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Question: 

After giving birth to our quadruplets at 26 weeks, our son died at 19 days old. We have a very supportive family, but I continue to struggle.  It is getting worse now that we are going out more with the babies and are getting the comments – Wow, you have triplets!! Sometimes I give more details and sometimes I just say yes…but I feel guilty that I don’t let them know about Devon. It’s nice to read that no matter what I say…it’s the right way. 

Suggestion:  

I am so sorry to hear of your loss of Devon.  That has to be heart breaking and I have no doubt you feel as if you are abandoning him when you agree you have triplets.  In fact, nothing could be further from the truth.  Your heart knows the truth and we do not have to explain everything to strangers.  It may not feel appropriate at the time.  On the other hand, you may feel that you would like to acknowledge Devon’s birth at another time.  If you feel that way and tell a little of your story, that is right too.  Sometimes you want to explain and sometimes you don’t.  You call the shots.  When you choose not to say any thing, you aren’t denying him, you are acknowledging him within you and that may be enough for that particular day.  You are his Mom now and forever.  May your path be gentle and your challenges manageable.

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Question:    Hi I was so happy to come across your website and [am] hoping you might be able to help me. Yesterday my best friend have birth to her daughter, who sadly died after a few hours. I’m going to visit her this evening and I’m stuck in gift ideas. I would like to bring something for the baby, something that acknowledges the fact that she lived even if it was a short few hours. I also want to bring my friend a gift but don’t want to bring flowers as they too will die. Would you have any suggestions please?

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Suggestions:  Hi Andrea,  I am so sorry to hear this news and how thoughtful that you want to focus on the baby as well as Mom.  

A couple of suggestions would be a piece of engraved jewellery with baby’s name and date of birth on.  There are beautiful and subtle pieces available so that Mom does not have to “explain” about the piece to strangers or friends, should she not wish to.  A bracelet, charm or necklace could be perfect.  Just Google Memorial jewellery and a bunch of them come up.

For the parents, make a donation to the hospital, a school library or other child-focused facility in the family’s name.  If you think that would work.

Obviously these will not be ready for you to take tonight, but you can make arrangements for them for another time.  Tonight taking love, support, comfort and tears or how about a baby blanket to wrap around the little one, will help.

Your friend is lucky to have such support and understanding from you.  The next few weeks and months will be hard for them.  Try not to forget to ask about the father too. Rather than “How are you doing?” think about “How is today going?”  Some days are better than others and sometimes today is all we can try to get through. Don’t be afraid to mention the baby in conversation or to say her name.  All of this will be welcome, not objectionable, to the parents.  Their child lived for real and now in spirit.  It is so great when someone else remembers.

Hugs and best wishes,

Lynda

Question:  

I lost one of my twins in the womb.  My daughter is now 16 months old. I’ve been thinking what would be an appropriate age to tell her about her twin?

Suggestions:  

Hello,  I am so sorry to hear of the loss of your baby.  Nothing about losing a much-wanted child is easy.  I suggest to parents that they talk about the sibling as early as possible.  It is easier to begin with a young child then to try and break the news to a say, 14-year old who may be shocked to hear the information for the first time.  Teenagers have growing up issues to deal with and learning the truth about their origins later in life can be mind-boggling.  With a young child, the words are less important than with an older child and the parent gets chances to work through the way to deliver the news. When the truth is shared early on, the lost sibling is part of the fabric of who the survivor is vs them facing a completely different scenario at an older age and realizing that they are not who they thought they were.  Even starting now is not to soon.  “There should have been two of you.  Your Dad and I miss your little brother/sister very much and wish whole-heartedly s/he could be here, with us.” And such.  Short sentences, a few words as you also feel the ground for sharing.  It will no doubt be difficult for you as well.  

When your daughter begins to speak, she will eventually ask you questions.  Use age-appropriate language when answering, be honest, try not to avoid the topic – it may come up when you don’t feel like talking about the subject, and expect the same questions over and over.  This is how small children incorporate the idea of death.  It is hard for them to understand what it means to die.  Repetition helps.  “S/he was too sick to stay with us and be a family on earth”  is a gentle way to help her understand until she is older and better equipped for as much detail as you feel you can share.  Be prepared to cry sometimes and that is OK.  You can tell her you are glad to have her but not to have her brother/sister makes you feel sad.  You are helping her learn that life is not always fair, there are loving people around her nevertheless and she is not to blame because he/she died.  She may ask you at some point if the loss was her fault.  It is not her fault, nor yours or her Dad’s.  It was something sad that happened and you would change it if you could, but you can’t.

I hope these are some helpful ideas.  Please accept my sincere condolences on your loss. Lynda

Grieving…..

“I think the hardest part of loving someone isn’t having to say good-bye, but rather learning to live without them.  Always trying to fill the void, the emptiness that is left inside your heart when they go.”*

*This is from the Internet and the Author is unknown.  If you are the Author of this “right on the mark” statement, please let me know and I will add your name.  Thank you.

 

A past episode of The Agenda involved an interview by Steve Paikin with Rochelle Martin (as part of a panel regarding end of life needs).  As you are no doubt aware, there is an ongoing debate regarding end of life care and support for those who might appreciate some medical assistance in keeping comfortable and/or ending their lives.  This particular interview wasn’t about assisted death, but covered an interesting aspect of the changing landscape when it comes to death and dying.  Martin is an R.N. and has worked in the palliative care area for a number of years.  Her focus is on Funeral Alternatives.  She has been called a “Death Midwife” and “Death Doula”, but does not use either term to describe herself.  She prefers “Death Educator.”  Martin indicated that, unfortunately, many people not only do not want to talk about death, they also do not wish, or can’t, make plans for their own death and funeral needs.  It is commonly thought “this too shall pass,”  “don’t rock the boat” or “I could jinx myself.”  Not having plans or wishes in place beforehand can present quite a challenge for the family and loved ones left behind.  But that is another topic.

