Imagination Overload

Lucy has been excited about Christmas--although she doesn't QUITE get it. She brought her piglet doll to one of her sisters and said, "Jesus", her tigger doll and said, "Joseph", her fozzie bear doll, and said "Blessed Mother" (!!!!), then she got one of her baby dolls and had her KNEEL in front of this extremely unlikely "holy family"!

Have you made your reservations?

The hidden confraternity of parents with kids with disabilities

Last week after Mass, the man who had been sitting in the pew next to our family came up to my husband and Lucy and said, "This is the little girl whose smile can light up the entire church!" He introduced himself to us, and in the course of the conversation, this kindly gentleman revealed that he had lost a beloved 3 year old daughter to a rare chromosomal disorder. He was touched because there was something in the warmth with which Lucy had reached out to him for the sign of peace that reminded him strongly of his own daughter. We found ourselves soon chatting like old friends!

the importance of not underestimating our kids

This week at the commissary, I decided to let Lucy walk alongside me, instead of riding in the cart. Anyone who has shopped in an enormous commissary 2 weeks before Christmas, and has dealt with a 5 year old with Down syndrome, knows how remarkable that sentence is! It wasn't temporary insanity that prompted me, but, now that Lucy weighs in close to 43 pounds, it is getting harder and harder to lift her high enough to get those long legs into the cart seat! I decided to give her a chance and expected it to be a short-lived experiment, but surprisingly she did quite well. But that wasn't the only surprise the shopping trip delivered...
Lucy helped me push and for the most part stayed right beside the cart. At one point I left her squatted next to the cart, looking at the raisin boxes, while I got the flour 10 feet away. As I returned, I saw Lucy lifting a large carton of prunes from the bottom shelf and handing it up to an elderly woman, who was saying, "Why, thank you for helping me! You are a sweet little girl to help an old lady!" Apparently the older lady had asked Lucy for the prunes and Lucy both understood and cooperated! May God be praised!

thought from St. Frances X. Cabrini

"If you encounter difficulties it is a good sign--a sign of future blessings."~Mother Cabrini


How very much this applies to parents expecting a child with Down syndrome. A difficulty, yes, but oh, what a blessing in the long run!

Doll camping?

Bill saw Lucy playing with her little dolls, and asked her what the dolls were doing. Lucy answered, "sleeping bags".

Not Ds related, but worth sharing

The following article was written by a journalist who visited his son's unit in Iraq, and met a Catholic chaplain there. A beautiful story!


Catholic Navy chaplain shares story of Iraqi conversion
Muslim woman asks—“Do you give up so easily on Jesus?”

Baghdad, Dec 4, 2007 / 04:48 pm (CNA).- Recently, CNA had the opportunity to send a writer to the Anbar Province of Iraq to cover the experiences of a Catholic chaplain working in the trenches. What follows is his recounting of the amazing encounter he had with this apostle in the desert.

Father Bautista: Apostle in the Desert
Joe Burns, War Stringer

A few weeks ago, I returned to the U.S. after spending a week with Army troops in Iraq. More specifically, I spent six and a half days with my son’s outfit, the 63rd Ordnance Company stationed at Al Taqaddum. Al Taqaddum is a former Iraqi airbase, nicknamed TQ, and lies about 50 miles west of Baghdad in the Anbar Province near Ramadi. My son Mike and I spent the first three days in Baghdad while I was processed for my press pass and then waited for a helicopter to become available to take us to TQ.

Al Taqaddum is covered in dust. In some areas where vehicles had repeatedly driven, the earth was ground down to a fine powder several inches deep (I was tempted to look for Neil Armstrong’s footprints!). The dust in this part of Iraq is so prevalent that it hangs in the air at all times of the day and night, clinging to clothing, nostrils and eyes.

On the second day at Al Taqaddum, I was privileged to attend Mass said by Fr. Jose A. Bautista-Rojas, a Navy chaplain who ministers to the Marines and soldiers at TQ and in the Ramadi area. It was a hot, dry, windy and desolate day.

In the 30 minutes prior to Mass, Fr. Bautista discussed recent events of the day with the three of us: my son Mike, his commander Captain Tom Heilman, and myself.

The setting for our conversation was a makeshift wooden chapel, sparsely furnished with the plastic chairs we sat on and a small white table for an altar. Being inside this simple chapel was like finding an oasis in the desert. What made this oasis most refreshing was the time we spent with Fr. Bautista, a man of irrepressible good humor, joy and generosity.

The events of that morning for Fr. Bautista included a Mass he had just conducted in Ramadi at a Marine detachment. What made the Mass unique, was that his “congregation” consisted of one lonely Catholic Marine. When Father Bautista arrived in Ramadi along with his personal bodyguard, a strong young, well-armed Marine, he visited a detachment of eight men, only one of whom was Catholic. Undeterred, he told the Marine he would be happy to say Mass for him.

