I realized pretty early on in our journey as a special needs family that this world just wasn’t designed for families like us. I remember taking both of my children into a local Starbucks, as the stress of the day was weighing heavy on my shoulders and mommie just really needed a latte. I remember holding my sick little baby in his carrier in the crook of my arm, attached to several IV and feeding pumps along with his monitors slung over my shoulder. My little girl, who was no more than two slowly toddled behind. I remember standing in the line as all of Gavin’s lines were occluding, his pumps were beeping and the monitor was screeching forcing all eyes onto this crazy mother who was just trying to get some coffee.
It was at that moment that I felt so alone. If only these people understood what my life was like — if only they knew the hard work it took just to get out of the house with all this equipment, not to mention my two children. Over the course of my child’s life and as his condition worsened and his equipment list grew, it was easier and easer to slip into a place of isolation.
Isolation is deadly.
Special needs families are so often left alone in this crazy world to fend for themselves. The really frustrating part is that programs that offer support to families dealing with chronic illness or disability tend to be very sparse. The truth is, resources are not available because the families who could possible start these programs are so overwhelmed by the daily stresses of raising a special needs child there simply is no energy left.
After our little boy’s death, one of our goals has been to make sure every family in our local hospital who needs support has a place to get it. This was the motivation behind Chronically Cool Families — a parent to parent support group for families dealing with chronic illness or disability. My husband and I along with support from the social work department at the Alfred I duPont Hospital for Children have made this dream a reality.
Doing this life together is so important. When we are weak we can give each other the support needed to keep going. This life can be a very lonely life — not to mention exhausting, emotional and sometimes tragic. With the support of other families, community can be created and joy and hope can once again be found.
If you are interested in starting a Chronically Cool Families support group in your area feel free to contact me for more information on how to make this group a reality for your community.
Let’s do life together!
// Karen Owens