Sunday, July 6, 2008

Noah's Recovery

Just because a 7 year old boy is in a body cast for 10 weeks doesn’t mean his life stops.

The good things we learned:


In the beginning, we moved Noah in his cast like prized China. By the end of the ten weeks, he was climbing from his bed to his wheelchair, unassisted, and maneuvering his wheel chair with precision and speed. He also pulled himself around on the floor, building his upper body. His spica cast weighed around sixty pounds, ran from his ribcage to his feet, with a two foot long bar separating his ankles. During the last few weeks in his cast, Noah climbed on my back to wrestle.

Visits are great.

Our first visitor at the hospital, following Noah's surgery, was Reverend Bob MacFarlane from Marion's First Congregational Church. He delivered Noah a hand knitted prayer shawl, created by the church's knitting club. Noah loved the visit and the shawl. He kept it on his lap. He also distinguished Reverend Bob from priests by stating: "Reverend Bob has a wife". This visit and gift helped us feel less alone in the process.

Noah’s grandma and grandpa visited twice. The first visit was during Noah’s first week in his cast when they offered to take Noah to “No Kidding Toys” in Mattapoisett. Before this, he did not want to leave the house. He was self conscious and concerned with being hurt in the transition. As soon as they offered their incentive, Noah was at the door in his wheelchair, asking people to speed up. By chance, one of his classmate’s, Ayana’s, mom was at the store and was very happy to see Noah. This added to his joy.

Noah’s uncle Brett visited twice. He focused on Noah and became a seven year old playmate for these weekends. They played video games, joked, and giggled most of the time. Noah loved this. When he had to, Brett encouraged Noah to take things positive.

A highlight was regular visits to Ned’s Point Lighthouse Park to fly a kite. Noah challenged himself to see how fast he could make the kite airborne. As a result, we learned about Buzzard’s Bay daily wind patterns. We also ate cheeseburgers and fried clams from the Oxford creamery, and fed seagulls.

We attracted close to 100 seagulls one day and opened the van’s side doors to see who could lure a seagull closest to the van. Uncle Brett won. He closed a French fry in the passenger window, and then stuck his finger out the window, like a French fry decoy. As a seagull gnawed on his knuckle, Brett jumped and Noah laughed until he cried.

When Brett arrived on his second visit it was past 11 PM, and I told him Noah had gone to sleep, but he could go in and say good night. As he entered the dark room, Brett was welcomed by Noah imitating Al Pacino in Scarface saying: “Say hello to my little friend.” Then, Noah emptied his new Nerf machine gun’s magazine on his uncle. Noah had waited all night for this surprise. Brett falling in hysterics made the wait worthwhile.

During his fifth week in the cast, I perched Noah on a jetty rock next to the water at low tide, to be close to feeding gulls and ducks. The rock allowed him to lean at about 70 degrees prone, his first resemblance of standing in over a month. He took a deep breath, smiled, and did not want to return to his regular, more horizontal, position.

The day Noah’s cast came off; I asked him what he considered most positive about the experience. He responded: “that’s easy dad; Mrs. Dineen”. Mrs. Dineen was Noah’s tutor. She visited almost daily for a few hours and kept Noah on track with his classmates’ curriculum. Her pleasant smile, kind manner, and calm disposition allowed Noah to focus and thrive.

Mrs. Dineen brought Noah Cherry Garcia ice cream after learning, during Noah’s report on his Lithuanian heritage, Jerry Garcia sponsored the 1992 Lithuanian Olympic basketball team with uniforms and tie died warm ups. During his report, Noah wore a tie-died tee shirt I received for supporting this effort.

We learned Lithuania gained its most recent independence from Russia in 1991. Prior to this, Russian Olympic Basketball teams were populated with Lithuanians. The fledging 1992 team needed funds and the Grateful Dead’s front man embraced their cause. In one of its greatest moments, Lithuania beat Russia for the 1992 Olympic Bronze Metal.

Noah was also visited by his teacher Mrs. Villa, his buddy Nick, his cousins Darya and Rachel, his Aunts Gail and Lisa, and classmates with their parents. We were also visited by PBGV breeders and their loving dog Lottie, who we met while investigating their handsome brood in Falmouth. My Brown roommate Arnold Lewis visited with his family, and Noah very much enjoyed playing with his son, Cameron.

We also dog sat for Gail and Darya’s year old Labrador, Reilly, and decided to walk Reilly to visit Nick. This evolved into a carriage ride as Reilly pulled Noah in his wheelchair down the street. Noah wanted to see how fast Reilly could pull him, but we stopped when his wheels vibrated, almost beyond control.