The young Marine confided to him, “You know Father, back in the States, I didn’t go to Mass that often, but out here I find myself longing to go to Mass again. But I’ve been here for seven months and you’re the first Catholic chaplain I’ve seen.” Fr. Bautista spent some time listening to his story and asking questions about his family. Then he said Mass for this single Marine, in the presence of countless angels and saints who rejoiced with them.

As Fr. Bautista continued speaking with us, he described the fascinating story of a young Muslim woman who was entering the Church under his guidance through the RCIA process. Her story was moving. While working with Americans, this woman, who must remain anonymous, was touched deeply when she realized that the U.S. medical personnel not only treated wounded Americans and Iraqi civilians, but also treated wounded enemy combatants, including one who was known for having killed U.S. Marines. As she put it, “This cannot happen with us.”

This dramatic extension of mercy even to enemy soldiers caused her to take the next cautious step. She asked Father Bautista to “tell me more about Jesus.” As Father described Jesus and his life in the Gospels, one thing stood out among the rest for the Muslim woman he called “Fatima” (not her real name) and that was how kindly Jesus had related to, as she put it, “the two Mary’s.” Fatima was moved to see how Jesus deeply loved Mary, his mother, who was sinless, but also how Jesus deeply loved Mary Magdalene, who was “a great sinner.” As these discussions continued, Fatima reached a point where she said to Father Bautista, “I want to become a Christian.”

Since Father Bautista sees himself as a chaplain for all troops, not just Catholics, he decided to introduce Fatima to other chaplains from Protestant and Orthodox backgrounds. After some time had passed, Fatima returned to Father Bautista and said, “I want to become a Catholic like you.” When Father asked her the reason for her decision, she said, “You were the only one who told me about the other Christians, so you left me free to decide for myself. That’s how I knew this was the right decision.”

As their catechetical lessons developed over time, Fatima’s family discovered her plan and was warned sternly by her father that if she continued on this path, she would be disowned by the entire family and would never have contact with them again. At this point, Father Bautista became concerned for Fatima’s well-being and cautioned her to look carefully at the consequences of her decision and to think seriously before continuing her path into the Church.

Fatima paused for a moment and then looking intently at Father Bautista asked, “Do you give up so easily on Jesus?” The question took Father aback for a moment, but then he thought, “This is incredible; this Muslim woman is already bearing witness to me about how important my own faith is!”

As he related it, this woman’s question had caused him to give greater thanks for his faith and for the great privilege of sharing Christ with others. Fatima is currently continuing the RCIA process with great courage and joy.

In a wonderful irony, the first words she will hear spoken during the Liturgy of the Word in the Rite of Acceptance will be those spoken to her great ancestor, Abraham: “Leave your country (and your kindred and your father’s house), and come into the land I will show you” (Gen 12:1).

After sharing this moving testimony, Father Bautista excused himself to prepare to celebrate Mass for us. Moments later, as he led us in the prayers of Mass, I was struck by how blessed I was to be present in this moment, in the ancient dusty land of Abraham, who so willingly offered his only son to God. Now, together with Abraham and his son, Isaac, with all the angels and saints, with our own brave son and his commander, we returned to this same land and heard these magnificent words:

“Look with favor on these offerings and accept them as you once accepted the gifts of your servant Abel, the sacrifice of Abraham, our father in faith, the bread and wine offered by your servant Melchisedech …”

Here, in the same treeless, windy, dusty desert from which God had called Abraham, Christ had returned. Now, through the hands of his servant priest, Father Bautista, a perfect offering was made to fulfill the offering attempted by Abraham. And through this same priest, the Good News that was foretold to Abraham now returned to his homeland to bear witness to a courageous Muslim woman; a woman who was willing to sacrifice everything to know this Jesus who forgives even his enemies and who loves even the sinful Mary.

Lucy meets Santa

We have never made a big deal of Santa Claus with Lucy, choosing to emphasize St. Nicholas and Christmas as the birth of Jesus. I have told her that Santa is "pretend" just like Cinderella (her most favorite heroine of all time), but now that she has sat in his lap I can tell she is convinced that he is the real deal!

Happy Feast of St. Nicholas!

today St. Nick brought Lucy some HAIR TIES that JINGLE! Of COURSE Lucy wanted to put them on right away, "look mirror!" and show her sisters. Then she put the 6th ornament on the Advent wall hanging and enjoyed some pancakes made by Libby--who enjoyed a snow day off of school!

Excitement personified

Let me think about it...

Recently Lucy and I had a day in which we "grazed' all day, not eating a proper lunch but still eating quite a bit! Around 2pm, Lucy came up and asked, "Peanut butter sandwich, mom?" I answered, "Let me think about it." Lucy said, "Yes. OK. Think about it. Think. Think. Think." As she said this, Louise briefly crossed her arms, then closed her eyes while she tapped her forehead with her index finger. As she opened her eyes she exclaimed, "Yes! OK! Peanut butter sandwich!"

