How Instagram has Taught me to Survive and Thrive while Special Needs Parenting.

 When my daughter, Kokoro, was born I began a journey through the world of special needs and rare diseases. Fortunately for me, this path has been well trodden by a number of incredible families who have found ways to survive and thrive in extraordinary circumstances. These mothers (and I say mothers because that is who I have been learning from, not to say there aren’t incredible special needs fathers, aunts, uncles etc) have been my spiritual teachers on this road. Their strength, wisdom, grace and grit have helped unlock a depth of understanding about the transformative path of parenthood. I am still a novice, and there are still days when the weight of the challenges that my daughter will have to overcome, get me down. There are days, when the scale of the difficulty, discrimination and adversity that faces people with disability feels immeasurable. But mostly, we are a happy and thriving family. Here are a few of the lessons that these women have taught me.

Parenting is not a competition, but cheerleaders really help:

For me, community is the difference between feeling completely isolated and lost and feeling like I can continue inching forward each day. The reality of life is that between appointments and trying to give my daughter enough space in the day to feel grounded, getting out the door to meet with friends is often impossible. So I have found my tribe by scouring hashtags like #CHARGEon and #SpecialNeedsParents. It felt weird at first, communicating with strangers and allowing myself to be vulnerable with them, but I have been rewarded with shining moments of connection in what initially felt like an endless sea of aloneness.

Social media can be toxic and awful, but for me, it has been a lifeline. The support and encouragement of other mothers from around the world help me know I am not the only one going through the triumphs and moments of absolute despair on our daughter’s journey. The late night exchanges with other parents who really get it, at a gut level, has at times been the difference between feeling like there was no point going on and giving me the courage to look forward. It has also brought me deep sorrow, when strangers I have learned to love from afar have lost a child or suffered yet more distressing news, but my world is all the richer for these bonds. When after months of therapy, Kokoro finally commando crawled a little way across the living room floor and I caught that on camera, I felt the joy of that moment echoing and amplifying around the globe as these beautiful women shared in our joy.

In the early days community felt impossible to find in our extraordinary circumstances. Then mothers like @thislittlemiggy taught me an incredible secret. Sharing and making yourself real and vulnerable in the everyday also makes you stronger. Eventually I realised that I was going to have to seek out the community I wanted by doing just that; offering my truth and seeing where it resonated. And as I have built connections, they have become my life raft. If online is the easiest way to access community then that is what I will do for now, that’s not to say though that I wouldn’t kill to get all those mothers in a room and drink a cuppa with them. But for now, DMs will have to do.

The phenomena of “Post Traumatic Growth” is gaining some momentum of late, in no small part due to the recently released book by Facebook’s COO, Sheryl Sandberg, ‘Option B: Facing Adversity, Building Resilience, and Finding Joy’. This is a path that parents of children with complex medical needs have been trekking for an eternity. The journey-women I have encountered on the way and who have inspired me to keep going when I have wanted to fall down and cry are masters in this dance. This doesn’t mean they don’t experience despair, but that they move on with head held high in spite of it. Elizabeth Gilbert, author of ‘Creative Living Beyond Fear’ puts it beautifully; “The women whom I love and admire for their strength and grace did not get that way because shit worked out. They got that way because shit went wrong, and they handled it. They handled it in a thousand different ways on a thousand different days, but they handled it. Those women are my superheroes.”


Learning to focus on “what now” instead of “why”:

In the beginning of Koko’s life, I spent a lot of time feeling guilty and responsible for not growing a “perfect baby”. Despite the science irrefutably saying there was nothing that I could have done differently, I would allow myself to ask “why me?” and “why her?” trying to find some deep seeded karmic cause that would allow this suffering to be explained. Quickly though, I begun to see that by wallowing in that “why” I was assuming not only that there was an explanation for the difficult things that happen in life (which had I discovered, how useful would it be?) but I was dwelling on loss. Over time the ingratitude of this attitude dawned on me. I had this gorgeous little being in front of me that required me only to love her as she was, she was perfect and whole and complete as she was. It was my attitude that was broken, not my baby.

It was at the time that I had a conversation with a midwife. “There is nothing you can change, so you need to ask yourself “what now” instead of “why”.” This advice has become something of a survival mantra for me in all aspects of my life, when my brain starts hashing over the “woulda, coulda, shouldas”. The special needs mothers I look up to are experts in this, as @mummakinglemonade has made plainly clear: if you accept that life gives you lemons, make lemonade. This view on life isn’t necessarily something she was blessed with. It’s a choice, that makes her and her daughter’s life better everyday by training the brain to have an attitude of gratitude. That kind of mental strength is only built with determination and dedication. If there were an Olympic sport for mental stamina, these mums would be an unbeatable team.

