Tuesday, November 30, 2010

Thankful That We Are Not Alone - Guest #18

Please let me introduce my final guest for the Thankful That We Are Not Alone project. Guest #18 is Heather, a friend from church. Her daughter Gabi is the star of one of my 31 for 21 entries. She is also one of the reasons God nudged me into doing this blog. Enjoy!

"Before my first visit to the doctor with all three of my pregnancies I worried about miscarriage. I never worried about anything being "wrong" with the baby. For some reason I had the "that would never happen to me" mindset. I didn't think I was the kind of person that could have a special needs child. Apparently, God knows me better than I know myself.

At my first appointment with my third child they did an ultrasound and noticed that there was a thickness in the nuchal fold. When I heard the words "Down Syndrome" I couldn't believe what I was hearing. Again I thought to myself "that would never happen to me." I was sent to a high risk doctor and given a 2% chance. My mind was at ease thinking the odds were in my favor. Then I remembered something. The week I had found out I was pregnant I was working at VBS. One morning we were in the music room and a little girl in front of me turned around and wrapped her arms around me, looked up at me and smiled. I remember hugging her back and smiling too. I believe that smile stayed for a while. That little girl was Tiffany's daughter Elise. The moment I remembered that happening I felt a chill and that was the moment I realized that 2% chance was 100%. I realized that she knew before I did, before I even knew I was pregnant. I will never forget Elise's hug. I will also never forget Tiffany who was a stranger to me at the time but still was so warm and caring once my baby was born. She has gotten me through some rough patches and made me realize I wasn't alone.

My baby girl, Gabi is now almost 10 months old. She is the sweetest baby. She is such a good baby. She has the best smile. When she smiles, her whole face smiles, starting with her eyes. Her smile is contagious. She is doing very well. Her therapists go on about how strong she is and her doctors are amazed at how vocal she is. Good thing I named her Gabi! ;)

I don't know what the future will bring. I know this is the easy part and the harder part is yet to come. I also know my rough patches are far from over. I still have my moments and I'm sure I always will. But I know it will all be worth it, just for Gabi's smiles."

Monday, November 29, 2010

Thankful That We Are Not Alone - Guest # 17

I am In Love with the blog Life.Rearranged. Jeannett almost always has something I can relate to or something challenging and timely. If you have checked out NONE of the blogs I've linked...you MUST look up this one. I am so proud to have her on!!

"Tiffany asked me to guest post for her...the topic: anything I wanted.

How's that for freedom?! :)

I drafted posts in my head, mulled them over, and the one I kept coming back to was the idea of how having a child with different needs is so much more than the physical therapy appointments, the doctor visits, the special exercises, the daily medicines...in fact, most times, when I think of my sweet JillyBean, those are the LAST things that come to mind.

The thought that comes to mind first and foremost is always how stinking lucky I am.

Crazy, right?
Don't get me wrong...I am no super mom. Nor am I a Pollyanna who sees everything through rose colored glasses.

We have bad days. I get overwhelmed. And sometimes, if I'm honest, I get a little jealous. Wondering what it would be like to not have all the extras that come along with my little blonde fairy.

But more than the bad days...I find myself thanking God from the highest mountaintops for delivering to me my sweet Jilly.

Yes, I am lucky because it could be worse.

Yes, I am lucky because she is progressing well.

Yes, I am lucky because there are others worse off.

But that's not why I consider myself lucky.

I consider myself lucky because Jill saved me from myself.

Jill has taught me to see the world in an utterly and completely different way.

I love more.

I am more compassionate.

I am a better friend.

My heart has been broken into a million pieces...

a painful process to be sure......

almost unbearable somedays...

but when it was put back together...

it was made into a fuller version of its former self.

I still have a long way to go. I will always be a work in progress.
I don't know that God will ever be done with me.

But as only other parents of special needs children truly understand:

We are the lucky ones."

Friday, November 26, 2010

Thankful That We Are Not Alone - Guest #16

This lovely lady requested to be involved in the Thanksgiving Project and after reading her blog, I was ever so pleased to say yes. I highly recommend running over to Garden of My Heart and seeing what else the talented Melissa has to say!