While in his cast, Noah also enjoyed going to the movies. He saw Iron Man and Indiana Jones, twice. He then wheeled around Target searching for respective, licensed toys he learned about while meeting his new Hasbro friends.

Gifts are welcomed.

My good Hasbro clients and friends learned Noah would be laid up for three months. They also learned he loves Star Wars and Indiana Jones. This led to Noah being invited and to visiting their Star Wars, Indiana Jones, and Marvel design and selection teams a week prior to his surgery. He selected the next Ewok characters to be developed. He also left with a box full of Star Wars “test” toys.

In addition to his prayer shawl from church, Noah received a knitted blanket from hospital volunteers. These draped over Noah's cast, and comforted him.

My lifelong friend Fred Campbell-Mohn, his wife Celia, and their daughter Emma sent Noah very imaginative dragons and space toys, and the latest activities from Narnia. Another good Madison, NJ friend, Bernie Tiger, who now lives a few minutes from me in MA, also sent Noah very thoughtful space related gifts.

Noah’s uncles Jud and Robert and their families sent Noah fun packages including a squirting ring, fake spider gum, and whoopee cushions. I honestly fell for the spraying ring trick, several times. Robert was able to locate and send a discontinued Lego set Noah searched for and hoped for months to include in his collection.

Noah’s great aunts Jane and Peggy and great uncles Bob and George sent regular care packages including another special Lego set, a servant’s bell, harmonica, and another whoopee cushion – a constant gift from my mom’s side of the family. Noah loved these. My mother’s cousin Iris and her daughter Catherine, who were dealing with the demise of their husband and father, John, also sent Noah several creative play toys. His grandma’s sister Lois and her family also sent Noah a get well present.

Mrs. Villa delivered a signed and framed class picture and a box of gifts from their second grade class.

The head of Brown Alumni Relations sent Noah a Brown baseball cap.

It was amazing watching Noah’s face light up when he received a package. Thanks to so many people, this was his regular experience.

Notes are wonderful.

His grandma sent Noah a card at least every week. Iris, just as she sent me while I was at Brown, sent Noah very thoughtful weekly updates. My cousin Russell, his wife Jamie, and their son Sawyer utilized the internet to connect with Noah.

Nick delivered a box filled with cards from each of Noah’s classmates. These are precious. Ayana wrote; “I’m very worried about you. Call me.”

Even my sister Pam, who, I think, last sent me a note when I was in high school, sent Noah a get well card. I told him he must rank very high.

Noah’s room, our converted living room, included a hospital bed, a laptop computer with internet access, an Xbox, a Game Cube, a TV, DVDs, books, and toys. As the weeks progressed, the fireplace mantle, surrounding book shelves, and entertainment shelves were covered with cards, letters, and notes. These were constant reminders of concern and care.

Share the weight (wait).

When people asked the obligatory: “Hey, how’s it going?” rather than offering the rote response: “Good thanks. How’re you doing?” I trained myself to answer honestly: “It’s rough. My seven year old son Noah had major hip surgery and he’s in a body cast for ten weeks.” The responses were heartwarming and generous. People offered their time and support to help. It was sincere.

My clients are my coworkers, so I don’t have a normal office setting where I can share family updates and regular office chatter. My clients were aware of Noah’s condition. Some offered me more at home creative course design and workbook projects. This allowed me to be near and pitch in at home more readily. I really appreciate this consideration.

To supplement normal office support, I called our Reverend Bob MacFarlane weekly, visited friends like the Frantzes, and spoke to my college line mate and buddy Jeff Trauger on a, if possible, more regular basis. He refused to change his normal teasing and harassing treatment of me. I actually appreciated this.

Noah’s condition and its uncertain outcome – we won’t know if this procedure will prove successful for a few years, added a great deal of stress to our household. We did our best to not to let it destroy our relationships. We looked for opportunities to visit with positive people, to laugh, to learn, and to focus on positive outcomes. It was not easy. Either Linda or I spent every night on the couch next to Noah. It was like having a puppy or infant in the home again. Every basic function needed assistance.

Prayers and Positive Thoughts are Powerful.

Noah’s attitude and giggles kept us upbeat and humble. I kept wondering how I would manage if I was in a similar circumstance, and I could not fathom it. Every day he looked forward to new projects. He did very little whining. He attempted new challenges. He really looked forward to visits and packages. The cast did not victimize him, but made him search for ingenious methods to address his physical obstacles and challenges. We created funny stories, and made up funny voices while reading creative stories.

My sense is the good thoughts and prayers people sent Noah’s way had a very positive impact on his spirit and recovery. Thank you.

Also, it's impossible to write this type of recap without missing a thoughtful person, visit, note, or thought. So I apologize for my inevitable oversight and thank you for your support and help.

