Friday, February 29, 2008

Ministry opportunity

Ok, it's not as glamorous as it sounds....Paul and I have been asked to volunteer in our church's baby nursery. Tomorrow morning we have to -- will be privileged to attend a "nursery workers training" meeting so we can learn how to take care of babies. LOL

This evening we each filled out a 7 page "Ministry Volunteer Application Packet & Ministry Intent Form", which includes general information such as our address & phone #, a section about our Christian experience, another section on our Christian ministry experience, a list of personal references, and last but certainly not least, an authorization for a criminal background check. I'll tell you what, these people take their volunteer ministry positions seriously! Ü One question in the Christian ministry section asked me to list any special abilities that I feel would benefit the area in which I am applying to volunteer. The only thing I wrote was "18 years experience as a mother who has literally changed thousands of dirty diapers." Do ya think that might qualify as a "special ability"? hahahahaha

The completed application will be kept in our "permanent file" at the church. It reminds me of my elementary school days, when every grade in every class, every standardized test score, every visit to the principal's office (and no, I wasn't ever sent to the principal's office, I was a good girl!...lol), every honor and award....all ended up in my "permanent file". All teachers had to do when someone started acting up was to make reference to the offense being recorded for all time in his/her "permanent file", and the offender would immediately straighten up. LOL

Seriously though, we are happy to be used by the Lord to minister to the youngest and most innocent lambs in His flock. There's just something about snuggling a baby close to my heart that enables me to feel the Lord's love & compassion. When I lovingly wrap my arms around Luke and draw him close, I can feel my Father's arms lovingly embracing me. And when Luke smiles up at me, it's as if all heaven is smiling right along with him. No, being a nursery worker isn't the most "glamorous" position in the church, nor is it the most visible. But it may very well be one of the most important, at least in God's eyes. "Whatever you do for the least of these, you do for me." Matt. 25:40

Tuesday, February 26, 2008

Myths about a diagnosis of Trisomy 21

The following article was published on a blog dedicated to sharing inspiring stories about children and adults with Down syndrome:

Myths about a diagnosis of Trisomy 21...

I get emails or phone calls very often from families who have a new diagnosis of T21. Sometimes it is their friends or relatives who make the first contact. Then soon, the parents are emailing or calling. This has brought me a unique perspective of the entire process of receiving the news of Trisomy 21, Down syndrome, in utero. I would love to share some of the things that are said to me, and clear up any confusion.

Myth number 1: My child will die young, as individuals with Down syndrome do not live longer than the mid 20's. Reality: This is simply not true. Individuals are living well into their 50's and even longer, now that proper medical care is being given to treat heart or other life threatening conditions. Many individuals are capable of employment, living independently, and enjoy many hobbies and activites. See our T21 individuals in the news.

Myth number 2: Your child will suffer. Reality: Again, this could not be further from the truth. Many people in the world require corrective surgery. If your child needs surgery for any reason, the medical care given to individuals with Ds is wonderful. You can expect your child to do beautifully, and continue to thrive. While as many as 30-50% my have a heart condition, only approximately 5% will require open heart. The care of that 5%, by qualified pediatric cardiologists, is remarkable. The remaining 25-45% will have other less invasive procedures, or just be monitored. The cardiac care these days is absolutely amazing!! All other corrective surgery is also incredible. Any medical conditions can be treated today, unlike years ago when treatment was unknown. With proper medical care, individuals go on to live happy and wonderful lives!

Myth number 3: The physicians have told me that my child's Down syndrome is worse than other cases. Reality: This is simply impossible to tell in utero. Or even right at birth for that matter. Even children with many surgical needs have gone on to do amazing things. Karen Gaffney is an amazing example of an individual who needed much corrective surgery, and has gone on to do amazing things. She is not unique, this happens all over the world. I have met soo many families who have seen their family member through medical care, and the individual goes on to do beautifully in every way.

Myth number 4: The physicians have told me my child has a mild case of Down syndrome. Reality: While there are many different abilities for individuals with Down syndrome, a physican can not tell in utero or at birth, how a child will fare. Most instances where an individual has a more difficult time learning or behaving, is indication of a dual diagnosis. Typical children have this exact possiblity. If a child needs corrective surgery, that does not mean they will have severe developmental delays. Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.

