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Motherwhelmed and Wanting More - A Snapshot of Disability Parenting

Posted on Aug 16, 2019
Dilshad Ali


Editor's Note: This article is part of a summer series we are producing on "Marriage and Families - A Multifaceted Landscape." We are covering Prophetic examples of marriages, blended familiesquestions to ask before marriage, courtship traditions in modern times, the post-divorce landscape, single parenting and other topics from a Muslim-centric perspective. Check into the blog throughout the summer to read our series.

I felt motherwhelmed today - overwhelmed by the emotions, responsibilities, challenges, joys and heartaches motherhood encompasses. If I am to be accurate, I've been feeling motherwhelmed most of this summer. Most of my parenting life, actually. I imagine that many of you who are mothers, caregivers and/or mother-figures to people in your lives have felt this way at some time or another. 

It can feel a bit like drowning, this feeling, under the weight of motherhood's waves. And whether we are mothers or not, as women we are often inclined to feel we have to do it all - take on any and all challenges at work, be present in our relationships, find that mind-body balance, care for our loved ones and so much more. I'd argue that this all is amplified even more when one (or more) of your children are disabled or chronically ill in some way, as is the case in our family.

D, coloring his masterpieces

My son D coloring his masterpieces. Below is a photo of D in his favorite rocking chair and one of D and I on Eid ul Adha.

A few weeks ago, as we concluded a meeting here at work, I got to talking with Alice (our marketing manager) and Mona (our social media specialist) about that feeling like you are drowning under the weight of everything you not only have to do, but want to do. 

Have you felt this before? I bet you have. I often wonder how to cut through this feeling - this overwhelmed/motherwhelmed feeling. It's gets so that it feels very normal, very much what our everyday lives are - especially in the realm of disability parenting. And yet ... yet ...

I've been writing our stories of faith, family and autism for years now. There is not one post that can capture a full snapshot of what this type of parenting is like. But if you've been a follower and reader of my writing and my social media sharing of autism advocacy and disability parenting, you've gotten decent glimpse into this life.

I've spent a good part of this summer curating this series on family/relationships/marriage for Haute Hijab, and it's led me to reflect on my own parenting life, especially with my children now being a bit older (19, 16 and nearly 12 respectively) and how our family challenges are in some ways easier and in other ways harder now. Disability parenting is just like parenting in general - the struggles, fears, love, joy, worries, mistakes and questions.  But it's more - it's a deep dive into a pool where you're often drowning while living. Where you make it to the surface only to submerge again, eventually learning to grow gills and breath under water.

I wrote the following post several years ago, and want to share parts of it with you now - a look into this world and its complexities, with a promise that has sustained me even when I'm hanging on by a tenuous thread - Allah (S) knows what He is doing, especially when I do not and I just do not understand. And so I submit.

On the Small Moments that Shape Us 

There are the articles, posts, op-eds and stories that are the important ones. The BIG ones. The ones to affect change, get you thinking, expose a problem, right a wrong, grow awareness for a cause or situation, promote activism or convey a story that needs to be heard.

Then there are the ones that are seemingly nothing – the sharing of a thought, an experience, a feeling. Take what you want from it. Maybe sharing it is just an exercise for the writer to get out what she is feeling in her brain and in her heart, without any hopes or expectations of the reader’s experience. Maybe writing it is an act of love. An act of inviting you in to share that love, be uplifted by that love and feel something solid in that love.

Feel more love than hate. More joy than hurt. More peace then struggle. More better than worse. More right then wrong.

D in his rocking chair

I’ve been thinking a lot about family dynamics. About how when one of your family members has special needs/disabilities and challenges, it requires reinventing, continually massaging and releasing expectations of those family dynamics. About how it takes a lot of stretching, bending, supporting, trying, helping, accommodating, celebrating, crying, laughing and loving to find a solid path for the loved one who needs more care and extra support and for all the loved ones around him.

Our family dynamic is chugging along. Alhumdulliilah, there are no major issues other than the daily major issues (autism and otherwise) we are already used to. And yet there seems to be a constant, nagging state of overwhelmness. I’m feeling motherwhelmed, actually (no, I didn’t make up that word – read it somewhere) – much like so many others, but in ways unique to our own family.

For me, this autism life have been a letting go of self. Motherhood is much of that anyway. The early years seems all about everyone who is not you – your kids, your family, your kids, your kids. The physicalness of it all is utterly beautiful and draining. You get to where I am, with teens and almost-teens, and the path has turns yet again. We’re at that point where the franticness of figuring out D’s autism, how to help, how to lessen that which is tough, how to get him to communicate, how to understand all that we don’t understand and how to help him have good health has given way to, well, the same, but different.

I’m wiser, more attune to him, to his personhood, to his rights and needs, to not expecting all of him to change for the world, but to also expecting the world to change for him. To recognizing how much health, and the pursuit of the best health possible, matters. To still struggling with my anger, despair and frustration at what is so hard for him while separating it from the love I have for him in all his glorious self.

There is so much I want for him, so much I want to do, but that is tempered by us having three children, not just one. (Which I love. Life would not be the awesomeness that it is without all three of them.) Our family dynamic also requires me to share focus with all our kids - balancing their needs and the thoughts, opinions and needs of their Baba. Balancing all this with my own work and the huge amounts of supports D needs in all aspects of his day. It’s the same in most multi-children families, I’m sure. But the dynamic is that much more complicated over here, like it is for most families where a loved one has special needs.

D and his Mamma, Dilshad

Motherwhelmed. Wanting to feel more love than hate. More joy than hurt. More health than sickness. More peace than struggle. More better than worse. More right than wrong.

Last week I sent D to school and half an hour later received the call no parent wants to hear. We spent some time in the ER of a nearby hospital, and then I brought him home and spent the afternoon in his room with him. Far enough that he wouldn't have to feel stifled by me, but close enough to let him know that I was there. I pray that I'll always be there.

Hold onto the moments, I tell friends who describe when they are feeling overwhelmed by all that is their lives. The brilliant, special, fun, extraordinary, warm moments that flare brightly before fizzing out into the daily grind. That’s where you’ll find your more. It’s easy to say that to others. Not so easy for me to do myself. So I remind myself - fa inna ma usri yusra. Inna ma usri yusra. "Verily with difficulty there is ease. Verily with difficulty there is ease.