A blessed Advent!

From the Curt Jester blog, thanks Jeff!

"Bless us, Oh Lord"

I went to the commissary today in preparation for Thanksgiving. The aisles were crowded--within 45 minutes of my arrival every available grocery cart was in use. Lucy sat in the cart seat and was fairly cooperative. She DID kick her crocs off in the first 5 minutes, but I simply plopped them in the cart and sent up a prayer of thanks they didn't come off somewhere else, unnoticed. Lucy DID also contribute a few items to the cart, but I removed them before we paid for them (a large bottle of soy sauce and some chocolate cookie cereal). I had the pleasure of meeting a nice lady who introduced herself and has an 8 year old daughter with Ds, and many others greeted Lucy. It was finally time to unload the cart and I got all the cold stuff on the belt and was reaching for the cereal when I heard Lucy recite the Sign of the Cross in a loud voice from her seat. Surprised, I stopped and looked up to see her bow her head, while mumbling inaudibly, then again cross herself loudly and valiantly attempt to rip open a large bag of peanut butter filled m&m's!

interesting article on Dr. Lejeune, link at bottom of article

Something very unusual happened at a Special Olympics for those with a
learning disability. Two sprinters, both of them suffering from what is
called Down's Syndrome, raced side by side. One of them pulled away, then
suddenly stumbled and fell. His companion stopped, lifted him up, massaged
his knees, embraced him. Together they shared podium honours. Emotion swept
the stands. Spectators had been given a lesson in love.

Down's Syndrome participants focused on one particular spectator. They
smothered him with embraces and kisses. They emblazoned him with their
golds, silvers and bronzes. He was the man who had defended their dignity,
given them a new name and identity, discredited 'mongolism' and 'Down's
Syndrome' with their racist connections. The former term came from the
belief that their physical appearance denoted a link with the inhabitants of
Mongolia. The latter term commemorated the mid-19th century Sir Langdon
Down, apparently a believer in white racial superiortity, who described the
handicap as "mongolian idiocy".

The hero-spectator was Jerome Lejeune. He was born in 1926 in Montrouge,
Hauts de Seine, southwest of Paris. Much of his early education came from
his father, a vet by profession and a man of both a philosophic and
practical bent. Jerome graduated in medicine at the University of Paris. His
hospital experience evoked a compassionate interest in children affected by
mongolism, as it was called. He noted both their 'head' (their limited
intelligence, especially in abstract subjects) and their 'heart' (their
affectionate nature). What had genetics to say about them?

He began a meticulous research. Assisted by Raymond Turpin and Marthe
Gauthier, he focused on chromosomes, the rod-like cell-carriers of genes,
arranged in side-by-side pairs. In 1956 Tjio and Leven had established that
in most human beings each cell had 23 pairs, ie 46 chromosomes. Early in
1959 the 'Paris Three' announced the discovery of a 47th chromosome,
physically identical with the 21st pair, in 'Down's Syndrome' children.

This seminal discovery of 'trisomie 21', as he called it, gave new impetus
to genetics research by Lejeune and others and made the traditional names
with their racist nuance obsolete - though rather regrettably Down's
Syndrome survived in Anglo-Saxon circles. It also gave him a doctorate in
science and an international reputation. He never discovered a way of
preventing the trisomic condition but he did develop treatments that
improved intelligence and actvity. His research extended to thyroid and
amino-acid deficiency.

In Paris he ran a free consultancy (even after it lost state funding). He
became a legend of one-to-one compassion and respect for human dignity to
the parents and children who came there from various countries. He worked
for several years in the US, where he was a member of the American Academy
of Arts and Sciences and received the Kennedy prize from JFK himself.
Genetics also brought him to Russia, Israel, Chile and Japan. (He was much
taken by the Japanese word for 'womb': shi-kiu: 'infant's temple'). He
worked with a UN committee on congenital abnormalities. In 1974 Pope Paul VI
made him a member of the Pontifical Academy of Sciences. In 1982 he was
elected to the French Academy of Moral and Political Sciences.

Along with all this he had a family life deeply and openly imbued with
Christian faith. He was married to Birthe Bringsted, a Dane, whom he had met
in student days. She shared and supported his values and interests. They had
five children. They lived in Paris most of the time but also had a house in
the countryside south of the city. His sojourns there were precious to him
for relaxation, appreciation of life in nature, as well as prayerful and
scientific reflection. This pattern of family faith and fulfilment must
surely have helped him in the war he waged during his later years: the
defence of human life against abortion and other anti-life procedures.

