I’ll never forget the day I received that first diagnosis for my child.
It was 2004. I was a new mum and my first baby, my gorgeous platinum haired boy, was 11 weeks old. He was eating well, sleeping well (as well as any new baby does, anyway!) and growing beautifully.
He was the centre of our world and perfect in every way.
Attending a precautionary eye specialist appointment, we were shocked to receive a diagnosis of oculocutaneous albinism. Albinism is a genetic condition where the body produces little to no pigmentation, resulting in vision impairment, sun sensitivity and (in many cases) unusually pale hair, skin and eyes.
It’s not a life limiting condition, but it’s most certainly a life changing one.
In an instant, our world turned upside down. We entered that appointment with hopes and dreams for our boy, ones shared by so many other parents. We emerged, barely an hour later, with those same hopes and dreams crushed under our feet.
I found myself grieving for those lost hopes and dreams, alongside the grief I felt for my son’s diagnosis. Even now, 13 years on, grief has a habit of returning with each missed milestone and with every new obstacle that stands in our son’s way.
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However, I’ve come to realise that grieving is a necessary part of special needs parenting. It shouldn’t be something to avoid or fear. Grieving a diagnosis is not betraying your child or giving into despair. It’s actually a healthy way to deal with your changed expectations as a parent.
There are many types of grief following a diagnosis
I grieved for the unfairness of my son’s situation. He didn’t deserve to have to work harder in life, face discrimination for looking different and struggle with independent living because of the lottery of genetics.
I grieved for our family. It’s not easy being a special needs family, with added stress, responsibilities and obligations. Sometimes, I look longingly at other families who seem to have less to manage. The grass is always greener on the other side, after all.
I grieved for lost expectations, for us and for our boy. A diagnosis brings new expectations and it takes time to let go of the old and embrace the new. It’s not always an easy transition and it took time for us to come to terms with it.
I grieved for the future and for the uncertainties that lie ahead. It’s hard not knowing what’s in front of us. With several additional diagnoses in the mix, I still don’t know if my boy will be able to live independently when he’s grown. Uncertainty is tough to live with.
It’s natural to feel ashamed of your own feelings of loss and disappointment following a diagnosis. After all, your child is still the same amazing person they always were. I know I used to feel guilty for feeling grief, when I gazed at my perfect little boy. Funnily enough, that just served to make me even more miserable.
However, dealing with grief is a necessary step in coming to grips with your new reality. It’s important to acknowledge your feelings so you can come to terms with your situation, face up to your fears and find a new way forward as a special needs parent.
Why you need to grieve when you receive a diagnosis for your child.
It will help you accept the diagnosis. You’ve heard of the five stages of grief – denial, anger, bargaining, depression and acceptance. These stages are equally relevant when it comes to accepting a diagnosis. So, don’t try to ignore them. Instead, acknowledge your feelings, even those you feel guilty about, and work through the stages of grief in order to find acceptance.
It will allow you to come to terms with your new reality. It’s difficult to be the parent your child needs you to be if you’re living in denial and still holding onto old expectations. I’ve been there, I know. Giving yourself permission to grieve the loss of your expectations will help you come to terms with your new reality sooner. Denying or ignoring your feelings will only prolong your pain and potentially affect your child.
It will assist you to best help your child. Until you work through your own feelings, you won’t be able to best help your child. It’s hard to make therapy, treatment and medication decisions if you’re still struggling with the diagnosis and all that it means. It’s important to grieve so you can put your feelings aside and start building a new future for you, your child, and your family.
Don’t be afraid to seek help if you find yourself struggling to work through your grief. Talk to a trusted friend or family member or seek professional help if you feel overwhelmed. Remember, your feelings are your own, but you don’t have to go through this all on your own.