This blog is a labor of love for those facing profound loss, as I have. It is also written for empathetic hearts who strive to know and help fellow humans in need. I hope that throughout this blog you’ll find meaningful information that provides strength and greater understanding. In addition, resource links that I wish I’d had when our Miles was first diagnosed are listed, below.

“Miles Smiles” is especially dedicated to our precious children who live with chronic illness and disability, and those that love and support them.

Early on in my own journey of mourning and fighting for my baby, I read somewhere that grief softens over time like a well-worn leather jacket. I was so despondent, and every day was so dark, that I simply could not imagine that this could be true. As the years went on, however, my grief did indeed soften. It was a welcome relief. Life became somewhat easier, at least in certain moments. Joy also slowly returned.

To all those on difficult journeys, I wish you that same kind of healing. Take things day by day, or even hour by hour, if necessary. Treat yourself with the utmost respect. Seek professional help if you need it, to move through your very normal anger and sadness. Fight with everything you have, but rest when you have to. Do not scapegoat others unjustly in your grief. Take respite and find some kind of healthy escape for yourself every day, as top priority. Forgive yourself. And remember, above all else, that you are never alone.

 

 

Support for Caregivers

The Caregiver Space – http://thecaregiverspace.org/

CareGiving.com

Self-Care

The Chopra Center – http://www.chopra.com/

 

Rare Disorders

National Organization for Rare Disorders – https://rarediseases.org/

 

Catastrophic Childhood Epilepsy

Childhood Epilepsy (MassGeneral Hospital for Children) – www.massgeneral.org/childhood-epilepsy

Child Neurology Foundation – childneurologyfoundation.org

Intractible Childhood Epilepsy Alliance – www.ice-epilepsy.org

National Institute of Neurological Disorders and Stroke – www.ninds.nih.gov

Epilepsy Foundation – epilepsy.com

The Charlie Foundation (Novel dietary treatment option) – https://www.charliefoundation.org/

 

Down Syndrome

Welcome to Holland – A Parent’s Perspective – http://www.ndss.org/resources/new-expectant-parents/a-parents-perspective/

National Down Syndrome Congress – https://www.ndsccenter.org/

Disability Advocacy

Disability is Natural – https://www.disabilityisnatural.com/

The Jerome Lejeune Foundation – https://lejeuneusa.org/

People-first language – http://www.thearc.org/who-we-are/media-center/people-first-language

The Campaign to Stop the R Word – http://www.r-word.org/

The Cromwell Center for Disabilities Awareness – http://cromwellcenter.org/

Stop Ableism – http://www.stopableism.org/what.asp

 

Accessibility

Americans with Disabilities Act – https://www.ada.gov/

Universal Design – http://www.universaldesign.com/