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Grief Support

Deb Lee Gould

As we continue to spread FOD awareness, knowledge and support via our extensive website and Email List, we have also expanded our Group’s Mission to include face-to-face grief support ~ as a community outreach, Deb offers free of charge local [East Lansing, MI area] Grief Support for those touched by an infant/child/adult child’s death from any cause ~ early in your grief or many years down the road. Impending loss/loss of a spouse, sibling, parent and other loved ones are also supported for face-to-face local consults. If you are unable to come for a face-to-face session, I also provide Online Consults via zoom video ~ for Grief Support Only. 

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Fortunately, with expanded newborn screening taking hold in our country and several other countries, there will be fewer deaths associated with undiagnosed FODs ~ however, there are still many others out in the world living with a death of a child or other loved one, from another cause that might benefit from extra one-on-one support.

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There is no charge for consulting with Deb via email, phone/zoom video, or face-to-face consultations (non-denominational) with bereaved parents, or other adult family members, living with the death of a child/children or loved one of any age and from any cause, not just our disorders.

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Donations to the FOD Group are definitely welcomed, but are not required!

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Note from Deb: If anyone has an individual or family loss and grief concern, and would like another perspective via phone/zoom video, or in person please contact me ~ please also complete the online Secure Grief Intake Form on my site on the Forms page, so I have a better idea of your life and loss situation.

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I have experienced a child’s sudden death, the loss of my father at age 3, several miscarriages, have raised an MCAD young adult [as well as his MCAD carrier brother], have a Master’s degree in Education/Counseling [1993], am an ordained non-denominational spiritual counselor, and have I have offered grief support to bereaved parents and others experiencing loss since 1991.

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Our correspondence or work together, however, would not take the place of face-to-face therapy with another grief or medical professional if that’s something you choose to do and/or I feel you may benefit from ~ depending on your situation, sometimes further assessment or treatment may be needed.

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If you email me and do not get a response, please contact me by phone at 517.381.1940 or use my backup email and/or put my addresses on your safe list – sometimes my address goes to your spam folder. I do not want to miss your request for support!

 

Grief Consult Office [Map]:
Deb Lee Gould, MEd
3899 Okemos Rd A1
Okemos, MI 48864
Phone 517.381.1940 est
Fax 866.290.5206

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deb@bereavedparent.com | www.bereavedparent.org
Mail: PO Box 54  Okemos, MI 48805  

Support Resources

Related Metabolic Support Resources

 

[Please Note: Being listed on our site is not an endorsement of that site or organization.]

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Information Sites for Metabolic Disorders

 

Bereavement Resources

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Educational Articles & Discussions & Creating Awareness Projects

Coping & Healing

While families with FODs have their share of happy times and good memories, many have experienced pain, loss and grief as the result of tragic illness and/or death.

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We hope that through our section on Coping & Healing you will find information, encouragement, and support that will lead to renewed hope, meaning, joy and light in your life. Remember…You are NOT alone! We Are All in This Together!

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••• Those looking for extra support ~ I have a local ‘Grief Support for Bereaved Parents & Families’ practice in the Lansing, MI area (no fees are charged) ~ if you are interested in one-on-one grief support for the death of a child of any age, from any cause ~ early on your grief or many years down the road ~ please email me at deb@bereavedparent.com or call 517.381.1940. Locally, I also support the death of a spouse/partner, parent, sibling or other loved ones. Online Consults are for only the Death of a Child.

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More info is on www.bereavedparent.com.•••

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Coping & Healing Stories

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‘Finding the Light in the Darkness’

I began thinking about this article awhile ago when I heard about a professional who was thinking about not telling an FOD family about our group. I heard that she thought the newsletter was “too depressing” and that seeing all the children that had died and honored on the ‘Love Messages’ page might be too hard for the family.

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I would take a guess and say that professional had never had a child die! It’s a matter of perception ~ she CHOSE to see the darkness ~ and I CHOOSE to see the LIGHT! Every one of those children may have died physically, but their lights are still shining for their families! And it was OUR CHOICE when my husband and I started this support group to honor ALL of those children for what they have given (and still are in another dimension) to their families ~ and I see NO DARKNESS in that!

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Throughout my entire life I have tried to see the ‘light’ around me no matter what ‘darkness’ has been presented to me. That was never so evident, and most challenging, than when we experienced the sudden death of our 21-month-old daughter, Kristen, from undiagnosed MCAD 13 years ago. I can attest that it hasn’t been an easy road, but one filled with many ‘bumps’ and tears and life struggles and MORE tears.

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Anyone who has had a child or children die can probably relate to that darkness ~ that ripping apart of oneself, one’s family, and one’s life ~ emotionally, cognitively, spiritually, socially ~ all in a split second…the second you realize that your child has REALLY died. As excruciatingly painful as that is, however, we DO have a choice about how we will work through the chaos of that darkness.

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We can either stay in it and ‘die’ ourselves or allow ourselves to embrace the darkness and work through the grieving process in order to get through to the other side ~ to not only see the light but to enhance that light the rest of our lives! For me, it’s been a union of Kristen’s light and love with my own unique light ~ which has ‘birthed’ this Support Group and changing my career from teaching to Grief Consulting.

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And for those who know me well, they can tell you that finding that union has been extremely painful and confusing, yet at the same time releasing and exhilarating. It has been a learning over and over and over again that pain and joy CAN coexist and it is the experiencing and expressing of both those human emotions and everything in-between that promotes an active grief process.

