Joy. Struggle. Beauty. Life.

I have thought a lot lately about how the things that families of disability experience are the most real things of life.  My daughter Lena has zero capabilities for pretense.  She never has to try to be vulnerable or authentic…she is who she is 100% of the time.  She teaches me more in a moment than my mind or heart can process in a lifetime.  

That is just a page in the bigger story of disability

At 99 Balloons, we glimpse these things over and over again and want to share with you all the beautiful things we get to see and behold.  Join us, as we give you just a page in how the story of disability is changing

Mark and Amber Leonard met at Harding University and after graduation in 2005, they married and moved to Little Rock where they lived for 8 years. They worked and did life as a young married couple. Mark is a software developer (Amber prefers to call him a “certified nerd”) and Amber has a background in banking and finance.  In 2011 Amber became pregnant but miscarried after few short months. By the love and grace of God she got pregnant again and Paxton was born February of 2013. Just a few months after Paxton was born Mark’s company offered him a promotion and asked them to move to Northwest Arkansas. Amber returned to work after a 14 week maternity leave to announce that they would be relocating. She finished up working and left her job to get ready for the pending move.

Amber had no idea at that time, the great story that was about to unfold in front of their family.  

The Leonards had been taking Paxton in for his regular check ups. Their doctor started to notice that Paxton wasn’t reaching his milestones at the appropriate times and assured them sometimes boys are a little slower to meet those.  They were told not to worry and were referred for some physical and occupational therapy just to see. A few more months rolled by and Paxton still wasn’t developing “on time” so he was referred for an MRI. About the beginning of their journey, Amber said:

“I’ll never forget that day. Our doctor called us less than 24 hours after the MRI to tell us that there was a major brain abnormality with Paxton’s brain. He didn’t know what it meant. It left us in a whirlwind. The sale of our house was closing in 2 weeks! With sad and weary hearts we loaded our cars and made our move to Northwest Arkansas.  I spent the first year in NWA in the weeds. We jumped into special needs with a giant belly flop and it was painful. The paperwork. Oh the paperwork. New doctors. New specialties. The unknown. There were all things I wasn’t familiar with being a first time mom.”

Amber and Mark and little Paxton started attending New Heights Church in Fayetteville, AR about a year after their move.  After a few weeks of attending and getting to know people a bit better, someone suggested that they attend a rEcess. Mark and Amber had basically been doing life together without much help. Neither of their families were around and they were tired.

So, they signed up for rEcess.

They have now been attending rEcess for almost 2 years now and Amber told us: “it’s been a HUGE blessing. We have met so many loving and wonderful people through 99 Balloons.”

For their first few nights of respite through rEcess, Mark and Amber ate dinner and literally walked around aimlessly in Target. They were not used to having this freedom.  Now that they are a bit more acclimated they will take the time to just go out as a couple and enjoy the peace.  Sometimes they hang out with friends, usually another rEcess couple!

We asked Amber to help us describe to others why respite is necessary and what having rEcess in their lives has meant to them.  Here’s what she shared with us:

“Respite, oh sweet, respite. We didn’t have much family around to help us. We had been going along just Mark and I and we were tired. We needed a break. We needed a minute to work on ourselves individually and as a couple. Knowing each month that we have this dedicated time carved out gives us just that. For me, it gives me a chance to see Paxton around his peers and how happy he is and how happy he makes the people around him. It also lets me miss him. It sounds silly I guess but sometimes the best part of the night is picking him up and seeing how much he missed me too. It’s a moment in time when my non-verbal child is expressing his love for me.”


{CLICK HERE to join us in Changing the Story of Disability by providing respite for many families just like the Leonards}