Learning to Embrace Life’s Little Moments

By Julie Ufema
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The holidays brought me an unimaginable gift this year. One that I never could have anticipated.
My Mom drove in from Maine and was able to join me as we volunteered to be ‘room mothers’ for my son Dane’s Christmas party. She was thrilled. I, admittedly, was apprehensive to say the least.
Earlier this year I was able to spend a day in the life of a kindergartner when my son’s home health aide called off sick, and although an invaluable experience, by the end of the day I was exhausted and happy to head home. But this would only take a couple of hours, and was a party to boot! I love a good party. How tough could it be?

Let the Party Begin

We walked into the classroom and all heads turned in our direction. Everyone now knew that I was Dane’s mom, an avid, amateur photographer and always willing to do something slightly unorthodox to meet my son’s special needs – two things that five-year-olds find highly entertaining.
The ‘head’ room mom announced that we would be making a Christmas ornament, reading a story and then playing some games. That seemed easy enough.
My mom and I set about opening up Popsicle sticks, squirting glue and sticking googly eyes where they belonged. Dane’s snowman looked like it was melting, but he’s never been one to follow the rules and I have never been one to make him.
The story was delightfully uneventful. The children all sat ‘crisscross-applesauce’ and listened with bated breath to find out if ‘Grumpy Santa’ would snap out of his funk and finish delivering his toys to all the good little girls and boys.

Game Time

Next up – the games! Dane squealed with delight and clapped his hands. A moment of terror swept over me. What games? How hard could they be? Dane has cerebral palsy, limited use of his hands and is in a wheelchair. It just hadn’t dawned on me that these ‘games’ might fall slightly outside of his wheelhouse. I so often forget that Dane is any different than anyone else that reality sometimes sneaks up on me.
And boy was this one a doozy! We were to push a Styrofoam ‘snowball’ the length of the classroom (and back!), with a wooden spoon, in an all-out, head to head relay race. When it came time to split into teams, I tried inconspicuously to hang back with Dane. Not a chance. The excited students pleaded with us, “Come on Dane!” “Dane, come be on our team!” “No, he’s closer to our side.  He should be on our team.”
As it had time and time before, my heart sank. I thought quickly, grabbed a piece of paper, rolled it up into a cone and handed it to Dane. “Here,” I said confidently.“You can be the director!”
My mother and the aides looked relieved. That should work for sure! Dane had definitely inherited my bossy pants gene and this should totally satiate his need to participate.
No dice. Out came the lip.
Before the first tear could fall I hurriedly unbuckled him from his wheelchair, mustered up all the strength I could, grabbed my 4-foot, 50 lb. baby boy and carried him over to the end of the line.

Part of the Team

Our turn came. I grabbed the wooden spoon, swooped down towards the ‘snowball’ and gave it all we had. I managed to give the ball one pretty decent whack, and with a couple more awkward and labored dips to the floor, we were just able to stumble across the finish line, dead last, to a raucous round of applause.
As I looked around the room I saw laughter, empathy and maybe just a little disbelief. I looked down at Dane and he grinned ear to ear. Panting, I trudged back over to my mom who quickly pushed Dane’s chair into position. She was smiling too.
She leaned into me, “We could see your bum.” She giggled.
“Won’t be the last time!” I laughed.
And it won’t be. I decided that from that day forward, I would attend all of Dane’s parties, not to protect him from disappointment, but to celebrate the moments that pass too quickly, often unseen by the adult eye. And if I have to show a little bum in the process, so be it. I’d rather teach my kids that to participate and risk looking foolish is always better than not participating at all.

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows. Find her at www.julieufema.com and www.facebook.com/JulieUfemaWriter.

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Spending the Day with My CP Kindergartner

By Julie Ufema
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Recently, I witnessed something most people never will. I became the ‘fly on the wall’ that I had always dreaded, yet hoped I could be. My youngest son has cerebral palsy and his aide called in sick. No one was available to replace her. It was either keep him home or tag along, so tag along I did!