Please welcome Melissa:

"I stumbled upon this blog and this Thankful That We Are Not Alone Project when one of the entries was discussed elsewhere on the internet. I was surprised at the negative reaction and it really had me thinking about the authenticity, truth, and the Down Syndrome community.

In the short 6 months since I've had my daughter, I have struggled with how best to share our story. On the one hand, I feel pressure to show how normal my life has been despite Down Syndrome. Our kiddos have a hard enough time with acceptance in this world due to the fears and misinformation out there about Down Syndrome, and I genuinely feel sometimes, that if I say one negative word about it, I only perpetuate the stereotypes and make things harder for my daughter. On the other hand, I feel that it is not genuine to constantly spout rainbows and butterflies about my life. I feel that it somehow lessens my experience and that of others to leave out some of the difficult aspects of this diagnosis.

I wonder how many mommas out there feel the way I do? I know part of this is a function of my newness to it all. I have yet to fully develop my voice and I have yet to fully develop any definite feeling about what Down Syndrome means to me as a mom or even just a human being. All I know for sure is I love my daughter through and through.

I have come to realize that authenticity is the greatest thing I can bring to the table, both for my daughter and the Down Syndrome community. With any diagnosis, with any kind of life there will be peaks and valleys. The lessons we learn in the valleys make the peaks that much more amazing. To be honest about the valleys is to recognize them for what they are, work through them, and come out on the other side a stronger momma, person, and advocate.

To hide those valleys for fear of painting a negative image of Down Syndrome is counterproductive. They are nothing to be ashamed of or the shy away from. They are just are. Authenticity and honesty in this respect, I feel, brings the Down Syndrome community closer together. We can learn from each other in our stories of acceptance, or lack of acceptance, in our stories of outright joy over our children's accomplishments or despair at their struggles. All voices and all stories are important.

All stories need to be accepted for what they are - glimpses into someone's life, an opportunity to learn from that experience, a chance to celebrate or lift someone up on a difficult day. Judgement, need not apply. We may not agree with someone's approach and we may even be hurt by the words they have chosen but we need to allow room for authentic voice and the truth in our stories.

In that spirit of authenticity, I want to share where I am today. This is how I truly feel, no filter for how someone may take it.

I love my daughter. At 6 months old, I swear she already has a sense of humor. She knows her momma and daddy. I love that I know exactly what will make her smile. I love that I know the difference between her various coos, babbles, and cries. She has the biggest blue eyes and, surprisingly, beautiful orange hair. She handled her open heart surgery like a champion and can do tummy time like nobody's business. I have days that are all rainbows and sunshine. I have days when the words "Down Syndrome" don't leave my lips. I have days I laugh so hard my face aches the next day and my heart feels like it may very well burst from joy at this precious life in my hands.

But...I struggle with the fact that she still has an NG tube. I am sad that my child started speech and physical therapies at just 6 weeks old. I worry about her future and I selfishly worry about mine. I have times when I despair. I have days when I am mad at Down Syndrome, sad at Down Syndrome, frustrated with Down Syndrome. I accept that my daughter has Down Syndrome, but that doesn't mean that I need to like it.

My biggest struggle right now is the concept of "they" - anytime I read or hear anything along the lines of "people with Down Syndrome are so nice"(sweet lovable, etc) I feel a twinge of sadness. You can't say that about any other group of people without being slammed for stereotyping. Imagine walking up to someone and saying, "My cousin is white! All white people are so nice!" It just wouldn't fly. Yet it appears to be completely acceptable within and about the Down Syndrome community. It is hard to think that my daughter's personality is already somewhat predetermined, or at least if she falls into any of these stereotypes it will not be attributed to her individuality or my parenting, but that she has this extra chromosome so her kindness must be some foregone conclusion.

So that, in a nutshell, is where I am. I hope that someone reads this blog entry and understands exactly how I feel. I hope that someone reads it and disagrees completely, but takes something from this point of view.

In the future, I look forward to reading more and more about life with Down Syndrome - the good and the bad. I look forward to adding my voice to the mix and I hope it brings comfort to at least one person to know that they are not alone in their thoughts and feelings. I am thankful that I am not alone in this."

