My Reflections on Almost Home Kids

By Marilyn Berg

As the first employed nurse at what would become Almost Home Kids, I have been a part of the AHK mission from the beginning!

My career as a pediatric nurse spanned over 40 years and provided the opportunity to work in a variety of settings.  The majority of these years were spent providing home care for children with medical complexities where I had the privilege of caring for a special boy named Danny, whose mom became one of the founding mothers of Almost Home Kids.  While caring for Danny, I was encouraged to apply for the newly created Director of Nursing position, and I was so fortunate to be hired to fill this position.  At this time, an existing home in Naperville was being renovated, and would soon become Respite House.

For several months, construction was ongoing, and then the finishing touches were completed.  I can remember how I became involved in painting some of the outdoor trim on the house, finding someone to lay sod that had been donated, making suggestions for proper placement of sinks for hand washing for the staff, etc.  Then, there was development of the forms to be used by the future nursing staff and writing the necessary policies and procedures.

The dream and innovative idea of the founding moms was to create a homelike setting for children with medical complexities to go to when the need arose. At that time, if there was an emergency at home or if the home care nurses were not available, there was no solution other than for the child to go to the hospital. There was no respite care program like this anywhere, so there were many challenges ahead. 

Once the house opened in October 1999, I spent time getting out into the community, visiting schools and meeting with organizations, telling them about Respite House. Then as I received inquiries, I conducted home visits to learn as much as possible about these families and their children with medical complexities. This was so important to me as I could give them reassurance and begin to establish a trusting relationship. As parents came to see the house for the first time, it was such a feeling of joy realizing that these parents had a place to bring their child and they could have some welcomed relief if needed. Some parents had never had a chance for any kind of a vacation, or any respite days.  The home was located in such a beautiful outdoor setting and was so child-friendly on the inside!!

Since we were not-for-profit, it was wonderful seeing volunteers offering services, such as master gardener, landscaper, painters, and pet therapist. The staff often felt we had angels looking out for us; if we were getting low on certain supplies, donations would just arrive!

Staffing in the early years was challenging, because of fluctuating census, but we had such dedicated nurses who were committed to the mission, we were like family and loved working with the children and their families. 

I served in different roles during my years at Almost Home Kids. I became Clinical Educator and did a lot of training of the staff. I also served as Charge Nurse at the Chicago site for a while. Then when we became affiliated with Lurie Children’s Hospital, I served on a committee. I wrote a care manual that explained the care that we provided for these amazing children, to be used as a guide for future sites. Each role presented new responsibilities for me and played an important part in my growth as a professional nurse.  My career went full circle, starting with my very first nursing job at Children’s Memorial Hospital; and ending with my retirement from Almost Home Kids as an affiliate of Ann & Robert H. Lurie Children’s Hospital of Chicago — formerly Children’s Memorial Hospital. Being on the ground floor while the house was still under construction, being the first employed nurse and then, seeing Almost Home Kids become a reality was a journey I’ll never forget. I met so many wonderful families, cared for so many wonderful children and worked with such incredible staff members. I will have these special memories forever. I would still be working at Almost Home Kids if I hadn’t retired and moved to Florida to be with my children and grandchildren. I am so grateful for all the opportunities that were given me, and by far, my years at Almost Home Kids were the best and impacted my life so much. Children with medical complexities and their families are so special and can teach us so much!

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