet this morning.