He realised that the great chromosome discovery would be misused in a
'search and destroy' technique for the aborting of trisomic babies. This
danger and his mission to fight it came poignantly home to him when a
tearful trisomic youngster flung himself into his arms and begged him to
defend those like him still unborn. He told his genetics team: "I am going
to undertake the duty of speaking publicly in defence of our sick.If I do
not defend them, I betray them, I renounce what I have de facto become:
their natural advocate."

He was the leading light in establishing the World Federation of Doctors who
Respect Human Life (from conception to death), Chairperson of Laissez-le
Vivres (Let Them Live), President of the Society for the Protection of
Unborn Children. He set up 'The Houses of Tom Thumb' for mothers tempted to
abort because of materially difficult situations. He became a brilliant
defender of human life on platforms, television and radio. Too brilliant for
some; after one television programme, his wife overheard a studio executive
say to a subordinate, "Lejeune? That swine! But what talent! He's too good.
Don't invite him again." Other forms of opposition included threatening
graffiti, harassment of patients and labelling of them as 'monsters' and
disease-carriers, the attempted wrecking of meetings.

What saddened him immensely was the abandonment by so many doctors of their
pro-life oath-bound Hippocratic ethos. At an international medical
conference on health in New York which was favouring the legalisation of
abortion, he did not mince his words: "This Institute of Health in an
Institute of Death." That evening he wrote to his wife: "This afternoon I
lost my Nobel Prize."

He was an adviser and informant of Pope John Paul II on genetics and related
issues. They became real friends; to John Paul he was "Brother Jerome". When
in Rome he was the Pope's guest at table and private morning Mass. He and
his wife lunched with the Pope only hours before the assassination attempt
on 13 May 1981. Later that year John Paul sent him with another scientist to
Moscow to warn the Soviet supremo Brezhnev of the disaster nuclear bombing
would be to the human race.

It is very likely that he influenced the text of 'The Gospel of Life', which
is perhaps John Paul's greatest encyclical. Here and there in the section
about abortion the very strong words of the Pope seem to echo those of
Lejeune in his pro-life crusade: an expression perhaps of the remarkable
convergence of mind that united them in friendship. In 1994 John Paul made
'Brother Jerome' first president of the Pontifical Academy of Life. The Pope
knew that Lejeune was dying of lung cancer. The appointment was a farewell
accolade from one great Christian humanist to another. He was president for
33 days. His 'little ones' were in his mind to the end.

He died on Easter Sunday, 3 April 1994. Many, including the Pope, saw a
'sign' in that this great apostle of life departed on the great feastday of
the Lord of life. Notre Dame de Paris was packed for the funeral Mass. The
officiating bishop read John Paul's message in which the Pope thanked God
for 'Brother Jerome', praised him for all he had done for human life and
dignity, called him an ostracised 'sign of contradiction' in a permissive
society and warned of the organised culture of death that menaced the
unborn, the aged and the sick.

But the speaker who impressed most was the trisomic Bruno who had been one
of the children involved in the famous discovery 35 years previously. He
spoke of Lejeune from the heart and spoke to him as to a friend still
present: "Thank you, Professor Lejeune, for all that you have done for my
father and my mother. Thanks to you, I am proud to be me. Your death has
healed me." It was a testimony that Jerome Lejeune had lived up to what
could be called his 'mission statement'.

"Only one phrase will dictate how we behave: the argument that does not
deceive and that from elsewhere judges all; the very word of Jesus: what you
have done to the least of mine, you have done to me."

Lejeune: the young one: so well-named
Called to protect the very young
Newly-arrived, on the lowest rung
Of the ladder of life and under threat
because they're ill - but don't forget
they are of us. So he proclaimed
in science and faith, in deed and word:
'a human's here, a tiny 'who'
a miracle completely new
a wonder-gift, an infant given
meant like all of us for heaven
a little one loved by the Lord'.

Easter Day, all labour done
Rendezvous with Mary's Son
Once a very little One
Now the Lord of life, says 'Come'.

http://www.theword.ie/cms/publish/article_574.shtml

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A beautiful conversion story

http://www.mommylife.net/

Please take a few minutes to read the conversion story (under the heading WIBAWIB--"where I've been and where I'm bound") of Barbara Curtis. Barbara is a well known Evangelical writer and mother of 12 children--4 of whom have Down syndrome! She has recently made the decision to become Catholic, and gives a beautiful and dramatic account of God's grace at work in her life.
Welcome home, Barbara!

A merry heart doth good like medicine

One endearing aspect of Lucy's development has been her emerging sense of humor. Yesterday as I buckled Lucy into her carseat, I told her, "We are off to run some errands." Lucy answered, "Run, run, run, Mama!" with an amused twinkle in her eye.

Another time as I prepared dinner, I heard Lucy singing her modified version of the old favorite, "Ain't it great to be Crazy" from the living room. Lucy was belting out the words, "Boom, boom, ain't it great to be MAMA!"

