Chapter Two
Walker
“Graham is an ideal candidate.” The doctor handed me a folder. “I’m not going to sugarcoat it. The recovery is rough, and he is at the top end of the ideal age for the procedure, but if it works—and I think the probability is good—he will be in far less pain, and his mobility will most likely improve.”
Seven. My dear sweet Graham was seven years old, and he was aging out of options. How could it be?
“Spastic diplegic cerebral palsy doesn’t mean the same life it did even ten years ago, Dad. We can help.”
Gods how I wanted to believe him. Graham’s spasticity was appearing to get worse with this growth spurt, and I couldn’t bear to see him in pain. My smiley happy boy wore the serious mask of hiding pain far too often lately. I was not okay with that.
But surgery was a hard pill to swallow. Technically speaking, his father died during surgery, although they’d assured me by the time they operated to get my Graham out it was already too late, his heart was done. That didn’t make the idea of Graham being wheeled back to the OR to be put under and worked on any less terrifying.
“We?” I asked, buying time to think of better questions. I’d expected to come in for his evaluation and leave with altered physical and occupational therapy orders. Sure, Hasting Children’s was world-renowned, but the thought they might be able to do more seemed too out there to acknowledge much less latch on to.
“My team for this procedure.” He listed the experts on staff, including an orthopedic surgeon, a neurosurgeon, a pediatric rehabilitation medicine physician—whatever that was—and a physical therapist. This wasn’t one doctor thinking he had all of the solutions, it was a team—or so he mentioned a few times in his explanation. Of course, the old wives’ tale about too many cooks floated in the back of my mind.
“It’s a lot.” I opened the folder, took one glance at the first page, got overwhelmed, and shut it. This was too much.
“We can make an appointment for a couple of weeks from now if you would like. Give you time to discuss it with…to think about it.” Seven years after Harrison’s death, and people still tiptoed around the subject. I had a feeling it would never end or, if it did, only after Graham was an adult and it was more “normal” to only have one parent.
“I think I just need to wrap my mind around it all. Tell me, Doctor.” I leaned in a little closer and asked the question that always sprang to mind when it came to Graham. “If this was your little boy, what would you do?” Surprising how many times doctors and therapists changed their tune with one simple question.
“Honestly, Dad, I’d find a way to make it happen. It will be a long recovery with lots of therapies and medical visits, but, in the end, I truly believe his life will be better for it.” There was honesty to this man, this doctor I’d only known one day, and I found myself agreeing to meet with the team to set things in motion. One of the top children’s hospitals in the world, this facility offered a fun place for Graham to be while I met with the doctor, the billing department—because, of course, it was a thing—and making what felt like a thousand appointments.
As I reached the playroom door, I was so wrung out I just wanted to go to sleep—for a month. “I’m here for Graham,” I told the person at the door, the threshold of which I wasn’t allowed to pass over as a safety measure. It was all so formal.
She took my license, matched it up with the copy they’d made only a few hours earlier, and called for Graham a few times. If I were to guess, he’d gotten into some Legos and was quite occupied.
“Dad,” he finally answered, ignoring her and walking straight to me. Sure, he was using a walker, and it was doing a lot of the work for him, but, given the late hour of the day, even this was amazing. “I made the coolest spaceship, but they said you can’t come in and see it.” His words were clear as day to me, but I could tell by the wrinkle in the attendant’s nose she had no idea what he was saying.
“I’ll bet it is an amazing spaceship, Graham, and they only won’t let me in because I’m old.” I forced a chuckle, saying most of it for the attendant’s benefit.
“We can take a picture,” she piped up, earning a squeal of glee from my boy.
When she came back to show me, offering to text it to me as well, I could see why he’d been so excited. The intricacies of his design blew me away. My boy was going to be an architect or an engineer when he grew up, I had no doubt.
“I love it!” And I did, too. “Want to go back to the hotel and get room service?”
“Or?” The glint in his eye told me he had a plan, one requiring me to push aside my exhaustion and rally.
“Or what?”
“They have a LEGOLAND.”
And LEGOLAND it was. Three hours, six rides on their go-in-circles ride, and one hotdog meal later, we were leaving with a sackful of Legos and more pictures on my camera than I’d ever be able to print or post. The afternoon was pure perfection.
We hadn’t talked about the surgery beyond my telling him the doctors had one they thought could help, to which Graham answered, in the way kids did, “Works for me.” Not an ounce of fear showing. My son amazed me with his strength. He got it from his other father.
A point only proven as my eyes teared up back at the hotel that night as I read through all he’d be enduring before his recovery was over. It would be worth it though. The little whimpers of pain he made in his sleep only solidified the belief.
From the packet to the computer, I searched and searched until my eyes were blurry. The doctor hadn’t misrepresented a thing. It would be grueling, but worth it. And then I found a blog. An omega mom described her son’s journey through life with cerebral palsy, including the exact procedure and pretty much everything from the day of diagnosis to yesterday, three years after his surgery. He’d just finished a baseball game, and his team won. Baseball. Sure it wasn’t the Little League World Series or anything, but…baseball.