Myth number 5: Your chances of having a child with Down syndrome increases greatly after age 35. Reality: Yes, indeed your chances increase. But let's discuss the word greatly. When we see the estimated rates in the books, you may see that at age 20 it is 1/1231. At age 25 it is 1/887. At age 30 it is 1/685. At age 35 it is 1/274. And finally at age 40 it is 1/78. So, yes, your chance does increase with age. And boy, when you put it that way, it sure does look like it increases greatly. However, if you were to look at these numbers in percentages, they look a little more interesting. Age 20: .08%. Age 30: .15%. Age 35: .36%. Age 40: 1%. So as one physician said to us, "Leave the guilt at the door", because at age 39, our estimated risk was 1/100. That means it was a 1% chance of having a child with Down syndrome. That means we had a 99% chance of not having a child with Down syndrome. He went on to add, "Who would think to not have a child if you have a 99% chance of this not happening?" Now, to set the record straight, this was the way he put it. We say, "Wow, what a miracle. We had a 99% chance of not having this gift from God. Whew, that was close!" We don't ever want to imagine what our life would be like with our our beautiful daughter. So indeed, the numbers do increase. However, when you look at it from a percentage view point, it sure makes this drastic rise, that many professionals talk about, seem pretty insignificant doesn't it? You have a better chance of having other things happen to you. In fact, there are a lot of ailments we all have a greater chance of having than the chance of being blessed with a child with Down syndrome. One additional point to add to this; 80% of all children born with Ds are born to mothers 35 and under. Many think this happens only to older mothers, since there is an increase. However, as you can see, the great increase is not as great as is told, so with the decrease in women having children at older ages, this makes the number of children with Down syndrome being born more often to younger moms. Numbers are interesting aren't they?

Myth number 6: Bringing a child who has Down syndrome into your family will be harmful to your other children. Reality: Again, just not true! In fact it is just the opposite. Your other children actually have a higher chance of becoming more compassionate and accepting of other people. The benefits have been a best kept secret until Dr. Brian Skotko did a study on the affects of having a sibling with Down syndrome. Another unexpected blessing. Read here for more information. Dr. Brian Skotko's study.

Myth number 7: There is a higher divorce rate for families who have a child with Down syndrome. Reality: While divorce can happen in any family, the studies are actually showing it is currently lower in the families who have a member who happens to have Trisomy 21. Perhaps it has something to do with the many lessons they teach us about life. Click here to see more on this.

Myth number 8: This will ruin your life. Reality: Click on this link to see how this has affected the families who have chosen to write about their experiences. I am sure you will see that this has done anything but ruin their lives. It has indeed been a new journey for all of our families, and one that can require many graces at times. (Show me parenting that doesn't need more at some times!) But ruining our lives... that is simply not happening! An extra chromosome is all it is. The fear of that, is much more paralyzing than the reality. Enjoy your pregnancy! Enjoy your baby!


Hidden Treasures, The Trisomy 21 Journey

Monday, February 25, 2008

Watercolour Ponies

A few days ago Paul was in a nostalgic mood, so he shut the tv down and put in a couple of old cassette tapes....one by Wayne Watson, and then immediately afterwards, another one by David Meece.

One of our teenagers, who shall remain nameless, walked through the room and said, "Who is THAT?!?! He sure sounds weird!" When Paul proudly proclaimed the musician as being a very popular Contemporary Christian artist during our early marriage, our resident connoisseur of "fine music" just sniffed and said in a very condescending, superior tone, "Never heard of 'em", and walked out of the room. The little snot! LOL

I would never add fuel to my teenagers' fire by agreeing with them in their hearing, but even to my ears, those two "oldtimers" from our generation of Contemporary Christian music did sound.....well......OLD! LOL But the message of one song was still just as bittersweet as it was 18 years ago......

~Watercolour Ponies~
by Wayne Watson, c. 1987

There are watercolour ponies
On my refrigerater door
And the shape of something
I don't really recognize
Drawn by careful little fingers
And put proudly on display
A reminder to us all
Of how time flies

Seems an endless mound of laundry
And a stairway laced with toys
Gives a blow by blow
Reminder of the war
That we fight for their well-being
For their greater understanding
To impart a holy reverance
For the Lord

But, baby, what will we do
When it comes back to me and you?
They look a little less
Like little boys every day
Oh, the pleasure of watching
The children growing
Is mixed with a bitter cup
Of knowing the watercolour ponies
Will one day ride away

And the vision can get so narrow
As you view through your tiny world
And little victories can go by
With no applause
But in the greater evaluation
As they fly from your nest of love
May they mount up with wings
As eagles for His cause

Still I wonder, baby, what will we do
When it comes back to me and you?
They look a little less
Like little boys every day
Oh, the pleasure of watching
The children growing
Is mixed with a bitter cup
Of knowing the watercolour ponies
Will one day -- one day
Ride away

After Jared was born, if we'd hear "Watercolor Ponies" on the car radio, Paul and I would both brush tears from our eyes, thinking of how quickly our sweet little baby would be riding away from us, and wishing we could capture those precious moments in time and keep him with us forever.

