Jack Murphy is Beauty Revived with Kristin Janiszewski Photography {La Grange Family Photographer | Chicago Child Photographer}

It’s Here, It’s Here! It’s finally here!

Today our article about Jack Murphy as one of the Most Beautiful Children is published!  This is my second time being a part of Beauty Revived, whose mission is to work with talented photographers around the world that use their lenses for good by showcasing people making a difference in our communities. It means so much to be able to share the story of Jack, his family, their strength and his never-ending spirit and determination that inspire those around him daily.

This story is extremely personal as well, as the Murphy family has been a huge part of our lives for over 10 years. Below you can read the story included in the article, but with limited space I wasn’t able to full include all the amazing stories submitted by Jack’s family, friends, therapists and support team, but I wanted to make sure everyone could read them all.  You will find them below, along with an obscene amount of pictures of this amazing family.

It’s long.
It’s worth it.
Worth every single word.

I hope you will see how special this little boy is, and why he brightens the lives of everyone he meets.

Jack Attack, we love you!

— The Janiszewski’s

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“Great works are performed not by strength but by perseverance.” -Samuel Johnson

 

“Great works are performed not by strength but by perseverance.” -Samuel Johnson

Tim’s tensions already heightened would rise even higher with Jack’s birth and him witnessing the labored breathing and dark blue skin color of his son. After announcing that Jack was born, Tim was whisked away to sign transfer release papers from Prentice Women’s Hospital over to Lurie’s Children’s Hospital NICU. Jack was transferred before Catherine could even hold her son. A joyous day turned into a very stressful day, and Catherine would only receive updates via text messages and short phone calls from Tim over the course of 2 days.

Catherine was finally able to see her son Jack for the first time and was taken aback with the amount of support needed. The Murphy’s struggled with the environment in the NICU – almost to a breaking point – until Jack opened his eyes, looked at his parents and gave them the confidence that he would fight for his life.

For weeks, doctors struggled to understand Jack’s medical condition and ordered continuous, intensive medical exams that added more stress on Jack and his parents. One doctor expressing that Jack has a very serious genetic disorder, giving Jack 4-6 months of life expectancy. After weeks on edge, the Murphy’s were overwhelmed with excitement that all these tests came back negative for any life threatening issues.

However, the testing didn’t resolve the labored breathing and the need for oxygen and ventilator support. After meeting with the ENT team, it was determined that Jack would need a tracheostomy for one of the worst cases their ENT doctor has ever witnessed. A difficult decision for the parents with emotions ranging from sadness and anger to positive, resulting in making the correct decision for what was best for Jack. At just 6 weeks old, Jack went in for surgery. The first three days post surgery, Jack inhaled his first breaths on his own only to succumb to the ventilator after the labored breathing returned. He would now need the ventilator full time – but after three years, he is now off the ventilator for 16 hours a day!

After 178 days in the hospital, Jack was discharged from the hospital and headed home where he flourished with the loving care of his parents and his older sister Emma. Jack would now tackle life on his terms with the loving support of his nursing staff and therapists.

Therapists worked tirelessly to help him sit, crawl, stand, and eventually walk. When Jack would not participate in new tasks, he’d watch and take everything in, only deciding when it was the time he’d perform as if he’d done so for months! When Jack pulled himself up and started walking, with tubes and monitors attached, it was a moment no one could forget! He exhibited that with enough hard work and heart you can overcome the toughest of obstacles.

While Jack cannot speak, he always finds a way to communicate his feelings. When he’s happy he will clap, or tap your leg and show off his contagious smile. If he is upset he will sit down and throw a “Jack Attack” fit.   When he wants to run around outside to try and keep up with Emma, he looks out the window or taps on the door.

Jack approached his first year in preschool with a positive attitude and eagerness to learn. He was building a block tower with his teacher and when they were done, Jack disagreed and went back to find more blocks to make it bigger. While it may seem small, it was a huge step as Jack was creating his own work and moving forward independently.   He is also trying to verbalize which is extremely difficult to do with his trach, he executes the positive motions in mouthing and will eventually speak only to cross off one more challenge on his list.

Jack is a beautiful reminder of how we should all be – believing in the good of what can/will be; not wasting a single moment on something that isn’t fun or enjoyable, and enjoying the simple things in life. Jack is a fighter and determined to overcome his challenges. Jack’s perseverance is that of any great athlete and he will defeat any obstacle that comes in his way to overcome his challenges.