Wednesday, November 24, 2010

Thankful That We Are Not Alone - Guest #15

This is a bloggy friend of mine. I have enjoyed her blog for a while now and have gotten to meet her on Facebook, too. We've been chatting back and forth for a while and just recently I discovered that she wrote a short story submission for Gifts. Which I adore and often recommend to new parents. I felt like I had met a celebrity all of a sudden. I got all aflutter... :)

Please welcome the only "celebrity" I know, Deborah Minner of Sunflower Stories.

"Goodland, Kansas, population 4,948, is the county seat of Sherman County in Northwestern Kansas. The town is just 4.4 square miles big. It sits just 17 miles from the Colorado border, but is 176 miles from Denver, the nearest major city. The closest major city on the Kansas side is Hays, 212 miles away. Goodland is known for it's vast open fields of sunflowers and wheat.

In a small rural community such as this, it's very easy to feel alone. The nights are quiet, the days pass slowly. Socializing is most likely to occur in the isles of Wal-mart. Everyone knows you, knows who you dated in high school, where you went to college, and which bank you use. The same doctor delivered most of your classmates and if you have a cough, he'll whip up a special syrup for you to take. "Newcomers" are defined as someone who moved into the city in the past 15 years, versus being born there. And it takes years to branch out past relatives as friends when you are a newcomer.

When my husband, Doug, and I decided to move to Goodland, we knew we'd go through an adjustment period. We were so used to our busy social life in the town where we graduated from college. Our life had been so hectic and stressful, we relished the idea of a calmer way of life. We comfortably made the transition, learning to eat most meals at home, instead of at our favorite restaurants, watching videos on Friday night instead of going to see live bands. Enjoying family gatherings with his parents, watching football or basketball together while our baby crawled around the house. We slowly started meeting people through golfing at the country club, and participating in MOPs. This was way before the days of Facebook and high speed internet. W rarely used the old lap top computer at home with it's painfully slow dial up internet connection. Occasional trips back east to visit my parents gave us time to catch up with friends.

So when our second son, Sean, was born and later diagnosed with Down Syndrome, our support network was scattered and loose. Of course we had the love and support of our families, but we searched for the strength from others like us. Other parents of children with Down Syndrome or other disabilities. Since our local hospital wasn't able to meet Sean's medical needs, we went to Denver to see specialists. The Mile High Down Syndrome Society offers great resources to Colorado families, but since we'd be returning to Kansas, they didn't have information for us. We got a few pieces of paper printed off and stapled together telling us medical facts about Down Syndrome and included a list of online resources to read.

When we returned home and connected with our family doctor, he referred us to the Early Education Service Center that would offer therapy for Sean until he was old enough to go to school. One of the first things we asked them to do was to connect us with another family. Unfortunately, we learned that he was the only person under 18 (that's as old as they had service information for) in the entire northwest area of Kansas that had Down Syndrome. Their service covers 13 counties, a total of 12,000 square miles, and Sean was the only person with Down Syndrome in that area at the time of his birth.

Talk about feeling alone.

We were sad, scared, uncertain, uneducated about Down Syndrome and we felt like the only people we'd ever known in this situation. We grasped at straws to think of who else might offer us advice. I had a vague memory of a person I once did a committee work with that had a daughter with Down Syndrome, so I did track him down and email him a couple of times. My dad surprised me by telling me that his first wife has twin boys one of whom has Down Syndrome from a prior marriage. and that he had lived with them during their marriage. I'd always known of his first marriage, and the twins, but had never realized one had Down Syndrome. I pulled out the old 35 mm photos from the late 60's and closely looked at the faces of two six year old boys. Yes, I could see it now. They looked to similar, but one was slightly different.

Yet we still had no one close to us, no one raising their child the same age as us, no one to ask questions that ran through our minds and we were afraid to speak aloud.

We pulled out the pages from the Denver hospital and looked at the resource list again. We wanted to find people, not facts. We wanted stories and photos, not statistics and charts. One caught my eye: http://www.downsyn.com/ a parent-to-parent support website, it said. I plugged in the old lap top and slowly watched the pages load. The peach colored backdrop, adorned with cherubs, appeared.


