Book Review: Embracing God's Purpose for My Special Child

Your child is God's tool, His special agent, to make you the person He wants you to be.

Embracing God's Purpose for My Special Child is a very personal and prayerful memoir and "parenting guide" written by Malu Tiongson-Ortiz, a Filipino mom and advocate for Down syndrome in the Philippines. Her 3rd and youngest child, Clarissa, has Down syndrome and is 24 years old this year.

Malu Tiongson-Ortiz's religious (Catholic/ Christian) outlook about her experiences with raising Clarissa makes the perspectives in the book different from any other Down syndrome-related memoir I have read so far. She writes about her experience with receiving the diagnosis, various people she has connected with, financial challenges, health, homeschooling, adolescence, sexuality, and how we are stewards, not owners, of our children. It seems the target readers are Filipinos in the Philippines with references to local resources and the section about wills and legal matters only applies within the Philippines.

Reading a non-US based publication was very interesting for me because it offered glimpses and insights into life with Down syndrome in the Philippines. The awareness levels are somewhat different between the US and the Philippines. For example, it seems that first-people language is advocated here where it may not be (yet) in the Philippines. But that may also be due to language translation or pragmatics. Be forewarned that if you are sensitive and easily offended by terms like "Down syndrome daughter", no matter what the circumstance or context, then this book may not be a good reading choice.

Another example is in the local beliefs and misconceptions (many ridiculous ones) about Down syndrome. One mom thought that kids with Down syndrome were only "born to the rich". The author mentions that many believe Down syndrome is a result of an incestuous marriage or karma or punishment from God.

What is most inspiring is seeing how faith can mold beliefs and parenting styles. And while cultural, religious, and socioeconomic differences may provide varying landscapes for Down syndrome in each country, the common denominator that stands out is how we all want what is best for our child with Down syndrome and that we will go the extra mile, and then some.

God's Purposes
Since the Philippines is the 3rd most populous Catholic country in the world, with 75.5 million Catholics in a little over 90 million total population (fact as of February 2011), it's just natural to expect this memoir to be mainly focused on the author's personal reflections and realizations of how God would want us to raise our children with Down syndrome. And needless to say, the author believes that "No special child is an accident".

There are fascinating, heart-wrenching, and inspiring stories of other children and families whom she had the pleasure of meeting in her journey. She writes about how her faith and character were molded throughout her journey, especially the most trying and difficult times. Her work shows an inner peace and strength in believing that God has a special purpose for each child with special needs in every aspect of life.

Drawing upon her own and others' experiences, she shares her personal reflections of God's purposes. "God gave us our special child...

"...to teach us to seek Him and pray to Him."

"...to mold our character."

"...to understand the value of life."

"...so we may learn to have hope."

"...to teach us to have compassion."

"...to teach us to choose better priorities."

"...to teach us to count our blessings."

The reference to bible verses may alienate non-Catholic/ non-Christian readers who are not familiar with bible content but perhaps they can still find appreciation, inspiration, and encouragement within the stories shared in the book. Or perhaps think of how it would relate to their own religions.

Overall, the author serves up a good dose of honesty and positivity. I enjoyed reading it.

Would you like to read it?
I couldn't find this book on amazon or other US online bookstore. If you are interested in borrowing this book from me, please leave a comment on this post or contact me.

National Geographic Kids & Down Syndrome

Tonight, after a tiring and somewhat frustrating day, I was browsing the National Geographic Kids website for books, pictures, and videos to show Matthew. Several things looked great for Matthew such as the National Geographic Little Kids magazine, some short videos, and real-life photos of animals and nature. Matthew owns "Safari" from the Kids Readers books and likes it. Maybe it was time to get more titles from this series.

One little gem of inspiration (and Down syndrome advocacy) was in the News-People & Places section. I Have Down Syndrome--Know Me Before You Judge Me by Melissa Riggio. I absolutely loved what she wrote at the end about not able to change the fact that she has Down syndrome, but how she would change how people think of her. She also wrote, "Treat me with respect, and accept me for who I am. Most important, just be my friend. After all, I would do the same for you."

After reading her piece, I continued to browse the site for fun stuff for Matthew. But this time, with a smiling heart.

Everybody Loves Reece's Rainbow

Reece's Rainbow is the connection for orphans with Down syndrome all around the world to find forever families.