What we’d like to change:

Predictable Outcomes

It would have been nice to avoid or prevent the whole circumstance, but this was not in the cards. We waited until the last functional time for Dr. Michael Ehrlich to perform the surgery, hoping and waiting for Noah’s hip to correct itself, as is the case for most Legg – Perthes patients. As mentioned earlier, Noah was monitored, and in traction every night, since infancy. I hope to have more certainty about the surgery’s ultimate success.

Adult Responses

Some parental responses to Noah’s cast were upsetting to Noah. Kids have a hard time hiding their keen curiosity and interest. Their stares and questions are normal and Noah handled them well. However, some parents’ awkward looks and responses surprised me and upset Noah. I will approach kids in special circumstances with kindness while checking boundaries. I hope adults will do the same.

It's better to give than to receive.

After the initial surgery and after the cast was removed, Noah and I stayed in the hospital for several nights. After his cast was removed, we had two roommates. The first was a four year old boy named Brandon who needed a private room because his chemotherapy kept him awake and ill all night.

After Brandon’s bed was changed, a young Chinese boy named Jason was rolled into the room with an entourage including an interpreter. Jason was the only member of his family who could speak English, but his parents needed to consent to his treatment, including a CAT scan. His eye was swollen like a softball. It looked like he was hit by a baseball bat, but the swelling was caused by an infection. He rubbed his eye after touching poison ivy. Doctors worried the rapid spreading infection might affect his brain.

Jason wailed as antibiotics and other medicines were administered intravenously. Noah asked me to give Jason the stuffed animal Noah got at the gift shop to celebrate freedom from his cast. As Jason was wheeled from the room for his scan, we noticed him clutching this animal. Noah shot me an approving glance. I hope the folks who sent Noah gifts realize the satisfaction Noah felt in giving this gift to Jason.

By the time we left, Jason’s eye was just about normal. The same was not the case for Brandon. He was heading to Boston’s Children’s Hospital for more treatments. I hope Brandon and his family, and like suffering kids and their families, won’t have to experience these painful events.

Hope springs eternal.

The first two weeks Noah was freed from his cast were difficult. His tender joints gave him great pain. Anticipating movement made him shake. His therapy helped increase mobility. Every day brought progress. I wish we could have avoided this step, but suffering leads to endurance and endurance leads to character and this leads to hope.

Silver linings

It’s a long process. Noah won’t be sailing this summer. But he’s having a great time playing with his cousins Alex and Gabrielle, visiting Gail and Darya on Cuttyhunk, and swimming in the backyard. I wish we could blink our eyes and be healthy and happy, but these trials helped us appreciate life. They introduced us to new circumstances, and allowed us to see the best in people.

5 comments:

Irene said...

Hi Matt - Noah's recovery is such and inspiration to all. It would be great for you to publish this for other families. My best wishes for Noah and the family - I know that Noah will always grow - mentally and physically from all his experiences. He is also lucky he has such a loving and caring family. Hope to see you soon, Irene Olsen

Cpt. Mike said...

What a perspective builder! Clearly, the Paknis family is one strong team!

Kudos to Noah for being such a great sport!

Cpt. Mike

wrez said...

Hey there, Matt. Your recap of Noah's recovery was as inspirational as it was nail-biting. You were at the peak of your writing skills, and we readers were no doubt holding our collective breaths as we read through your skillful retelling. I am both amazed and humbled by your experience, and, of course, by Noah's strength and perseverence. This would make a great Movie-of-the-Week: a story of hope; a heartfelt experience with recovery; and a prayerful wish for ultimate success. You have buoyed up my spirits this Independence Day Weekend, and I have you and Noah to thank for that! Best Wishes! We miss you at Brown! --Fred Resnick

Matt Paknis said...

Thanks for your kind words Irene, Mike, and Fred.

As Irene states, there is an opportunity for growth in every situation.

We hope this is the case as Noah regains his strength and mobility.

Thanks again for your good thoughts. They are very helpful.

Best-
Matt

Fred S said...

Matt- As my kids grow older they express to my wife and I how lucky they feel. They realize how many friends have challenging or complete dysfunction in thier family lives. My daughters know full well we're not perfect but they do question why we seem so grounded. I laugh and tell them- willingness to learn from past mistakes and accepting them. But more importantly being willing to learn from those around us. I love to share with them what I learn from others experiences- and you my friend have been mentioned more than once. I can't wait to share this with them. I'm glad Noah is doing well and he is an inspiration. I'm sure he will come to understand as he grows older how fortunate he is to have such a caring supportive family.

Peace!
Fred Salo