Jackson France: The Magic of Being Perfectly Imperfect

Written by Kristilyn Slabey

I will never forget the day I met Jack. I imagine precious few people could. Of course, I saw and heard the mechanical whirring and beeping of his ventilator, but more than that, I saw his smile. When he smiled this adorably coy little smile, I knew that was it. I felt my heart melt, and I knew there was something very special about this little boy. Then, as I showed his Mom (Monica) and Dad (Jayson) back to our patient room, Jayson noticed I was wearing a Harry Potter shirt. He instantly got excited and turned to Monica and said, "She's one of us!" I later learned that they were both big fans of Harry Potter as well. I instantly felt a connection with this family, and I knew we just had to share the story of Jack's incredible journey. 

Jackson on Delivery Day!

As a parent, you naturally want what's best for your child, but it can be incredibly hard to know what the best choice for your child is, even in the best of circumstances. However, when you find yourself facing a life-altering decision like whether or not to your child should go through amputation surgery, it can be downright terrifying. Jack was born with a condition called Tibial Hemimelia in his left leg. This condition meant that Jack's left leg did not form normally, and his knee joint was never going to work properly. Monica and Jayson were presented with several different treatment options, and to make a decision on which path would be the best for their son who was not even two at the time. Monica recalls, "It's definitely scary! You want to give them [your child] their best chance. You have to look at long term what is going to be best. We knew this [amputation surgery] was the right decision for Jack. With a prostheses, you can do anything! We knew this would give him his best chance."

Jack has spent the majority of his young life in the NICU not only due to his amputation surgery but also for the other health complications that he has faced. As Jayson explains, "You have to understand. The NICU is its own little universe. You truly don't understand just how much this is true until you walk those halls every day, until you stop dead in your tracks because they are calling a code [a baby is in distress] and you are listening to try to figure out if it is your child's room. Or, when you hear a 'Vent Alarm' coming from your child's room and you suddenly find you can move at 70 mph trying to get back to their room to figure out what is going on." 

Jackson with his parents Jayson and Monica

Despite all the obstacles that Jack and his parents have been presented, Jack continues to astound and amaze his medical team by smashing through and overcoming each barrier he is presented. "It is a mixed blessing," states Monica. "It is hard and heartbreaking to see Jack struggle, but it is also absolutely incredible to watch Jack surpass everyone's expectations. I have learned patience [going through all of this]! Jack has taught me to slow down and celebrate every single milestone, no matter how small. People [in the general public] do not understand our journey and don't understand why, when we are eating out at a restaurant and Jack is able to eat half a French fry, we get so excited. That is huge for Jack." Monica and Jayson recall some of the milestones that stood out the most to them were: Monica being able to hold Jack on her own without the nurses helping her when he was 3 ½ months old, getting to take Jack home from the NICU last July, when Jack was able to move his fingers (finger isolation movement) on his own even though doctors warned he may not ever be able to do that, and watching Jack stand for the first time on his prosthesis. Now, not only is Jack much more mobile, he is learning how to go up and down steps and has even figured out how to move his ventilator along with him so that he isn't limited on where he can go!

One of the things that is very important to both Monica and Jayson was that Jack's first prostheses be uncovered. Meaning that they would not be made to look cosmetically like an anatomical limb. "We want him to embrace who he is not try to cover it up," explained Monica. "Perfectly imperfect is what we like to call it. We want him to see his prosthesis as 'his' leg. Later on, if he wants a prosthesis with a cover, he can do that, but we want him to view his prosthesis as cool and normal too." Jayson added, "We want him to view his prosthesis as his cool new 'hardware'."

Monica and Jayson both had this advice to offer other parents going through what they went through with Jack: "Take care of yourselves!! You can't take care of your child if you don't take care of you. YOU are your child's advocate. Don't be afraid to be scared. You are going to feel afraid, but just make sure that whatever decision you are making is what you feel is best for your child. Do your research and educate yourself about all the options presented to you, and know that it's ok to second-guess yourself. Let yourself feel those feelings. It is normal! Also, it is incredibly important that you be there for one another [as parents]. You have to find the strength within yourselves each and every day to never give up. Having a sense of humor is also a must!!"

When asked about their experience at Optimus  and if they would  recommend us to

others, both Monica and Jayson instantly responded "Absolutely!" They went on to explain, "You guys are awesome. You make people feel comfortable and work with people. You really go the extra mile. I mean, come on, Harry Potter Robes!!" What Monica was referring to was a special moment with Jack and I. I made a promise that I would get dressed up in my Hogwarts school robes complete with magic wand, and Jack and I would get a picture together in the new office space once we moved. As you can see, from the attached photos, I kept my promise and had a blast doing it! I know that we are all so excited to see all that the future holds for Jack! He is one very special little boy who has certainly made a huge impact on all of us.