An American family. Possibly the forever family of a 4-year old boy with Down syndrome from Russia. His name is Kirill. Everything was looking good until the Russian judge ruled against their application. The basis: Kirill was "not socially adaptable due to his medical condition." The judge would not approve the adoption only because Kirill has Down syndrome, saying that "he was better off in an institution than in a home with a family." It is absolutely heartbreaking. Read Kirill's story.

Kirill's story has spread like wildfire. Actress Patricia Heaton (in the tv series Everybody Loves Raymond) is responding to Kirill's story by supporting Reece's Rainbow. Read her Reece's Rainbow note on facebook.
She is donating $1 for every Reece's Rainbow follower on Twitter up to $10K.

Please show your support and help raise funds and awareness for orphans with Down syndrome. Simply follow @ReecesRainbow on Twitter.

Dancer With Down Syndrome

Another highly inspiring story this week is about Nicole Smith. She's more graceful than a swan on the ballroom dance floor and yes, she has Down syndrome. It makes me wonder what Matthew's passion will be.

Excerpts from the article:

Doctors told Diane and Mike Smith that their daughter would probably never walk, talk, read, or dance.

Nicole was six-years-old when her parents noticed her love for music, so they enrolled her in a dance class.

“I realized how talented she was right from the beginning and we got through so much material in her first few lessons that we started to work on shows almost right away,” says her instructor and partner Pabaka.

“It takes her twice as long and twice the effort to be able to do what she does and she pushes through all of that,” says Diane.

Read the full article and watch the video to be inspired.

Kindermusik Teacher with Down Syndrome

The latest inspiring news I have seen today is about a teacher in Columbia, South Carolina. Her name is Bryann Burgerss. She is 22 years old and has Down syndrome. If she were in our area, I want Matthew and Elizabeth to be in her Kindermusik class!

Excerpts from the article:

Something that many would see as a difficulty, she turned into an inspiration.

Bryann brings something invaluable to her students.

"I always tried hard, and I always did my best. No matter what happens, I just keep on going and dust myself off."

Bryann is proof that with hard work, and a positive attitude, you can do anything.

Read the full article and watch the short video and be inspired.

Why Us?

Why me? Why us? These questions nagged me when waiting for Matthew's chromosome test results after his birth. "I'm not strong enough to handle this," I recall saying in my distressed emotional state. "You'll find the strength," my oldest sister-in-law gently reassured me. It sounded promising. But how?

Without fully realizing it at the time, my family was my strength during the wait and the first few months that followed. I listened to everything positive and leaned on them because all I had was doubt. God doesn't make mistakes. God has a plan which may not be known at the present time. God will reveal it through time.

Over time, the doubt went away. In it's place was strength, as promised. I found it from loving Matthew and caring for him with every breath and wanting only what was best for him. I found it in Bill. I found it in the encouragement offered from extended family. I found it in supportive old friends. I found it within the large network of families who have kids with Down syndrome. That's how I found strength.

Today, a facebook friend posted inspiring words that ring so true for me. I consider it the answer to my "Why me? Why us?" questions.

‎"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."

Sharing Our Gift From God

My aunt once told me that Matthew would touch and inspire many lives in his lifetime. She said this a few days after he was born when we were trying to comprehend how Down syndrome would affect his life and ours.

A few weeks ago, the features writer of our local newspaper contacted me interested in writing about my blog and Matthew. I was nervous and excited at the same time about the idea of being featured in the paper: nervous about answering questions and not knowing how the article was going to turn out and excited about this being an opportunity to raise awareness about Down syndrome in our community.

The article Sharing Her 'Gift from God' With the World was in the August 27-29, 2010 weekend paper. I was expecting a short article but was happily surprised with a full front page article in the features section. It is such a well-written and inspiring piece of work, as many people we meet in town and online have commented.

I love her perspective of my blog. I never thought of it like the way she put it, which is 'sharing my gift from God with the world'. It is what I'm doing though, just as fellow bloggers who have kids with Down syndrome are doing. There have been many others before me and there will be many others yet to be born into this world and into blogland.

It is one of the ways to advocate for our children with Down syndrome - showing how kids with Down syndrome make us smile, worry, cry and laugh, just like any other child would and showing how kids with Down syndrome learn, grow and develop, just as uniquely as any other child would.