And now, here we are nearly 20 years later, preparing to send our firstborn child, our baby, out into the world. How can this be? Didn't we just proudly announce his birth to our family and friends? Didn't we just watch him take his first step? Did he just leave for his first day of Kindergarten? Didn't he just hit his first home run in Little League? When did he suddenly become a man?

Our time with Jared is quickly drawing to a close, but even as we drink from this bitter cup, we are so very grateful that he has learned the one lesson we were asked to impart....to have a holy reverence for the Lord. And now Paul and I can be given no greater honor than to proudly stand watch as Jared prepares to mount up with wings as eagles for His cause.

Tuesday, February 19, 2008

Prunes, the yukky fruit!

(Turn off the background sound at top right
before playing video.)


Wednesday, February 13, 2008

Look out Bahamas, here we come!

WoW! This has certainly been the week for good news! We just got word this morning that the Sunshine Foundation has granted Jaden's dream! The Sunshine Foundation grants dreams to children ages 3-18 who have serious illnesses, physical disabilities, or who have been abused. We have decided to use this generous grant to take Jaden & Luke on a cruise for families who have children with Down syndrome.

The 3-night Bahamian "Buddy Cruise" will depart Port Canaveral, FL on October 17, 2008. The event is designed to provide an opportunity for families from across America to come together and bring awareness to one of the most frequently occurring chromosomal deviations, as well as promote inclusion for individuals with Down syndrome.

The Buddy Cruise will feature the talent of Sujeet Desai, a 26-year-old accomplished musician born with Down syndrome. He and his wife Carrie have been featured in Wall Street Journal, Time magazine, and have aired on national TV shows such as The View, 20/20, and The Oprah Winfrey show.

Emily Perl Kingsley, who authored "Welcome to Holland", is scheduled to deliver the keynote address: “Thirty Four Years with Down syndrome. The ‘ups’, the ‘downs’. What I've learned from life with Jason.”

As a writer and activist for children with special needs, her experiences with her son Jason (an actor with Down syndrome) inspired her to include people with disabilities into the Sesame Street cast. She has received 17 Emmy Awards and 13 Emmy nominations for her work on SESAME STREET.

I'm sure I'll be writing more about this exciting adventure as our departure date approaches, so don't forget to check back for updates!

Monday, February 11, 2008

Today's Blessings

This morning we received some very good news in an email from Luke's birth parents. They wanted us to know that they had signed & mailed a release form which will allow our agency to receive a copy of Luke's amended birth certificate, which now lists his full birth name, instead of his last name only. Our agency needed the amended copy so they could apply for his Social Security # and Supplemental Security Income, which we have to get in place before his adoption can be finalized.

Last Sept, after 3.5 months of filling out and submitting reams of paperwork to the Social Security Administration to get Luke's SS#, using his original BC as proof of identity, we were told he would be issued a SS# within 48 hours. But then a few days later someone higher up abruptly changed his/her mind and refused to issue him a SS# until we submitted an *amended* BC with his full name on it, which we were told would take an additional 12-16 weeks! I got so frustrated with the endless bureaucratic red tape that I contacted both of our US representatives to see if they could help. Unfortunately, they didn't help in the least, and probably just managed to make the SSAdm more determined to drag the process out even longer. I finally decided to leave it in the Lord's hands and have faith that it would all happen in His good time.

Anyhoo....it's been a looooong 8 months, and I'm sure the process will take several more, but at least we can finally get this show on the road! Thank you Lord!

Thursday, February 7, 2008

Grace and Peace

Our oldest son Jared, our resident computer guru, helped me figure out how to add background music to my blog, isn't it beautiful? (If you can't hear the music, you need to turn on your speakers.) Thanks so much, Jared! After he finished he reminded me that computer techs typically make around $75 an hour. Hmmmm.....are you sure you wanna go there, Jared? LOL

"Grace and Peace" was written by one of my favorite Christian artists, Fernando Ortega. My prayer is that the beauty and splendor of his tender music will quietly usher you into intimate fellowship with our Heavenly Father through His Son, Jesus Christ, and that the Holy Spirit will bring grace and peace to your hearts.

This is what Fernando had to say about why he wrote and recorded "The Shadow of Your Wings: Hymns and Sacred Songs", which includes "Grace and Peace":

"There's too little time for reflection in my life these days--too little meditation and quiet. As everything about our culture gets louder and more "in-your-face", my ability to concentrate on spiritual things feels thin and compromised. These songs were written in response to that dilemma.

My starting point was the morning mass from the The Book of Common Prayer--a pronouncement of peace, prayers of contrition, the bending of the knee. These things bring me to a right perspective of worship.

