All children are a blessing. I don’t believe there’s an exception to that statement, which means kids with disabilities are as much of a blessing as if they didn’t have a disability. One is not better than the other. Different? Yes. More challenging? Sometimes. But a blessing just the same.
My youngest daughter has Down syndrome and when she was born — like other parents like me — rather than hearing, “Congratulations on the birth of your child!” We heard more people say, “I’m sorry.” It started with the doctor who delivered the diagnosis. As if my child would be a burden.
So let’s make something really clear: regardless of disability, being a parent is hard, hard, hard. The type of hard that makes you put another human being before yourself. The type of hard that shows you that sometimes sacrifice means feeling exhausted most of the time. The type of hard that on bad days makes you want to cry, and you fantasize about the dream-job you never really pursued. The type of hard that on good days makes you want to pat yourself on the back because you made it, and you wouldn’t trade this life for anything in the world. That’s parenting. We grown and we love in ways we never knew before.
The reality is, one of the hardest parts about parenting kids with disabilities is the lack of support and the negative disability attitudes we encounter. It’s not our kids and not their disability. Sure, it can be overwhelming to juggle the therapy appointments, medical emergencies, insurance policies, lack of respite, etc. But none of that makes our children less of a blessing.
Children with disabilities are a blessing, therefore there are a few things I like to keep in mind.
1. Children are a blessing, not a burden.
Raising a child is an honor and a privilege not everyone gets to experience. Disability just adds to the uniqueness of each child.
2. Focus on the positive.
Children with disabilities have limitations, but lamenting the delays does not help anyone. I don’t want my kids to feel they’re not good enough.
How we speak and what we say not only affects our kids, but it also creates a narrative in our minds that affects our perceptions. I want my narrative to be one of a blessing.
3. We set the stage.
We are role models to those around us. If what we say about our children with disabilities is always laced with suffering and hardships, other people will suppose our lives are indeed really hard. It’s OK to share the hard — as we established, parenting is hard — but that cannot be all we share.
In some way, it’s as if we become the eyes from which other people see our children. We share the blessings because they are a blessing, and in turn this allows other people to see the blessing through our eyes.
4. Part of love is humility.
Every parent is going to mess up at some point. Don’t be afraid to approach your kids and ask for their forgiveness. Be a blessing to your kids too.
5. Share truthfully but not at the expense of your kids.
I’m all for sharing stories that will encourage other parents, but not if those stories come at the expense of our children’s dignity and respect. Some stories are private, some struggles are best shared in confidence and not through social media. Our kids are a blessing, so we must protect them and treat them as a blessing on any public forums.
This life we live with disability is not a lesser life. It’s a life of blessing, because all children are a blessing.
I believe God matched each one of us with each one of our kids. We fit perfectly together with each other, and this is how we find blessing in abundance.
I’m the luckiest mom I get to call my kids my own.
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Amen to every single word of this Ellen!
I can read this over and over to be in that place Always for my kids!! Thank u for your inspiring words!!
Excellent post! The post about over-sharing is also excellent.
I grew up with a mother who told *everyone* everything, not because of disabilities, just because she always did and I still don’t know why. Everything about my mother was (is) in the context of herself, even her love for her children (I only share this because I know that no one who knows me will ever read it). Nevertheless, it took me a long time to recognise similar behaviours in myself towards my children (some things are more subtle and it took me time to realise). I have always wanted to respect my children as individuals, and to offer them the dignity of being a complete human being. This, of course, applies to my child with a disability as much as it does to the ‘non-disabled’ (which frankly seems like a meaningless distinction when it comes to talking about dignity, love and respect). This is also why I don’t often write about my children on my blog, despite the fact that no real names or names of places are used. We struggle. We love. We laugh a lot. The idea that my son is a burden that I could do without is shameful. Of course it’s bloody difficult, but life is difficult. How do you learn to value the light if you never know any darkness? Having said all that, I recently wrote a post that did touch a little on some of these things and I hope I wrote what I did with respect: https://multicolouredsmartypants.com/2017/02/21/on-autism-family-grief-and-kindness/
Thank you for this blog. Your dedication is inspiring.
Amen.