It's a way to connect with other parents who are on a similar lifelong journey as us. It could be the source of inspiration and strength for a mother-to-be with a prenatal diagnosis of Down syndrome or for new parents of a child with Down syndrome.

It is one of the ways that Matthew will touch and inspire many lives, just as my aunt had known all along.

Book Review: Gifts - Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

Gifts is undeniably one of the books I treasure. It is a compilation of heartfelt essays well-written by mothers who have children with Down syndrome. Each mother tells a unique story yet all of the essays have that element of sameness, reflecting on the initial overwhelming emotional pain, sadness, loss, guilt, confusion and realizing the blessings, unconditional love, and joys of their experience in caring for and raising a child with Down syndrome.

Soon after Matthew was born, we were looking for good books about Down syndrome but all we could find were ones that talked about the medical conditions associated with Down syndrome. We were tired and stressed from reading such books at the time. They only overwhelmed me with worries about Matthew's unknown future. Receiving Gifts from my mother-in-law was one of the best gifts ever. Reading Gifts helped me sort out the feelings I had about this new world I suddenly found myself in. Every story struck a chord with me. I couldn't hold back the tears with each story I read, kleenex in hand. It was good to feel and know that I wasn't alone.

I loved this book so much that I sent one to a friend who had given birth to a daughter who had Down syndrome 2 weeks after I had Matthew. I also left 2 copies at my OB's office for them to share with expectant or new moms who have a child with Down syndrome. When the editor, Kathryn Lynard Soper, was calling for essays for the follow-up book "Gifts 2", I encouraged my sister-in-law to submit an essay. We were ecstatic when her essay was accepted.

I highly recommend Gifts to all mothers who are expecting or have a child with Down syndrome and need to know that they are not alone in their new journey. A definite must-read!

Have you read it? What do you think?


Related posts:
Gifts 2
Mi Casa Es Su Casa (My Home is Your Home

We're Keeping Him

Written by Grandma Margie in 2008, a year after Matthew's birth. This is a story about the day Matthew was born. It was originally published on a website called Lives Touched By Down Syndrome but it seems the website no longer exists. With permission, I am sharing it here.

One of my favorite jokes is about a man who's stuck on top of his house, surrounded by quickly rising floodwater. Two boats and a helicopter come to rescue him, but he waves them away saying, "I'll put my faith in the Lord. He'll save me."

The muddy water swallows the man and a few minutes later he stomps up to the gates of heaven and yells at God. "I put my faith in you and you let me drown."

"No, I didn't," answered God. "I sent two boats and a helicopter to get you."

As a person who has struggled with faith and religion most of her life, I believe, after much reluctance, that this is true. People have come to my rescue many times during my life, and more often than not, I didn't even know that I needed help.

On the morning before my seventh grandchild was born, I drove my daughter-in-law, Ria to her doctor's appointment. An ultrasound showed that the embryonic fluid was low so we headed to the hospital. I suggested an early lunch, but my normally famished daughter-in-law was too excited and had eaten a late breakfast. The doctor and staff at the Woman's Center were in a tizzy over our unannounced arrival, but did another ultra sound anyway.

"Here's his heart," said the technician pointing at the screen. "It looks great, a good strong heartbeat. Everything looks good except the fluid is low. I don't think you'll be going home."

I took pictures with my iPhone while Ria called my son, Bill, and told him the exciting news. Bill and Ria met in Melbourne, Australia while they were graduate students at Monash University. Bill attended for six months during an exchange program. Ria graduated with a master's degree in International Business and Bill finished his MBA at the University of Missouri. It's a romantic story filled with lasting love, commitment, and determination.

After Bill arrived carrying numerous bags, I walked to the hospital café for a late lunch. It was crowded so I sat at a counter that faced a courtyard filled with flowers. A few minutes later, an older woman dressed in a rust-colored suit sat next to me. After exchanging pleasantries, she said her husband had surgery yesterday, he was doing well, and they hoped he would go home tomorrow.

When I told her my story, she smiled and said that she was envious. Her oldest daughter had given them two wonderful grandchildren, but her younger daughter and her husband had decided not to have children. "Our son has Down syndrome," she said matter-of-factly, "and she's worried that she'll have a baby with special needs."

I didn't know what to say, so I acknowledged her words with a friendly nod. I was surprised by her candor, but not uncomfortable. For as long as I can remember, people have confided in me.