The focus on ‘what now,’ is about keeping your eyes on what you have the power to change and also allowing you to stay rooted in the present. It doesn’t come easily, it’s a mental health discipline. Like going to the gym strengthens your body, actively containing rumination strengthens the mind. I remember @inclusionmontessori embodying this by posting a picture of her gorgeous daughter sitting amongst the flowers after a week of immeasurable challenges. Their challenges didn’t disappear, but @inclusionmontessori chose where to fix her gaze. It’s easy to miss those seconds of joy, a child admiring fresh bulbs, sun falling through the trees, but these mothers sniff them out like truffles.

Processing but containing emotion, aka “Shower Crying”:

Focusing on “what now” has helped me to develop what I call “pragmatic optimism” but I was aware of the danger of slapping a positive face over deep seeded worry and creating a nervous breakdown in a bottle. As @ourjourneyforjackie says “allowing yourself time to just let it all out some days is crucial.” This is where “shower crying” has been incredibly helpful, and once I shared that I had been doing this, I discovered that many special needs parents do too. I don’t know if it’s something about the flow of water in the shower, or if its just part of the multitasking-reality of parenting young children that the shower is often your only alone time, but for many of us, the shower also became our place of emotional reset.

Crying my eyes out in the shower allows for emotional release, letting the pressure out of what can be a build up of worry, exhaustion and frustration. But it also links it to a place and time that I can fully immerse myself in those emotions, allow them to flow and then let them release. It also means that when I get out of the shower, I am done with them for the day and I can go do what I need to do. Some days, I need a really long shower, other days I look around and find that there are no tears that need to surface and I am in a place of contentment and I just wash my hair.

Caring for your family includes self -care:

Too often “self-care” is equated with going for a massage or facial, this stuff is lovely, but it’s not really the type of self care that thriving special needs families make an integral part of their life. Over and over, the importance of scheduling in self-care has been reiterated to me by my tribe of special needs mums- over and over because it has taken a million repeats for it to sink in. For some of us that means putting in the leg work to find and see a terrific therapist, for me it was making time to dance and draw and schedule in “put feet up and drink tea” time. All mothers struggle with their needs falling lower and lower on the list, but when you have a child with ill health the immediacy of their need drowns your needs out. @finding_thanks reminded me that the pressure we put on ourselves to be perfect doesn’t help us to achieve presence or to be of service to anyone, least of all ourselves. Ultimately, I found that the way that I could start to value the importance of the time I needed to nourish myself is realising that failing to take care of myself was failing to take care of my family.

Most days, life just requires you to do as @v_and_me31 puts it “put on your big girl panties” and get on with it and sometimes that means dragging yourself to the mental-gym. The hardest lesson I have learned is that when you become a parent you still have to parent yourself. Some days that means seeing the little child in me and being kind to her and giving her tea and chocolate, other days that means telling her to get her butt out the door and go for a walk and stop feeling sorry for herself.

Life is now:

From the outside, special needs families are often viewed with pity. We know that. We feel it as we move through the world. And the issues with pity are too numerous to go into here. But the whole story is hidden to so many. Yes, we have faced trial by fire, and learned lessons hard and fast but these experiences have allowed us to squeeze joy out of situations that would fly by unnoticed in many homes. We have learned the exquisite beauty of tiny moments that fill our world with the bitter-sweet joy of living in the now in a way that ordinarily would take years of training. We live in the now because we have to in order to survive. We live in the now because casting doubt and terror onto the projected lives of our children does them and us a disservice and unnecessarily limits them far more than their disabilities and health concerns. These are lessons I would never wish upon anyone, but one that I am filled with gratitude daily for the privilege of learning, because my teacher, Kokoro, is the greatest gift I have ever known and her resilience, grace and grit makes mine appear pale and insignificant by comparison. Her job isn’t to be my teacher, she has her own life to lead. But if she has a lesson to teach, I will always be a willing student. And the women I am learning with are the most incredible humans I have ever had the privilege of “sort-of” meeting.

  H About the Author:

 Holly is the proud mother of Koko-Lu a fiercely intelligent and hilarious 22 month old who has CHARGE syndrome. CHARGE syndrome is a spontaneous genetic condition that for Koko has resulted in DeafBlindness, Congenital Heart Defects and many other challenges. Holly shares the joy of parenting Koko with her awesome husband Joe using the instagram handle @hollyetkoko


For more information on CHARGE head to https://www.chargesyndrome.org.au/