I wish that everyone could spend at least one day in a children’s hospital. A week wold be even better.
Does that sound terrifying & unappealing?
It can be. If your child is acutely ill it is an absolute nightmare, but-- if your child is not in crisis or you can go in as an observer, I believe that it can be life transforming.
It has been for me.
In one place you will witness the whole continuum of human emotion—fear, hope, excruciating grief and exhilarating joy & triumph. You see empathy, compassion & unconditional acceptance. There are real life heroes everywhere you look - doctors, nurses, therapists, child transport teams, child life workers, hospital volunteers, strong parents driving recovery & of course most inspiring heroes of all, children who face huge battles every day with grace & grit & determination.
Of course, you can’t just walk into a children’s hospital and observe, so let me take you with me through a day...
Let’s pick the 2nd day of summer CORP (Comprehensive Outpatient Rehab Program)—a typical, normal day of brain injury rehab.
8:30am-I pull into the parking lot with Ronan & it’s already packed. One of the few handicapped spots is open but I leave it for one of the many families who I know will be arriving soon with wheelchairs. There is not enough disability parking and I remember the days of struggling to unload & set up a 40lb wheelchair, transfer a child with mobility challenges from the car and then navigate through a long crowded parking lot.
We park & walk towards the hospital. Part of Ronan’s occupational therapy goal is to navigate himself around the hospital with as little assistance as possible. He had walked this path, from the parking lot to the rehab gym, over 100 times, yet he still hesitates when deciding where to go next. His brain is fatigued today after the taxation of first day of rehab and it takes twice as long as usual for us to get to the gym, easily 3 or 4x longer than it would take for most people. A quick reminder to me of the ease of functionality in our daily routine that most of us take for granted.
The Rehab floor is buzzing. We stick close to the sides of the hallway to make room for the physical therapists overseeing kids on therapy bikes, riding the hallways to strengthen legs and aid coordination & balance. Therapists, child life specialists and other rehab families call out cheerful greetings to us as we make our way to the gym. There are children in this hallway with severe physical impairments but the mood is upbeat. There’s a brisk, determined feeling in the air that always makes me quicken my step & walk with more purpose. It’s also not lost on me the Ronan immediately relaxes and seems at home here. He knows he’s facing a day of complete support and acceptance.
9am-Ronan gets settled into his hour at school. We’ve gotten the 9th grade curriculum topics from our school and he is getting jumpstart on History. The teacher in CORP is working on text scanning ability, for Ronan to be able to pull specific material out of a paragraph. This is extraordinarily difficult for him since his accident and we’re grateful that has extra time this summer to hopefully improve this critical academic skill.
10am-Ronan goes to speech where he is working on memory compensation strategies and improvement of social language among other goals. We've got four 3 day weeks. Goals need to be concise and heavy hitting to help us start the school year off with solid goals and recommendations to bring back to our school team.
I get the call that I have been waiting for from the Ronald McDonald House. Unfortunately they are still full and they won’t have a room for us again tonight. I chat with house rep for a few minutes...she is v apologetic but there are in-patient families who just need the rooms more. I wonder about these unknown families and why they are here. I remember the acute days of Ronan’s hospital stay and offer up a quick prayer of healing & solace for them.
I’m also so relieved that we are through those days. A tsunami of gratitude washes over me that we have come out on the other end of the first horrific year.
Nonetheless...the house being full is another stressor. I feel anxiety not knowing where we will stay each night. The hotel that we booked with Keith’s points last night is nice but it’s further away from the hospital and it’s already getting expensive eating out 3x a day. I would also rather have the comfort that comes with spending time with families who we know. I have derived so much strength, hope and inspiration from after dinner conversations with other parents.
Fingers crossed that we get into the house next week 🤞🏻
11:00am-I run to the drugstore because I forgot to pack a few of Ronan‘s toiletry items but I’m back in time to catch the last half of his PT session. He’s tired but looking good. His PT is impressed with his improvement in strength, balance and also his ability to focus. Big improvements from last summer. This is what we want to hear! This is what it’s all about. This healing is the reason why we spend a month each summer living in Delaware part-time.
He walks me through some back & spine strengthening stretches that we can do at home and experiments with different pads under Ronan’s feet to see if he can tweak his balance.
Out on the gym floor is one of my favorite times to look around and absorb everything. There are kids & therapists everywhere working hard. There are frequent exclamations of encouragment from therapists or eruptions of applause as goals are met. There are hard-working brain injury survivors and other child Heroes with wheelchairs or walkers or braces everywhere I look. Some are looking frustrated and some are focused, there are some grimaces of pain and some little faces glowing are with pride. Some kids in here are non-verbal. Some are hooked up to medical support machinery.
When a child with ambulatory issues successfully was walks across part of the gym in a harness attached to the zero gravity track, therapists stop what they are doing to cheer the child on. There are parents listening intently to therapist’s observations & recommendations and watching from the waiting room ready to embrace an exhausted child who is finished with an intense therapy, celebrate a success or soothe frustrations or disappointment.
For those not used to being up close and personal with this type of childhood disability, this may all sound uncomfortable or unnerving. BUT. If you really allow yourself to see, if you really let it all sink into an open heart, this room will light up your soul.