"Our daughter loves her brother," she explained, "but she doesn't think that she can take care of someone with special needs. I'm sorry she feels that way because her life would be so much richer for it. Our son has added so much joy and love to our lives. Taking care of him wasn't difficult; all he needed was love. That's what we all want, isn't it? We just want to be loved. I have no regrets but I'm afraid my daughter will someday." She shrugged her shoulders, "But it's her choice and we stand by her."

"How's your son doing?" I asked, fascinated by her story and insights.

"He's all grown up," she said proudly, "a fine young man. He has a great life. He lives in a group home, has a job he likes, and so many friends. We visit him, he visits us, and we talk almost every day."

I felt a mixture of awe and uncertainty as I tossed my trash. I'm not a superstitious person and I wasn't afraid of Down syndrome, but I was worried about the unknown. Medical science has removed most of the dangers of childbirth but not all. I didn't tell Bill and Ria about my conversation in the café when I returned to their room. I wished them luck, kissed them goodbye, and drove home.

A phone call from Bill summoned me to the birthing room early the next morning and I arrived shortly after our baby was born. I watched with pride and excitement while the nurses suctioned and cleaned our new grandson and gasped when he stopped breathing. A nurse suctioned him three or four more times. "Breathe," she told him. "Yes, that's better." Satisfied, she diapered and swaddled him into a neat little bundle and gave him to his happy mother. His cry wasn't as loud as other newborns I'd heard and I thought his breathing was too soft, but dismissed my concerns. The nurses were happy and I should be happy too.

I accompanied Bill as he carried his son to be officially weighed and measured, then walked back to the room and watched as our baby successfully nursed for the first time. I was thrilled when a nurse took him to the nursery. I was still worried about his breathing and knew that they would check his air passages for mucus again. The phone rang a few minutes later. Did they have a pediatrician? Yes, but in Washington, an hour away. Would it be okay for the resident doctor to take care of him while he was in the hospital? Yes, of course.

We were concerned but continued chatting, the three of us still brimming with excitement until a nurse walked into the room. In a soft, professional but reassuring voice, she told us that our baby wasn't as pink as they wanted so they moved him to the special nursery where he could be monitored more closely. The pediatrician was examining him and would talk to us soon.

When the doctor arrived at Ria's room, he seemed a little shocked when he saw Ria, but didn't comment. He smiled briefly, introduced himself, and dropped his bomb without warning.

"I believe your baby has Down syndrome," he began. "He has pulmonary hypertension, which means his lungs aren't working as well as they should. His lungs could be underdeveloped or something more serious. We've called in a pediatric pulmonary specialist to examine him. Meanwhile, we're giving him oxygen, that's the treatment for this condition, and he's responding well. If he keeps improving we'll decrease the oxygen and see how he does. Pulmonary hypertension occurs occasionally in all babies, but it's more common in babies with Down syndrome and that made us take a closer look. Your son has a single crease in his hands and his big toe and second toe have greater separation. His body is thicker near his neck, especially his upper back, and he's having trouble maintaining his body temperature. All indications of Down syndrome. Didn't you have any tests while you were pregnant?"

Bill and Ria stared at him in disbelief and shook their heads. "We're young," Ria said quietly. "We didn't think it was necessary."

"Well," he said, impatiently, "I would certainly suggest genetic testing before you have more children. Does anyone in your families have Down syndrome?"

We shook our heads, unable to speak.

His expression softened and he seemed a little chagrined by his harsh words. "I guess I've gotten a little ahead of myself. I know I've dropped a bomb on you, one that you obviously weren't expecting, and I understand your shock. I also understand the impact this has on you and your baby."

He stopped again and I hoped he was finished. I wanted him to shut up and leave us alone, but he didn't leave. He gave Ria a quick smile and asked another jarring question. "May I ask your nationality?"

Her voice was soft but clear, "Filipino."

"Well, that's fine, I was just curious. I would be remiss if I didn't send this to the lab. The results will be back in about four days." He looked at us, waiting for questions.

"Send what?" I asked.

He seemed shocked by my ignorance. "A blood sample." He handed Bill and Ria a pen and a permission form and looked pleased when they signed it. "The lab will do a chromosome test."

When the doctor was finally gone, Bill held Ria as she sobbed and he struggled to be strong. "He must be right," she said quietly, "but how did this happen? Everything looked perfect on the ultra sound."