From there, the record turns to the Holy Trinity--the faithfulness of the Father, the wooing of the Holy Spirit, the sacrifice and supremacy of Christ. I tried to lay these songs out with a liturgical sense, though in the form of a personal devotion, or "quiet time."

My greatest reward in putting this record together has been in finding rich, new beauty in simple Bible passages I have known all my life."

~~Fernando Ortega

Here are a few rave reviews of the album:

~Cross Rhythms Direct
His first release since 2004, this collection of reworked hymns and sacred songs by US-based singer/songwriter Fernando Ortega is simply spectacular. Ortega's main aim for this release is to offer up music of meditation as an antidote to these loud and busy times and, with the utmost skill and precision that is now his trademark, he carries this off in style. The album itself consists of traditional hymns, some of which have been given new music by the man himself, together with a tasteful seasoning of outstanding original material containing expressions of praise that come close to matching the sheer poetry of the hymn writers.

~LifeWay
Ortega’s The Shadow of Your Wings invites introspection, contemplation, adoration, and exultation. There is a sense that we don’t have to "get this over with in a hurry, because we have so much to do." Rather, there is a peace that pervades the music, encouraging you to spend a little more time just being present; there is permission to sit quietly with no other agenda than to perhaps hear the voice of God.

In this moment in history when there are a hundred voices clamoring for our attention, and down time is frequently considered wasted time, it is utterly refreshing to hear someone issue a call to "Come away, my Beloved." With The Shadow of Your Wings, Fernando Ortega does just that.

~CMCentral
Fernando Ortega returns with an album of hymns and inspirational songs to share a sense of gratitude for [God's] providence with listeners. The Shadow of Your Wings...exudes praise in it's purest musical form. From the opening song...which offers a traditional Christian greeting, to the final strains....that closes the album, listeners are treated to an elegant collection of earnest and heartfelt music that worships our Creator.

After a career that spans over fifteen years [Fernando] continues to craft albums that are experiential. The Shadow continues this trend, allowing listeners to feel as though they've stepped into a sanctuary just in time to participate in an endearing worship service. The stripped down production found on the album is entirely unassuming and lends itself to an intimate setting, making this a rather personal album.

Since our world is so busy and filled with appointments and other distractions, it's a real treat to find an album like this to take your mind off of what's coming at you from all directions. The Shadow of Your Wings is like a musical eddy that reminds us to pause and consider the world around us, to thank our Creator for all that He's given us.

Saturday, February 2, 2008

Bombing, Abortion, & Down Syndrome

I was horrified to hear the news accounts of yesterday's bombings in Iraq. For the terrorists to use two innocent women with Down syndrome to carry out their evil intents was beyond barbaric. Civilized nations all over the world have condemned these bombings as senseless acts of cowardice.

And yet I feel it is the height of hypocrisy that the vast majority of society today will continue to actively embrace and encourage "termination" of fetuses diagnosed with disabilities encompassing a wide range of severity, including Down syndrome.

Read what prominent Baptist minister John Piper had to say about yesterday's bombings on his blog this morning:

Bombing, Abortion, & Down Syndrome
Posted: 02 Feb 2008 09:44 AM CST
(Author: John Piper)

Al Qaida has moved another step toward western standards of abortion barbarity in using Down Syndrome women to blow boys and girls to pieces. The news is that this was not suicide bombing, but the detonation of retarded girls at a distance.

The disgust one feels for the kind of heart that does this could reveal to England and America how we should feel when we screen for Down Syndrome babies and then kill them. Compare the stories:

Story One: al Qaida

At Breitbart.com (and most news sources), it is reported that yesterday al Qaida used two women with Down Syndrome to bear the explosives under their clothes and then were detonated remotely killing over 70 people.

Two women suicide bombers who have killed nearly 80 people in Baghdad were
Down's Syndrome victims exploited by al Qaida.

The explosives were detonated by remote control in a co-ordinated attack after the women walked into separate crowded markets, said the chief Iraqi military spokesman in Baghdad General Qassim al-Moussawi.

Other officials said the women were apparently unaware of what they were doing in what could be a new method by suspected Sunni insurgents to subvert toughened security measures.

Story Two: Abortion

Medical News Today:
Although no national data are available, the abortion rate of fetuses with the condition [of Down Syndrome] was found to be 59% in one California study and 92% in an English study.

Steve Calvin at Physicians for Life:

I believe that we are at a tipping point. The counterweight to societal support
for people and families with Down Syndrome is the expanding availability and
promotion of prenatal DS screening tests. When DS is confirmed, abortion is
offered. Increasingly, it is chosen. In England and some major U.S. cities,
more than 90 percent of DS fetuses are aborted.”

New York Times, with reference to Detroit, MI:

Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age. About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.