Mother's Day 2013

On Mother's Day, like every other day, I am acutely aware of how blessed I truly am.  My husband is my best friend; our three boys, miracles.  We have happy, healthy, children.  Our needs are met.  We are, indeed, blessed.

When people learn about Josiah (and his Down syndrome), some say "I don't know how you do it."  When they learn about the prenatal diagnosis, "you must have been devastated."  When they learn of those early months and the heart issues - "that must have been awful."  These are not uncommon statements.  Matter of fact, they are quite commonplace amongst new friends.

Do what???  We simply raise our children.  We try to make the best lives possible for our family.  The prenatal diagnosis was not devastating, it pushed us to educate ourselves.  It pushed us to prepare in a way unlike with our first two boys.  We were not devastated; we were grateful for the knowledge and opportunity for growth.  The heart issues were not awful.  It was a serious issue that was fixed (with the amazing help of a few very special people).  Josiah's heart was changed from broken to whole.  The ending was anything but awful.

I don't think I do anything special.  Each day, C & I awake and do the best we can.  Sometimes we yell.  Sometimes we scream.  Sometimes we cry.  Sometimes we laugh.  Always, we protect and love each other and our children.  We go to doctor's appointments.  We juggle school and social commitments.  We try to balance stress and play.  We can't always afford to do the things we'd like but at the end of the day we are satisfied with all we have.  I am not special.  Our family is not extraordinary.

Let me tell you about someone that is extraordinary.  I shall simply call her J.

J lost a father during her vulnerable adolescent years.  Her Dad was 50.  She would complete High School and College, without the admiration of a father in the audience.  She would marry; a dear family friend would walk her down the aisle.  She would dance her first dance without her Daddy's arms.  She would have four children.  She would bury two: one at two weeks, the other at 50.

She would love her children unconditionally.  Her grandchildren would look forward to every moment shared.  She would always say "I love you" to her husband before he retired for the night.  She would hug first, and last.  She would make everyone who knows her, look at her with admiration.

Well into her 70's, J remembers what is important.  She remembers the Lord in everything she does.  She gives thanks for everything, and asks for nothing.  She sacrifices first.  She 'takes' last.  She is a true gift.  May she live for many years to come.

If I live until eternity, may I become half the mother (and woman) she has demonstrated herself to be.

Always remember: Live well.  Laugh often.  Hurt never.  Be grateful always.

I hope you had a wonderful Mother's Day.

31 for 21 Blog Challenge: POST THIRTY: What Not To Say...

Things not to say:

“I’m sorry” or “How sad.”
Any statement that expresses pity is likely to offend. Instead of pity, offer congratulations.

“Down’s baby are really happy.”
This phrase is a double no-no. First off, don’t use phrases like “Down’s baby” or “Down’s kids”. Although it may feel a little awkward at first, it is very important that you always put the person first and the diagnosis second. Instead use the phrases “baby with Down syndrome” or “person with Down Syndrome."

The statement above also perpetuates a stereotype about people with Down syndrome. People with Down syndrome experience a full range of emotions like everybody else, and perpetuating stereotypes helps no one and may offend new parents.

“This baby is a blessing in disguise” or “You are a saint.”
The new parents may not be feeling particularly blessed or happy with God at the moment, and may not appreciate hearing that they were singled out. They also are likely to be experiencing some non-saint like emotions and many new parents just won’t find these sentiments helpful.

“I couldn’t do it” or “You are a better person than me.”
This situation isn’t about you, and the new parents shouldn’t be put in the position of having to reassure you! Also, statements such as these imply that the parents need special traits, that not everyone has, to raise a child with Down syndrome. It is much better to express faith in their abilities by saying things such as “I know that you can do this” rather than implying extra human abilities are needed.

A Hot Topic: Down Syndrome in the News

"HHS mandate"

Source:
https://docs.google.com/document/pub?id=1w48IMDEXH4w-ZWW802xAaqiYJQ-NvuL-4UegPg1_YIE

The recently finalized Health and Human Services (HHS) regulations will mandate that private insurers provide no-cost prenatal genetic testing for all expectant mothers.  Down Syndrome advocates are calling for the mandate to be rescinded.  Here's why.

The mandate is included in the Patient Protection and Affordable Care Act's (PPACA) requirement for no-cost preventative care services for women.  To include this mandate under "preventative care" implies that Down Syndrome can be prevented (which it cannot).  It also seems to imply that it SHOULD be prevented. 

As written now, the HHS only requires no-cost testing.  It does not, however, require no-cost supports, etc so that an expectant mother may make a more informed decision based on the findings of the prenatal testing.

Also of note: Mammograms are not included in the mandate, and mammograms would prevent cancer deaths.

Another important note: The screening for DS is funded by the government in the HHS mandate. 

"The Value of Prevention"

Source: http://www.businessgrouphealth.org/benefitstopics/topics/purchasers/condition_specific/evidencestatements/neuraltubecefects_es.pdf

It is reported that the life-time cost for all cases of Down Syndrome (in 1992) exceeded 1.8 billion dollars.  This includes incremental medical, developmental, and special education costs as well as "lost productivity and earnings due to disability and death."

"The economic benefit of prenatal screening is defined as the averted cost from preventing the birth of a child with a chromosomal abnormality."