And finally, she often finds it amusing to put her hand down on the sofa cushion just before I sit on it to read to her, pause and then burst into giggles that I'm sitting on her hand!

Nanny wanted?

Lucy has been on a big Mary Poppins kick lately, and today she requested a piece of paper and pencil, carefully scribbled all over it, tore it to shreds, and then threw it into the fireplace, gazing wistfully for a while as if she expected the pieces of paper to float up the chimney to Mary herself!

Inclusion in Catholic schools can happen!

'A great blessing' - Student with Down syndrome inspires school

By George P. Matysek Jr.
10/13/2006

The Catholic Review (www.catholicreview.org)

BALTIMORE, Md. (The Catholic Review) - Standing at his locker in a hallway
at Mount St. Joseph High School here, Ben Stevick attracted the kind of
attention that might otherwise be reserved for a quarterback on game day.

Just about every guy who passed through the bustling corridor seemed to call
out to the short-in-stature, 17-year-old sophomore, many of them patting him
on the shoulder and one playfully punching him on the arm and yelling, "Yo,
Ben, my man, what's up!"

The conversation soon turned to that perennial topic at an all-boys school:
girls.

"You ready for the dance tonight?" a student asked.

With a big smile that seemed to engulf his entire face - exposing metal
braces on his teeth, Ben nodded. It would be his first dance, and he had
been practicing his moves.

"Is Theresa going to be there?" he asked haltingly, adjusting a pair of
wire-rimmed glasses. The other guys returned the smile and assured their
sandy-haired friend that his crush would be there, along with plenty of
other girls.

The Friday afternoon scene at Mount St. Joseph from late September could
have played out in any high school in the Archdiocese of Baltimore. What
made it extraordinary is the fact that Ben has Down syndrome, a genetic
disorder that causes mental retardation.

Ben is the first student with Down syndrome to enroll in a Catholic high
school in the archdiocese. His presence at Mount St. Joseph has changed Ben
in significant ways and touched many hearts in the high school community.

There was never any doubt in Ben's mind about where he wanted to go to high
school. Matt, his older brother, had attended Mount St. Joseph, and Ben was
impressed by his big brother's experience.

Ben had attended St. Mary of the Mills School in Laurel, Md., in the
Archdiocese of Washington, and since some of his friends there planned to
attend the Xaverian school up north in Baltimore, there was added incentive
to apply to Mount St. Joseph. When Dick and Doris Stevick approached Barry
Fitzpatrick, principal, about enrolling their son, Fitzpatrick prayed about
it before agreeing to the historic arrangement last year.

Cheryl Hall, a special education teacher who had worked with Ben at St.
Mary, serves as Ben's personal tutor who accompanies him to classes.

Ben takes the same academic courses as his buddies, but they are adapted to
his skill level by Hall. The teachers sometimes work with him one-on-one
after class, and Ben also completes a work study - stocking shelves,
assisting in the gymnasium and doing other tasks that will help prepare him
for later employment.

In three more years, Ben won't receive a diploma when he graduates, but he
will get a certificate of attendance.

"In just one year, his academic skill level has already far surpassed what
we thought he was capable of," said Hall, noting that Ben's intelligence
level tests at about late second grade or early third grade.

While Ben's speech remains difficult to understand, it has improved greatly
over the last 14 months, Hall said. She credits that to the fact that Ben is
daily exposed to conversations from other students, and he's better able to
model his own speech after what he hears.

If Ben had not been accepted into Mount St. Joseph, Hall said he would have
enrolled in a self-contained public school program for children with special
needs. While he probably would have learned practical skills there, Ben
would not have been challenged academically in the way he has at Mount St.
Joseph, she said.

"We don't want to put limits on kids like Ben," Ms. Hall said. "We need to
push them and see how much they can do."

In a recent history course, Ben sat near the front of the class and
studiously highlighted sentences in his textbook that his teacher said were
important. When it was his turn, he read aloud a paragraph about indulgences
and how they helped spark the Protestant Reformation. While the other boys
couldn't understand every word Ben said, there was no smirking as he plodded
through the passage at a careful pace.

Brother James Kelly, president of the school, said it's "a testament to the
caliber of our students" that Ben has been warmly embraced. No one has ever
picked on Ben. Students have instead gone out of their way to help him, he
said.

"I think he inspires them," said Brother James, noting that Mount St. Joseph
is the first Xaverian school in the country to accept a child with Down
syndrome.

"They see him working hard and struggling to learn while some of the others
can be lazy at times," he said. "He's a great blessing to our community."

Brian Abbo, a 15-year-old classmate and Ben's best friend, said students
feel close to Ben because he is a genuine and caring person.

