Listening and Learning From Other Families
If you’re new to my journey here at Hope Between the Hard, SDR (Selective Dorsal Rhizotomy) is a spinal surgery that helps reduce spasticity and improve mobility for children with cerebral palsy. It’s a major, life-changing decision — one that takes time, research, and courage to make.
Before our daughter’s surgery, I spent countless hours reading posts and watching videos from other parents in online cerebral palsy communities. Some described smooth, uneventful recoveries — their children’s tone relaxed, pain was well managed, and progress came quickly. Others shared more difficult stories — pain, setbacks, and slow returns to movement.
What I learned from those experiences was simple but freeing: there is no single “right” recovery story. Each child’s path looks different, and that’s okay.
With that in mind, I want to share what our first two recovery days looked like — not as a rulebook, but as one small, honest story of hope and healing.
Day 1: Quiet Gratitude
During this week at the hospital, we kept our room at the local house near the hospital that caters to families with children in the hospital (like a Ronald McDonald House). That way we could have the option to take breaks during the week to shower or have the option for one of us to sleep on a bed rather than in the hospital room. The night after surgery, I went back to the house so I could get a “good” night of sleep before taking over hospital duty for a few days. It wasn’t great sleep — I tossed and turned — but it was better than nothing and still better than the night before surgery. When I woke up at 6 a.m., there were no text updates from the night. I took that as a good sign.
When I arrived at the hospital, our daughter and my husband were both still asleep. When my husband woke up, he told me the night had gone smoothly — she had some wakeful moments and wanted movies playing on repeat, but overall her pain was under control and she was able to rest. Seeing her resting peacefully felt like a deep exhale after holding my breath for days.
A Beautiful First Glimpse
The plan for Days 1 and 2 was simple: keep her flat on her back so the incision could heal and keep her comfortable. When she was awake, she was basically in heaven — watching Moana, Frozen, and Encanto on repeat (honestly, every 4-year-old’s dream… minus the hospital bed).
She picked at food here and there — mostly crackers and Jell-O — and had her first visitors when Grandma and Grandpa came by. I could tell it was hard for them to see her in the hospital bed, but we reminded them that she was doing exactly what the doctors wanted.
While they were visiting, her neurosurgeon stopped by. He asked if we’d seen her incision or noticed any changes in her tone yet. We hadn’t moved her much yet, more so afraid of moving her too much, so he encouraged us to take a look together.
When we pulled back the blankets and saw her legs, I almost couldn’t speak.
Her feet were relaxed. Her ankles were loose. Her knees bent easily and naturally.
That might not sound like much to someone outside the cerebral palsy world, but for us — it was everything. Just two days earlier, we had to fight her spastic tone just to put her AFOs on, with her muscles resisting every stretch. Now, her legs lay soft and still, her feet slightly turned out, and her body at rest. I gently lifted her leg, bent her knee, and tears filled my eyes. For the first time in years, I could move her leg without resistance. Was this what her new normal could be?
The rest of the day stayed quiet — and we were grateful for that.
The plan was comfort and rest, and that’s exactly what we got. We listened to Disney movies and music on repeat, tried to relax in those notoriously uncomfortable hospital chairs, and just soaked in the fact that she was comfortable and healing.
That evening, my husband headed home to work for a few days, and it was just us girls. We said our “see you laters,” then settled in for the night. I kept the movies playing quietly, read for a while, and drifted off in the recliner beside her bed — thankful for a peaceful day.
Day 2: More of the Same (And That’s a Blessing)
If Day 1 was calm, Day 2 was almost identical — and we were so okay with that.
No surprises, no emergencies, no new concerns. Just slow, steady progress.
That afternoon, my mom arrived to stay with us for a few days, and her presence was another blessing. It allowed me to take breaks — to shower, to step outside, and to sleep in a bed again. It’s such a hard balance as a medical parent: your child wants you near constantly, you also don’t want to be too far away, but you also can’t pour from an empty cup. Having my mom there made that balance a little more possible.
Our daughter was more alert that day, talking more and clearly enjoying the extra attention. We decorated her room with the cards and gifts friends had sent, brought out her fuzzy headbands (which the nurses and doctors adored), and tried to bring some joy and encouragement into the hospital room.
The only rough patch came when she started having some discomfort from constipation, a familiar struggle for her and also expected post-surgery. By evening, I asked the team for some intervention, and once she finally got some relief, she was was able to relax again.
We ended the night tired but thankful. Another day down. Another step forward.
Sometimes the best gift in the early days of recovery isn’t progress you can measure — it’s peace.
Two quiet, uneventful days might not sound remarkable, but they were the foundation of our daughter’s healing.
If you’re walking this same road, I hope you know: not every day has to be extraordinary to be meaningful. Sometimes healing happens in the stillness.
Our pro-tips:
- Bring comfort items like your favorite blankets, pillows, and comfy clothes. We totally felt like we were moving in, but having our own items with us helped us all relax more.
- For your child, bring comfort items, encouragement cards and notes, and favorite snacks.
- Take breaks. Walk outside, stretch your legs, breathe. It’s okay to step away, even if it’s just down to the hospital cafe. Believe me, I know it’s hard.
- Bring someone with you. Don’t go through this alone if you can help it.
- Pack distractions. Bring books, a laptop, chargers, headphones — whatever helps pass time.
- If you’re a person of faith, bring devotionals or find the hospital chapel for moments of peace.
If your child has gone through SDR surgery, or another major hospital stay, I’d love to hear about those early recovery days.
What surprised you? What helped you through? Your story might be exactly what another parent needs to read tonight.
Blooming where we are planted,
A CP Warrior’s Mama