“I will never understand why God chose me to be the mother of such a special little boy, but I am so happy he did.”- Catherine Murphy

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From Jack’s Family

 

Dianne Lannes  – “GG” Grandma

When he sits pensively staring out the window with his head resting in his hands, Still with no voice, he manages to portray his desire to be running outside. As Grandpa and I walk up the front steps and enter the living room, Jack’s face breaks out into a huge smile.

I say, “Hello Jack! Can I have a kiss?” He walks over and presents his face.

Jack has endured more than imaginable in his short life. But the love of his parents and sister, Emma, and all of the extended family and friends builds a bond so strong that nothing can stop him.

I reach out my hands and ask “Jack, shall we dance?” As I hum the tune from The King and I, Jack and I stomp around in circles joyfully.

Jack melts my heart!

Frank Lannes – Grandpa

Jack has endured many medical procedures and appointments with doctors and nurses. Despite their prodding and poking him, Jack is consistently happy and he projects an endearing personality.

I have witnessed Jack having physical therapy and I am constantly amazed at just how hard he works to do doing exactly what his therapist requests. Often, at the end of a routine, Jack lets out a sigh and braces himself – but he only does this after he has completed his routine.

At home, Jack eagerly expresses his love for his mom, his dad, and his adoring sister, Emma.

I am so proud of Jack – he is an amazing 3 year & 8 month old young man, who enthusiastically embraces life as he knows it.

 

Judie Lannes – “Nana” Grandma

I know I am Jack’s Nana, but even with that connection I still believe he is the most amazing little boy I have ever met.  He recovers quickly from the constant and ongoing adversities and continues to smile through it all.  Unless that little boy is in extreme pain or very sick nothing keeps him from picking himself up and then smiling like nothing is ever wrong.  He is patient to a fault and even at his age can share his toys and favorite chair with his sister without getting upset.  Every day he finds things to keep him happy and to smile about.  Just walking around the block or going to the park always brings him joy.  When it is necessary to suction him, he will oblige and then continue on with his present task.  He enjoys music by bouncing around and kicking up his feet with us until we are ready to quit even though he continues on and on.  Even though the ability to talk is not available to him at this stage, he can always manage in his own way to make us understand his thoughts and does not get undone if we misread him at times.  To conclude he is a delight to us all and we know he has a bright future knowing his unbelievable optimism, determination and fortitude to handle whatever comes his way.

 

Tom Murphy – “Papa” Grandpa

I have witnessed Jack’s battles as a baby and now as a 3 year old.
I have witnessed Jack’s success in the many battles he fought.
I have witnessed the determination, encouragement and love from my son and daughter-in-law to give him the strength to move forward. God gave Jack to the best family for a purpose.
What has Jack done for me….he gives all of us and other families in his situation the hope and courage to withstand their battles. He will win the war.

A significant moment for me seeing him reach a breakthrough was…

Jack’s strength and ability to pull himself up using a table or chair.
His first steps while still on a machine tube, etc. Now watching him run around chasing after his sister, it’s amazing.

Always HOPE….never give up. Believe.

 

Kathy Small – Close Family Friend Grandparent

Because of Jack I truly have humbled and became aware of the misfortunes and pain that many parents have to endure. As I look back on the 3 short years Jack has been in our lives, his struggles and accomplishments to overcome any obstacle that he needs to conquer, I feel like his personal cheerleader and want to shout and cheer him on because he works so hard…and he always wins. Hurray!

For me a great break through was when Jack started to walk…then run. Prior to this it would break my heart the way he would follow every move his sister Emma made running through the house. He wouldn’t take his eyes off her. He just wanted to join her. God bless him…he caught up to her. This is just one example because Jack never ceased to amaze me. HIS hard work and determination gets him through each hurdle.

The way Jack has made the world much better is the hope and comfort he gives to other parents and assurance that all is not lost.  there is light at the end of the tunnel. Grandparents need this hope also.

 

Terry Murphy – Grandma

When Jack was born I personally was terrified.  Not knowing how this little infant could overcome such obstacles I was of little faith. Defying all the doctor’s predictions “Fighting Jack Murphy” has proven to all of us his will to not only live but thrive.  He is an inspiration to all to keep your faith and Believe

 

Erin Murphy – Aunt

Jack has been an inspiration to me from day 1. Jack has overcome so many obstacles and continues to exceed every expectation that has been set for him. We are so proud of him.

