By Tanya Savva
I connected with another special-needs mama last week. Our time together was a powerful reminder of the value and importance of connecting with people who know your story. There’s an instant feeling that we’re fighting in the same battle and we’re there to hold each other through every moment. It’s a no BS conversation. When we walk through life in these ‘special needs’ shoes we know there’s only room for raw, authentic and brutally honest shares.
You can fully trust that when another special needs mum nods and responds with a nonchalant ‘mm-hm’ that they embody the very essence of your words, emotions and your truth. There is an immediate transference of care and an offering of hope, but we both know that hope might fall on the wind and get swept away before it reaches you. We know that we’re leaning into the same faith to give us strength to rise each day and carry the load that feels too heavy to bear but understand that faith, sometimes, can’t carry the load of us. And yet we do the work that can feel unfair, lacking trust that it’s going to be worth it because we haven’t been given that little skerrick of something, anything, to give us the will to keep trying.
During our conversation this dedicated mama asked if I could share the ‘one thing’ that gave Mackenzie the best opportunity to thrive and rise above her challenges. “Consistency”, I replied. It’s about the little things you do every day. It’s the long hard slog of doing what the therapists have prescribed and letting that glimmer of hope continue to simmer in the background, buried beneath the exhaustion, uncertainty and fear. It’s about holding on to hope and trusting in the process, even when the thread that ties you is surely to snap and send you flying back onto your ass.
“And self-compassion and self-care”. It’s about knowing when you need to stop, to walk away, to have a month off, to just be a mum. It’s about asking for help, even when it’s hard, and stop shaming yourself when you realise that you actually can’t do it all. Because you’re not supposed to. We often fail to invest the same love, care and attention into our own needs as we do our children and partners, to show loving kindness and compassion, guilt-free moments without our children, and honouring ourselves as women, wives, daughters and any other title we carried before we took on the ‘special-needs mum’ label. It’s about saying no and letting people down, because the alternative is saying no to your Self. And that’s not on. It’s important to feel OK that you expressed gratitude for not having to do that one more thing for the millionth time, even though it benefits your child. It’s about being OK that you said ‘Thank God’ with a sigh of relief when the physio cancelled, even though that means another month before the next appointment. It’s about being able to take time for You, in whatever capacity that is, to fill up your cup so you can continue to show up for the people that you need you most.
Building a community around you is vital to your survival in this battle. And it is a battle.
You battle for sleep.
You battle for energy.
You battle for time, resources, money, knowledge.
You battle for answers.
You battle your emotions.
Your partner, your parents, your children.
It’s not for the faint hearted and you can’t and shouldn’t do it alone. Social media gives us access to so many incredible people who have walked this path. There are support groups for every need. So if your child is blind, autistic, deaf, limbless, hairless, has a growth on their face, a wheelchair, a feeding tube, a rare disease…someone else’s chid does too. Find them, lean into them, ask them the hard questions and listen to them. You’ll see, feel and know the parts of yourselves that are buried and hidden from others that don’t (and can’t) understand what you’re going through.
In these conversations and this community that you build around yourself, you’ll start to feel a sense of normality and inclusion. You’ll become part of this elitist club. You learn that you’re not as isolated as you first thought – many have been here before you and hold you in their energy. You’ll understand that every fear, worry, feeling of failure, guilt, shame, distrust and lack of self-belief is a common thread that ties you together. You’ll trust the power of connections with people who truly get you and gift yourself permission to let down your guard so you can shine in your truth – no matter how dark, hurt, ugly and frazzled it might be.
And when you truly believe you can’t put another foot in front of the other, don’t.
Collapse to the earth, curl up in bed, don’t wash your hair, demand someone feed you, clean your home and care for your family while you release, recoup, regather, realign and rebuild the parts of you that got lost along the way. Because if you forget to care for yourself, and you will; and if you forget to be loving, kind and compassionate to yourself, because you will; and if you can’t forgive yourself for what you did or didn’t do or say, because you definitely will, then you will crumble. You will hit the ground so hard that you’ll lose all faith. Trust will be gone, tears will flow, your heart will scream, your body with wither until you fall asleep.
And when you sleep, you will heal.
Your body will regenerate, your life force will quietly seep back in and you will be gifted with the grace of a moment that reminds you that you really matter. That your mental, physical, emotional, social and spiritual health matter. And nothing will happen if you’re not rested, nourished, supported and cared for.
And when you’re scared for the unknowns into the future, I invite you to stay here. To be fully present. As much as you want to know what’s coming and whether your child will walk, talk, attend mainstream school, be able to feed themselves, get a job, get married … just stay here. Immerse yourself in what’s happening now. Because if I know anything from my own journey, it’s that if faith falls short and your child doesn’t achieve the things you hope for, by the time that reality weaves its way into your knowing, you’ll already have the information, knowledge, tools, resources, emotional resilience and acceptance that you need to welcome that reality into your heart.
Inspired by the power of our conversation and the dedication I have to supporting mums, I’ve decided to gift a FREE WEEKLY SUPPORT CALL to special needs mums every Friday for the rest of 2020.
This will be a one off 1 hour call available to any mother/carer of a child with special needs (no restriction to your child’s age). The call will happen on Friday from 10-11am via phone or Zoom starting July 24, 2020. All you have to do is shoot me an email [email protected] and tell me your preferred date and we’ll book it in.
Visit tanyasavva.com to learn more about Tanya, her journey and how she can support you.