Posted on 01/29/18
I lay in Intensive Care Unit (ICU) pondering the latest devastating news and yet another autoimmune diagnosis. I have been mostly home bound now for 14 years. My son’s innocence was lost early on as he watched me struggling to breathe or to take a step over the years. There is so much uncertainty about how I will raise and coach my son to college and into adulthood and my health and further disabilities in coming years. I am blessed with many organizations and resources in my community to help me when times get rough. Chai4ever specifically has provided me with much needed hope and help as I fight my illnesses and maintain some semblance of quality of life. My debilitating illnesses have been particularly difficult and frightening for my son and for other children trying to deal with the emotions and disruption in their lives.
Families suffer often silently and behind closed doors when a parent is diagnosed with a debilitating or terminal illness. Beyond the trauma and constant anxiety and chaos that the illness produces, nothing ever seems normal again as life revolves around infusions, nurses, hospitalizations, endless doctor appointments, the loss of income, and the inability to be the caretaker of our own children.
Chai4ever has provided our family with a variety of programs and services. These services included delicious prepared dinners delivered to my home. Chai4ever coordinated with our Rebbetzin to arrange a meal train, which provided both fresh-cooked dinner daily. At my request, they also provided daily visitors to my home as I struggled to recuperate from yet another treatment or hospitalization. The organization has provided me transportation to and from medical appointments and immunotherapy. My transportation needs have not always been medical in nature but also needs to help my family continue to run despite my health. For example, my son will be graduating from high school this year and I really wanted to be involved in open houses, financial aid and college night and similar occasions. Chai4ever has been there to get me to these events because I can no longer drive. After my chemotherapy, Chai4ever jumped in to provide monetary assistance for housekeeping.
Summers are always difficult because of the high cost for camp and my son now 16 usually spends the summer lonely and bored. This year, my son joined a group of boys and their counselors for Camp4ever!on an epic road trip and summer journey camp traveling from Lakewood through Virginia, North Carolina, South Carolina, Georgia, Florida, and Tennessee. This is a fun super exciting travelling experience in the company of other kids who also have parents going through debilitating and life threatening illness. The staff is specially trained to provide support and security and counselors are provided 1:1 to each camper.
Chai4ever has also had a variety of recreational outings and getaways including concerts, carnivals and trips to activity centers to give my son things to do and give me a reprieve from the difficulties. One Shabbat, my son was invited to stay with another Chai4ever family and another time invited to dinner with another family. Other resources that have been so helpful to us was the initial intake and case management helping us identify resources elsewhere in the community.
Chai4ever’s mission is to provide emotional and practical support for families dealing with the acute or chronic illness of a parent. Chai4ever understands parents like me who become incapacitated due to illness and how it can throw the entire family into crisis. Chai4ever seeks to mitigate the repercussions of parental illness by surrounding families with the care and support they need to maintain a stable and functional home life and lessen the impact of the parental illness for the whole family including the patient, the spouse, and the children by providing practical and emotional supports for the entire family.
Your support to Chai4ever enables Chai4ever to fulfill its mission to help these families in crisis, and is much needed and greatly appreciated. Our donors even have the opportunity to specify what their gift will sponsor. You can choose to send holiday gifts to the children of a sick parent, sponsor a week of housekeeping for a family in need, or even send a child to summer camp for a much-needed reprieve from the heaviness of life with an ill parent. Make a one-time or recurring donation to Chai4Ever, and give the gift of stability and normalcy to children and families in need today.
Julie and her husband Edward Roberts live in Cedarhurst. Their son Colin is in the 12th grade.