"With Ben, you can't get mad," said Abbo. "He never does anything to hurt
you. He's not going to judge you. He considers everyone his friend."

The biggest challenge to enrolling students like Ben is the financial cost,
according to Brother Kelly. The inclusion program launched with Ben's
enrollment is being funded this year by a grant from the Catholic Coalition
for Special Education. The St. Giles program, named after the patron saint
of people with disabilities, is currently operating on a year-to-year basis
depending on the availability of funding, but Brother Kelly would like to
add another student with special needs next year.

Not every child with disabilities can be accommodated, he said, but there
are those like Ben who would do well if there were enough resources to
enroll them.

For his part, Ben said he loves everything about Mount St. Joseph. He enjoys
being on the swim team, he likes his teachers, and he said he has made many
friends. Asked what his favorite subject is, he unleashed his
characteristically warm smile.

"Chemistry, English, social studies, religion, math and P.E. - and lunch,"
he said.

With his religion teacher sitting by his side, the teen then returned his
attention to a map of the Middle East that outlined ancient rivers, deserts
and biblical jurisdictions. There would be a quiz in his religion class next
week. He had to study.

http://www.catholic.org/hf/teens/story.php?id=21615

An instrument of God

I recently met a woman at church, who looked with amazement at Lucy and asked if she was my daughter. When I said yes, she told me that about a year ago she had been praying in church for discernment about whether she should be open to life again. She told me that suddenly Lucy, (who she had never seen before or again until we met), came up to her where she was kneeling.

Before she could go any further with the story, my new friend's eyes welled with tears, and all she could say in a voice choked with emotion was, "Betty, your daughter is an instrument of God. She is an instrument of God."

when your baby isn't "perfect"...

So many societal attitudes are wrapped up in the idea of the "perfect" baby, and OF COURSE, society tells us, it is understandable that any baby that is "less than perfect" SHOULD be done away with.

Have you ever stopped to think about the messages of perfection we are steeped in everyday?

1) Perfection is attainable and YOU can have it, with enough money of course. You can have the perfect car, house, education, job, looks, and body, and all at the same time.

2) Children can be perfect: cute, smart, athletic, successful, respectful, and hard working.

3) Families can perfect: as a bumper sticker I once saw said, "We are in love and having fun!" Marriage optional, fulfillment possible and sought after as many times as necessary with new partners.

4) Holidays can be perfect: more splendid, more indulgent, more sentimental, more amusing, more, more, more! And all with perfect organization and stress-free, at least somehow, if you can just figure that part out!

What a bunch of crock! Do you know anyone like that? Of course not--it's all just a flattering lie! Jesus and Mary were perfect, and just how well would they fit into the materialistic model of perfection we hear about? What a ridiculous rat race to be trapped in!

The beauty of Lucy is she is living a world apart from those distortions. She accepts herself, and doesn't focus on herself at all. She lives in the present moment with a zest for life. She loves with warmth and all her heart. She is a living witness to the utter shallowness of the materialistic lies. And that is why our very "tolerant" society is murderously intolerant of others like her in the womb.

All Saints Party

Lucy got 2nd place at the All Saints party at church, in her depiction of the young St. Therese! It was so kind of the judges to single out Lucy, shown here with the other winners and our beloved Director of Religious Education who is dressed as St. Bahkita. I can't help but think St. Therese finds Lucy's childlikeness endearing, and her behavior amusing. St. Therese, please intercede for Lucy and all children with Down syndrome!

...that the thoughts of many hearts may be revealed....

Anyone parenting a child with special needs knows that any trip out of the house is likely to "reveal the thoughts of many" about disability issues. Some people ignore, some stare, some turn away abruptly, while others wave, smile or make a point of saying hi.

Recently a friend came up to me saying, "I've been hoping to run into you for SO long!" She went on to tell me about an alternative medicine doctor she knows who can cure cancer, alzheimers, strokes and acne (well, alright, she didn't specifically mention acne!), and then came the clincher: "And he can cure Down syndrome with nutrition, and within 8 weeks the facial characteristics of Down syndrome would be gone, and Lucy would look completely normal!" It is amazing how well-meaning individuals can be completely gullible and insensitive to the feelings of a parent of a child with a disability.

Another friend once told me about Lucy, "You are lucky to have a perpetual baby in the house." I was speechless, but then completely shocked as she went on, "I'm lucky, too, because I also have a perpetual baby in MY house--my miniature poodle." How a devout Catholic trained as a physical therapist could say such a thing defies belief!

Ultimately these attitudes are the result of ignorance and prejudice. Very often the friendliest strangers who approach me tell me that they have family members with Down syndrome. Then I know we are both in on the "secret" of what a fantastic blessing it is to know and love a person with Down syndrome. Soon after Lucy was born another friend told me her daughter was sorry to hear about Lucy's disability. Joyce told me she corrected her daughter, and told her--"No, actually Betty is the lucky one!" Joyce once belonged to a Legion of Mary group where one of the members was a young woman with Down syndrome who was devoted to Our Lady, made rosaries every week and was completely accepted and cherished by the group. Joyce had first hand experience of the disability world, and therefore celebrated Lucy's birth with genuine joy.

