You soon learn that so much is out of your control once your child is diagnosed.
It’s a confronting lesson that often gets more complex, the tighter we try and hold on.
I know, because I’ve lived in that space of trying to desperately control the outcomes for my beautiful girl, at the same time as watching them all crumble down.
I didn’t want my child to have any of her health conditions.
I didn’t want to spend my days, months and years living in and out of a hospital.
I didn’t want to spend our family time attending therapies all.of.the.time.
I didn’t want to say ‘no’ to social events because I was always so tired.
I didn’t want to get up every hour to attend to my child.
I didn’t want to watch another missed milestone go by.
I didn’t want to attend another special needs equipment trial.
I didn’t want to watch my child endure another painful operation.
I didn’t want to have to research every minute detail pertaining to my child’s health.
I didn’t want another early intervention meeting wondering how my child would ever fit in.
I didn’t want to think about end of life care and children’s hospices.
I didn’t want any of it, yet somehow it wanted me.
It chose me.
As much as I fought it, pleaded and cursed the skies above. Nothing was going to change the simple fact that my child was born with multiple rare genetic conditions, that would completely alter her life forever.
I found myself balancing in in a constant tug of war between holding on and letting go.
Gosh, was the letting go process messy.
It was the internal wild rage I would experience when my child suffered.
It was the sob’s in the middle of the night where I would whisper, enough now, enough I can’t do this anymore.
It was the arguments with my partner on the back months and years of chronic broken sleep.
It was the lump in my throat when I had to adjust to a new piece of serious medical information.
It was the frustration of the world telling me, “Be strong Natalie, it could always It could always be worse” and I wondered how much worse it could possibly get? As far as I knew, being told that your child would not be able to walk, or live long, felt pretty full on to me.
Yet through the haze of it all, something magical happens, and often when you least expect it.
The moment where you just loosen your grip.
Where you softly surrender.
Where you let the magic of faith take the lead and finally let go.
Let go of the the tight grip of our pre-conceived ideas and make space for a whole new dimension of life, and our world opens up, stretches beyond its boundaries and we stop and realise that we can totally rock this new special needs life!
This moment I believe, arrives for every special needs parent. Some sooner than others, yet it most certainly happens.
A monumental shift.
A strange kind of awakening.
Where you realise that all the things that used to trigger fear, isolation, guilt, grief, exhaustion no longer have a tight hold on you.
The moments you realise that you can get to an appointment at the hospital or anywhere else with military precision, with all the “additional” equipment and place the disabled parking sign on your car, like a rock star VIP.
The moments you know exactly where to park, the best café’s and where the staff all greet you, maybe even hi-five you.
The moments you catch your partners eye and hold it longer than usual, sending each other phenomenal amounts of “love and gratitude knowing how far you have both come.”
The moments where you really celebrate life, because you’ve learnt there is really no other way.
The moments you attend a therapy session with excitement knowing you are planting seeds of potential each and every time.
The moments you deeply appreciate a long hot bath, a walk on the beach or a good nights rest.
The moments you belly laugh again, and rejoice in the diversity of this parenting gig.
The moments you read the medical/NDIS/funding forms and breathe through them, rather than react to them.
The moments you watch your child recover in the post operation ward, knowing that all is okay. You are okay.
The moment you realise how incredibly resourceful you all are.
The moments you get to see how inclusion not only benefits your child, but the world as a whole.
The moments that you can handle nights of broken sleep, because you’ve learnt to nourish yourself better.
The moment you can walk through the world with your face held high, your chest swelled with pride while pushing a wheelchair, lifting your child into a standing frame, feeding them pureed food with a bib way past their toddler years, communicating with your child via a communication book, changing their nappy for years, ticking “no” on those forms about certain abilities and so much more.
The moment you learn to let go of certain dreams and hopes and replace them by holding on to new ones, diverse ones, unique ones and mind-expanding ones.
If you’re looking to ignite your motherhood journey with more connection, ease and flow. Learn how ‘The Reignite Program’ can help you. Created by a special needs mama, especially for special needs mama’s.