Firstly, I want to acknowledge that this is my own personal reflection and experience of raising a child with a disability. I know that this experience is as different for everyone, as our children’s abilities and challenges are different.
Before motherhood, I never imagined in my wildest dreams that I would be raising a child with a disability. In fact, I never thought my road to motherhood would be as challenging as it was. After our first pregnancy ended in miscarriage, I was simply grateful that my second pregnancy progressed normally. And actually, everything from birth onwards was pretty typical, with the exception of breastfeeding (but that is a whole other story).
Eliana hit all her milestones and was a very sociable and happy baby up until around 18 months of age. In the meantime, we had experienced two more miscarriages and were simply even more grateful for our miracle girl. In fact, her name Eliana means ‘my God has answered me’ – something that I cling to most days.
Diagnosis and grief
Fast forward to her diagnosis of Autism Spectrum Disorder, and the reality that our miracle girl had a disability. I felt grief, not for any ‘label’ that had been given to her, but more of grief that things would not be easy for her. Back then, that grief was heavy; I felt like I had failed her in some way, but of course, I realise that this was not true. I cannot speak for all parents of kids with a disability / special needs / additional needs (or what I term special ones). However, I still feel waves of grief from time to time – not as heavy as back then – but grief all the same. When I see how other seven-year-olds interact with each other or with their parents, or when I have to know the lay of the land for any new place we take her because if there is any kind of body of water, she will want to be in it at all costs.
Some days it simply feels like too much to bear.
It is often exhausting.
But I remind myself that her name says it all – my God has answered me. And like in so many other scenarios, He often answers us in unexpected ways. And in fact, through all the challenges and exhaustion, I have learned the fullness of the phrase ‘to count it all joy.’
It is all worth it. SHE is worth it. All of it.
We are incredibly blessed with the family and community surrounding us. Our people love us and our special girl fiercely. But this is very often not the case for parents of children with disabilities / special ones.
Supporting other Parents
In keeping with the theme of MOPS this year, I’d like to humbly suggest some simple ways we all can best serve parents of special ones;
Walk in Power
Again, I cannot speak for all parents of special ones, but often I feel anxious when taking our girl to somewhere new. A way other parents have been amazing has been to straight up ask me practical ways that they can help myself or Eliana and limit the stress on us. They help me to walk in power, which helps both our girl and myself feel included and not a burden.
Love One Another
By putting our preconceived ideas, prejudices and (let’s be honest) our own awkwardness aside and offering empathy, friendship and kindness, parents of special ones will know that we are not alone. Having spoken to a few such parents in my own circle, we OFTEN feel awkward, lonely and alone. Knowing that we (as parents) and our children are seen AND loved adds value to our lives in ways that I cannot adequately explain.
Make Love Your Legacy
Ultimately, teaching our children by our own example that ALL PEOPLE have value. Regardless of physical or intellectual abilities, they are valuable. This is how we can make love our legacy.