Surrounded by Five-year-olds

The day started out a blur. Dozens of five-year-olds swarmed the classroom, running this way and that, dumping their lunch boxes, backpacks and layers upon layers of clothing in their respective cubbies. They each turned in their homework folders, some more agreeably than others, and then found their seats.
When the bell sounded, I regressed into that over-stimulated kindergartener of many decades ago, riddled with anxiety in anticipation of another school day. Don’t get me wrong, I loved school (when I was younger), but was always consumed by the need to be the best. Now, sitting next to my own son, watching the others rise for the pledge of allegiance while he remained sitting in his wheelchair, I became acutely aware of what ‘being the best’ really means.
We went through the lessons of the day: reading, writing, AND arithmetic! My mind reeled while witnessing the expectations that a five-year-old is faced with in today’s school system. Gone was the rudimentary blackboard, which has been eclipsed by a sophisticated ‘smart board.’ No more half-days filled with playtime, snacks and the occasional nap. No ma’am. We got straight to business, and in a good teacher’s classroom, the business of teaching is no easy feat.
The usual characters reared their familiar heads. One after the other, out they came – the one who can’t sit still, can’t stop chattering, can’t keep their hands to themselves, can’t follow directions, can’t pay attention… the list goes on and on.  And then there are the know-it-alls, the quiet ones, the shy ones and the ones that simply seem to have it all figured out.
I had to wonder if Dane would have been a different student if not born with cerebral palsy.  How would his education be affected by the physical limitations he faced on a daily basis?  When the rest of the kids sat in circle, Dane towered above in his ‘chair.’ When the others gathered for ‘group time,’ they fell to the ground pushing around cars and building blocks. I held Dane in my lap and tried to play along. He clearly seemed more satisfied at an arm’s length away than I, but no sense dwelling on such serious things when it was time for lunch!

The Lunch Rush

We wheeled down to the cafeteria, where I quickly remembered the agony of waiting in the dreaded lunch line. Valuable time slipped away from a little boy that needs three-times as long to eat as everyone else. I was getting the bigger picture now.
There was no time to lose. Unfortunately, my mom instincts had kicked into overdrive. A sea of hands filled the air. I was caught by the desperate stares of a room full of kids, each assuming that the new grown-up must be there to help them all. A sweet little boy offered to watch Dane while I assisted the others. My heart melted.
I opened containers, tied shoelaces, unscrewed water bottles, tore open ketchup packets, rescued flying silverware and poked at juice boxes. It seemed that all 200+ kids were in need of some sort of assistance, disability or not.
Over the next 20 minutes my ability to keep the tears in check was tested. I watched as a parade of students fell in line to empty their trash and rush off to recess. For every two kids that passed us, one said hello to Dane. And not just a hello, but an enthusiastic “Hi Dane!” or “Hi, Jett’s brother!”
They ALL stared, but that’s OK. They are five and Dane is gorgeous. I’ve always told Dane not to worry when people stare, but to worry when people stop staring.
We were the last to finish our lunch and still needed to visit the nurse’s office for afternoon meds. By the time we made our way to the side of the school where the playground is wheelchair accessible, the children were already lining up to come in. My heart sank as I watched the disappointment wash over Dane’s exuberant eyes. I quickly ran him once around the track while he smiled at the disappearing children who were still calling out his name.

Writing and Sharing

Back inside, his classmates were already knee deep in “Kid Writing,” apparently Dane’s favorite activity. He told me to hurry, afraid I would cause him to miss something else. I hurried! We peeled off his jacket and threw it under his chair. No time for formality when there was creating to do! I knew it wouldn’t take long for me to start breaking the rules.
Dane grabbed at the markers I had dug out of his bag. A watchful little girl was quick to tell me that those were not allowed and that I needed to switch to crayons immediately! Yuck. More rules. So, OK, I switched to crayons and Dane scribbled madly, telling me what I was looking at every step of the way.
When everyone was finished, the teacher announced that they could choose someone to tell his or her story to. The rush that followed nearly knocked me off my chair. A dozen kids closed in on us proudly holding up some darn impressive creations. Dane just grinned from ear to ear.

Gaining a New Appreciation

It was a long day that flew by, if that’s possible. I did look up at the clock a few times, as I did a hundred times a day when I was in high school. But I smiled more than I had expected. I sang along when the teacher pulled up classic clips from Sesame Street. I lit up when I saw a child understand something for the first time and genuinely beam when being praised by the teacher.
I was a fly on the wall and lucky to be one.  Every parent should be required to do the same.  I came home with a deep appreciation for every staff member in that school and a better understanding of what I can do to help facilitate my child’s education. I probably learned more in that one day of kindergarten than in all five of my attempts to finish college (and it was a whole heck of a lot cheaper)!

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows. Find her at www.julieufema.com and www.facebook.com/JulieUfemaWriter.

