Making It Do What It Do On The Hard Days With Jace

Making It Do What It Do On The Hard Days With Jace

Some days I wake up tired before my feet even hit the floor! Have y’all ever been there, where the morning is already asking for more of you than you think you have, and still you stand up anyway because love will not let you lay down and quit. I am a mama to a medically complex child and that means the clock does not clock out, but honey let me tell you something that keeps me going, even when my bones ache and my eyes are burning, my Jace still finds a way to smile at me, and that smile is like sunlight sneaking through heavy curtains, quiet but faithful, steady but bright, and I let it warm me while I figure out the rest.

The night everything changed

Jace was born typical, my baby was out here hitting milestones like he had somewhere to be, holding his bottle, rolling forward and back, mimicking sounds and trying to catch my words like little birds. One evening when he was four months old I was leaving nursing school and stopped by the sitter to pick him up, he reached for me for the very first time and y’all my heart did a little dance, I kissed his cheeks and took him home, we did our bedtime routine, and then he spaced out and something in my spirit said this is not right. I knew enough from my training to recognize that seizures are not always shaking, so I called his doctor, we went through the questions and waited, and when it happened again we rushed to the emergency room with my parents by my side.

That hospital became our home for the next four months, a maze of beeping machines and whispered prayers and nurses who learned Jace’s favorite lullabies, and during those long nights I kept turning him and caring for him and learning new ways to speak up for him, because when you are a mama you become fluent in your child’s needs whether you expected to or not.

Four months that felt like forever

They discovered he was having subclinical and clinical seizures and they tried to protect his brain by placing him in an induced coma while they searched for answers, six weeks of watching monitors and waiting on rounds and believing for good news, six weeks of signing forms and asking questions and holding on to his little fingers with my whole heart. There was talk of brain surgery and then there was another MRI and then there was the hard news that the seizures were not in one place so surgery would not help. I asked them to bring him out of the coma and at first there was hope that his brain had been protected, but a mama knows her baby, and when his head felt different I kept asking until they looked again. The next MRI showed changes that broke me open, and based on how quickly things had shifted they told me he might have weeks or months to live. That was my first Mother’s Day.

I chose quality of life over quantity of days and decided to bring him home surrounded by love, I signed those discharge papers with tears in my eyes and a prayer in my mouth, and we went home to a new kind of life, one appointment at a time. For that first year we were in and out of specialist offices at least once or twice a week and folks would come by just to see the baby who kept beating the odds, and every time he smiled I said thank you out loud because gratitude helps hold you together when the facts are sharp.

Home, with hope

I learned our rhythms. Alarms and meds and equipment checks. Night watches and morning cuddles. I learned that I could be both tired and thankful. I learned to celebrate quiet miracles like a full night with fewer alarms or a new toy with lights he could see in a dark room. I learned that joy is not shy, it shows up even in hospital discharge summaries and early morning feeds and the last clean shirt on a laundry day that got away from you.

Today at Fifteen

Jace is fifteen now and he is total care, he cannot do anything for himself, but he is so full of life that I feel it in the room before I see it on his face. He is visually impaired but he knows my voice and turns toward me like the sun follows the morning, he loves to cuddle, he laughs and babbles, he dances with his whole body when he is excited, and he lights up for shows with music and toys that glow in the dark because those lights make sense to his eyes. Some days his personality goes quiet and flat and I respect that too, because even joy needs rest. We do not have a two parent household and I wish we did, but we make it do what it do, I am the nurturer and the provider and the fixer and the one who keeps the calendar and the courage. And on the days when everything falls at the same time, I remember that falling is not failing if you fall forward.

What I want you to know if you are a mama like me

I know people see us smiling and they think we are always okay, but some of us are carrying pain that does not show up on our faces, and I want you to know that you are allowed to be both strong and hurting, both grateful and grieving, both hopeful and honest. You do not have to choose one to prove you have the other. If you are in the thick of it, here are gentle steps that help me breathe when the day gets heavy.

1. Name the moment. Whisper it if you need to. This is hard.
2. Find one thing you can finish. Fold two towels. Refill the med drawer. Text the school nurse.
3. Borrow light. Open a window. Turn on a song. Hold a glowing toy with your child and watch it pulse together.
4. Ask for one thing. Not ten things. One thing. A meal. A ride. A prayer.
5. End the day with gratitude that is small enough to hold. He smiled. The monitor stayed quiet. I made it.

If you support a mama like me

You are part of the miracle. Say her child’s name. Offer something specific. Sit with her while alarms go off. Celebrate the tiny wins. Do not pity her. See her; really, see her. If you do not know what to say, try this, I am here, what is one thing I can take off your list today, and then do that one thing without making her manage you.

A quiet word about faith

My faith holds me but I do not always quote scripture to prove it, I live it in the way I keep showing up, in the way I ask for help and keep my heart soft, in the way I let joy and sorrow sit at the same table. If a verse meets you today, let it be a gentle reminder that you are seen and carried, and if not, let the truth be this, you are not alone.

Try this with me today

Take five minutes and write one sentence about what hurt, one sentence about what helped, and one sentence about what you hope for tomorrow. Put those three sentences on a sticky note near the coffee maker or the bedside. Read them in the morning and let them guide one small choice. We are building tiny bridges to the next day and that is still victory.

Takeaway to carry

When the day asks for more than you have, borrow light, finish one small thing, and remember that love is the kind of strength that does not look loud but never runs out.

If this met you today, leave a comment and tell me your one thing that helped, so another mama can borrow it when her day gets heavy. I am rooting for you, always.