I started from the beginning and read every last entry, making notations on the folder of anything sparking a question and eventually sending her a thank you for her blog. I could do this. I’d never had any doubt Graham could. He was so much stronger than me. But myself—I never felt strong, not when it came to being both parents to my sweet boy.
I was about to close the computer and try to get a couple of hours of sleep before Graham woke up and we made the six hour drive back home, when my email notification went off and in my mailbox was a letter from CPMama.
Thank you so much for your kind letter. I started this blog as a way to get out my emotions, and knowing it helps people just makes it so much more. As to your question, the thing I wished I knew pre-surgery I never thought to ask—if you can afford it, hire a caregiver to live with you, even if it is only a nursing student. You will need the help. I didn’t figure it out until a month in, and, by then, my marriage was already suffering.
I can’t imagine doing this alone. Know this: You’ve got this. Just reading all my post tells me you are an amazing father. Please reach out if you have any questions or need someone to vent to who understands. I am also including a link for a social media group I found helpful. It is all parents of kids as fabulous as ours.
Thanks again.
~CPMama
I clicked the link and asked to join the group, eventually shutting down my laptop and climbing into bed. I had a long day of driving ahead of me and so much to think about and decide ahead of our “team meeting” in two weeks.
But like CPMama said, I had this because, what choice did I have?
Chapter Three
Sebastian
My previous assignment had been one of my favorites so far. The triplets were delightful, their big brother an intelligent happy boy, and the dads in love in a way that made even my heart beat a little faster. They were a delightful family to serve, but they didn’t need me anymore. And the widowed dad who would be my new employer did.
His little boy had a form of cerebral palsy, a challenge for a
ny family, but, according to Manny, they were doing better than most. However, a new treatment plan, including surgery, would be placing an extra burden on both of them. Recovery and rehabilitation alone would be extensive. And that was where my experience and training made me the right manny for the job.
As an RN, I could be working at a hospital, but I preferred being part of people’s lives to simply treating patients. It was more personal, somehow, and allowed me to care for the child twenty-four seven. Well, I did get time off, but I could be there when they needed me.
Sometimes, being there made all the difference.
The Lyft driver parked in front of the small, neat home, and I tucked my tablet—on which I’d been reading Graham’s case notes along the road from the airport—away. The driver got out and popped the trunk then set my duffel and rolling bag on the sidewalk. Not a whole lot of possessions, but I didn’t need much. I had a few things stored at my dads’ place, but not many. I traveled light, both physically and emotionally. Not everyone had a fated mate, a true love…their own family. Some of us were destined to play support roles in others’ lives.
And I took pride in my role. When I moved on, I left people ready to manage their own destinies.
Before I started up the walk, the front door opened and a young boy appeared in the opening. He gripped a walker, swaying just a little before returning his other hand to the second grip. His smile brightened a face that, even at this distance, reflected more suffering than a child should have to endure.
Determined to do anything I could to lighten his load, and his dad’s, I hung my duffel over my shoulder and hefted my other bags and started up the walkway to meet my new charge. Arriving in front of him, I offered him a grin in return. “Hello there, young man. I’m Sebastian, and if I have the right house, you’re Graham?”
He thrust a hand out, maintaining his balance by main force of will, and I took it, shaking gently before releasing him. “Yes, Mr. Sebastian. I’m Graham. Dad says you’re going to help us while I have the procedures.”
He talked like a small adult. Probably the result of spending so much time in hospitals and with medical professionals. First note: make sure Graham gets kid time.
“That’s why I’m here. I understand you and your Dad could use a hand for a while.”
“Hello.” The man who appeared behind Graham was so tall, I had to tilt my head back to see his face. Of course, there was one step up between where I stood and his location, but still. Tall. And hot. So…hot. He also thrust his hand out, past his son who still stood between us. “I’m Walker. Son, let’s move aside so our new friend can come inside.”
Friend. My mouth was so dry I could barely respond while shaking hands. “Nice to meet you. I’m Sebastian, and I’d love to come in.”
Love. Not a word in my usual vocab.
Walker stepped back, and we both waited while Graham shifted around. Patience was fortunately something I had buckets of. When the space was clear, I entered, breathing in the scent of… “You baked chocolate chip cookies?” I addressed the comment to the dad, but my answer came from the son.
“I did. I made them for you.” He pushed his walker toward a doorway through which I could see a kitchen. “Do you want some now? Dad told me we couldn’t eat any until you got here.”
“Now, son,” Walker said, “our new friend probably would like to see his room first, maybe get settled in.”
But I dropped my bags where I stood. “If you don’t mind my leaving my things here, I’d love to try one of those cookies.” I winked at Graham who was giving me puppy dog eyes over his shoulder. “Maybe more than one.” At Walker’s wave, I started after the little boy. “So do we have milk to dunk them in?”
He arrived by the table where there was a platter of the promised treats. They were all different sizes, and it looked like one batch was a little overdone, but I was so touched. “We have milk, but I’m not allowed to pour it because sometimes I spill.”
