I am asking this question for myself and on behalf of other parents to children with a disability: Are all children a blessing or are only children with a disability a blessing? Often when people learn that I have a child with a disability they reply with “she must be a blessing”. Well, all children are a blessing.
And, they contradict the above and confuse me when expecting a baby either by pregnancy or adoption and say: “as long as the baby is healthy and please God has no challenges”. Doesn’t everyone want a blessing?
For years I have had to bear up against ignorance, unkindness and the veiled arrogance that accompanies a belief that another parent must be better than me because their lives are not touched by disability. Too often people repeat socially acceptable phrases about their wish for an unborn baby without thinking about who is listening to them. They babble themselves into a verbal quandary and then when they realise a parent like myself is part of their audience, we are stuck with having to process the funk created between us.
Such funk moments can be made up of and are not limited to the following:
1. “Thank God (my baby/her baby/their baby) doesn’t have any problems.” – Please if you must say this, do not say it in the presence of a parent whose child actually is a person with a disability. Parenting children brings different challenges. Believe me, I know. From parenting a child with a disability to parenting two non-disabled children, there are days I’m more thankful for the challenges I face with Savannah. Talisa and Eli have no issue with me saying that, because equally I can be heard expressing that sentiment when Savannah tries my patience. That’s the reality of being a parent.
It is challenging in the best of families. After having worked with families whose children acquired a disability later in life due to a medical condition or accident, I witnessed first hand how remarkable and unfathomable the love of a parent can be. How in the face of tragedy, a parent can cling to blind hope for years. So maybe when faced with sharing news of a new baby, we can try to say “Please God grant the parents strength and wisdom as they learn to love unconditionally”.
2. “You are amazing. A SuperMum.” – Please don’t dwindle my sacrifices, moments of heartache, frustration, resolution and tears in our fight for Savannah’s right to equality to “Super” anything status. When in truth we are not welcomed into society as Superheroes usually are. SuperMum, I am not. Just Savannah’s mum; doing and being what she needs so she can live a life with dignity and respect. It comes with a ridiculous load of heartache and loneliness. Not perks of a Superhero. I know by walking with Savannah through this life, trusting God’s love for her and for myself, that we both have discovered an extraordinary universe of faith, hope and love still unbeknown to many Superheroes.
3. “Oh wow autistic! Your child must be a genius.” – Why yes, if your definition of genius is being able to remember what every member of her family wore to church every Sunday for the last few years, then Yes! But said child may also be unable to work out how to dress appropriately for different weather conditions. For example, said child can wear shorts and T-back when the weather is below five degrees celsius.
People have different abilities and a parents’ love is not measured by what level of ‘genius’ their children may or may not possess. Frequently I have to debunk that genius definition of autism with: “No, she is not like Temple Grandin or the guy from Rainman. She is amazing in her own unique way, just not like those people.”
4. “You make it look so easy. But I couldn’t be like you”. – No, you can’t be like me. You can only be like you. You can only be the parent your child needs, not who my child needs. Statements like this, while intended to be flattering actually have the opposite effect. They convey the idea that there is a limitation on a parents’ capacity to love and those who exceed that capacity belong in a special group. It just adds to making a parent of a child with additional needs, feel more alienated and increases the likelihood of depression and loneliness. So please for all our sakes, parents and expectant parents, lets just go from the premise that parenting is the most profound role anyone can ever have, without making it about standards or comparisons.
My daughter, Savannah is a woman with a disability and can be frequently heard praying for other people and never for herself; because she sees herself as “Whole and Happy”. Talisa is an almost adult dreaming of her future where “Whole and Happy” will not be precluded by having a child with a disability. Their experience as sisters and as women who appreciate their own individuality without being made to feel that one is more of a blessing than the other, is rich and deep. So much so that when Talisa starts planning her motherhood journey, it will not be overshadowed by the notion of what she can’t be to someone she has yet to meet.
In my different areas of work and service, I get to speak to women from different ages and walks of life who are struggling with their own womanhood, motherhood and identity. Their stories matter and take up a great deal of my heart. But it is my own daughters who already have a residency there.
So I wrote this for my daughters, for when the world tries to rob them of their joy as women who understand a little something about ‘extraordinary’. I wrote this for women whose lives touch mine. For the expectant mother somewhere who needs to know this. And for the mum who is considering leaving her baby somewhere, anywhere because someone or something gave her the idea, that she is not capable.
I wrote this for the child who cannot fend for themselves and who may never be able to do so or may need much help because of having a disability. I wrote this because tonight they will be left in a hospital or a park or in a drain, unwanted by their parents but equally unwanted by the same society that will demonise the parents for giving them up. My own lived experience teaches me that too few people support parents with children with disabilities and even fewer will ever be heard confessing to welcoming such a blessing into their home.
A baby who is differently-abled, will need their family and their community to show up for them in remarkable ways. A child who is going to need extra help, extra support, extra anything, can also be the catalyst for ‘extraordinary’. The ‘extraordinary’ that changes our definition of success from counting accomplishments to being unable to count the depth of love a parents heart can hold while it tethers between heartbreak and joy over and over again.
This is the closest example of how much God loves me and what grace is available to me: That I am able and willing to love sacrificially and unconditionally.
This is also why I believe a blessing awaits anyone who welcomes a child. No further description of the child is needed. Selah
I have three children: Savannah (23 years), Talisa (17years) and Eli Michael (12 years). Savannah was born when I was eighteen years old. I was a single mother before marrying Michael. Savannah is autistic and is a person with cerebral palsy. She cannot live independently and I am her primary caregiver. I worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and am now employed in the child safety sector. I work for a non – profit organization that is a place of safety for babies who ultimately are adopted. I am also affiliated with another non – profit organisation supporting pregnant women in crisis. I have the rare insight of holding a space where these three groups meet – disability, unwanted babies and pregnant mothers. In facing my own parenting struggles and through my faith journey, I learnt a great deal about what people say they believe and what they actually believe. And so I write for the purpose of sharing different perspectives. I write to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. I write because I know what hopeless felt like when I believed the wrong words. I write because I know that Faith, Hope and Love abide.