Any and every question I could think of was asked and answered. Photos, videos, stories, resources, reviews, opinions, SUPPORT. Warm open arms.

Suddenly, we were no longer alone and I was so thankful.

I leaned on downsyn.com for support so much of Sean's first year of life. It was the lifeline we needed in addition to the love and support we had from our families and friends.

When Sean was 12 months old, we finally saw another person with Down Syndrome in person. We had gone to a nearby small town to visit their fairgrounds. While watching some horse riders performing various cowboy competitions, a family with a teenage daughter with Down Syndrome walked past us. They stopped for a few minutes just rows away to watch the horses. Doug and I no longer watched what happened in the arena, but instead intently observed the family in front of us. We stretched to hear them, to hear her talk, to see what they said, to wonder what their life was like. A glimpse into our future? How desperately I wanted them to turn around, look into Sean's eyes and see that he was a part of the T21 club! Instead, they moved along and as much as I longed to chase after them, I held back

A few weeks later we went to the Mile High Buddy Walk and completely surrounded ourselves with families like ours. The experience was overwhelmingly emotional and moving. Months later, we moved to our current city and joined a Down Syndrome support group that meets just an hour away. We quickly met other families and built in person support.

No matter where you are and what stage of acceptance you are at, there is always help out there. There is comfort in those connections. I hope each parent that feels alone can make a connection.

Tuesday, November 23, 2010

Thankful That We Are Not Alone - Guest #14

I have been begging for guest bloggers since the blog's debut back in September. Today's guest volunteered way back then! I have been looking forward to hearing her story ever since, and am pleased to introduce Marianne.

"Hello, Readers of Superdownsy!
This is Marianne. I am a hearing impaired adult. I was born with the hearing loss that I have. I grew up in a fairly normal home with a mom and a dad and do not have any siblings.

