Showing posts with label Education. Show all posts
Showing posts with label Education. Show all posts

Friday, March 16, 2012

Advice




I saw this article on Grief Digest Magazine (online) and wanted to share it.  It's a great resource for articles and information from the bereavement community.  You can click on the link to take you directly to the article or read it below.


ADVICE
February 23, 2012

By Andrea Gambill
Advice is like breath; everyone has some, but sometimes it isn’t pleasant!
…and, it’s pretty much worth what you pay for it—most of the time.
Probably nobody gets as much unsolicited advice as the bereaved. It comes in like an avalanche—especially in the early days of grief. What always amazes me is how firm-with-confidence it is when it comes from those who have never had a similar experience. It is almost always liberally spiced with “you should…,” or “you shouldn’t…”; “you need to…,” or “you must never….” Or even, “I bet you wish…”  Then there’s the ubiquitous, “If I were you…” And the virtually unforgivable, “Why didn’t you…?” Unwelcome advice is like sandpaper on the soul. It hurts, and it does no good at all.
It’s almost always well intended, but it’s usually born out of frustration on the part of the donor. Our wannabe-comforters are completely baffled by us, and they are overwhelmed by our pain. If that sounds a bit too “forgiving,” try to remember back to before you were bereaved and how you felt when you encountered someone who had just experienced a devastating loss. I know I’d love to get back some of the words that spilled out of my never-to-be-silent mouth!
I know a lady who never has a clue. If I say I have a headache, she will say, “Why don’t you take an aspirin?” I want to reply (loudly), “Gee, I wish I’d thought of that!” People don’t mean to be stupid, but they are often flailing around in the deep end of the pool when they can’t swim. They need some education—given graciously and with patience—because, “a teaspoon of sugar helps the medicine go down…,” But “teaching” and exercising patience can be tall orders for the wounded who are already suffering a pain that is beyond describing!
But, wait a minute! It’s not all bad news. Sometimes, there is great advice swirling around out there if we can just let our hearts be quiet for a minute and learn how to sift and sort. There are still souls who are tender-hearted , compassionate and wise beyond the obvious. Before we throw the baby out with the bath water, let’s do a little testing. Let’s consider who is giving the advice. Is it from someone we have always considered wise and trustworthy? Is it someone we truly care about—perhaps even admire? Is the counsel coming from the heart or the head of this person? Does s/he really genuinely care, or is it just an attempt to impress you with their great wisdom? Is this someone who has your future and your soul at the top of their prayer list, or is it someone who wants to exert power and control (even if they don’t realize their own motive)?
In other words, let’s take a deep breath and try to be discerning. After all, we can’t lose anything—except maybe something (or someone) we really didn’t need anyway. We may be bereaved and in deep pain, but we have not lost our own prerogative to choose our own paths and decisions carefully.
“Caring is comforting, but advice may not be. If caring is coming from a deep and sincere place in the heart, it can’t fail. If it’s just an obligatory duty, or a quest for power and control, it can’t succeed.”
This is only one of the reasons support groups and grief literature (like Grief Digest) can be so helpful. Since advice is an issue that bereaved people have all endured, many different responses to it have been learned and shared. Maybe each of us can edit some of those responses with small personal revisions that will help. You get the idea, “Two heads are better than one.”
By Andrea Gambill 

Friday, June 10, 2011

Myths About Grief


Myths and Facts About Grief


MYTH: The pain will go away faster if you ignore it.
Fact: Trying to ignore your pain or keep it from surfacing will only make it worse in the long run. For real healing it is necessary to face your grief and actively deal with it.
MYTH: It’s important to be “be strong” in the face of loss.
Fact: Feeling sad, frightened, or lonely is a normal reaction to loss. Crying doesn’t mean you are weak. You don’t need to “protect” your family or friends by putting on a brave front. Showing your true feelings can help them and you.
MYTH: If you don’t cry, it means you aren’t sorry about the loss.
Fact: Crying is a normal response to sadness, but it’s not the only one. Those who don’t cry may feel the pain just as deeply as others. They may simply have other ways of showing it.
MYTH: Grief should last about a year.
Fact: There is no right or wrong time frame for grieving. How long it takes can differ from person to person.

Wednesday, March 30, 2011

SIDS FACTS

What is SIDS?
Sudden Infant Death Syndrome (SIDS) is the sudden, unexpected death of an apparently healthy infant under one year of age that remains unexplained after the performance of a complete postmortem investigation, including an autopsy, an examination of the scene of death and a review of the medical history.

Facts About SIDS
 SIDS claims the lives of almost 2,500 infants in the US each year  that's nearly 7 babies every day. 

 SIDS is not caused by "baby shots." 
 SIDS deaths occur unexpectedly and quickly to apparently healthy infants, usually during periods of sleep. 
 SIDS is not caused by suffocation, choking, or smothering.
 SIDS is not caused by child abuse or neglect. 
 SIDS is not contagious. 
 SIDS occurs in families of all races and socioeconomic levels. 
 SIDS cannot be predicted or prevented and can claim any baby, in spite of parents doing everything right.


