Hi, Jack.
Jack was just six months old when he passed away from Spinal Muscular Atrophy (SMA). He is why Feeding Littles LLC is here today. His mother Sarah connected Judy and Megan in 2014 and forever changed their paths.
Jack had such an impact on the world in his short time on earth. He has inspired so much love, creativity, and dream-chasing hope. He taught us to stop waiting and do what we love, right now. Judy and Megan love helping families feel great about their feeding journey, and we thank Jack for allowing us to live out this dream.
More about Jack, from his strong, graceful mama Sarah:
From the moment I found out we were pregnant with our first child, we dreamed of the beautiful future we would have. What would he look like? What would he love? What would he grow up to be? The day I held him in my arms for the first time was the best day of my life. Our sweet boy didn’t cry when he was born. He opened his eyes and looked all around the room, taking in this brand new world. We named him Jack. I instantly fell in love with this little being. I loved his bright blue eyes, his sweet smiles, how he gazed at the world with such wonder.
A few days after his birth, we started to notice Jack could not move his muscles like he should. He began to have trouble nursing and always seemed tired. During one of our visits to the pediatrician, the doctor laid Jack on his stomach to see him practice tummy time. Jack’s face stayed planted to the table, unable to lift it or move it to either side. That was a red flag, but they were not too concerned at the time. A week later we went back to the doctor. She noticed he still could not hold his head up. She told me it looked like he had low muscle tone and that we needed to make an appointment with a neurologist. I remember going home that day and holding Jack in my lap. I had him grasp my finger and hold on tight. Each time he would slip and loose grip. I remember telling him it was ok, that we would help him get stronger.
Jack started eating less and less and had trouble breathing when he cried. I decided we couldn’t wait for the appointment with the specialist. We went to the ER immediately. After a week stay in the hospital, and many tests, Jack was diagnosed with the #1 genetic killer of children under 2, Spinal Muscular Atrophy or SMA. My husband and I both carried the gene responsible for SMA. We had never even heard of it. We were told he had the most severe type and had just 6 months to live. Six months. Our world fell apart. I remember running down the hall to an empty room and just crying on the floor. This couldn’t be happening. We were going to lose the most precious thing in our world.
We decided to go home with Jack rather than stay in the hospital. We wanted him to be comfortable and spend our time making memories. Jack required multiple machines. He needed to be fed through a feeding tube, was on oxygen, and required a suction and cough machines since he had lost the ability to swallow.
Jack also received Occupational and Physical Therapy. That is how we met Judy. She was such a breath of fresh air. She taught us how to keep Jack comfortable, brought adjusted toys for him to play with, and created a customized feeding plan. Judy worked with Jack several times a week and each time she was full of tips and ideas to fit his own specific needs. Judy allowed me to feel like a mom again. Jack had a feeding tube quite early on; however, he tasted apples and peaches and enjoyed getting flour on his hands while making pizza dough. We were reminded that Jack was still a baby and loved doing things all babies do, just in his own way. The first time I saw Jack use an arm sling to assist him in pushing a hanging toy back and forth (after not seeing very much arm movement for weeks) was a moment I will never forget. Judy quickly became a large part of Jack’s life and a very close friend.
Because Jack was unable to lift or use most toys made for babies his age, I decided to make him a small tag toy that had crinkle material inside for him to explore. He loved it! I continued to create more tag toys and blankets. Crafting was very therapeutic during this roller coaster we were on. I opened my Etsy shop a month after Jack’s diagnosis. I named it Jumping Jack in his honor. I made the first headband for Jack. It held his oxygen and feeding tube in place.
Each day was a celebration with Jack. We made him a bucket list of all things children love. We brought him to the zoo and the aquarium, we took him hiking and sledding. We let him feel the grass between his toes, and the rain drops on his cheek. All while carrying oxygen tanks, feeding bags and suction machines with us. We had a birthday party each month and celebrated most holidays a few weeks early, not knowing which would be his last. I took the fastest showers I could, in fear something would happen to him while I was not there. He slept by our side each night. I loved holding his hand and staring into each other’s eyes as his slowly closed. Often times, Jack would wake up in the middle of the night and talk to us. He would smile and make the sweetest sounds. My husband and I wouldn’t trade those peaceful moments for the world.
We celebrated Christmas early that year with family and friends. We opened presents with Jack, taking in each moment. On December 23rd, Jack took his last breath in my arms at just 6 ½ months old. He was surrounded by family and love. We donated Jack’s organs in hopes he could help save a life. We made unforgettable memories each day. We were so lucky to have had this beautiful boy a part of our lives but would have given anything to watch him grow up. He is truly the strongest person I know.
Jack had such an impact on the world in his short time on earth. He has inspired so much love, creativity, and dream-chasing hope. He taught us to stop waiting and do what we love, right now. Judy and Megan love helping families feel great about their feeding journey, and we thank Jack for allowing us to live out this dream.
More about Jack, from his strong, graceful mama Sarah:
From the moment I found out we were pregnant with our first child, we dreamed of the beautiful future we would have. What would he look like? What would he love? What would he grow up to be? The day I held him in my arms for the first time was the best day of my life. Our sweet boy didn’t cry when he was born. He opened his eyes and looked all around the room, taking in this brand new world. We named him Jack. I instantly fell in love with this little being. I loved his bright blue eyes, his sweet smiles, how he gazed at the world with such wonder.