I am thankful to have my hearing loss because I know God made me special this way. However, growing up in a time era of no technology to help me communicate such as email, texting, even blog posting or Facebook, was difficult.
I was bullied in elementary school and middle school and ended up in a lot of fist fights. The reason is because children at that age do not quite understand what it is like to be in a hearing impaired person's shoes, a Down Syndrome person's shoes, a mito person's shoes, a cerebral palsy person's shoes. In my case, I believe it was easier for them to pick on me because they knew I could not hear them. Kids would ask me what country I was from because of my "accent". They would ask me the same question repeatedly. The bus was equally as awful. I stopped riding the bus late in my 6th grade year. My sweet late grandmother Baba picked me up every single day of my school career until I got my license. I'm forever thankful to her for that. She told me she believed I could hear and always knew I would be successful in whatever God chose for me to do - in this case, be a mom and a wife.
Let me explain how my hearing works: I have one hearing aid, that I wear in my left ear, that helps me to hear about normal. My other ear will not benefit from a hearing aid. I have to look directly at someone's mouth to read their lips. I am dependent on lip reading. I can hear roughly normal sound levels, however, I cannot decipher sounds without looking directly at the person. I cannot decipher the differences between the sirens - fire truck, police cars, ambulances. They are all the same to me. I also cannot hear high pitches, but I know it is there because it cuts off all other sounds and hurts my ears. When I talk on the phone, I primarily use speakerphone and my best friend from middle school and high school days helped me come up with a "code" to speak on the phone with my family and closest friends. I have to rely on yes and no questions to have a decent conversation with my husband, father, mother, and some certain friends that are aware of the "code". When I ask a question, if the answer is yes, they will say "ok" in two clear syllables. If the answer is no, they will drag out the "no" in one long syllable. If they don't know, they will say "I don't know" in three clear syllables. This is the norm of my everyday phone conversations and I am eternally grateful to be able to have those conversations!
I am forever grateful to my God for living in today's technology generation, allowing me to fully converse, interact and socialize with my family and friends without being felt left out at all. He is awesome!
Now, backing up to my grade school experiences: I was in three different elementary schools. It was my parents' attempt to get me the best education possible for my hearing impairment situation. The first one was Atlanta Speech School, where I started when I was 2 or 3 and that is where I learned to speak using my fingers on other people's throats and reading their lips. Sadly, they did not advance to the teaching me to listen without looking. I'm not quite sure why, but I am not going to question it now. I've gotten by without that and there is a reason for that. So I don't hear all the ugliness around me, I suppose. The second elementary school was out of my district about 30 minutes away at the bottom of Cobb county, where I am from. It was a school with a well renown special education department with teachers specializing in hearing impaired and deaf students. I learned sign language at this school, but do not use it primarily at all. I only use it when conversing with other deaf students that are dependent on it. The third elementary school was in my district. I landed there in 4th grade and that is where the trouble began with the social aspects and bullying. I was mainstreamed into the classroom at that point and had a difficult time adjusting. The students also had difficulties adjusting to a hearing impaired student and didn't know how to interact with me. So I started fighting them. I was sent to the principal's office and was spanked with a wood paddle back then. I was not the easiest child to raise and I definitely learned my lessons.
My experience in middle school was one to remember. In my 6th grade year, I was suspended from school for getting into fights with boys and girls -fist fights- because they would come up and aggravate me, provoke me, and ask me questions regarding my hearing loss in disrespectful ways, pointing fingers at me, and it was all very upsetting. As I got older, the fights lessened. My last fight was in 7th grade right before my birthday. My mother took all my gifts away and returned them to the store when I was suspended. That suspension is the one that woke me up and forced me to change.
Since then, I have been on a mission to be happy about my hearing loss, to thrive in it, to show others that it can be possible to live normally, albeit the hearing loss challenges. So through the remainder of 7th grade and 8th grade, my closest friends could see the change in me and were very encouraging. I also had a fabulous special education teacher named Marie Sanders (Kendall, now) all through middle and high school. She is a Christian lady who stuck by me and encouraged me even through my fights.
My high school years were some of the best. It is where I found God and changed my life even more for the good!! I had a good friend who chose to write a paper in an English class about me. The title was "Of Unheard Courage". It was a paper that made me cry. I still have the original copy printed on the old fashioned visible dotted ink on perforated paper. She is a dear friend, special to me because she saw me for who I am, not for what I am not. She is Catholic and saw my love for God and understood it, even though there are differences. She realized there is one God and we both serve him.
Today, my advice for all those parents and children dealing with special needs: Have your children approach them the same way they would any child. Ask them gently, do you want to play with me? And offer to help if it seems that they are having difficulty, maybe move obstacles out of their way, maybe help communicate between them and other children. The most important thing I would offer as advice: do not ignore them, talk about them behind their back, instead, ask their parents how to communicate with their child. They will be grateful that your child is taking a step towards understanding their child and may make a lifelong friend at that.
I am grateful to know Elise and love seeing her smile at school when I am in the building. I am grateful to take photo graphical memories of her and her fabulous teachers. I am also grateful to know Megan, another child at the same school, who is my neighbor. I am grateful to know her mom and to be able to donate my time to help with her annual fundraiser, Music for Megan, which has now concluded. Elise has Down Syndrome, but she is one of the sweetest girls I have ever met. Elise has a heart of gold! She always gives me a hug when I see her at school. Megan has Mitochondrial Disease and she is a super sweet, active little girl to always yearns to be on the go. I saw her at the Fun Run recently and when taking a picture with her teacher and by herself, she always gave me the the "peace" sign - the "V" with her hand. She is a peaceful little girl with a huge heart and a loving family who has worked to so hard to raise money to cure this disease and give Megan the best life possible.
I thank God for allowing me to know these children and I hope to get to know more and help capture memories for those children in the future. I am also thankful for my hearing impairment. I feel it is God's way of sharing me with everyone in a different way, and in an encouraging way. It will not stop me from trying everything I want to try, to attain my ultimate goal in life, to be successful in anything I choose to that God allows me as part of his eternal will.
God bless you and thank you for reading this!! Please email me at teamnash4@gmail.com if you have any further questions regarding my hearing impairment, I will be glad to try to answer them to the best of my abilities.
Much Love and Blessings,

Monday, November 22, 2010

Thankful That We Are Not Alone - Guest # 13

My guest posters were hunted down by various means. Some volunteered, some blog themselves, some I actively pursued, some I pestered, and some I came out of left field and probably freaked out... Today's guest is my husband's fraternity brother. While he is a friend of mine on Facebook, we have never been super close. So when I point blank asked him to consider doing a guest post, it probably unnerved him. But he graciously accepted my request, confessing that this is his virgin blog post.

