Mother’s Day: A Few Thoughts On Bonding & Being There

Around Mother’s Day, I often find myself reflecting on what it truly means to be a mother. I remember vividly the excitement and anticipation I felt when pregnant with my first son, Mason. Like many new mothers, I had grand visions of the type of mother I would be and the special ways I would bond with my kids.

I thought to myself, I love traveling; I can’t wait to take them to far-off locations and show them the world. I love comedy and humor; I can’t wait to be silly, make them laugh, and fill our home with giggles. I love a good time; I am going to be the epitome of the “fun mom.” and open their eyes to the “joie de vivre” and teach them to “carpe diem.” We’ll bond through music, movies, travel, sports, etc.

But do you know what I’ve learned over the years asa mother? I’ve learned that what my kids genuinely want from me is someone they can trust, who shows up for them, and who’s there.

When motherhood becomes a reality instead of a theory, we see all too clearly how all our little plans and ideas can go right out the door. There are sleepless nights, unexpected illnesses, and toddlers that don’t abide by our plans and ideas. It’s hard to be the “fun mom” when you’re exhausted from the relentless demands of daily life. There are school schedules, work deadlines, financial constraints, and sometimes (most times) traveling to far-off locations isn’t in the cards. It’s hard to “carpe diem” when the laundry is calling, and the grocery shopping needs to be done because you and your people must eat and have clothes to wear. Then, enter a rare disease and forget it; the whole thing is turned upside down. Nothing makes sense, and you’re busy trying to save your kid’s life or uphold their health that is at risk.

So, all these realities differ from your ideas and expectations. Reality has a funny way of reshaping things, doesn’t it?

So, there I was… a soon-to-be new mom with all these ideas on how I would bond with my first son Mason through sports, music, his interests, or our shared common interests. And we do bond over those things. But I think we got close through the days when I was helping him with homework.

I remember when he was younger, he was impatient with homework, thinking he should be able to grasp everything right away and feeling frustrated when he couldn’t. I’m an impatient person, and his impatience made me even more impatient. So, picture two impatient people sitting there; the tension was palpable. I prayed for patience. Oh man, did I pray for patience because it was being tested! But we stuck it out, and I kept showing up night after night even though sometimes I had a zillion things to do because I knew it was important to him. It was also important to me to show him to work hard, not give up, and to see that I was there for him. And even though there were many times that I didn’t understand the work or know the answers, I would just be there. And he could look over and see that I was there.

Looking back, I can see that through those challenging moments, we didn’t just complete assignments – we built trust and a deep-seated bond that has endured through the years. I can now understand that it wasn’t so much the homework we bonded over as much as it was that I was there by his side through a challenge. It was the dependability. So, when he feels frustrated or unsure or needs support, he knows he’s got me to rely on. And that matters to him. And it got me thinking: that’s what my kids want from me. I’m no psychologist, but perhaps that’s what all kids want from their mother. To know she’s there. To know she’s available to them. To know they have one person in the world they can count on that they have somebody who will see it through. Someone who won’t turn them away. Someone who will show up and stick it out.

My mom was that person to me.

Even when I went through high school and was a sassy and know-it-all jerk (who me?), she never shut me out. Actually, she leaned in. She dug in; she saw the hurt beneath the behaviors and reactions. Because she dug in and I trusted her, I could open up and get guidance from her.

I think of how different it would have been had she taken how I acted personally and shut me out. I wouldn’t have had that one person in the world who knew my heart, who could see past my teenage emotions, and who I could trust would love me no matter what.

Now, looking at it, it makes sense that Mason and I formed a bond because he knows that I’ll be there through a challenge. Sometimes, it’s about showing up with impatience and imperfections but with a willingness just to be there. It builds security, which gives our children the confidence to move along in the world.

I can get in my head about trying to be all the things to my kids, to be all-knowing, and get it all right. But often, it’s just as simple as being there for them.

The same is true with our children with rare diseases. In the face of challenged cognitive or physical abilities, perhaps we aren’t able to bond through sports, arts, travel, or whatever it may be because those things may be challenging or inaccessible to our children. As mothers of children with rare diseases, our journey may diverge from the traditional path, but our commitment to being there for them remains unwavering. Whether we accompany them to doctor’s appointments, hold their hand through scary procedures, or simply offer a comforting presence during moments of uncertainty, our love and support provide them with a sense of security and reassurance.

Yes, this is not the exciting childhood bonding we imagined. But it’s in these moments of struggle that our bonds with our children are truly forged. It’s not the elaborate outings or extravagant gestures that leave a lasting impression; instead, it’s the simple act of showing up, time and time again, with love, patience, and unwavering support. This builds trust and gives our children a sense of security, knowing they have someone in the world who will show up and stick it out with them.

Is it disappointing that we can’t bond in the ways that I had envisioned? Yes, it is. Do we find other ways as best we can? Yes, we do. But I am realizing that all the extravagant adventures or constant entertainment mean nothing without the trust, support, and security of our children, knowing they have someone they can depend on. I have realized that my children crave something much simpler yet profoundly significant—they need me to be there for them unwaveringly.

I don’t need to have it all figured out. I don’t need to have all the answers. I don’t have to be strong all the time. When my son is about to face a complex surgery, and he’s scared, and I’m trepidatious too, I can show up scared and hold my son’s hand, and we can brave what’s scary together. When he’s facing a challenge, and he looks over and sees me by his side, that’s where bonds are formed. That’s where relationships are built, in the hard, challenging, frightening moments when we walk with each other through the fire.

When we say I will, I stand with you. I will be the person who doesn’t give up on you. I will be the person who doesn’t look away. I will be the person who’s there.

Motherhood is such a precious gift in that it allows us the opportunity to be that person to another being. It’s the gritty, messy, selfless, unsexy sacrifice and endurance of truly loving another being with your whole soul so that they know they are loved and held. And to me, that’s a very precious way to spend my time on this earth, truly connected to another in this way.

Learning that I don’t need to have all the answers, and even though I am flawed, I can show up and simply be there, has been encouraging to me as I raise my children and as I navigate life with a rare disease.

And so, as rare mamas, if we keep showing up and being there for our children through the challenges and the triumphs, we build these strong bonds. We build foundations of support, and our children feel loved, honored, and secure.

I still have aspirations to be the fun mom. I still have aspirations to show my kids the world. I still have aspirations to make them laugh and to “carpe diem.” But above all, what I know is this: I will be there, and I will try my best. And I know that’s what you all are doing, too.

So, on Mother’s Day, here’s to you, Rare Mamas. A big fat shout-out to all of you for showing up, being there, and finding the beauty in being there.

Whether you spend Mother’s Day at a fancy location, at home, or at a hospital bedside, you’re doing such beautiful work simply being there. Happy Mother’s Day!