While it's true that Simeon told Our Lady a sword would pierce her soul so that the thoughts of many hearts may be revealed, how much greater was the joy the Child Jesus brought her! Sometimes the thoughts of others cause us pain also, but it is far surpassed by the joy and love our children bring us.

Caught in the act!

I spent part of the weekend reading Journal of a Soul, the autobiography of Bl. John XXIII while curled up on the couch under a blanket. Guess who decided it looked like fun to try as well when I got up to fix lunch?

Pilgrimage to the Basilica of the Immaculate Conception

On the Sunday that would have been the Feast of Our Lady of the Rosary, our family made a pilgrimage to the Basilica. We said 2 rosaries on the drive in, attended Mass, and completed most of 2 rosaries on the way home. Although we like to go as a family once or twice a year, this visit was particularly motivated by reading about Our Lady of America, on Leticia's blog, Cause of our Joy.
Lucy loved seeing all the beautiful altars to Our Lady, and particularly enjoyed the echoing acoustics of the huge church. She throughly enjoyed the snack in the cafeteria after Mass, and pretty much hopped, skipped and jumped her way through the entire pilgrimage, much to the amusement of many lookers on...
Here is a sedate shot on the way home that completely belies the reality of the morning!

Special children.... but not always special angels!

My thoughts on discipline are only from my experience with one child with special needs, Lucy. Down syndrome affects every individual differently, so my thoughts are not meant to be applicable across the board. I just offer what has worked for me thus far, and if you have any tips please share them!

When Lucy was born, one fear I had was that I would not know how to handle her. 20 years of experience raising kids had taught me that life was so much more pleasant when the kids were respectful and obedient, and that such behavior doesn't come automatically! Looking at my sweet little baby with Down syndrome I wondered if she would be able to learn to obey, or if my household would become more and more chaotic...

When Lucy was just 4 months old I attended a Down syndrome congress and met a mother whose daughter was already in her 20's. I asked her how she managed the discipline issue, and she said firmly, "treat your daughter EXACTLY like your other children!" Being new to the Down syndrome world I asked, "But will she understand what I'm telling her?" My new friend said emphatically, "She will understand lots more than you think she does!"

I decided to take her words to heart and have high expectations for Lucy, even as I have modified those expectations when needed. I have learned never to argue with her, but I do use consequences: when you put your toys away, you can go to the park. or, it's time to turn off the TV, or you will have to sit on the timeout chair (I use her age in minutes for timeout). Today I told her if she behaved well in the store she would get a necco wafer when we got in the car. I am trying to teach her to walk beside me without me holding her hand; we are starting small but extending the time bit by bit. It has taken many repetitions and reminders, but over time I see progress and I have hope we are on the right path!

This is what worked for us for potty training. I started training her in earnest when she was only 2 and a half, because I had read that if you wait too long the HABIT itself of soiling must be overcome in addition to the potty training. At first we tried stickers, candy, books, toys, cheering etc, and she became more and more resistant to even going into the bathroom, much less producing anything. I was frustrated, and began to wonder whether she even COULD do it. It occurred to me that the one thing she absolutely loved was watching TV. I announced to the family that no TV could be watched in the house until further notice (unless Lucy was out of the room), and brought a DVD player into the bathroom. If Lucy went potty, I immediately turned on some cartoons. After 5 minutes, off went the dvd player, and I gave her more to drink. Half an hour later I asked if she wanted to watch some cartoons, of course she did, but I told her she had to try and go potty first. She was so motivated to watch cartoons she overcame her resistance and cooperated! After 6 weeks she had the idea pretty well, and I let the TV on at other times in the house. Once it became habitual for her to use the bathroom, no more hassles. Thank God!

I hope these ideas might be of use to someone else, but every family needs to learn from experience what each child is capable of. It does take more patience to train a child with special needs, but it is so rewarding when they learn to be part of the family team, as their limitations allow.

Did you want ketchup with that?

Lucy's speech isn't the clearest, but I can usually understand her since I spend so much time with her. It can be a bit more of a challenge for Daddy, who sees her mainly on weekends.
My husband had Lucy at the commissary Friday, and while waiting in line to check out, Lucy looked up and said, "Hug-ie, Daddy". Daddy reached out and embraced her, and said, "I love you, too, sweetie!".
Once more, Lucy said, "Hug-ie, Daddy!" And as daddy embraced her again he thought to himself, what a wonderful child. What other kid of ours has ever been as sweet as Lucy?
A third time Lucy said, "Hug-ie, Daddy!"
As my husband reached out with a smile to hug her once more, Lucy stopped him and said, "NO, Daddy, I HUN-GIE!"
My husband paused for just a moment and suddenly realized what she had been saying: "Oh, Lucy, you're saying you are HUNGRY! (vigorous nods) What do you want to eat?"
"MacDonalds hamburger fries!" came the clearly understood reply!