Please welcome Rudy. This is everything I expected it would be when I asked!

"I don't know when I realized that my family situation was different than most, probably because my parents were as involved as anyone else's parents. Actually, truth be told, they were probably more involved than most of my friends' parents. My dad coached my basketball team all the way through junior high, my tee ball teams, and my flag football teams. They actually still come to my games today, and I'm the coach now. I had friends over night, had birthday parties, went on vacation, went to private school, and had everything that I could want growing up.

You're probably saying, sounds like any other family, so why is your family situation different? It wasn't any different to me, it is the way it is. You see my parents are deaf. Yes, that's right, they can't hear. My mom is great at reading lips and wears a hearing aid. My dad, can't hear a thing, but that is the only thing different about them.

I am always amazed at the questions that people ask me when they find out my parents were deaf. Wow? Really? I never would have guessed...Like my parents not being able to hear was supposed to leave a visible scar for everyone to see. Some of the most common comments include, I bet your house is really quiet (actually it was very loud, you see they didn't know when they were being loud), How did you learn to talk (umm..the same way you did from other people. I wasn't shut out from TV, radio, or other people who weren't deaf).

People always assumed that my childhood was abnormal due to the fact that my parents were deaf, but actually it was normal to me and all I had ever known. I sometimes like to compare it to a foreign speaking family that moves to the United States. Nothing really is different, there is just a communication barrier that has to be overcome. I do have to give my parents "props" for not "leaning" on me as much as other deaf parents to interpret. That was the only inconvenience to me, or so I thought. I would routinely help my parents on the phone, at the doctor's office, or just out with them daily. I would think to myself, this isn't fair. But in reality, I was developing those skills that I now realize are necessary for survival. Like if you don't know, ASK, it's okay.

I wouldn't trade these experiences for anything. Growing up in my house with that situation was a blessing and a curse, humorous and sad, independent and cooperative. It taught me to not let your situation determine who you will be. You've got to play the hand you are dealt, turn lemons into lemonade, and don't ever be afraid to be yourself!

As for being a parent, it taught me that I shouldn't make excuses to not be involved in my child's life and tolerance for persons different who are different from ourselves. We can learn many things from people who live life differently than we do. I wasn't overly concerned with possible "defects" that might occur during pregnancy/birth. I knew that you can't stop and worry about things you don't have any control over, and to handle the situations as they come along as best you can. We've got to love each other no matter what.

Sunday, November 21, 2010

Thankful That We Are Not Alone - Guest #12

When we first moved to Georgia, I got involved with a Down Syndrome Play group. I had to drive and drive to get to it, and with all of Elise's health problems, we missed SO many of the dates. As our babies grew up and got into the school system, the playgroup went into a funny limbo...we still have the "loop" where if anybody has any "Am I crazy?" questions, or requests for specialists, or just parenting advice...we send to the group and everyone responds with anything helpful. I cannot tell you what a blessing this has been.
So a week or so into this Thanksgiving project, I realized that I still had this incredible group and that there HAD to be a writer or two in there...I was not disappointed.
Please welcome the incredibly gifted, Ricci.
"I Surrender All

I thought I was living a surrendered life, until I actually had to surrender it.

Wednesday, June 27, 2007-
"I've been craving so many sweets lately," I hear myself say as I pack my plate for a second time at my weekly Bible study. The words penetrate the air around me and I immediately think, "Could I be pregnant?" No, certainly not, we are taking precautions, I silently assure myself.