IDSC

Source:

https://www.facebook.com/profile.php?id=1649516049#!/IDSCforLIFE

The International Down Syndrome Coalition (IDSC) for Life has two major concerns with current health care mandate . The first concern is for the child who is in the womb, and is diagnosed with Down syndrome. Currently, the termination rate for children who are diagnosed in utero is reported to be near 90 percent in America. The International Down Syndrome Coalition for Life is concerned that the current health care bill will encourage families to abort the life of a child who happens to have Down syndrome, in the name of cost effectiveness.

“Will there be a panel that will decide that the price savings of terminating the pregnancy outweighs the dignity and value of the life of a child? Will it then become a patriotic responsibility to end a life that others deem less than perfect? Will there be measures written into the reform that protect the life of a child diagnosed prenatally with special needs?

“Since the goal of the healthcare reform bill as it is written is to help save the nation money, the IDSC for Life believes these are vital concerns which must be addressed.

“Our second major concern pertains to the individuals with Down syndrome who have been born. Currently, these people are given therapies and life-saving surgeries to help enhance the quality of their lives. Under HR 3200, can we be sure that this will continue? Will their medical concerns be treated equally with individuals who do not have Down syndrome? The IDSC for life is very concerned that our children, grandchildren, sisters, brothers and friends will not be given equal access to health care, because of their diagnosis. We believe that each individual deserves medical care that is needed to ensure that they can live full and happy lives. We cannot help but wonder if this health care reform act will actually lower the quality of care that our loved ones require.

“The IDSC for Life would like to see provisions in any health care reform bill which will ensure the protection of the lives of individuals with disabilities. We believe those provisions must be written into any health care reform to protect those in the womb, and those who are already born.”

TIME MAGAZINE Article regarding Down Syndrome

Last night, I paid for a subscription to TIME MAGAZINE so I could read the article contained therein.  The article is entitled "Early Decision."  It was written by Bonnie Rochman.  As to not infringe on copyrighted material, I have summarized the article briefly here.

"Early Decision" chronicles a 40 yr old woman who makes the decision to have amniocentesis to determine whether or not her unborn child has Down Syndrome.  Like Carl and I, her age brought the statistical likelihood to 1:100.  Additional factors increased the probability to 1:5 for her, 1:3 for us.  Within a few days, she received the news (as did we).  The unborn child has Trisomy 21.

The article describes how, upon learning the news, she left her half-full grocery cart, returned home, pulled down the shades, crawled into bed, and wept.  It was a little different for us.  The day we had the amnio, I did come home and take a nap.  I was stressed.  The test has made me nervous.  I just desperately needed rest.  By the time we received the confirmation call, Carl & I were relieved.  There were so many other chromosomal abnormalities that it could have been; Down Syndrome was the least of them. 

The article goes on to say that 1 in every 691 babies born in the U.S. has DS.  400,000 people in the country have DS.  It suggests the number would be higher if not for prenatal tests.  Pregnancies, where an early prenatal diagnosis of DS is determined, 90% result in abortion.  Will a new test increase that number?

New breakthroughs in prenatal technology (blood tests for DS and other chromosomal disorders) are in the works.  One, called Sequenom, can be administered as early as 10 weeks gestation.  Current tests, generally, are not carried out until at least week 15.  Current tests also carry a small risk of miscarriage; a blood test would not.  This new blood test accurately identifies 98.6% of DS pregnancies.  Some are calling it a "major step for prenatal diagnosis."

The concern is this: New prenatal screening may continue to reduce the size of the DS population.  50% of all babies born with DS have congenital heart defects.  Although new surgical techniques have made repair relatively routine, will policy makers decide that 'eradicating' the 'problem' is more cost effective?  Will earlier screenings lead to an increased number of terminated pregnancies?  "Now is the time to have kids with Down syndrome," says Amy Julia Becker, author of A Good and Perfect Gift, about life with her daughter Penny, 6, who has Down syndrome. "It is ironic that [earlier screening] is happening at a time when it's easier to have Down syndrome than ever before."

The new screening means that parents will no longer have to wait for a second-trimester ultrasound to learn the sex of their child; "early blood tests can now reveal that and much more. A single new genetic test can screen for nearly 600 mutations. If it's O.K. to eliminate people with Down syndrome, is it also O.K. to end a pregnancy in which the fetus has a terminal diagnosis like Tay-Sachs disease? How about a cleft palate, which can be surgically corrected? And what about deciding the fate of a baby who has a breast-cancer gene? Selective abortion of female fetuses in China and India is chillingly commonplace. And putting aside the existential debate over abortion, what does it mean for a society to weed out children with Down syndrome or any of the other less than perfect among us?"

Carl and I were happy to receive the early diagnosis.  One, done 8 weeks sooner, would not have changed our course.  We were going to welcome Josiah into our family, regardless of DS.  The early diagnosis allowed us extra time to prepare mentally, research, and prepare to put services into place.  How many other women will make a different choice based on an earlier screening?  That seems to be the concern.

According to the article, parents and professionals are afraid that more terminations may lead to a reduction of services for babies with Down syndrome.  The gains of the past 40 yrs may be lost.  Children with DS may return to institutions, and not be mainstreamed as they are now.  "That would be bad under any circumstances, but it would be particularly cruel if it happened now, just at the point that the achievements--and the acceptance--of people with Down syndrome have been soaring."