The specific moment that stands out to me about Jack is when I saw him walk for the first time. He was so determined to figure it out and we knew it was only a matter of time. I was so proud when he did it all by himself. Now we watch Jack run around with the biggest smile on his face all the time! I couldn’t be prouder of him!

Jack has overcome every obstacle that has been put in front of him and continues to do so everyday. For all this little boy has been through, he is the happiest little kid I’ve ever met. He puts an instant smile on everyone’s face and is a true inspiration for everyone around him.

 

From Jack’s Support Team

Laura Paszyna – Jack’s Early Intervention Physical Therapist

Where do I start? From sitting, crawling, standing, and walking, Jack amazed me with his successes. When we first met him, he was a little guy just trying to get through his medical issues who could barely lift his head. Then with each session and the incredible follow-through of his family, Jack progressed through each milestone.

Jack does things on his own time. He is a very smart kiddo who easily figured out how to go around or avoid the chalenge all together. I remember several sessions where we wanted him to walk over a cushion in his path to help with his balance and stability. He would just move it out of the way, walk around it, or just sit down refusing to go near it. Then as his family and I were chatting, Jack just got up and walked across it like he’d been doing it for months. Jack does things on Jack’s terms!!!

Just meeting Jack and his family has changed me. With every curve ball they have been thrown, they face it with strength, grace, and some humor. Jack has and will continue to flatten all the bumps in front of him…when he decides of course!

Jill Gierman – Jack’s Preschool Teacher

Jack has shown myself and all of his peers that he a strong, young man with a great attitude! This is Jack’s first school experience and he walked into school on the very first day ready to go! He didn’t look back and has been doing so well ever since!

Jack and I were building a block tower together. I thought we were all done (it was a really tall tower), but Jack disagreed. He went over to the shelf and found more blocks and kept going! It may seem like something small, but it my eyes, Jack persisted and created his own work independently.

I also recall the first time Jack joined in with our hello song. He was sitting in his favorite cube chair and started clapping on the sides along with the song. The smile on his face was so bright and big! What a great moment!

I love having Jack in my classroom! He has taught me so many new concepts. His positivity and humor are contagious. His education team and peers are always happy to see him and be a part of his day.

Gifty Abraham – Jack’s Occupational Therapist

Jack has come a long way and his hard work has definitely paid off. I love his smile which is contagious, and his willingness to work hard and try his best. Jack is currently able to do a lot of things that kids his age love to do including swinging, climbing, and participating in fine and visual motor activities.

We have a waterbed in one of the OT rooms. I was curious to see if Jack would like to play on the waterbed which is an unstable surface. I remember the first time I carried him and placed him on the waterbed. He got nervous and cried (which was sad to watch). But after few sessions of therapy, in the context of play I had him slowly reach for items on the waterbed and eventually get him on the waterbed as well. I remember that time when he sat on the waterbed, a little cautious (wide eyed) but willing to stay seated. He then smiled and started tapping the mattress communicating his pleasure. I was excited and proud that despite that activity being challenging, he was willing to try and do his best. Now, water bed is one of his favorite things in the room. He is much more willing to take risks and challenge himself which is exciting to watch.

Honestly, I love working with Jack because he reminds me that no matter what the challenge, perseverance always helps. Jack is a beautiful example of “Great works are performed not by strength but by perseverance” (quote by Samuel Johnson).

Paula Contois – Jack’s Speech-Language Pathologist

As Jack started his preschool year, we did not anticipate the level of engagement that he has demonstrated. His intrinsic motivation to participate in activities has superceeded our expectations! He is beginning to initiate communication and makes our whole staff smile.  Given his limitations at this time, Jack is still attempting to verbalize, which is truly amazing. I am truly blessed to have worked with Jack.

Teaching anyone how to utilize a voice output system to communicate is usually a challenge. Jack has accepted the device and is understanding that it is a tool to communicate. He is just an amazing kid!

Jack and his family are a true representation of faith and perseverance. Jack represents to me that “anything is possible!” Jack has challenged me as a therapist in such a positive way. I continue to grow as a Speech-Language Pathologist every day that I work with him. He has taught me more about communication than I knew even months ago or could’ve learned in school. ! He has made a significant impact in my life that I will forever carry with me.

 

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