After our son died, they recommended we give him a bath. Because he was so sick, I was never able to nurture him. When you have a child that’s such a natural instinct. So they said to just give him a little sponge bath. We did his footprint, and we took a lock of his hair. I think that’s something that should be suggested to every parent. In the moment you might not think of that but afterwards to have that is so important.
Mother
The clinicians
The continued contact with the doctors and the nurses, and the PACT team, and the genetics team, everybody there and your department (psychiatry), they were involved making sure that we were coping with everything okay. To be invited back to attend services and seminars for bereaved parents was helpful. We feel that Boston is our home, one of our homes. We feel Boston has a very special feel for us and I think that just knowing that we have those continuing channels of support because the staff at Boston Children’s Hospital were all part of Paulina’s extended family.
Mother
The Center for Families
The resources here at Children’s, of course. They have the bereavement workshop and the memorial service now. That’s very nice. The Center for Families has been an excellent support. They’ve been very helpful to us. I just love them.
Mother
The Coping Clinic
We had, helping us all the way through this, a phenomenal grief counselor at Children’s Hospital in the Coping Clinic, who helped talk to us about how to talk to our four year old daughter.
Mother
The most beautiful side of human nature
The support and love and kindness that was shown to us in the most difficult time of our lives. Absolutely the most beautiful side of human nature came through.
Mother
I would take these long walks along this particular stretch, which for us had meaning about this one tree and our son. For me, it was really great to walk by this tree and to do this stretch in the morning. I would do that for myself and just say “this is time you can think about whatever you want to think about you don’t have to worry about anything else or anyone else and you can just take time for yourself.” Those walks I remember. They were just for me so that was important.
Mother
Yoga and Tai Chi
Yoga and the Tai Chi are helping me regain my balance, grounding and focus.
Mother
I had to learn to sit with the pain
Finally a friend said “Why don’t you go do some yoga?” He started a yoga studio. He said “Get out of your head and get into your body.” I found this to be the most helpful thing for me out of anything that I tried. What I didn’t realize, and I found this out in the past year or two, is that people who are grieving have similar kinds of aches and pains. Someone told me a year ago that it’s called “frozen shoulder”, its grief shoulder. I said I’ve read all the grief books for parents who are grieving children and no one mentions physical pain. The yoga was a huge thing for me. I would go to yoga and I would do these stretches. Yoga is much more than physical exercise like running and working out. You are working with all sorts of things. If you do yoga, you will understand. If you don’t do yoga you can’t really understand until you start to do it that you are learning to sit with yourself and be in the present and you are struggling to get in these postures. You are working with your own limitations.
In yoga, you are not supposed to be competitive and you’re not supposed to push yourself too much, but you’re supposed to work with this edge of comfort and discomfort. You may get in to a particular yoga stretch and you might feel uncomfortable and you’re supposed to breathe through it and work with it.
As I would be in these yoga poses in the first year of doing yoga, sometimes I would want to cry and the yoga teacher would say that these poses can bring up emotions and stuff. And I would think of my daughter’s physical discomfort because I would be in physical discomfort in this pose. I would think about her and I feel so sad that she went through this. I would try to breathe through it and just sit with it and work through it and it would also bring up a lot of emotions. I had to learn to sit with the pain.
Mother
You find that you have no energy when the grieving process is so exhausting so I’m trying to fill the well, if that makes sense. My reserves are empty, so I’m kind of trying to recharge my batteries. That’s what I’m finding is helpful in my journey in recovery.
Mother
The challenge
I am going through a process now trying to figure out what I want to do and what I want to focus on more. I’m fortunate that I have music to fill some of that time, but it’s definitely a challenge.
Mother
Music
Music is something else that can also be very helpful, to find music that’s encouraging and uplifting.
Mother
“Somewhere Between Heaven and Earth”
Cindy Bullens is a woman who put out a CD for grief called “Somewhere Between Heaven and Earth” and she has performed all over the country and has helped grieving parents. We actually had her perform at our fundraiser. Her music puts to words what we feel. When somebody introduced me to this CD two years after my daughter died, I played it over and over. She has a web site. Her daughter died at eleven years old from cancer. Each song addresses what it’s like to live with grief and find strength and hope. She has songs like “I’ve got to believe in something.” Her songs talk about how nothing can take that love away and just navigating through grief. It’s just very hopeful music of survival of grief, but validates the deep pain and it was one of the most instrumental things that helped in my grief was this music…
Mother
Nobody knows what to say and whether to bring up your child, or not. My husband and I are both open people and we’ve had a lot of people say to us “It really helps that you bring him up because we don’t want to. We don’t know if you want to talk about it or don’t want to talk about it…” I think open communication helps.
Mother
Seeing the right counselor together
My husband and I have opted to go to counseling together just because we had so much turmoil on top of losing Paulina, and thank God we’ve got the most amazing relationship you could imagine. But we just want to make sure that that stays intact. And so we’re seeing a counselor who specializes in chronic illness, not that we’re chronically ill, thank goodness, but who understands what it’s like to be in hospital long term, living day to day by numbers. So that’s been extremely useful.
Mother