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The grief process is not just a one-time event or ‘inside head job’ ~ it is a lifelong journey that requires A LOT of Faith, Hope and Love—and a lot of ENDURANCE and PATIENCE! Many will say I’m still working on the PATIENCE part! Anyway, in order to make MY process ACTIVE instead of passive, I found that it was, and continues to be, necessary to work internally as well as externally ~ individually, with family and friends, and within my own community and beyond.

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My daughter may not have been on this earth very long, but HER LIGHT shines far beyond myself and my family. This newsletter and Support Group is a reflection of what she meant to all of us ~ Love, Light and a great deal of JOY! Yet, getting to that point of finding meaning in Kristen’s death AND life and a renewed purpose for my own life did not happen overnight. Working through her death occurred over many years and it intertwined with ‘recycling’ earlier losses and personal issues. As quickly as many would like us to ‘get over it’ ~ IT DOESN’T WORK THAT WAY!

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Over the years I have read many books on grief, but there are two grief professionals who have helped me understand what the Grief Process entails (for all loss issues, not just from death). The writings of Dr. Therese Rando (Parental Loss of a Child; Treatment of Complicated Mourning) and Dr. William Worden (Grief Counseling and Grief Therapy; Children and Grief – When a Parent Dies) helped me grasp the many interlocking aspects of a process I really didn’t want to have to go through but knew I HAD to in order to work toward a new wholeness and a ‘healing of my fractured heart.’

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Understanding this multidimensional process was one thing ~ ANIMATING it was another story! I believe there are ‘six eyes of grief‘ that impact how one sees their own process, as well as how one can be transformed or ‘healed’ over time by being aware of and open to those factors that can be stirred within you and then animated to move you toward a different kind ‘healing.’ These ‘eyes’

[Individuality · Intrapsychic ·Interpersonal · Intergenerational · Interactional · Integration] are discussed in my article titled Deb’s Personal Perspective on Parental Grief and ‘Healing’ [print borderless 8.5×11] and played a huge part in how I perceived grief for myself. As much as I respect all the grief experts and their own writings, I have come to learn and own what my own process ‘looks’ like through my own ‘eyes.’

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Those of you who are in the middle of this process right now KNOW what I am talking about. Some days it felt like I was spiraling and on a nonstop treadmill at the same time! When was the pain going to STOP? I can write forever on how these writings have impacted my own grief process (maybe in a future issue) or describe the “The Six ‘R’ Processes of Mourning” (Rando) (1) or the “The Four Tasks of Mourning” (Worden) (2), but that is not the purpose of THIS article. My purpose is to say that WE ALL HAVE CHOICES and DECISIONS TO MAKE and that I hope others won’t try to make them for us out of their own fears or issues! The family I spoke about at the beginning of this article almost had that done for them!

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Part of our Mission as a Family Support Group is to do just that ~ SUPPORT CHILDREN and PARENTS and FAMILIES ~ NOT try to protect them from hearing or reading about similar stories of pain. It is through identifying with those stories that the ‘healing’ often begins. It is only when you go through the pain that you can feel the joy again ~ as strange as it sounds, the pain is like a healing balm for our hearts and lives, so that over time and with much grief work we can reach some sense of wholeness once again.

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So my plea is this ~ Family members, Friends, and Professionals ~ please ENCOURAGE families to work through their grief in their OWN WAY and OWN TIME!

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And one IMPORTANT way to do that is to inform them that ~ THEY ARE NOT ALONE and that WE ARE HERE ~ FOR THEM!

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Help our FOD children and parents to EMBRACE their loss and follow it through to a new meaning and purpose in life ~ EACH AND EVERY ONE OF OUR CHILDREN’S LIGHTS IS LEADING THE WAY!

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Deb Lee Gould, Director
October 6, 1998 Kristen’s 15th Birthday 
(January 1999 FOD Communication Network Newsletter)

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References

  1. Dr. Therese A. Rando, Clinical Psychologist and Director of the Institute for the Study and Treatment of Loss. Author of a variety of books on grief including Treatment of Complicated Mourning (Research Press, 1993), Parental Loss of a Child (Research Press, 1986), and How to Go on Living When Someone You Love Dies (Lexington Books, 1988). ‘The Six ‘R’ Processes of Mourning’ is explained in detail in Treatment of Complicated Mourning. Research Press, 1993.

  2. Dr. J. William Worden, Clinical Psychologist and Co-Director of the Harvard Child Bereavement Study. Author of a variety of books on grief such as Grief Counseling and Grief Therapy (Springer Publishing, 2nd Edition, 1991) and Children and Grief: When a Parent Dies (The Guilford Press, 1996). ‘The Four Tasks of Mourning’ is “used by permission”: Grief Counseling and Grief Therapy, Dr. J. William Worden. Springer Publishing Company, Inc., New York 10012, 2nd Edition, Copyright ©1991, pp 10-18.

Love Messages

This special page is our way of honoring the memory of all our children who died before their FOD diagnosis was made. We encourage parents and family members to share their most intimate feelings about their child, grandchild, sister, brother, niece or nephew.

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Despite the pain and struggles of losing our children, these poems, stories and artwork are beautiful expressions of our love for these children and a way to show that their spirits will always be in our hearts and minds.

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We hope these ‘Hearts of Light’ celebrations of life will bring a smile to your own spirit when you most need one…

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Feel free to submit your ‘Love Messages’ in honor of those who are living with an FOD and/or in memory of those who have died from being UNdiagnosed with their FOD or from complications during a metabolic crisis.

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In Memory of…

 

In Honor of…

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