Live 15 Minutes at a Time
In our conversations with other families and parents of children with disabilities, many have uttered the words “my pregnancy was as normal as could be.” Kimberly shared that her pregnancy with Blake was no different. Blake is her middle child, her rainbow baby. However, upon Blake’s arrival, his parents knew right away that something was not quite right.
Blake was born with horrible reflux and they quickly found out that his stomach was not emptying. Not long after this realization, Blake was put on a Nasogastric tube, or NG tube. He later used a Gastrostomy tube, or G-tube for feeding and venting. When his G-tube was put in, the doctors noticed that Blake had hernias and high blood pressure. Blake’s kidneys were not functioning properly and at the age of three, he had major kidney surgery. As far as diagnoses go, Blake’s family was told “science just hasn’t caught up.” She said it was frustrating and heartbreaking to hear these words while watching her baby suffer.
Today, Blake is nine years old and just had his feeding tube permanently removed. While his family has received many diagnoses for Blake, they do not have one single diagnosis that explains everything that he and his family have dealt with over the years. Despite the hardships Blake has been through, he is known for his intellect and his emotional sensitivity. “He has lived a lot of life in his 9 years” and his heart is his gift. Blake once had dreams of being a chef but currently aspires to be a child life specialist.
Kim’s best advice to parents with children who have disabilities or medical diagnoses is actually advice that was given to her by one of her good friends. Her friend, Liz, told Kim “there are some days where we live for 15 minutes at a time.” Kim went on to say sometimes you might be able to get through an hour at a time, or a day at a time. “Be strong in small increments” and keep your focus off of the “what if’s.” We would add to this advice by saying, find a community of people who can bring you back to reality when you need it, people who hold you accountable by reminding you to breathe, take one step at a time and rest.
For the rest of the world, Blake’s mom wants people to know that he might look scary or overwhelming on paper but he is a kid with tons of talents and interests, just like everyone else. If you saw Blake on a playground with 30 other children, you would not be able to pick him out. “Always presume competence” said Kim.
Blake and his siblings, Wesley (12) and Molly (6)
Kim, eager to use her family’s journey for good and affect positive change, sits on the parent board at the Children’s Hospital of Richmond at VCU. She says her favorite part of this position is being able to thank the custodial staff who often goes overlooked in the hospital setting but are so imperative to the safety of our loved ones.
Kim also started a small business selling medical binders and teaching parents how to utilize them. A medical binder was something Kim realized she needed early on. She kept all of Blake’s records and appointments in there and brought it with her so she could easily share important information with various providers. A Pediatric Patient Advocate at VCU who was working with Blake looked at Kim one day and said “do you think you could teach others to create a binder?” Kim said yes, applied for a grant for the materials she needed, and off she went to the NICU to teach new parents of medically fragile babies. Although the funds had run out, her passion had not and her small business, OrganizedAdvocacy, was born. Kim also offers IEP binders, adoption binders, veteran binders and life binders. Kim looks at this business not as a way to make money but a way to help and bless others. The best part is watching people become visibly more relaxed. Her passion and love for others was abundantly clear in our conversation.