"The GREATEST grace....

...God can give someone is to send him a trial he cannot bear with his own powers--and then sustain him with his grace so he may endure to the end and be saved." St. Justin Martyr

Consider how this applies to parenting a child with special needs!

Lucy and Shep

Pets have been a positive addition to our family, and good for Lucy! After carrying Lucy for 9 months, laboring in a pitocin-induced labor, enduring a c-section, spending countless hours struggling to overcome her feeding issues, and every waking moment caring for her, Lucy's first word was NOT "mama", but rather, "cat", spoken as the cat strolled by one morning!

the stages of grief

Dr. Elizabeth Kubler-Ross did pioneering work on the stages of grief that people go through after experiencing loss in their lives. Not everyone will go through every stage, nor do people necessarily go through the stages in order. As time goes on, many people revisit some stage or other of grief, particularly when the loss is felt again (for instance at certain age milestones).

Having a child with special needs forces a person to deal with the grief of losing the so called "normal" child one had hoped to have. I see where I have lived through each of these stages, and where I have gotten stuck at times. Here they are, for you to see if they ring true for you too!

Stage 1: Shock and Denial. At this stage a person is numb with the news. "It can't be happening to me!" or "The baby looks normal to me, I can't see the features of Down syndrome".

Stage 2: Anger. This anger is often not directed to the child, but is vented to teachers, doctors, family members, society and ultimately God. (quite frightening and all consuming; people stuck here are not pleasant to be around. Obviously, there are times when a person has to advocate for their child quite firmly; I'm talking about something farther reaching and unreasonable)

Stage 3: Bargaining. If I give my child this, this or this experimental medicine, or do thus, thus or thus intensive treatment or therapy my child with be potty trained and reading by 2 and a half! (this can be very expensive and takes a huge toll of time and effort, guilt often plays a roll.)

Stage 4: Depression. Sadness that my child will NEVER walk, talk, read, have friends, live independently... A sense of isolation and hopelessness. (a sense of giving up, as if nothing will make a difference. No energy to work with the child to help them)

Stage 5: Acceptance. My child is OK just the way he or she is! This happens to be the "stage" where the child is all along! For the child, life, love and family are what is important, not their limitations. This is seeing the big picture. When you can truly pray, "Jesus, I trust you" you are in acceptance. It means, with God's grace, doing what can be done educationally or therapy-wise to support the child grow and mature, but with a sense of peace--loving and valuing the child JUST the way they are, and accepting them as they are.

NPR interview on the L'Arche community

What a beautiful outreach!



http://speakingoffaith.publicradio.org/programs/larche/index.shtml

Be of Good Heart....

...for I have overcome the world! (John 16:33)

It is possible to be of good heart when raising a child with special needs only through Him who overcame the world. And it is not just possible, but it is our duty and a mandate from Christ to be of good heart, placing all our trust in Him! I see the vocation to raise a child with special needs as a call within a call, to use Mother Teresa's words. This special call within the vocation of motherhood, which is an invitation to accompany Christ a bit closer in His Passion, will not be one of doom and gloom when lived with Him and for love of Him.

nurse in the making?

Today I woke up with some back strain, and after mass dh insisted that I lay down with a heating pad for at least half an hour. Such an unexpected sight prompted Lucy to spring into action! Within minutes Lucy covered me with a blanket (being careful to tuck Tigger and Piglet under my arm as well), brought me an open Bible (Psalm 16), set a basket of silk flowers next to me, and then carefully arranged a doily on my head! Although laughter is good medicine, I was careful not to giggle in front of my very diligent caregiver! And by golly, it worked--I'm feeling much better!

Introducing Lucy

What prince could resist this Cinderella? Lucy just turned 5, and is the belle of the ball around here, even without a fairy godmother! Her favorite activities are playing house (especially kitchen), trips to the park, swimming, ballet class and montessori preschool. Oh, and did I mention eating? Especially yummy foods like cookies, ice cream, cake are cause for CELEBRATION when they appear! She is enthusiastic from her first, "good morning, everybody!" of the day to her last, (sleepy by now), "nigh, nigh, mama" of the night. As her Grandma once said, "When you've been hugged by Lucy, you KNOW you've been hugged!"

Sometimes that little something extra....

....makes all the difference!
I hope to share the blessings and challenges and fun of raising a daughter who happens to have that "little something extra" on her 21st pair of chromosomes. I invite you to come along, too!