Friday, February 4, 2011

TRISOMY 13 SUPPORT

I wanted to spotlight another great resource for those families that have a child, or are expecting the arrival of a child, with Trisomy 13.  Living With Trisomy 13 is a wonderful resource for information, connection and support.

From their welcome page....


Whether they are:
• on the prenatal journey...
• have a child living presently...
• those who’ve had a stillbirth, a child who lived briefly or many days, and those further along on their journey.

This amazing community of families, through their own grief and pain, reach out to help others on this very unique journey with Trisomy 13. All these families have lived and are living with a Trisomy 13 diagnosis and the reality of how it changes lives. With Courage, Grace, and Hope they continue on. Experiencing the transformation of grief into “Thanksgiving JOY.”


This site focuses on bringing together the families of children diagnosed with Patau Syndrome. Also called Syndrome 13, having a third (extra) number Chromosome 13. Trisomy 13 children have multiple abnormalities. Some include heart defects, brain defects, cleft lip, cleft palate. The most severe are visual abnormalities, omphalocele, proboscis and holoprosencephaly. Because of the many abnormalities, we believe all of these children are survivors if they reach their mothers arms. They are true miracles of life.

This web site shares stories of children who have Trisomy Mosaic (Trisomy Mosiacism), Partial Trisomy, Full Trisomy 13, as well as other Chromosome 13 Variations - Balanced & Unbalanced Translocations. 

Many only survive outside their mothers womb a few short minutes, hours or days. While others can go home and survive months or years. Sadly, many of the children with Trisomy13 (Patau Syndrome) do not reach their first birthday. 

Friday, January 7, 2011

Trisomy 18

I wanted to share information with all of you about a disorder called Trisomy 18.  This disorder has unfortunately taken so many of our precious children back to their Father in Heaven.  Hopefully with continued education and funding we can learn more about ways to prevent Trisomy 18 or help those children with it to live a long life.

Information was taken from the Trisomy 18 Foundation......

What Is Trisomy 18?

Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births.  The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy. 
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.
At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
Some children will be able to be discharged from the hospital with home nursing support for their families. And although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community.  A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independantly without assisted caregiving.

How is Trisomy 18 diagnosed?

A lot of prenatal testing is available which may indicate Trisomy 18. It is important to understand that there are two types of testing:screening and diagnostic.
Screening tests indicate a risk, or likelihood that Trisomy 18 is present. These tests take the results of everyone who has had the same testing, and they compare your specific results with that group. Then they use statistics to identify the odds that it is present in your child, based upon the number of times others with the same test results have had children with Trisomy 18 in the past.
This is much the same way that weather is forecast, by saying there is a 20% chance of rain because 20% of the time, when the conditions were the same, it has rained. Just as the weather forecast is not completely accurate, screening tests are not a diagnosis but only an indication that the risk is higher than normal.
The following are screening tests, which CANNOT diagnose Trisomy 18 (click on the link for detailed information about the test):
AFP (also known as triple screen, quad screen, maternal serum screening)
Ultrasound (standard, level II, level III, 3D)
Diagnostic tests check actual cells and can determine if Trisomy 18 is actually present. This is a diagnosis, since the condition has actually been found in the cells.
The following are diagnostic tests, which CAN diagnose Trisomy 18. (click on the link for detailed information about the test)
CVS (Chorionic Villi Sampling)
Amnio (Amniocentesis, FISH test)
Knowing which test was used is important in deciding what your next steps are.

Making Decisions After a Prenatal Diagnosis

This is a very difficult time, and unfortunately there is no magic choice that will make this experience easier.

Take your time and learn as much as you can so you can make informed decisions.


If you have been diagnosed while you are pregnant:If you have positive results on a screening test we recommend that you discuss this with your doctor and a genetic counselor.   Your medical providers will talk about diagnostic testing options with you. The decision about whether to have these tests is up to you.  If a diagnostic test comes back positive for Trisomy18, the results should be discussed with experts, including a medical geneticist, a genetic counselor, as well as your own doctor. 
Learn More: Expecting a Child 
If your child was diagnosed after birth:If your child was diagnosed after birth, your child will be receiving specialized care from the hospital and his or her doctors will be helping you learn how to best care for your child . 
Learn More: Caring for a Child


After the Diagnosis:
  • Take your time before making critical decisions
  • Ask questions and ask for explanations of anything you don’t understand
  • Know as much as you can; make sure the information is current
  • Read other parents’ stories
  • Be informed about medical conditions
  • Know it’s okay to grieve the loss of the child you envisioned
  • Share with other parents in our Online Support Community
  • Know that every pregnancy and every child is different
  • Find medical professionals who are on your side
  • Find support

Remember, whatever happens, you are still a parent!


Interested in making a donation to the Trisomy 18 Foundation? You can do so here.





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