Learning to Be the Mom They Both Need

When I found out about Beckham’s diagnosis, there were a million fears running through my mind.

But one of them had nothing to do with Beckham himself.

I was scared about what it would mean for my older son, Jaxson.

I knew Beckham’s medical needs would inevitably require a significant amount of our time and attention—especially during infancy, but also beyond it, too.

And I worried about what that would mean for Jaxson.

Would he feel forgotten? Would he feel like he wasn’t as important anymore? Would he ever question whether we loved Beckham more because so much of our time and attention had to go toward his medical care? Would he feel angry or resentful?

My heart ached for both of my babies—for Beckham and everything he might face, and for Jaxson and how much his world was about to change, too.

Telling Jaxson About Beckham’s Diagnosis

One of the first difficult things we had to navigate was figuring out how to tell Jaxson about Beckham’s diagnosis.

Until that point, Jaxson—just like Julian and me—thought he was simply getting a little brother. A typical baby brother who would eventually grow up to run around and play with him.

Suddenly, I was trying to process the fact that the future we had imagined might look different while also figuring out how to explain that to a 9-year-old.

I wanted him to understand, but I didn’t want to overwhelm him. There were so many unknowns before Beckham was born, and I certainly didn’t want to list every possible outcome and give him fears he didn’t need to carry.

I probably should have planned exactly what I was going to say or how I was going to say it.

Instead, it happened somewhat spur of the moment on a car ride home from soccer practice.

But as Jaxson’s mom, I know him well enough to know that a serious, sit-down conversation probably would have overwhelmed him. So when it was just the two of us in the car—and I wasn’t facing him directly in a way that might make him feel uncomfortable expressing his feelings—it somehow felt like the right moment.

I remember saying, “Bud, I need to tell you something, okay? We found out something about the baby. Something is wrong with his back.”

I explained, as best I could to a 9-year-old, that every one of us starts out incredibly tiny—like the size of a grain of salt—and that as we grow, our bodies have to form all of their different parts: our arms, legs, fingers, toes… and our backs.

I told him that while Beckham’s back was forming, something happened and it didn’t develop the way our backs had.

And I will never forget one of the first questions he asked me… 

“Does that mean he will need a wheelchair?”

I was surprised—and maybe even a little proud—that he had been able to make that connection so quickly.

But hearing him actually say the word "wheelchair" out loud also broke my heart.

Because I was still trying to accept that possibility myself.

I told him the truth: that we didn’t know yet. There were still so many unknowns and so many possibilities, but yes, Beckham could possibly need a wheelchair someday.

And then his voice got quieter.

I could tell he was trying not to cry when he said, “But I don’t want him to need a wheelchair.”

My heart shattered.

I struggled to find the right words. Looking back, maybe my responses weren’t perfect. But none of us had a script for this. We were all trying to navigate incredibly emotional news that we were still learning how to understand ourselves.

I tried to acknowledge what he was feeling.

“I know, Bud. Julian and I don’t want that either, but unfortunately, we don’t get to choose.”

And then he asked me one of the same questions I had already asked God more times than I could count:

“But why us?”

To be honest, I don’t even remember exactly what I said.

Because I was struggling with the very same question.

Then He Met His Baby Brother

And then Beckham was born.

Something changed once he was no longer a diagnosis, an ultrasound image, or a list of frightening possibilities.

He was just Beckham.

I felt it myself the moment I finally saw his sweet face. All of those fears were still there, but suddenly the love I felt for him was so much bigger than any of them.

And I watched something similar happen with Jaxson.

I will never forget his face when he met Beckham for the first time—or how he practically ran to his NICU room because he was so excited to finally meet his little brother.

The diagnosis didn’t disappear.

But now there was a baby attached to it.

His sweet baby brother.

Navigating His Emotions

Since then, some of Jaxson’s fears have lessened, but they haven’t completely disappeared.

He still asks whether Beckham will walk. Whether he’ll need a wheelchair. And one of the hardest things for him to understand and accept has been learning that Beckham uses the bathroom differently.

There have been nights with tears.

There have been questions I don’t always have answers to.

There has been frustration, sadness for his brother, and more “Why’s?”

And as his mom, that hurts in a completely different way.

Because I’m not only carrying my own emotions about Beckham.

I’m watching my other child carry some of them, too.

The Mom Guilt I Was Afraid Of

And then there’s the part I worried about before Beckham was even born—the guilt of feeling like I don’t always have enough of myself to give to both of my children.

I already feel stretched so thin sometimes, and I worry that Jaxson isn’t getting the time and attention from me that he deserves.

There are so many times I find myself saying:

“Hold on.”

“Shh, Beckham’s sleeping.”

“Can you get it yourself?”