As regards funeral alternatives, Martin indicated that in Ontario, as well as some other Canadian provinces, the family can bring home the body and care for it before final burial needs are decided upon.  The body is not required to go to a funeral home for care.  The idea of funeral homes is relatively new and up to forty or fifty years ago it was the norm to have the dead in the house.   Wakes were held at home, friends, family and visitors came and Grandpa would be dressed by his family in his best and laid out in the front room.  He wasn’t embalmed (embalming is not a step we are obliged to take plus it is toxic to the environment) and burial was usually within 2-3 days.  Friends and neighbours would bring food, solace, stories and conversation. If this is the type of format that appeals to us, it is possible to do so today.  According to Martin, we can also bury the body in our yard, assuming it is large enough, not near any neighbours nor water systems.  Martin mentioned that in Hamilton, Ontario burial in one’s yard is permitted.  However, the grave must be mentioned in the deed to the property from that point forward.  Travelling through some of the Southern US states, I have seen several homes with one or two tombstones in people’s front yards.  There was something comfortable, for me, in seeing loved ones nearby.  According to Martin, the only thing Canadian’s are not permitted to do is cremate at home.  What we can do is to arrange transportation of the body to an appropriate facility for cremation after the at home wake, then to the burial.

Laying some one out at home has advantages. One of the most meaningful advantages is that death becomes a part of life right there in the home.  Currently we have set death apart from our lives and delegated the care of the body to others.  We are no longer able to take advantage of witnessing for ourselves or being a part of what goes on after death.  There can be a lot of comfort in washing and dressing a loved one’s body for their final journey.  When the visitation is in the home, children have the advantage of learning from an early age that people die, that adults cry and become emotional and the community assists and supports with the grieving.  The children can ask any questions they might need as they need.  In addition children often add something meaningful to emotional situations such as cutting through to core of the issues, helping (making?) us mourn and saying what many adults want to say and yet are fearful to.  The children in the room are at the beginning of their lives while sharing an end to life.  I rather like that thought.  

A friend recently died and was waked at home in a hand-made coffin by one of his friends.  My friend and his 3-year old grandson were particularly close and J. made videos of himself reading to his grandson as a keepsake.  This youngster brought us all to tears as we had a healing circle for J. and the little fellow stood in the centre of the circle as we were holding hands and he put his hand on his chest and declared loudly: “Grampa now lives in my heart!”  That is exactly where Grampa now lives.  His gift to us was an opportunity to cry as we mourned the passing of a special man.  And youngsters understand, sometimes better (differently?) than the adults who love them, what is really going on.  They can cut through the barriers and say in their own unencumbered way what we really may need to hear.

I read of one family who waked at home, placing their loved one in a cardboard, white box (as an environmentally friendly alternative) and had the children present paint messages on the box to the deceased.  Life and death lovingly entwined.

Other advantages of having a wake at home include:  financial (it costs less to have a wake at home), emotional (can take your time and visit your loved one when it suits you, i.e. in the middle of the night if need be), offers some privacy to grieve, offers each family member a way to meet their needs and absorb the loss in their own way and time frame, brings together community for support, offers opportunity for sharing with others, and the caring and washing of the body ourselves is a final expression of love.   

If you would like to read more about Funeral Alternatives and/or learn about Rochelle Martin’s work, you can visit www.funeralalternatives.wordpress.com

Lynda speaks to reducing multiples on Canada’s CTV National News, 8th May, 2017: http://www.ctvnews.ca/health/study-links-fetal-reduction-in-multifetal-pregnancies-better-birth-outcomes-1.3403262

TTTS a disease of the placenta and as soon as you know you are pregnant with multiples, you need to try and find out if the babies (or any of the babies) have transfusion TTTS.  It only occurs with monozygotic (identical) babies, and can happen within a higher order set (triplets, quads, quints) as well if there are monozygotic babies.  In simple terms, it is a situation where one of the babies receives most of the available maternal nutrition and the other one receives almost none becasue their veins and arteries have, due to the circumstances of their formation, intertwined.  Nutrition goes too quickly through one baby, the doner, and the other baby, the recipient, receives too much nutrition and is unable to adequately get rid of the excess about of food and liquid, so it pools within his or her body.  Both babies suffer organ stress for different reasons, one because there is not enough nutrition and the other because there is too much.  TTTS becomes an issue for both babies by about week 20 of gestation.  Some pregnancies can be helped by lasering some of the veins and arteries the babies share thereby giving each baby a better chance at growth and development.  It can be expected that if a pregnancy has TTTS babies they will be born early, i.e. before 38 weeks.  The doner will be pale and wrinkled at birth and the recipient will be larger and redder.  TTTS has a spectrum of severity from mild to severe and the babies, one or both, can be negatively affected.  It is important to diagnose as soon as possible after you know you are pregnant with multiples.

For more detailed information on TTTS, you can go to page http://jumelle.ca/prenatal-education/twin-to-twin-transfusion-syndrome/ on my Web Site.  Many multiple-birth pregnancy books address TTTS and Googling TTTS will also provide many sites to get further information.