Noon- As morning therapy is breaking for lunch and people are coming through the family waiting area, I see some dear friends who are back for summer CORP like we are. One particular mom & daughter pair I am especially excited to see.
I bend to the little girl in her wheelchair, a few years younger than Ronan, who has been battling the very serious repercussions of an acquired brain injury as a toddler, and she grabs me into me the squeeziest, most genuine bear hug. I feel blessed to be on the receiving end of her affection. I swear these kids make you feel like a better human being just by association. They have a purity of heart & spirit that is difficult to explain but it emanates from them. Knowing these heroes and getting an inside look into their journeys of healing has been one of the most humbling honors of my life. The brightest and shiniest silver lining. They have forever transformed the shape & capacity of my heart 💚
I am introduced to a brain injury parent who I haven’t met before and we promise to make time to talk soon to exchange experiences and information.
These types of interactions with other brain injury families are invaluable. Keith & I look back frequently and wish that we had more contact with brain injury survivor families when we were navigating through the difficult first year.
That is our mission with Project GreenHeart – to provide support and information to families so that they know they are not alone. We can give comfort and impart valuable information about what to expect and how to maximize recovery success.
We go to the hospital cafeteria for lunch and I notice that Ronan is looking fatigued. It’s hard for him to decide what he wants to eat and he just stands in the middle crowded food area looking completely overwhelmed and confused. This type of brain fatigue & overstimulation are so common in brain injury. I get him to a quiet corner table and go back in to choose lunch for him. He eats a little and has a Dr. Pepper (I know I know, sugar… caffeine… bad right? Well not necessarily -they help him when he is in these dips. The caffeine seems to help him to refocus).
He seems to sharpen a bit. I’m satisfied satisfied that he will ble to get through the next couple of hours.
On the way back up to the rehab floor we step aside at the elevator to let on two women in full Disney princess garb. I know they are heading to one of the floors with kids who are battling more long-term, acute illnesses. As we wait for the next elevator a little boy from one of these floors walks across atrium in a hospital gown & surgical mask, wheeling his own IV stand along with him. His mother walks beside him. I recognize the fearful, haunted look in her eyes. For this woman, being at a Children’s hospital is currently a nightmare.
I wonder how she will cope with the rest of her day. I know from watching countless other mothers in this hospital with countless other children that she will put on a brave face in front of her child. She will discuss treatments and surgeries and do research and try to make the best decisions possible. I also know that it’s probable that she will lock herself into the private bathroom in the hospital room for a few minutes to gulp for air or silently scream. She may quietly head down to the covered parking garage to cry in the car and scream out loud. She will vent her grief and terror and anger at the unfairness of it all and then she will dry her tears, wash her face, take a deep breath and put on a encouraging smile before facing her boy again. All he will see from her is strength.
I feel a sense of solidarity with her and I hope that someday she will get to the other side of this. Maybe someday she will come back to the hospital during the stage where we are at now and be able to get a full immersive experience of the inspiration and beauty.
Today is not that day for her.
1pm-Ronan gets collected for OT, where they will focus on sequencing and executive function.
I need a break so I slip away to the family resource center for a half hour to sit in one of the comfortable easy chairs and close my eyes to regroup. It’s good to be here but it’s emotionally & physically draining.
2pm-Ronan is finished with his therapy for the day. We are meeting some friends for ice cream in Wilmington later but I have built an hour into our schedule to follow up with some of Ronan‘s specialists at the hospital.
1st stop - Orthopedics. Ronan has a follow-up appointment with his neuromuscular doctor scheduled for the week after we are finished with therapy. I try to reschedule for one of the days that we will be in DE so that we don’t have to come back during the week we have off. They are super nice at the desk but unsure if the appointment can be changed. The specialist appointments are usually scheduled 5-6 months in advance.
They put a prescription for a spinal x-ray in to the system so we can get get it in advance and be ready in case there is a last-minute opening or ability to accommodate us.
2nd stop -LaWall orthotics. Ronan’s PT thinks he needs an adjustment of his shoe inserts. I make an appointment to come down with Ronan during physical therapy next week. They told me they will probably do a complete replacement of his inserts and that I need to call his rehab doctor to get a prescription. Hopefully insurance will cover it.
Unbelievably, the whole hour has passed and I still have more departments to visit.
I grab my phone and take note that we need to follow up with some additional specialists the next day.
Tomorrow’s list includes a visit to Ronan‘s neurosurgeon office to schedule an appointment and his annual CT scan. This always makes me sick with nerves.
Next stop will be Neuro-ophthalmology to confirm the time of an appointment that I know is coming up this summer. His doctor will measure his eyes to see if the eye surgery last year has continued to improve his on-going double vision.
Ronan also has a gastroenterologist who we will be following up with.
Brain injury affects every part of the body. We have specialists in so many departments across the hospital it that it sometimes makes my head spin. It’s sometimes overwhelming to keep track of it all and the frustration of it helps me to narrow the focus of how we can help with our foundation.
And that's a wrap!! A full day of brain injury rehab.
We will get up tomorrow and do it again.
Tomorrow we will have been in Delaware for three days and I am missing Keith and the kids and our sweet Maya dog & our vegetable garden. I know I will be longing for home in the morning BUT—
I know that once our feet hit the ground on the 3rd floor that our shoulders will straighten and we will get a sense of purpose in our steps as we briskly and hopefully walk into another day healing.