Our lives, each of them, are made up of moments… For some families, the moments that they hold onto for a lifetime come when their child is faced with a life limiting illness. A photograph of that infant or that child will hold those precious moments of their life still in time~a moment paired with memories to hold onto for the rest of the family’s life.

Moment by Moment is non-profit 501(c)(3) organization of professional photographers who provide portraits for families of children with life-limiting illnesses. Our goal is to create lasting memories, capturing the role of families, love and courage in living each day moment by moment.

Story Teller
That Kind of Nursing

About

Our daughter Madison was diagnosed with cancer at five months old. The support we received from our community was overwhelming. We went from a two-income family to a one-income family overnight. After our first week at Stanford Children’s Hospital, we came home to find our refrigerator full, our house clean, and our friends eager to help with whatever was needed.

Our family was unique to the hospital staff, not because Madison had two moms, but because of the steady stream of visitors we received. The staff had never witnessed such support for one family before. Every challenge we faced was met with incredible love and generosity. We received gift cards for gas and food. Dinners were organized by friends. Swimming at Polly’s puddle and our trip to Disneyland were very special to us. Our counselor, our hairdresser, and Maddy’s healer all donated their time. Co-workers donated six months of their own sick days, which enabled both of us to be with Madison full-time.

Having a child with cancer can paralyze a family. Because of our community we stayed in motion. Our friends and family carried us through and never let us fall. By helping with our most basic needs, they gave us the chance to focus on what really mattered – every moment with our daughter. Our thanks to everyone who was part of our lives; you made such a difference.

When a child has cancer, it affects the entire family and, sometimes, a whole community. This is just a glimpse into our lives at the time.

Buy one of Madison’s “Dance” bracelets

Available in Leather and

Silver.

Buy one of Madison’s “Dance” t-shirts

We often mean well by saying “call me if you need anything,” but the reality is that it is best to offer something specific you can and will do and then just do it. This is especially true when a family is dealing with a serious illness or a death. There are tangible things you can do to help ease their burden…

• Make a meal that is easy to reheat
• Invite siblings over to your home to play so mom and dad can have some time to themselves
• Run errands
• Pick kids up from school or drive them to their daily activities
• Make sure that the house is stocked with the kids’ favorite cereal or other familiar comfort foods
• Do yard work
• Clean the house
• Mow the lawn
• Do the laundry
• Honor each family member’s grieving experience and expression – recognizing the differences is a true gift.
• Offer to go with the parents to help plan or hold their hand while they make arrangements for the memorial service and/or funeral
• Offer to assist the family in preserving mementos. Let the family set the timetable for this as they need to discover the right timing for themselves
• Send a note or a letter (see Those Difficult Cards & Letters, page 29)
• Remember them during holidays and birthdays, mother’s/father’s days. Notes and letters that continue over time are priceless. Don’t worry about “reminding them of their child” they are already remembering and often grieving for their child during these milestones and will be comforted to know that their child is remembered by others.

Grief is the natural reaction to any loss. There is no “right” way to grieve, but when we feel grief it is important that we, both as children and adults, have the ability to find the strength within us to express our grief in ways that heal us and help us grow into Loving human beings.

We all experience loss throughout the course of our lives. Children moving into a new home experience the loss of friends at the old school and the comforts of a familiar home. Children experience loss when parents divorce or grandma dies. They can feel loss as they move from childhood into adolescence; when it is no longer cool to play with dolls or other “childish” toys or games. When a child is sick, regardless of whether the condition is minor or lifethreatening, parents experience profound loss. Grief is the natural reaction to any loss. There is no “right” way to grieve, but when we feel grief it is important that we, both as children and adults, have the ability to find the strength within us to express our grief in ways that heal us and help us grow into loving human beings. This is where a chaplain can help.

Many people have an outdated view of what a Chaplain is and what a chaplain does. I have seen fear in people’s eyes when I am introduced as the chaplain because they think I am there just to “give last rights.” A chaplain can be anything from a pastor helping a family with their religious rituals, to a friend providing a shoulder during a difficult time. A chaplain is not necessarily religious and we do not promote any particular religion or faith. Our job can be to reconnect you and your family back to a lost faith or help you find a faith that works for you. Mostly a chaplain can help you find hope and strength during your greatest hour of need, helping you come to terms with loss, find and redefine hope and healing.

If you have a loved one who is seriously ill or have spiritual need and would like to know more about chaplaincy services, you can call me at the Central Coast Visiting Nurses Association.

Phone: 831.758.8243.

What do you say when a child, a friend, a loved one dies? Words seem so inadequate – we are often literally speechless. After all what’s the point, we can’t say or do anything to help or can we?

DO listen, listen, listen. Remember every grief needs at least a thousand tellings or more.

DO read an article or go online and get some information about grief to help you better understand what your friend is going through.

DO say the name of the child or person who died out loud – the grieving often find it comforting to hear and say the name of their loved one aloud and know that they are remembered and missed.

DO be patient. Grief has no timeline – respect each person’s journey

DO let the person guide you. For example, “I have such a wonderful memory of (person’s name). Would you like me to share it now or another time?”

DO become informed about your friend’s cultural and/or ethnic beliefs, rituals, customs related to death and bereavement, so that you are better able to provide appropriate support.

DO reminisce and share stories and memories

DO remember that grief is a process. We visit and revisit the thoughts, emotions over an extended period of time. We never get over grief. We are forever changed by the death (or by the loss).

DO stay away from “should’s” —- for example “You should go out more, try to eat more or less, go to church more, read this book, come over for lunch, etc.

DON’T avoid those who are grieving. It is important to them and to you that you express your empathy and sympathy rather than simply doing nothing out of your own distress and discomfort.

DON’T be afraid of silence. The ability to jbe present and quiet with your friend can provide comfort.

DON’T say “I understand” or “I understand how you feel.” This tends to shut the person down. Encourage conversation instead. We understand our own grief journey and by listening we will understand another’s.

DON’T let the fear of saying the wrong thing stop you from supporting your friend.

DON’T say “You shouldn’t feel that way.” We sometimes say this when a person talks about guilt or anger. Remember it is important to listen even though it may not make sense to you.

DON’T say “Put it behind you” or “It’s time to get on with your life.” This is easier said than done. Your friend may wish that they could return to life before the loss, yet it takes time to heal.

DON’T try to fix the pain. It is hard to be with someone in grief and so we have a tendency to want to fix it, take it away, freeze up, or be frightened of their big feelings. You will be offering your friend a huge heart gift by listening without judgment or attempting to fix their pain.

NEVER say “You can always have another child” or “It’s so good that you have other children.” Each child’s life is their own unique lifetime, one worth remembering, honoring and celebrating.

Contributed by Debra Houston, LMFT, Children & Youth Grief Support Program Coordinator, Hospice Caring Project and Loretta J. Ferris, MFT, Family Services Director, Jacob’s Heart Children’s Cancer Association