It’s the first step into the unknown for me and I’m terrified. My goal is to share what life is like living with Rett Syndrome and Intractable Epilepsy and to encourage others along the journey… however I pause as I step over the threshold to enter the interweb.

Will it be “too much”?

Will I offend?

Yes, I know what life is like living with one version of disability; however my lived experience and what I believe are important to consider when dealing with a person with a disability could vastly differ from the perspective of another person. What if I get it wrong? What if I inadvertently step on the toes of another disability community in advocating for support and raising issues I believe are important for someone like my daughter? After all, I myself am not disabled and while I believe I am a strong advocate for Scarlett, I do not represent the views of every person who is disabled or their caregivers. 

But to remain silent also has its risks. To keep my own lessons learned, thoughts, and hopes trapped in a cage is a prison I can no longer live in. 

It has taken me years to finally have the courage to show up as I am and share with others our journey. My dream is that the benefits will outweigh the risks and mistakes I’ll make along the way. I only ask for you dear reader to take what I say, not as gospel truth, but as a perspective to consider and think on. There will be things I share that would only be pertinent to a parent of a  medically fragile child. While I am a caregiver, most people do not think of someone in their mid forties as a caregiver. Perhaps you’d think of someone looking after their aging parents. My caregiving experience is unique and I’m part of a minority.

But I must speak to those of us caregivers who are slogging away in the trenches, caring for our deeply loved children who are very much alive, yet also with an indefinite timeline ahead of us.

That notion of looking at us as being inspirational, superhuman heroes with unlimited strength…is garbage.

We are…

So. Tired.

Exhausted.

Weary.

Struggling to keep hope alive.

Proud of our children. 

Joyful in the wins that do come our way, no matter how minuscule.

Thankful for the people who do “see” us and offer what help they can give…even when it feels like we are bottomless pits of need and want.

Fierce in our determination to advocate for what our child needs and has a right too.

We are the same as any other parent striving to give our child safety, love, provision, and belief for a better future. 

In this blog you will find practical advice and tips on caring for your medically fragile child as well as hope and insights I’ve learned along the journey. 

It will not be perfect. 

My commitment is to hold out a candle of light for us caregivers, insight to those who wish to understand what life is like living with one version of disability and to inspire courage for all of us to go out and live our lives, facing challenges head on as they come, yet looking for the beauty in even the simplest of things. 

Brené Brown defines courage as the ability to be vulnerable and speak honestly, even when it’s scary. This is my small act of bravery in opening up about what it’s really like to be a caregiver to a medically fragile child. Sometimes I feel there’s so many people desperate to demonstrate how funny, normal, bright our children with disabilities are, (and they are!) but I can’t seem to find the support that also shares the tough parts without the sharp edges of bitterness. I want to see the beauty, but I also need to face harsh realities and truths; no matter how much I try, I can’t dress it up to look prettier. I want to see those of us slogging away, yet still bravely showing up with dirt under our nails and hard fought battles won. Victory over the dark thoughts that threaten to undo us. Help for when the harsh realities tempt us to give up. Presence for when the days are dark and lonely.

Maybe I’m looking for a little more honesty in myself and with our society. 

I have been so desperately trying to only experience the joy and love and amazing things that disability brings into my life; I’ve been running from dealing with the grief and sadness that also accompanies,  ignoring the parts that are so despairingly heartbreaking and extremely difficult to go through. Can I accept both the good and the ugly?

I’m learning to hold both in tension. Both are sides of the same coin. There’s not one, without the other. 

I dream of community that is willing to embrace the challenges, awkwardness, ignorance and pain, as well as the triumphs, happiness, rejoicing and thrills disability brings.

Brene Brown shares from her research that you can’t selectively numb emotions. If you numb grief, sadness, and fear you also numb joy, gratitude and happiness. This blog is my first step to fully embrace all aspects and emotions that disability brings into my life – the mountain top views and the desperate, holding on by my fingertips moments. 

This is my act of bravery in stepping out and cracking open what I’ve learned and gleaned from being a caregiver – the good, incredibly amazing things as well as the bad and the ugly. Can I also salvage golden nuggets of truth and exquisite joy through crushing loss? I think so. I know it’s the next step for me and I’m forging on with a vision for a better future, yet trembling still.

I look forward to sharing a piece of my life with you and would love to meet other weary, yet brave travellers along the journey.

Stepping into the unknown is freaking scary, but staying silent is no longer an option. 

Welcome.