I sat on the bed hugging them. "We don't have enough information," I said. "Let's wait for the results of the test. Meanwhile we'll take care of him and love him. All a baby really needs is love and we have lots of love in our family. He belongs to us and we're glad he's here. We're keeping him."

A nurse rushed into the room with a wheelchair. "I'll take you to see your baby," she said, smiling. "He's a cutie."

As we stood looking at our little guy now dressed in a diaper and hooked up to oxygen and other things, I fell in love and silently thanked the loving woman who had given me the right words to say. All a baby needs is love. We all just want to be loved.

Matthew left the hospital two days after we were given the official news from a doctor who was gentle and kind. Matthew delights us with his easy smile and giggle, his eagerness to learn, his quiet determination, and keen interest in people. His parents do exercises with him every day—affectionately called "Baby Boot Camp"—and he's strong and healthy. His birth opened a floodgate of powerful emotions, feelings too often swept underground by our busy, hectic lives. We became closer as a family and worked out some differences that had crept in, almost unnoticed. We called it the "Matthew Factor" and we're happy he helped us move ahead. Our world is bigger now. A deeper love and purpose thumps louder in our hearts.

I still marvel at meeting that wise, wonderful woman and wish I could thank her. She gave me a glimpse of her son's life and said that his life was good. She told me he was happy, well loved, and added much joy and love to his family. He was a good addition to our world. She had no regrets and neither do we. To love and be loved is the greatest gift of all. An angel rescued me and I'm forever thankful.

Maddy Curtis on American Idol

I don't follow American Idol so I'm a little late sharing this. The show recently caught my interest when I learned that one of the contestants for Season 9 is Maddy Curtis. She has 4 brothers with Down syndrome. I don't know her and her family personally, besides following her mom's (Barbara Curtis) blog, Mommy Life, but I think it is because of her 4 brothers who have Down syndrome that I feel somewhat connected. Maybe I'm just weird but ever since Matthew was born, I've felt a mysterious bond to other families who have kids with special needs, more particularly with Down syndrome. It's a bond that offers a certain level of familiarity and understanding that one can only gain through walking in the same shoes as the other family.

Matthew and I are also included in Barbara Curtis' photo album "Our Little Extras", which is on my blog's sidebar.

I was one of the recipients of Barbara Curtis' email with the video link to Maddy's audition. I watched it with Matthew on my lap. Matthew, my music lover, agrees that Maddy has a soothing, soulful voice. He signed "more" after watching Maddy sing the first time. I lost count but I think we watched the video at least 7 times as Matthew insistently signed "more" every time. She definitely has my vote because of her talent. The fact that she has brothers with Down syndrome is a plus.

Book Review: Gifts 2

It has arrived! Gifts 2, edited by Kathryn Lynard Soper, is a treasure full of inspiration whose writers share their personal stories of how people with Down syndrome have enriched the world through Acceptance, Awareness, Friendship, Courage, and Joy.

I have only read a few stories to-date, but so far this book gets the two-thumbs up from me. I must proudly add that my sister-in-law, Kristin Enkvetchakul, contributed an essay titled "They Changed the World". Needless to say, we're very excited that she and Matthew are in the book.

I also love the fact that I know several of the contributing authors through their blogs, making this book more personal to me. Their heartfelt stories are simply soul-touching. I expected nothing less of course.

Overall, I'd say the book is well done labor of love. Great lively cover. Wonderful, inspiring stories. Excellent photos for each story. Edited with love. This is another must-have for people who know and love someone with Down syndrome.

Have you read it? What do you think?

Book Review: Common Threads - Celebrating Life with Down Syndrome

Compiled and written by Cynthia S. Kidder and Brian Skotko.

The title says it all.

A beautiful book of inspiring essays and snippets of experiences with and about individuals with Down syndrome. Each story is well-written and guaranteed to deeply touch your heart and soul. The photography by Kendra Dew is simply outstanding. Each photo in the book beautifully captures the emotions of its subjects, leaving me in awe at every page turn.

Little tidbits of interesting information gathered through Band of Angels press surveys are interspersed throughout the book. Here are some excerpts of the surveys:

"1 out of every 5 children with Down syndrome plays a musical instrument. For children older than 10, that number doubles."

"Approximately 7 out of 10 individuals with Down syndrome imitate characters from a television program or movie."

