Special Needs Spotlight || Jaxon and Edison

Hi, my name is Renee Williams. My husband, Adam and I have two young boys Jaxon (7) and Edison (4) who share an undiagnosed genetic condition that causes them to have Global Developmental Delays. Jaxon and Edison are full of life, they are silly and loads of fun! Our life is incredibly busy and our boys certainly keep us on our toes! We are so blessed to be lucky enough to be raising these two amazing little boys. I never could have imagined this life but now that we are here, I could not see it any other way.

Miggy: Welcome Renee and thank you so much for being here today and sharing your beautiful family with us. Your first son was born prematurely and it was assumed that when he was showing signs of developmental delays that it was due to his prematurity. However when your second son was born things took a turn. Can you walk us through that time period–what happened and at what point did you learn that both of your sons were globally delayed? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Renee: When Edison was first born, everything went well. It was a very typical pregnancy with no complications, easy planned c-section birth. He nursed well immediately and we brought him home from the hospital with no concerns regarding his development. As Edison got bigger, I started to worry that he also was not progressing as he should be and started to wonder if there was something more to my concerns. When he was about a year old, the Specialists were in agreement that indeed Edison was displaying delays and that the boys likely shared a genetic reason for their delays rather that what was initially thought with regards to Jaxon.

Though this was difficult news, it was actually easier the second time around because we had experience raising a child with special needs. By this point, it was not so much the fact that Edison had special needs that scared me but more so the notion that now we would be raising two boys with special needs.

My feelings now are this: Our life is never dull, we face challenges every day that many people couldn’t imagine. However, I cannot imagine it any other way. Our boys are so fun! They do many things that other children do like horseback riding, downhill skiing, skating and bike riding. They have many firsts and in fact I appreciate these firsts on a different level than many people might. They are children first and though raising them looks and feels different than it does for many, we are still just raising our boys!

Miggy: At this point you don’t have a diagnosis, so can you explain your children’s differences and how they affect your day-to-day life?

Renee: Both boys have Global Developmental Disabilities and therefore have significant delays in all areas of their development. Jaxon uses a wheelchair primarily for mobility and is non verbal. He also relies on a feeding tube for nourishment. Edison walks short distances (toddler walk), relies on wheelchair for long distances and in also non verbal. He loves to eat though! Both boys are able to communicate using various signs, gestures and augmentative communication devices.
Our day to day life requires a great deal of organization and routine. We have become physiotherapists, speech therapists, occupational therapists and nurses and need to wear these various hats every day. We need to have a tremendous amount of patience and understanding with our boys. Most importantly, our life requires that we plan and think out every single event we attend even if it as small as going to nana and grandpa’s for dinner. This ensures that the boys are successful. We need to correct equipment and aids for each situation, Jaxon’s formula, medications etc. It is never as easy as just loading the kids in the car and going.

Miggy: What are the biggest worries you face for your children? What are your hopes and dreams for their future?

Renee: The biggest worries I face for my children have to do with their future and them growing up. How will we care for them when they are bigger and we are older?

When Jaxon was a baby and we learned that he was going to have a disability, I remember thinking to myself–it is okay because we will give him a happy, safe and beautiful life. He will be loved and cherished and unlike all that is happening around us, this I can actually control. Loving him is easy! For the boys’ future, I want them to be happy and loved. I hope that they accomplish much more than just that and I do not doubt they will–they already have. However, if they feel happy, fulfilled and loved, I will be happy with whatever they do.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Renee: About a week before Edison was born, I was putting Jaoxn back into his crib (in the middle of the night) and his G -tube got stuck between my giant belly and his crib and the tube pulled out of his belly. It was fairly new and and at this point we did not now how to put it back in. So to the hospital we went. When we arrived the nurse said, “Oh so the cheeky little guy finally pulled his tube out.” To which I had to sheepishly reply, “Nope, it was my belly.”