The lingering thought pursues until I pull into the pharmacy. As I stare at the pregnancy tests, I think, I never thought I'd be buying one of these again. When I get home, I wave to my family and rush into the bathroom. Each time I have taken this life changing test, I see the results instantly. This time is not different. I gasp! There it is; a second line, a new life, my fourth child. Holding the test and my breath, I walk outside to find my husband and three kids catching lightening bugs. My kids dance around me grasping into the sweet summer air for the twinkling lights as I walk over to my husband

"How was your study?" he asks. Without saying a word, I simply hold up the answer.

Tuesday, July 31, 2007~
Still in a state of disbelief, I sit in my doctor's waiting room. My mind wanders to the birth of my first child, a beautiful girl, Remington Lark.

I relive the moment that she opens her eyes and looks at me for the first time. I trace the outline of her big, plump lips, her pink chubby cheeks, and her tiny pointed ears. Tiny pointed ears! I have given birth to a fairy. Wonder envelopes me like a warm wind. "Thank you, Lord" I whisper. A still small voice whispers back "Welcome to the magical journey of motherhood."

Twenty two months later, Savyn Lindy, another baby girl, joins the family. With a name as unique as she is, this world is now a better place. Her heart is as big as her smile. She radiates, captivates, and frustrates, in her own savvy way!

When I find out that I'm pregnant with my third child, I make it clear, I want a boy! As soon as he is born, my husband shouts, "It's a boy!" I feel instant joy as I reach for my first son, Brandon Michael. He is here, and my family is complete.

There is something so pure, so enchanting about the love of a child. So why do I feel so conflicted about having another one? Before I can rationalize this feeling, the nurse opens the door.

"Ricci?" She calls out and suddenly I'm back to the here and now. As I wait for the doctor in my "oh so chic" paper robe, the thoughts flood in. How is another baby going to fit into our lives? I have just started my own business, when will I have time for another baby? I've had three children in five years, nursing each one for a year. Wait a minute, the math doesn't even add up.

Interrupting my thoughts, the doctor knocks and opens the door. After my exam, he says, "You seem to be about 7-8 weeks along, but I'd like for you to schedule an ultrasound."

"Why? Is there something wrong?" I ask.

"No it's just to get an accurate due date," he assures me. I nod, all the while thinking, Can you just check again? Are you absolutely sure I am pregnant?

I turn to leave and the nurse hands me the complimentary black nylon baby bag. "Congratulations!" she beams. "I already have three of these, I think, I don't need another one. Bothered and bewildered, I make my way home. I am officially a mother of four.

Monday, August 6, 2007-
Today, I turn thirty-seven and I am having another baby. Feelings of welcome anticipation are slowly replacing the shock and disbelief I've been carrying around with me. I make it a daily habit to surrender my life to God's will, so I know this baby is His plan for our life. It has to be His idea, because it certainly isn't mine.

Later in the day, this email finds me, "God doesn't choose the qualified, He qualifies the chosen." I write it down and stare at the words. I didn't decide to have another child, God chose me to. This truth settles over me and the beginning feelings of excitement emerge.

One day later, I wake up one year older and centuries wiser.

Tuesday, August 14, 2007-
The weight has lifted, the fog has cleared and I breeze into the doctor's office for my first ultrasound. The technician and I make small talk as she glides the handle over my stomach. She tells me I am measuring 12 weeks and 4 days. As she continues, the look on her face begins to change.
"Are you going to have the NT testing?" she casually asks. She explains that all women over thirty-five are offered a lest that measures the fluid at the base of the babies' neck to help determine the probability of a chromosomal abnormality.

"I guess I'll have it done," I answer. "Why, do you see something?" I could tell by her hesitation that she does.

At my prompting, she admits, "I am a little concerned with the neck."

"A little concerned with the neck?" I shriek. She tried to assure me that everything is probably fine.

Probably fine, and concerned with the neck are words that you do not want to hear at an ultrasound.

Monday, August 20, 2007-
One week after the neck comment, I have another ultrasound. I search the nurse's face for any sign that something is wrong. I turn to look at the screen and see my baby waving.

