Grief / Loss

There are many different kinds of grief and loss. Some parents may have experienced the sadness and pain of having a disabled child, or a child with learning differences. Part of this grief is the loss of a dream. When one gives birth, you always hope and pray for a healthy child and 98 to 99% of the children that are born in America are healthy. However, if you happen to be the 1% that is not, you have a dream to grieve for and adjustments in your expectations . This is not necessarily a bad thing, because a loving mother will always love their child, no matter what the challenges. But it is still a loss and one that should not be brushed aside. Some of the challenges or differences do not always immediately appear at birth. For example, many learning differences are not diagnosed until a child begins school. And even then, some of the less common learning disabilities are not diagnosed until late elementary or middle school.

A dream of the child you thought you would have; the type of life you would lead with your child is one type of loss. Then there is the enormous, profound loss of a child, that is burying a child. Nothing in the world can match that pain as a mother. It does not matter if the child died one week, one year, or 10 years ago, the loss is always present, even if it's buried way back in your memory or at the back of your mind. The crib and the casket are not suppose to follow one another so quickly. This is an abnormal sequence and so unfair. The parent is suppose to die first . . . not the child! How do you cope with that type of loss? How do you handle that amount of grief? This too, will vary from person to person, but the first step is acknowledging the depth of the loss. Don't press on and “be strong” without grieving, or the sadness will return in another form. It will catch up with you one way or another. Hopefully, you have a solid spiritual belief system that you can find solace in, especially for those unanswerable questions.

There is another special kind of loss . . . the loss of a twin child. On the one hand, you are delighted as a mother to have twins, but when one dies, there is a mixture of both sadness and guilt. You still have one live or healthy child, so you don't want to be sad for that child. And yet, on the other hand, there is still grief work to do. It is best not to stuff the sad feelings one experiences when a child dies, even if it is a twin.  Because if you don't deal with those grief feelings, they will come back and continue to plague you. Unresolved grief may appear as an illness. That headache that won't go away. Those series of sore throats and colds--those symptoms may be from a broken heart.

I have experienced the losses and levels of grief described here, and would like to share some of the things this sorrow taught me.

Some suggestions for handling grief and loss:

1. Talk about the experience. Tell your story to supportive friends and family.

2. If you are from a family that does not discuss “feelings”, then find others who will allow you to vent and cry.

3. If you are “too busy” to face the loss, then realize your busyness may be your way of coping. And yet you still need to do your grief work.

4. Whatever provides you peace and comfort is okay. If you want to visit the cemetery, then do it. If it makes you feel better to remember their birthday in some specific way, then do that. Only you can decide what feels right for you.

5. Accept others offers for help. For example, to cook for you, baby sit your other child, etc.

6. Journaling is a great coping mechanism also. Writing down how you feel, whether you are having an “up” or “down” day is very helpful. Journaling gets out a lot of thoughts and feelings that one may find difficult to express verbally.

7. Remember grief is a process. You may be in the Angry Phase, or the Sad Phase (Kubler-Ross describes these phases), or you may go back and forth between many different feelings and phases. This is normal.

8. No two people grieve exactly the same.

9. Grieving and mourning have many different cultural expressions.  Some cultures and ethnic groups are much more expressive, both verbally and physically, than many others.

10. Couples/ husbands and wives grieve differently too. This can lead to more isolation and sadness if not recognized. Professional help may be beneficial for the couple as they handle their loss.

11. With families, the death of a sibling is a loss to the remaining child. Facilitate help for your child through community resources where your child and get together with other children who have experienced a loss.

12. Creating a scrapbook or memory book with photos of your deceased is a special way, not just to remember them, but to serve as an avenue to work through the grief.

13. Elizabeth Kubler-Ross's stages of dying (grief) are:
denial, anger, bargaining, depression, and acceptance.

14. Many friends do not know what to say to the person who has experienced a loss. This is sad but true.

15. Friends and families' use of cliches, such as “It's for the best” or ”at least your child is not suffering now” can cause more hurt feelings than help.

16. Don't be surprised if you experience a wave of sadness, just when you thought you "had gotten over it." These waves of sadness are normal.  Anything can trigger this wave and rush of sad feelings, such as another's pregnancy, a child that looks like your deceased, a song, or even a smell.

17. Life is precious. Do not take anyone for granted. Hug your children often. Be thankful for the wonderful, unique way each is created.

Patricia Burton, RN, MSN
Founder
Moving Mountains for Kids

References

Johnson, B. (1997). Adaptation and Growth: Psychiatric-Mental Health Nursing.  (Fourth Edition). Philadelphia: Lippincott.

Kubler-Ross, Elizabeth. (1969). On Death and Dying. New York: Macmillan Publishing Co.

For More Information

MMFK is available for fee-based private consultation, lectures, and speaking engagements.  For more information and fee schedule, please contact us.

"Life is a succession of lessons which must be lived to be understood."

Helen Keller

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared the unique experience to understand it, to imagine how it would feel.  It's like this. . .

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Colosseum.  Michelangelo's David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It is all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The flight attendant comes and says, "Welcome to Holland."

"Holland?!" you say.  "What do you mean, Holland?  I signed up for Italy.  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guidebooks.  You must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's a different place.  It's slower paced than Italy, less flashy than Italy.  But after you've been there for a while you catch your breath, look around, and begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they are all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I planned."

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.