"2 out of every 3 individuals with Down syndrome older than 10 prepare their own breakfast each morning."

"One out of every 5 adults with Down syndrome (18 years or older) lives on his or her own."

This book a must-read, must-have for families who love someone with Down syndrome. I had ours on our coffee table when Matthew was a baby as I thought it was a perfect coffee table book...until Matthew started cruising. He inadvertently tore part of the cover. The book is now safe on my bookshelf. I think it will find it's way back to the coffee table when Matthew is much older.

Have you read it? What do you think?

Upcoming Book Release: Gifts 2

My sister-in-law, Kristin Enkvetchakul, is a contributing author in Gifts 2. The book is due for release in September 2009. Pre-orders are currently being accepted at Amazon and Woodbine House.

Do you know anyone else that's in the book?

What's in Gifts 2?
(text from the Woodbine House website)
Acceptance, courage, friendship, awareness, and joy--these are the gifts recounted in more than seventy inspirational essays included in Gifts 2. Edited by Kathryn Lynard Soper, the follow-up to the bestselling Gifts presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.

Like the previous book, Gifts 2 helps us see that the hopes and dreams family and friends have for a child with Down syndrome are similar to the ones we have for any child. And, more often than not, expectations are fulfilled--if not always the way we anticipated they would be. A grandparent, inspired by his grandson's strong will, discovers the ability to persevere and not give up on a job. A brother who assumed he would be the person helping his sibling with Down syndrome describes how often it is the other way around. A young teacher remembers her first student with Down syndrome and it gives her strength and clarity when she is faced with her own child's diagnosis.

This heartfelt collection is a source of comfort to other families, and offers insight to anyone who wonders how people with Down syndrome live today. Give the ultimate gift, share both volumes with family and friends, your child's teacher or pediatrician--help raise public awareness and provide others a point-of-view they might otherwise miss.

Book Review: Colin Gets A Chance

Written by Brian A. Beale in honor of his son, Colin Beale. This inspirational children's book about a little boy, who has Down syndrome, has a simple storyline bearing a significant message about acceptance and inclusion. The story is written in rhyme, making it extra enjoyable to read.

Colin has always cheered for his baseball team from the bench and is finally given a chance to bat in the last game of the season at the insistence of his teammates. I found myself smiling and cheering for him in my head, especially toward the end of the book.

The book cover and all illustrations were drawn by individuals with Down syndrome. That in itself is a powerful example of inclusion of individuals who appear different on the surface, but have so much to offer to society once given a chance.

The author actively advocates for his son using this book. In an email to me he says, "It really is the perfect children’s book to help parents and teachers open up the lines of communication about Down syndrome, acceptance, and inclusion. I’ve spoken to many different schools from first through eighth grade and it’s been great using my children’s book to teach the kids about acceptance and inclusion." I quietly wish that someday I have the opportunity (and courage to speak publicly) to proactively advocate for Matthew too.

I'm so glad I bought this book. Have you read it? Would you give this book a chance?

Book Review: Windows into Heaven - Stories Celebrating Down Syndrome

I borrowed this book from the Down Syndrome Association of Greater St. Louis (DSAGSL) since our local library did not have it. Edited and published by Stacy and Michelle Tetschner, it is packed with positively uplifting experiences from families and individuals who have a child, grandchild, friend, or acquaintance with Down syndrome. As described on their website, "Windows Into Heaven is a collection of stories of inspiration, love, and acceptance from those families and individuals who have been positively touched by Down Syndrome."

Every single story in this book moved me to tears - joyful tears. I reminisced and empathized with some stories about how the family's journey began. I reflected on how much Matthew, who is only less than 2 years old, is already touching the lives of family and friends, near and far. I daydreamed about the possibilities in our future and where our journey with Matthew would take us.

I'll be recommending this book to our local library. I've also added it to my wishlist to own someday. In my opinion, the book is a great positive resource for parents beginning their journey, for families already on this road less travelled, for relatives and friends travelling alongside of them, and for people we may meet along the way.

Have you read it? What do you think?

Mother's Day Inspiration: The Special Mother

HAPPY MOTHER'S DAY!