“Then let me. Just tell me which cupboard for glasses.” I followed his instructions, and, soon, all three of us were sitting at the table, dunking merrily away. “So glad you’re a dunking family. I know we’ll all get along great.”
“And Oreos,” Graham told me, while trying to fish a piece of cookie out of his glass. “And donuts.”
“Of course.” I paused, thinking. “Oh and I always dunk Nutter Butters.”
“Yum! Those are my favorites,” he crowed, but his hand knocked against his glass and it wobbled. “Oops, sorry, Dad. I almost made a mess.”
“You know it’s okay, Son.” Walker’s soft reply made me like him better. “We can always wipe up a spill.” He turned to me. “We are working on pouring, too, but the full container is too heavy for him to balance well.”
“I can help you with that,” I offered. “One of my families used to put the milk right in a carafe when they got home, so it was easier to handle without spilling.”
“Then I can fill all of our glasses with juice, too.” Graham’s face lit up. “Right?”
“Juice, too, if your dad doesn’t mind my ordering a few carafes.”
“Not at all.” Walker looked so happy, I was thrilled, too, sending thoughts of gratitude to the parents of little Jeanine whose medical issues had inspired my idea. “Can we get them online?”
“Yep.”
After a half dozen cookies apiece, I drank the last of my milk and sighed. “Best welcome ever. Now, maybe Graham can show me to my room so I can unpack?” This wasn’t an interview. I had the job, but I still had to go over some things with Walker. “Then, maybe your dad and I can talk a little, make sure we have everything lined up schedule wise.”
There were always various things to work out, and I had the details of the medical procedures planned but wanted to hear Walker’s thoughts and expectations for that as well as what he wanted from me. So, while Graham watched a nature video on his tablet, we sat down to talk.
Chapter Four
Walker
He wasn’t supposed to be hot. He wasn’t supposed to be hot.
“Yeah, sure. Let me go set up an away message for work.” I gave a curt nod and walked out of the kitchen to the small makeshift office that had once been our pantry. My boss was gracious enough to let me telecommute often. It made me half as good at my job as I wanted to be, but family came first. Always.
I managed to record my message and shut down all my computers, shooting off a quick note to my boss that I was extending my late lunch until the next day. Why I thought it could be a quick intro and done only showed how over my head I was in all of this. It didn’t help Sebastian somehow made me nervous even before he walked through the door.
It was a lot for me to admit I couldn’t do this single dad thing during the hardest of times, and, while the manny might not ever judge me for it, I judged myself—harshly.
And then he walked up with such ease, like he was born for this, and it turned me into a robot. I owed Graham a new book or something for calling him son a bunch of times as I tried not to stare at the new manny who would be an integral part of our lives for at least the next few months.
Pull it together, Walker. You’ve got this. I even lied to myself. Sucking in a deep breath, I headed back to the kitchen just as Graham did.
“Mr. Sebastian said I did really good on the stairs.” He puffed out his chest a little bit. It was a huge compliment, given he couldn’t have done it even a year ago. He’d come such a long way, and along with it came the spasms.
“You truly are amazing, Graham.” I tilted my head in the direction of the cookies. “Did you want another?” Part of me did, and I was full. When he found his father’s recipe a few months back, I reluctantly let him make his first batch, and it was as if Harrison had paid us a visit.
“I ate too many.”
“Me, too. They are so good.” He pushed his walker to the side and closed the short distance to the table.
“You don’t need to show off for Sebastian.” I spoke low i
nto his ear as he reached the table. “Manny says he is a good one.” That caught his attention. “Good ones look on the inside not the outside.”
“I know, I know. I just…”
I wrapped my arms around him. “I know, Graham. I know.”
“Is it all right if I—” Sebastian stopped speaking as he reached the threshold, my guess being that he assumed he was interrupting something.
“Come in.” Graham waved him on, started to lose his balance, and grabbed back onto the chair.
“Sit,” I whispered to him and turned my attention to our new manny.
“We were just discussing cookies. Did you find your room good enough for what you need? I assured the agency that I could give you the master bedroom easy enough.” Not so much easy as doable. The bedroom he had been offered was designed to be a child’s bedroom with no bathroom. It had enough space, but the lack of a bathroom had to be a bit of a nuisance at best.
“It is fine.” He settled his hand on the walker. “Graham, I think I need to discuss some things with your dad. Do you mind if we head out into the living room?” It had been the original plan, but the way he asked had me feeling like I was about to be sent to a time out.
“You can play on your tablet.” I hated to use that blasted thing as a babysitter, but, sometimes, a dad had to do what a dad had to do.
He smiled at that, and I took it from the charging station I’d jimmied on one of the higher shelves and handed it to him. “Call if you need anything.”
He agreed, and I led Sebastian to the living room, where we each took a seat, his face far too serious, a small notebook and a folder in his hand.
“What were you asking earlier?” I asked, hoping it would give me a clue as to why I felt like an errant child. “When you first came in, I mean.”
A Bundle of Mannies Page 57
