Friday, June 16, 2017

Special Needs Spotlight || Jaxon and Edison

This Little Miggy || 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.

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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.
This Little Miggy || Jaxon and Edison
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.”


Miggy: How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations? 

Renee: Aside from the obvious--not using the dreaded “R” word--please talk to them and not around them. Make eye contact and truly wait for a response. Know that this response may not come in the way of actual words but it might be a smile or a giggle, a high five or a simple touch, maybe a squeal but they will respond in their own way. They are both incredibly aware, have great receptive language and are very intuitive. Don’t dismiss them because you can’t take the time to see this about them. If you can take the time to get to know our boys, you will see how hilarious, cheeky and fun they both are.

Most importantly, please don’t pity or feel sorry for our boys or our family. There is nothing to pity! We are a young family with two beautiful boys. We live life to the fullest. We don't feel sorry for ourselves and don’t want others to either.


Miggy: If you could say something to the mom who just starting on this journey of undiagnosed special needs, what would you say? What would you say to yourself if you could go back in time?


Renee: Sounds cliche, but “It will be okay.” Raising kids with special needs is challenging, I will not deny that. However, it is beautiful and amazing! In the early days, I felt envy over friends and family, even strangers, whose children did not have special needs. There was always a pain in my heart. I can sincerely say today, I do not feel this anymore. Instead, I feel only blessed to have my two beautiful boys. They make me smile and laugh every day. Being a parent is watching your children grow and develop, worrying over every small thing, going on school field trips, taking them to the doctor, listening to tantrums, and giving comfort when needed. I still have all those things and more!
This Little Miggy || Jaxon and Edison
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom? 

Renee: I have learned to really take things one day at a time, to cherish the small things and to worry less. I sure have learned to appreciate everything and find joy and happiness in almost anything. I can honestly say being a special needs mommy has taught me how to be HAPPY. I believe I am happier and more fulfilled that I would be otherwise because I have experienced such heartache.

When Jaxon was small, I used to wake up every day and try so hard to be happy. I would tell myself to be happy. I would think about things that would make me happy. I put all of my energy into being happy. Slowly, over time, it took less and less energy. A few days before Jaxon’s 5th Birthday, I was driving to the party store to pick up balloons and I realized I was “just happy.” I don't know when I stopped “trying,” when it happened but I just was. I started crying such happy tears because I had made it to that happy place and there I have stayed!

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Renee that was awesome. Thank you so much for sharing your story with us.  I really love that you said, "Most importantly, please don’t pity or feel sorry for our boys or our family. There is nothing to pity! We are a young family with two beautiful boys. We live life to the fullest. We don't feel sorry for ourselves and don’t want others to either." AMEN. I can honestly say that I don't think I understood pity until having Lamp. I had a vague concept of the idea, but honestly if I was going through something hard, I sorta wanted people to feel sorry for me. But sympathy, empathy and pity are very different. I have come to learn that pity comes from a place of judgment. Pity doesn't listen. Pity isn't "mourning with those that mourn." Pity is judgment. Pity is looking at someones life and automatically assuming that their life is harder, sadder, and overall less desirable than your own. And since that often happens with people who are disabled, you can imagine what a constant draining and damming experience pity can be. If I may borrow a popular and timely phrase and apply it to loving and parenting a child with disabilities, I would just like to remind you of this: love is love is love is love. Thanks Renee. Please give those beautiful boys a squeeze from me. 

As always if you or someone you know would like to participate in the special needs spotlight please email me! I'm always looking for new participants. 

I hope you have a wonderful weekend! (We're still in Paris!! Feel free to follow along on my Instagram!)

Au Revoir!
Mignon (my actual middle name that means 'cute' in french)

1 comment:

  1. I just wanted to comment on how much I have learned from your articles about families with special needs children, Miggy. Even though I have a master's degree in special education, these personal interviews with these parents have enlightened and deeply enriched my understanding. Thank you for providing us with these opportunities! I have several grandchildren and great nieces and nephews with special needs now, and I continue to grow and appreciate them with new light, and increased love that I didn't realize was possible.

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