There was a group of mothers that I met at Children’s Hospital who I don’t even know what countries they were from and they didn’t speak much English. One day, they saw me just crying and having a tough day. They came and scooped me up and said “no, no, don’t do this. You don’t do this, come with us.” We went out for coffee. They couldn’t figure out the American money and I couldn’t understand what they were saying but we all were there because we had a child. It was an amazing connection. No matter what was going on with all the politics and the war and everything this is what it was about. It was just so meaningful to me that they were there. Being a mother was the only thing that mattered.
It’s good to know they’re still OK
It’s good to know that other people have had a child die and they’re still ok. Friends of mine have given my name to other people they know that have had children die and they’ve called me. It’s good to know that I’ve been able to help other people just by having gone through the same thing.
The woman that cuts my hair had a daughter die at six months old from heart disease. We spoke a little bit about her experience and we shared stories back and forth, which was helpful. Somebody to listen. It wasn’t an organized community thing. It just happened to be coincidence that I got my hair cut where she worked.
Fortunately for us, shortly after Jackie was diagnosed the Internet became a powerful tool in everybody’s life. There was a support group specifically for families of children with this specific illness. Their primary focus is not fundraising; it is support for families. You can only support each other a little bit but it really becomes critical. Over the eight years that she was ill, that support group was invaluable to parents.
I joined the Compassionate Friends group for families who have lost one or more children. And that’s been really helpful, just that unspoken bond where you don’t have to say anything and you know that people understand how you feel. That’s been very supportive.
We have joined a support group at Children’s Hospital called Hope. It’s a group of twelve parents meeting biweekly just to talk about the whole process of grief. I’ve only been once but it was very helpful just to hear how other people are coping with their grief.
I think that we drew strength from our friends, the parents that we knew at Perkins’, the Infant Toddler program met on a weekly basis, the volunteers where we left the kids with the teachers, and all the parents went upstairs for coffee hour if you will. The parents there were a great support to us. There were a number of guiding lights at the hospital that we dealt with, including our pediatrician who was in our community that really helped us to navigate that journey.