The following is shared by HI mother Maureen:
Mother’s Day comes around quietly each year, in a beautiful time of the year, spring. If all is well, it does not ask too much from us as mothers, but it always invites me into a moment of reflection.
Caring for a child with HI is not light. It brings a constant awareness that does not switch off. There is planning, checking, adjusting, and always thinking a few steps ahead. Nights can feel short. Days can feel full before they have even begun. It asks for energy, focus, and a form of resilience that grows over time.
There is also a mental load that we as mothers often already carry. Think of a school bag, where nothing can be forgotten. For a child with HI, that backpack is always just a little fuller. There is always something extra to take into account, something to be prepared for. As mothers, we carry that load as much as possible for our child, wherever we can.
The feeling of being a mother in this situation is not always easy to carry. There have been so many moments where I thought I would want to start over. That I would want to have her again, with HI or without, and do it better this time. Not because I did not do my best, but because I know more now. Because I see things differently now. HI has taught me so much. About planning, structuring, preparing, and the human body. HI is a lifelong education.
But the truth is that I have always done what I believed was right and needed in that moment.
From day one, you are in it. You fight for your child without hesitation. And when it is your first child, you have nothing to compare it to. You do not know what motherhood looks like without the extra care, the extra responsibility, the constant attention. This becomes your normal. This is simply what it is.
In the years that follow, you learn. You gain knowledge, experience, and confidence. It does bring a silent frustration at times, because you cannot start over with everything you now know. That stays.
It does hurt to see that at the beginning, there were things you simply did not know. Things that led to small scars, both literal and figurative. But we cannot go back. We cannot repair what we did not yet know. We can only keep looking forward with trust. Trust in our maternal instinct.
For me, it makes a huge difference that my own mother is part of this journey. Not because she can fix everything, but because she stands next to me. She understands, she helps with the practical things, and sometimes she is simply there when things feel heavy. That kind of support is not loud, but it is constant. And it means more than I can easily put into words.
There have been days when I dropped our daughter off at her place, relieved that I could take a breath for a moment. A moment where HI did not define my entire life. Mom, I needed those moments so much when she was still very young.
At the same time, I think of the mothers who do not have that support. The mothers who miss their own mother, especially on a day like today. That absence can be quiet, but very present. I also think of children with HI who are missing their mothers today because they are no longer here. Today, they are in my thoughts as well.
Motherhood, especially in the context of HI, asks a lot. It asks you to keep going, keep learning, and keep showing up. Not perfectly, but consistently.
So today, I keep it simple. Recognition for the work that often stays unseen. Gratitude for the support that is there. And a moment of attention for those who carry both love and loss at the same time.
Let us be kinder to ourselves. We cannot undo what has already happened. We can only make sure that we stay standing in this challenge called HI. Ask for help in time. I know I have fought alone for too long and too often. Motherhood in HI can feel lonely. In the end, only those who have been in the same boat truly understand. I have been lucky that my husband is an involved and supportive father. But I also know stories where that is not the case. I hope that, wherever you are in this journey, you feel supported.
And if you ever feel you have the space, maybe when your child is older, do something for a parent who is just starting this journey. This can take many forms. It can be by responding in parent groups to questions from new parents, or by completing HIGR surveys, helping parents of young children with HI understand whether something may or may not fit HI. This can make a real difference.
Happy Mother’s Day.
Small note: fathers, partners, and grandfathers can also play a large and valuable role in this journey. This blog is written for Mother’s Day and is therefore primarily focused on mothers.