There are times Jaxson has to wait to tell me something he’s excited about because I’m feeding Beckham, cathing him, giving medication, or tending to whatever he needs at that moment.

There are times he has to do things for himself simply because my hands are full.

And there are times when something he wants—or something he needs from me—has to wait while I take care of something for Beckham that simply can’t.

That’s an important distinction I’m starting to recognize.

It isn’t that Beckham needs his mom more than Jaxson does.

They both need me. They just need me in different ways.

Right now, so many of Beckham’s needs are physical, medical, and time-sensitive. He needs to be fed. He needs to be cathed. He needs medication. He has doctor’s appointments and therapies that have to happen at certain times.

Jaxson’s needs don’t always come with a timestamp.

Sometimes he needs to tell me about something that happened that day.

He needs me sitting on the sidelines at his soccer game.

He needs help with something.

He needs someone to listen when he’s frustrated or upset.

And sometimes he just needs his mom’s undivided attention.

But because those things can often wait, I’m afraid they sometimes will.

That’s where so much of my guilt comes from.

I’m sure some of this is simply part of having a newborn. I’m sure plenty of parents with typically developing, healthy babies experience the same guilt when they bring home another child. Babies require an enormous amount of attention regardless of their medical needs, and an older sibling inevitably has to adjust to no longer having their parents’ undivided attention.

But I think what makes this harder for me is knowing that some of it may not end when we leave the baby stage behind.

When the Baby Stage Ends, the Medical Needs Won’t

Beckham will grow, but his medical needs will grow and change with him.

I don’t know what his care will look like in one, five, or ten years from now.

But I do know there may always be seasons when Beckham’s medical care consumes a significant amount of my time.

And I also know that Jaxson won’t stop needing me simply because his brother’s needs are different.

As he grows, what he needs from me will change, too.

There will be school, friendships, sports, accomplishments, disappointments, heartbreaks, and all of the ordinary parts of growing up when a child still needs his mom.

His needs may not always come with an appointment time or medication schedule.

But that doesn’t make them any less important.

That’s the balance I’m trying to figure out—how to give Beckham everything he needs medically without allowing the urgency of those needs to overshadow the quieter ways Jaxson needs me, too.

Because I don’t ever want Jaxson to look back on his childhood and remember constantly being told to wait.

I don’t want him to feel like his accomplishments weren’t as exciting, his problems weren’t as important, or what he needed from me mattered less. I never want the urgency of Beckham’s medical needs to unintentionally send Jaxson that message.

And maybe that’s something I’m going to have to consciously remind myself of along the way.

Watching Their Relationship Grow

Even through all of the difficult conversations, questions, and guilt, one thing has become incredibly clear:

Jaxson absolutely adores his little brother.

His love for Beckham is palpable.

He already worries about him. He wants to protect him. He wants to make him smile and laugh. He wants to love on him and be his big brother.

And maybe that’s something I couldn’t fully understand when I was pregnant and terrified about how Beckham’s diagnosis would affect Jaxson.

Yes, it has affected him.

And it will continue to affect him.

There will probably be more difficult conversations as he gets older and understands more. There may be times when Beckham’s appointments change our plans or his medical care requires more of our time. There will probably be moments when Jaxson feels frustrated, sad, or even angry about that—and I want him to know he’s allowed to feel those things, too.

But I also hope that when he looks back, those aren’t the only things he remembers.

I hope he remembers how excited he was to meet his baby brother.

I hope he remembers making him smile and laugh.

I hope he remembers how much Beckham looked up to him.

And most of all, I hope he always knows how important he is, too.

Learning to Be the Mom They Both Need

I don’t think I’ll ever completely stop feeling guilty about how I divide my time between my children.

Maybe that’s just part of motherhood.

And maybe raising a medically complex child adds another layer to a feeling so many moms already understand.

I’m learning that being their mom doesn’t mean dividing myself perfectly in half.

It means learning who needs what from me in that moment—and recognizing that those needs may look completely different.

There will be seasons when Beckham’s medical care consumes more of my physical time and attention. But that doesn’t mean Jaxson needs his mom any less.

And part of this journey for me is learning how to recognize and make space for both.

I’m sure I won’t always get the balance right.

There will be days when we ask "why"?

Days when we cry.

Days when we’re angry.

Days when things feel unfair.

But there will also be laughter. Soccer games. Baby smiles. Big-brother hugs. Ordinary days at home. Milestones worth celebrating for both of my boys. And hopefully plenty of moments when Jaxson and Beckham are simply brothers.

Maybe the goal isn’t to perfectly divide my time between them.

Maybe it’s learning how to be fully present for two children who need me in very different ways—and making sure that through all of the appointments, interruptions, hard conversations, and moments when something simply can’t wait, neither of them ever questions how deeply loved they are.