To the Moms Who Keep Showing Up…
Mother’s Day always gives me a moment to pause and reflect on the gift of being called Mom.
I am a mom to three children, and each of them has stretched me, softened me, challenged me, and taught me in ways I never could have expected. Each of them has their own needs, their own personalities, their own joys, their own struggles. That is true for every child.
And Jack has Down syndrome.
It looks different.
And it also looks the same.
Motherhood, no matter the child, is filled with advocacy, worry, joy, sacrifice, exhaustion, pride, and love. But there are parts of raising a child with a disability that carry a different kind of weight. A weight I don’t always know how to name. A weight I sometimes need other moms in my life to help me recognize I have been holding.
Moms advocate for their children. It is part of the title.
We ask the questions. We follow up. We notice what others miss. We carry the details. We remember the appointments, the paperwork, the forms, the schedules, the conversations, the concerns, the things said and unsaid.
But when you are raising a child with additional needs, the advocacy can feel constant.
We have to ask if our child can join the program.
We have to explain what support might be needed.
We have to keep showing up and asking, “Are you okay with additional needs?”
We have to coordinate communication between teachers, therapists, coaches, doctors, specialists, caregivers, family members, and everyone else who plays a role in our child’s life.
We have to make sure people understand our child is capable.
We have to make sure they are safe.
We have to make sure expectations are high enough, but support is strong enough.
We have to prove that we care so deeply, hoping others will care too.
We have to show that we are willing to go the extra mile, while quietly hoping someone else will also choose to go the extra mile for our child.
And it is a lot.
It is not the same.
And it is okay to say that.
I think I have sometimes hesitated to say it is hard because we live in a world that still does not fully understand the worth of people with Down syndrome. We live in a world where, prenatally, there is a choice given for this journey. And because of that, I can feel the pressure to only share the beautiful parts.
I want people to see Jack’s joy.
I want them to see his humor, his determination, his hugs, his opinions, his love for his people, his ability to light up a room, his desire to belong, his worth.
I do not want anyone to look at him as less than.
I do not want someone to hear that a season is hard and feel thankful this is not their life.
I do not want vulnerability to become permission for pity.
And yet, I also want to be honest.
Because there are hard seasons.
We are in one right now.
There have been extra meetings, extra conversations, extra follow-ups, extra concerns, extra coordination, and extra advocacy. So much emotional energy spent trying to help others see what we see in our son.
There have been moments where I have felt like I am not only advocating for services, support, or understanding, but reminding people to care. Reminding them to see the child before the diagnosis. Reminding them that behavior is communication. Reminding them that support should be proactive, not reactive. Reminding them that Jack is not a problem to manage, but a child to understand.
That kind of advocacy is exhausting.
And it is also sacred.
Because our children are worth showing up for.
Every single time.
I think so many moms understand this in their own way. You may not be sitting in an IEP meeting or explaining Down syndrome or asking if a program can accommodate your child’s needs, but you know what it feels like to carry concern for your child. You know what it feels like to wonder if they are okay. You know what it feels like to want the world to be kind to them. You know what it feels like to keep going when you are tired because love gives you no other option.
Motherhood makes us strong.
But sometimes I think we forget that strength does not mean we are not tired.
Strength does not mean we do not need help.
Strength does not mean we never cry in the car, replay conversations in our head, or wonder if we said enough, asked enough, pushed enough, or held it together enough.
Strength sometimes looks like asking another mom, “Is this as much as it feels like?”
And having her look back at you and say, “Yes. It is.”
Sometimes we need someone else to help us name what we have been carrying.
Sometimes we need someone to remind us that we are not failing because we are weary.
Sometimes we need someone to say, “You are doing a lot. And you are doing it with love.”
I have learned that motherhood is both ordinary and holy.
It is packing lunches, finding shoes, wiping counters, driving to practices, scheduling appointments, sending emails, and making dinner.
And it is also fighting for your child to be seen.
It is believing in them before others understand.
It is holding both the grief and the gratitude.
It is celebrating progress that others may not even notice.
It is learning to ask for help.
It is realizing that you are stronger than you thought, and also more in need of community than you ever imagined.
Jack has taught me so much about life, love, worth, and perseverance. He has taught me that progress is not always fast, but it is always worthy of celebration. He has taught me that communication comes in many forms. He has taught me that belonging matters. He has taught me that people do not need to achieve, perform, or prove themselves to be valuable.
And in this season, he is still teaching me.
He is teaching me to keep showing up.
To take a breath.
To ask for what he needs.
To trust that the hard does not erase the good.
To remember that his life is not a burden.
The systems may be hard.
The advocacy may be hard.
The misunderstandings may be hard.
The extra coordination may be hard.
But Jack is not the hard part.
Jack is my son.
A brother.
A friend.
A student.
A child made with purpose.
A boy with a life worthy of dignity, belonging, opportunity, and celebration.
So to the mom who is carrying more than people see this Mother’s Day, I see you.
To the mom sending one more email, asking one more question, explaining one more thing, and hoping others will see what you see, I see you.
To the mom who loves her child fiercely and is also tired, I see you.
You are not weak.
You are not complaining.
You are mothering.
And sometimes mothering means celebrating. Sometimes it means advocating. Sometimes it means grieving what is harder than it should be, while still knowing with every part of you that your child’s life is good.
The hard does not erase the beautiful.
The extra does not make our children less worthy.
And the weight we carry is not proof that something is wrong with our children, it is often proof that the world still has more to learn.
So today, take a breath.
You are doing sacred work.
You are loving well.
And your child is worth every bit of the showing up.
Happy Mother’s Day.
-Carissa
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