Family

"We, as a family have learned not to focus on the medical conditions,

but rather on our children as individuals...

and not letting their illness or disability define them."

Written by the mother:

"Having 4 Kids is a task in itself. But having two children with cystic fibrosis, and another who is profoundly disabled adds a whole new dimension to so-called normal daily living.

May and Grace both have cystic Fibrosis. It requires multiple medications today, along with chest Physiotherapy twice a day, which lasts about 30-40 minutes each treatment. This is just to maintain their health. When they get certain bacteria in their lungs, or get sick they are usually admitted to the hospital anywhere from 10 days two two weeks. Just the day to day tasks of keeping up with medications and treatments is very time consuming. Then as you can imagine, if they need to be in the hospital, it takes it to another level of stress and chaos.

Jane, is profoundly disabled. She is 100% care dependent on others. She is non-mobile and nonverbal. And she has to be fed by a G-tube.

Having a family with children who require medical care, and will require medical care the rest of their lives is stressful. But you learn to adapt very quickly. We, as a family have learned not to focus on the medical conditions, but rather on our children as individuals, and that's a family. Having a positive attitude, and faith makes our life happier. The typical day to day stuff becomes normal routine. And we go from there. We let our kids live their life to their fullest potential. Each one, building strong, independent personalities. And not letting their illness or disability define them."

These four sisters knows what it means to take care of each other. Halfway through our session Jane started to choke for air. Rose ran for the suction machine. Everyday moments for them. Their mother takes it all in stride and laughs when could cry. The family has an energy as an entity, a unit. Together they can take on the world. See more of their images and behind the scenes below:

*Children and their stories are real, names are not.

Graceful Beauty

Ventricular Septal Defect.

Her heart has a valve that back flows.

Written by the mother:

"Bird has a ventricular septal defect (VSD). Her heart has a value that back flows. She also has a cerebral folate deficiency. It cause slow growth, heart conditions, weak teeth and brittle hair. That's why she only weighed 2lbs 4oz at birth. She has needed physical therapy, occupational therapy, speech therapy and leg braces."

Bird is a tiny thing, with a voice that Snow White would envy. She loves her violin and is basically an animal whisperer and loves animals of every kind. She also likes to play rough and can keep up with the boys- until she feels her heart beat wildly in which she puts herself in a 'time-out' of the resting sort. See more of her session below:

*Children and their stories are real, names are not.

All images ©Bren Slade and OnceUponAPix 2019 and may not be used or reproduced without permission.

Wild Energy

Growing up with Autism and FASD

David and Quincy are neighbors and friends. David was diagnosed with autism as a toddler. Quincy, who was adopted at birth, was diagnosed first with FASD (Fetal Alcohol Spectrum Disorder) and then autism as well. Both boys struggle in different ways to make sense of their environments. David loves his yellow blanket, Quincy eats mostly caramel popcorn. Both have eyes like baby deer, and when you look into them, you see two of the most beautiful souls.

*Children and their stories are real, names are not.

All images ©Bren Slade and OnceUponAPix 2019 and may not be used or reproduced without permission.

Joy

Written by her mother:

"BrynnLe has opened our family's eyes to a whole new beautiful world. A life that is brighter, kinder and so full of love. Down Syndrome does not define BrynnLe, she is so much more than a label."

We had so much fun with BrynnLe's images! The whole family got involved. You will see what I mean below:

All images ©Bren Slade and OnceUponAPix 2019 and may not be used or reproduced without permission.