A few days after his birth, we started to notice Jack could not move his muscles like he should. He began to have trouble nursing and always seemed tired. During one of our visits to the pediatrician, the doctor laid Jack on his stomach to see him practice tummy time. Jack’s face stayed planted to the table, unable to lift it or move it to either side. That was a red flag, but they were not too concerned at the time. A week later we went back to the doctor. She noticed he still could not hold his head up. She told me it looked like he had low muscle tone and that we needed to make an appointment with a neurologist. I remember going home that day and holding Jack in my lap. I had him grasp my finger and hold on tight. Each time he would slip and loose grip. I remember telling him it was ok, that we would help him get stronger.
Jack started eating less and less and had trouble breathing when he cried. I decided we couldn’t wait for the appointment with the specialist. We went to the ER immediately. After a week stay in the hospital, and many tests, Jack was diagnosed with the #1 genetic killer of children under 2, Spinal Muscular Atrophy or SMA. My husband and I both carried the gene responsible for SMA. We had never even heard of it. We were told he had the most severe type and had just 6 months to live. Six months. Our world fell apart. I remember running down the hall to an empty room and just crying on the floor. This couldn’t be happening. We were going to lose the most precious thing in our world.
We decided to go home with Jack rather than stay in the hospital. We wanted him to be comfortable and spend our time making memories. Jack required multiple machines. He needed to be fed through a feeding tube, was on oxygen, and required a suction and cough machines since he had lost the ability to swallow.
Jack also received Occupational and Physical Therapy. That is how we met Judy. She was such a breath of fresh air. She taught us how to keep Jack comfortable, brought adjusted toys for him to play with, and created a customized feeding plan. Judy worked with Jack several times a week and each time she was full of tips and ideas to fit his own specific needs. Judy allowed me to feel like a mom again. Jack had a feeding tube quite early on; however, he tasted apples and peaches and enjoyed getting flour on his hands while making pizza dough. We were reminded that Jack was still a baby and loved doing things all babies do, just in his own way. The first time I saw Jack use an arm sling to assist him in pushing a hanging toy back and forth (after not seeing very much arm movement for weeks) was a moment I will never forget. Judy quickly became a large part of Jack’s life and a very close friend.
Because Jack was unable to lift or use most toys made for babies his age, I decided to make him a small tag toy that had crinkle material inside for him to explore. He loved it! I continued to create more tag toys and blankets. Crafting was very therapeutic during this roller coaster we were on. I opened my Etsy shop a month after Jack’s diagnosis. I named it Jumping Jack in his honor. I made the first headband for Jack. It held his oxygen and feeding tube in place.
Each day was a celebration with Jack. We made him a bucket list of all things children love. We brought him to the zoo and the aquarium, we took him hiking and sledding. We let him feel the grass between his toes, and the rain drops on his cheek. All while carrying oxygen tanks, feeding bags and suction machines with us. We had a birthday party each month and celebrated most holidays a few weeks early, not knowing which would be his last. I took the fastest showers I could, in fear something would happen to him while I was not there. He slept by our side each night. I loved holding his hand and staring into each other’s eyes as his slowly closed. Often times, Jack would wake up in the middle of the night and talk to us. He would smile and make the sweetest sounds. My husband and I wouldn’t trade those peaceful moments for the world.
We celebrated Christmas early that year with family and friends. We opened presents with Jack, taking in each moment. On December 23rd, Jack took his last breath in my arms at just 6 ½ months old. He was surrounded by family and love. We donated Jack’s organs in hopes he could help save a life. We made unforgettable memories each day. We were so lucky to have had this beautiful boy a part of our lives but would have given anything to watch him grow up. He is truly the strongest person I know.
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A year later, my husband and I were blessed with a beautiful, healthy baby girl named Melia Jack. Melia means “wished for child”. She is truly a miracle.
Today Jumping Jack has developed into much more. I love that Jack is the inspiration behind what I do each day.
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SMA Facts:
1 in 40 people unknowingly carry the gene responsible for SMA.
It is the #1 genetic killer of infants and young children.
SMA hinders the ability to walk, stand, eat, swallow and breathe.
There currently no treatment and no cure.
***If you would like more information about SMA please visit www.thegsf.org and watch this video https://www.youtube.com/watch?v=osPYUVGB_aw ***
Esty shop: www.jumpingjackjack.etsy.com
Instagram: @shopjumpingjack
Email: shopjumpingjack@gmail.com
Today Jumping Jack has developed into much more. I love that Jack is the inspiration behind what I do each day.
----------------------
SMA Facts:
1 in 40 people unknowingly carry the gene responsible for SMA.
It is the #1 genetic killer of infants and young children.
SMA hinders the ability to walk, stand, eat, swallow and breathe.
There currently no treatment and no cure.
***If you would like more information about SMA please visit www.thegsf.org and watch this video https://www.youtube.com/watch?v=osPYUVGB_aw ***
Esty shop: www.jumpingjackjack.etsy.com
Instagram: @shopjumpingjack
Email: shopjumpingjack@gmail.com
Judy, Sarah and Megan - May 2015