I read this at Circle of Moms and thought that this beautiful story should be read by every mother of a child with special needs. It's a wonderful piece written by Erma Bombeck. You may need a kleenex or if you can get highly emotional like me, a super absorbent chamois may be better. Some of you may have already read this, but I'm sure it won't hurt to read it again. I've also added the story to my "Hot Chocolate for the Soul" list on my sidebar.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Mother of the Year 2009

Words from a friend and fellow mom who has a child with Down syndrome:

As parents of kids with special needs, we don't want our kids to be behind. We don't want them to suffer. We don't want to suffer ourselves. We want everyone to see the incredible potential that our child possesses! We don't want to be looked at with "I'm so sorry..." eyes. We are PROUD of everything our child has accomplished...and with good reason!

These words gave me more strength to forge ahead and do everything I can to enable him to be the best he can be. Only God knows Matthew's true potential and my job is to help him maximize everything he has been given so he can live a much more "typical" life with a wider range of choices than if I didn't put in the extra work required when raising a child with special needs.

Mother's Day is a few days away and apparently I was nominated Mother of the Year in 2009 - and WON! I made headlines everywhere and didn't even know it. (I'm having a hard time keeping a straight face as I write this). Just think, YOU are reading the blog of the woman who outshined Angelina Jolie. Don't believe me? Since I live in the Show-Me state (Missouri), I feel obliged to do just that. Here's proof. Click on the link below and watch the video that one of my aunts in the Philippines sent to me.

Mother of the Year 2009 video

Happy Mother's Day to all you supermoms!

Remember You're Unique, Just Like Everyone Else

My title is borrowed from an email my mom had forwarded to me. It was a list of zen teachings, which I found rather humorous, and the one that stuck to me was "Remember you're unique, just like everyone else". I think it's because I am relating it to much of the literature about Down syndrome for new parents, which is so much better these days than it was 10, 20 and more years ago. Sadly, many years ago, the message to new parents of babies with Down syndrome was "Put your baby in an institution and forget about him." Today, in most places, the message to new parents is "Congratulations! Take him home, get to know him and love him, as all babies deserve. You are about to embark on an amazing journey." To this day, advocates for Down syndrome continue efforts to replace outdated information that OB-Gyns and pediatricians may have. (Thank you!!)

When Bill and I had first found out that Matthew had Down syndrome, I remember how we were both overwhelmed with uncertainty and fear. It was our unpreparedness and the lack of knowledge about our new set of circumstances that caused our initial grief. How different would our lives be? How would society treat us? What was Matthew's future going to be like, what with the seemingly endless list of potential health issues that he would be predispositioned to because of Down syndrome?

That was less than 2 years ago, and today I see how having Matthew in our lives has opened many doors, opportunities and experiences. We still worry about Matthew's future, but what parent doesn't worry about their child/children's futures? My friend, Amy, emailed me recently and I love how she summed up everything she has read so far about babies with Down syndrome. She said,

"Abilities and issues vary so widely, just like for babies without DS, so the bottom line for us all is that we need to learn who our babies are as individuals – what a colossal challenge!"

Matthew has some of Bill's traits and some of mine, and even some of his grandparents'. He has Bill's hairstyle, my hair color, Bill's wide feet, my short fingers, Bill's face shape, my nose and eyes. He has our stubborn streak and silent determination. He looks like my dad when he's asleep. He has the simian crease on the palms of his hands, which is typical trait for people with Down syndrome, but Bill's dad has it too on both hands. (A simian crease is a single line that runs across the palm of the hand. People normally have three creases in their palms). Matthew is really more like other typical kids than unlike them. He will walk and talk, go to school, make friends, hold a job, and add richness to many people's lives. He is no different than you or I, yet he is a unique individual... just like everyone else.

The Creed of Babies with Down Syndrome

(Author unknown)
My face may be different

But my feelings the same

I laugh and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As God in the heavens

Looks down from above

To Him I'm no different

His love knows no bounds

It's those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I've chosen

Will help me get started

For I'm one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It must come from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I'll do it as you do

But at my own pace

End the R-Word

About a month ago, my dad sent me an email about a website he found where people are pledging to eliminate the use of the r-word. Of course, I immediately took action and submitted my pledge. Today, in my online search to expand my social network in relation to down syndrome, I came across a wonderful post on another blog On a Joyful Journey: Spreading the Word to End the Word. I am particularly deeply moved by the personal message from John C. McGinley (an actor and star on the TV show "Scrubs") and the youtube video of an interview with him. So I'd like to share the video with you.