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The Truth About Dane: A Cerebral Palsy Story

The Truth About Dane

By Julie Ufema
My son Dane has Cerebral Palsy. It’s not a bad word. No, not necessarily a good word either. Before I had Dane the most I knew about CP was that Blair’s cousin Geri had it on “The Facts of Life.” Not a lot to go on, admittedly.
At 24 weeks I started going into labor twice a day, every day around 10:00 am and 2:00 pm. I was put on strict bed rest and after being hospitalized, life-flighted and completely scared out of my wits, Dane insisted on being born 11-1/2 weeks early. There was no stopping Dane then, just as there is no stopping him now.
He was strangely perfect at over 3-1/2 lbs. and 17 inches long. His Apgar scores were an 8! (That’s equal to a silver medal at the newborn Olympics.) They called him ‘the boring baby’ in the NICU, quite a compliment with what they see on a regular basis. There was good news all around – until that day.

Receiving a Diagnosis

They HAD to do a cat scan of Dane’s brain because he was a ’29 weeker’. It’s simply mandatory. No one expected to find what they found. Dane had two types of brain damage. The first occurred before birth and the second occurred afterwards, not unusual for such a premature baby.
We learned that the scale of brain damage severity ranges from 1 to 4, 4 being the worst-case scenario. After much deliberation the general consensus was that both of Dane’s ‘gray spots’ were about a 3.
Speculation flew. Dane would never talk. He wouldn’t eat or swallow on his own. No one really committed to the mobility issue. I appreciated that the doctors didn’t claim to be God, able to predict our future. But then there were moments I wished that someone would, just so I could process the news and move on with our lives.

Finding Help

We got help, immediately. He had an aide, teacher, occupational, physical and speech therapist come to the house weekly. I had no fear of the ‘never speaking’ issue when Dane was chatting up a storm at 10 months old. He began screaming bloody murder almost immediately. Dane’s all-time, record-breaking temper tantrum topped out at an eardrum destroying, seven-hour stretch. He had moxy. That was for sure!
Fast-forward five years and Dane is beyond a miracle. He is healthy as a horse. No glasses or hearing aids necessary. He has entered mainstream kindergarten with no educational plan for a developmental delay. Dane simply can’t walk or use his hands effectively. He can’t write, sit up unassisted or feed himself beyond finger foods. But his mind, his sense of humor, the indescribable gleam in his eye is all truly infectious.

Experimenting with Treatments

All that love him want him to live to the fullest so we opted to have two surgeries to help him do just that. I promised Dane that I would always be his voice when he couldn’t speak for himself. I truly believed he would want to take risks to reap the rewards. Now I find myself questioning just how far we should go.
The first surgery was a complete success. He had a spinal dorsal rhizotomy. I describe it as an incredibly sophisticated game of ‘Operation’ where they open your spine and test the nerves for over or under stimulation. If acting abnormally, the nerves get cut. After a tough recovery, Dane responded extremely well to this surgery.
Dane then underwent an Intrathecal Baclofen Treatment. The surgeon inserted a hockey puck-sized pump in Dane’s belly, hooked up to a tube that wraps around his side and then feeds into his spine. The oral muscle relaxers he once took that unnecessarily affected his brain could now be sent directly to the parts of his body that needed them most and at a much higher dosage. The benefits were immediately noticeable.
Dane could isolate his pointer finger as opposed to ‘raking’ his food with many fingers. He properly held a crayon instead of fisting. He could reach above and behind his head. His speech seemed to improve. His arms and hands comfortably laid at rest when not in use. Small things that most people would never notice, never go unnoticed around here.

Questioning Our Decisions

BUT, the incision wouldn’t heal. It burst open three weeks after the first surgery in the car on the way home from vacation.  A one in a million side effect and there it was, right in front of my eyes.
At the hospital they laid Dane out, gave him a local, proceeded to clean out the original incision and then stitched him back up, all the time hoping that that would be the last of it. I held my screaming baby boy’s hands and promised him that this would be the end of it. This was as bad as it would get. I didn’t know that I was wrong. I clearly didn’t know that I was right but I was desperate to make him feel better.
Two weeks later we found ourselves back in the hospital with another burst incision. Again, they cleaned him up, and without stitches, sent us home for a few days. Four days later, the bubble had grown back again. This time I heard the word I had been dreading, ‘surgery’.
Soon we will go in, for what I hope is the last time on this issue. The doctor wants to try and save the pump – cut away the stretched skin and re-close. My motherly instincts tell me to scream, “Just take it out! For the love of all things good and holy, just take it out!”
But what would I say if I was Dane? I would want every chance possible. We can try again when Dane is bigger and stronger but that will require another surgery. I’ve never waited for anything in my life and the kindred spirit I’ve found in my beautiful, willful, stubborn son stares straight into my eyes and trusts his momma to do what’s right.
Life, for me, was always about being right, but after meeting my children I learned that life is really about doing what’s right.  With this next step I just hope we all do right by Dane.

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows.