Siblings and Special Needs: Windows to the Heart
Noah holding a picture of him and his little brother Evan.
Today it’s my pleasure to welcome guest blogger Scott Newport back to Different Dream. He’s here to talk about the work he continues to do on behalf of families raising kids with special needs. In this post, he describes the positive effect his son Evan’s short life had on his brother, Noah, many years after Evan, who lived with Noonan’s Syndrome, went home to Jesus.
Windows
By Scott Newport, proud dad
We had been transferred from the Pediatric Intensive Care Unit (PICU) to a little four bed ward for sick children whose life depended on a breathing machine. Our family had lived in the hospital for eleven months and we were one step closer to taking Evan home where he would be able to die in the arms of those closest to him.
“Kids like Evan usually don’t live past the age of two,” was the agreed diagnosis by the staff.
Siblings and Special Needs: A Window into the Past
Noah, Evan’s big brother had just turned five and the University of Michigan’s C. S. Mott Children’s Hospital was kind enough to let us celebrate his birthday in the family resource center on the top floor. Since we had graduated from the PICU we were able to see some of the other sick but somewhat stable kids up and moving about.
“Hey, guys my name is Mike. Is it okay if I come in?”
Mike looked to be about seven years old and a nurse was toting him around the 5th floor. He was pretty much bandaged from head to toe on the right side and we learned later his mom was in jail for pouring scolding water all over him. For some unknown reason he wanted to visit our particular ward that day. The room was neatly packed with four kids on ventilators, two nurses, one respiratory therapist, and four matching machines pulsing to the sound of life.
Mike seemed to know his way around and the staff was trying to fill in as his only family. I could tell he had been there awhile and seemed to be a seasoned veteran.
Within a few days we got used to Mike stopping by and soon discovered Noah and I could go to his room and take him for a lap around the floor in his wheel chair that is, after we stood by and coached him during daily bandage change. I guess we were his reward if he could get through the excoriating pain of having the encrusted gauze ripped form his tender skin.
Noah seemed to really like Mike, often challenging him to a race. I would push Mike and Noah would run like crazy. We would start at the busy nurse’s station. Noah would take off to the right, and Mike and I would go to the left. The fifth floor was lined with rooms in the shape of a square. Who ever tagged the desk first was the winner. It’s kind of funny as I think back now because many times we never finished the race. You see, many of Evan’s doctors would see Noah running and would often stop him for a high five and a little chat.
One day I sat with Evan in my arms, making sure I was carful not to pull any wire or hoses from his body. I watched through the door as Mike and Noah exchanged jokes out in the hall. In that moment it was like looking through a special window. The window allowed me to take a peak what the future may look like for Noah. Noah would surely be a great big brother and no matter how sick or disabled someone may be I was confident he would protect them and honor them as any other human being.
Siblings and Special Needs: A Window into the Present
This past year Noah finished the eighth grade and is now fourteen years old. About a month ago we received a letter in the mail about a community Rising Star Award. At the banquet we discovered he was nominated by his eighth grade English teacher. The award was for local children overcoming adversity. Noah said later on the ride home, “I guess I got this because of Evan.” Penni and I both nodded.
The following week at the middle school graduation, his name was called again for the Royal Oak Middle School Caring Award. The principle said. “Noah is always willing to help the other kids around him and often heard saying, ‘One day I will be a doctor and will find a cure for the disease that took my brother three years ago.’”
At the graduation while sitting back that special window opened again, just like when I watched him and Mike all those years ago. I couldn’t be prouder of Noah. Even though the pain of losing a son and a brother will never go away I am comforted by knowing Evan’s life did matter and Noah is the proof of that.
Siblings and Special Needs: A Window into the Heart
Just this last week C.S. Mott Children’s Hospital had their first ever Sibling Award ceremony inspired by the story above. And as you may have guessed it is called The Windows Award. The tag line is “Viewing siblings through the framework of our Mott kids.” I made three windows for the occasion and a photographer took pictures with the kids looking through the frames.
This was just another way to remind me Evan’s life did and still does have meaning; an inspiration I need and something for all the brothers and sisters like Noah to help keep them succeeding even with in the most difficult times of their young lives.
Siblings and Special Needs Shout Out
Want to brag about the siblings of your child with special needs? Now’s your chance to leave a shout out in the comments box. I can’t wait to hear about your kids!
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By Scott Newport
Scott Newport is a carpenter who has a vision for unwanted, damaged wood. His finds are treasures to his soul. Each discovery he makes unfolds into a beautiful piece of furniture for which he finds a home, usually with a child or caregiver of a child with special needs. He writes about the life lessons he learns from his 3 children, especially from Evan who died in November of 2009 after 7 years of joyful life. To access all of Scott’s guest posts, click on the magnifying glass at the top of the page and type “Scott Newport” in the search box.
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Wow, just love hearing these other stories about siblings. And thanks Jolene for allowing me to share this wonderful story about my boys. Would be so honored to hear more about siblings if any are willing. I know the stories are out there.
Wow, just love hearing these other stories about siblings. And thanks Jolene for allowing me to share this wonderful story about my boys. Would be so honored to hear more about siblings if any are willing. I know the stories are out there.
Thank you, Heidi. For those of you who want to learn more about Alexia Grace, visit her website at alexiagracemusic.com.
Thank you, Heidi. For those of you who want to learn more about Alexia Grace, visit her website at alexiagracemusic.com.
I completely agree, being a sibling to a special needs child is difficult, but I believe it shapes them into the amazing young men/women God is calling them to be. I still break down in tears everytime I listen to Alexia Grace’s song (age 11) that she wrote to encourage her sister, Elise (NS SOS1 – 13 years old), that she doesn’t have to struggle with being different because she is exactly as how God has made her to be. What a joy to watch both of them embrace the way they are made.
I completely agree, being a sibling to a special needs child is difficult, but I believe it shapes them into the amazing young men/women God is calling them to be. I still break down in tears everytime I listen to Alexia Grace’s song (age 11) that she wrote to encourage her sister, Elise (NS SOS1 – 13 years old), that she doesn’t have to struggle with being different because she is exactly as how God has made her to be. What a joy to watch both of them embrace the way they are made.
How sweet of Erin to hold Emma’s hand and help with her therapy. She must give courage to both of you. Thanks for giving Erin a shout out!
How sweet of Erin to hold Emma’s hand and help with her therapy. She must give courage to both of you. Thanks for giving Erin a shout out!
What an awesome brother and young man! Congratulations Noah! You rock!
What an awesome brother and young man! Congratulations Noah! You rock!
My daughter Erin is a great little sister to Emma who has Noonan Syndrome with Multiple Lentigines/aka LEOPARD Syndrome. She has set through more Doctors appts than I can count she has held Emma’s hand giving her courage when Emma gets her shots every night and she has helped her with her Physical and Occupational Therapy. I am so proud of her. She gives me strength.
My daughter Erin is a great little sister to Emma who has Noonan Syndrome with Multiple Lentigines/aka LEOPARD Syndrome. She has set through more Doctors appts than I can count she has held Emma’s hand giving her courage when Emma gets her shots every night and she has helped her with her Physical and Occupational Therapy. I am so proud of her. She gives me strength.
Special shoutout to my daughter Erin, for her (generally) loving attitude towards her big sister Emma. We are blessed that Emma has a milder manifestation of Noonan Syndrome and is now nine years old. Erin can usually be found at Emma’s side for any medical procedure or visit that Emma goes through. Even with her own fear of needles, she is usually soothing Emma during the nightly growth hormone shots. They are both my little troopers, and my heroines.
Special shoutout to my daughter Erin, for her (generally) loving attitude towards her big sister Emma. We are blessed that Emma has a milder manifestation of Noonan Syndrome and is now nine years old. Erin can usually be found at Emma’s side for any medical procedure or visit that Emma goes through. Even with her own fear of needles, she is usually soothing Emma during the nightly growth hormone shots. They are both my little troopers, and my heroines.