My eyes well up, I blink and think, stop this, don't cry. Everything is probably fine, I assure myself, again. I don't even notice that the doctor has come in and is standing by my bed.
He introduces himself and tells me, "It's the nuchal translucency fluid that we are measuring." I try to concentrate on what he is saying, but my eyes dart from him to the tiny image on the screen.

Finally he says, "We like to see the fluid levels under two, and your baby is measuring at five. This I hear.
"What does that mean?" I ask. I'm not even sure what he says, but I can read it in their faces, something is wrong with my baby. He tells me about CVS testing where he can withdraw some of the fluid from the placenta and check for any chromosomal abnormalities.

I want to scream at him, I'm not even supposed to be pregnant! I ask to call my husband and as soon as I hear his voice, the emotions start pouring out. "Something is wrong with our baby," I whimper. In between sobs, I tell him that the fluid levels are too high and the doctor is suggesting a CVS test. My husband tries to calm me and suggests we both come in to meet with the doctor.

While I am attempting to schedule a time for the next day, the nurse hands me an ultrasound picture. I glance down at the small figure waving. There are two little words printed on it...Hi, Mom. I can't hold back the tears.

"Come in around 11:00 am." the receptionist tells me. I glance in her eyes and see the first (of what would become so many) sympathetic look.

Everything looks the the same, but somehow my world is different. As I drove home, my heart is racing and the what if's begin to consume me. Suddenly, something catches my eye. A big hawk swoops across the front of my car and lands in a nearby tree.

I slow down to see him and a scripture rises up to save me.

"Be still and know that I am God." Psalm 46:10 (NIV)

I pull over and repeat the words aloud,"Be still and know that I am God." I lower my head and the small voice whispers, "Be still, my daughter, and know that I am here." I glance up at the hawk, sitting so majestically, so still, in the top of the tree. I breathe. And then, I smile. God, the hawk, and I have won the first battle.

Tuesday, August 21, 2007-
My husband and I drive to meet with the doctor and I can only stare out the window. It's a hot, sticky day and my mood is as damp as the air. Sitting in the waiting room, I casually flip through the Atlanta Home Magazine trying to keep my mind off the upcoming conversation. I picture myself living in this cool, downtown loft when the nurse opens the door.

She nods our way, "The doctor will see you now." Another nurse calling me back to reality. She guides us into a small room with one round table and three chairs. The doctor comes in and shuts the door. He motions for us to sit down and starts to talk about our baby. I feel nauseous. After hearing the words like lethal chromosomal abnormality we decide to have the CVS testing. The procedure itself is not that bad. And it's not that good either.

WE are told the preliminary results could come back in 48 hours and the doctor would give us a call. On the way home, I don't see any hawks, I don't hear any little voice and begin to feel defeated.

Over the next couple of days, I Google words like cystic hygroma and increased nuchal and translucency fluid. I read about trisomy 13, 18, and 21 (which is the technical name for Down Syndrome). I go to message boards and read stories about women, waiting like me, to find out the results of some procedure.

Tuesday, August 23, 2007-
After what seems like two years instead of two days, the nurse calls.

"Unfortunately, there aren't enough cells to get the rapid results so it will take a couple of weeks before we know anything."
"I'm so sorry," she says, and I can hear the sympathy smile through the phone. After I hang up, I wonder aloud, "What are you preparing me for, Lord, and why do you need more time?"

The next two weeks are surreal. It is also a time of pure magic. God uses this time to assure me that His love and His plans are unshakable, undeniable, and unbelievable. During the waiting time, I start reading a book by Beth Moore. She writes about a little girl from her church that has Down Syndrome. I have also stared reading Beth's Bible study based on the life of King David. On the first page, the following words are printed just for me,

"Do no look at the appearance or height. The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart." I Samuel 16:7 (NIV)

I notice children in the store, at the park, and in restaurants, who have Down Syndrome. One morning as I am looking through books, a scripture falls out and lands at my feet. It's Matthew 11:25 (NIV).

"At that time Jesus said, I praise you Father, Lord of heaven and earth, because you have hidden these things from the wise and the learned, and revealed them to little children."

Another scripture immediately pops into my mind.

"I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." Luke 18:17 (NIV)

I remember reading an article referring to people with Down Syndrome as "forever child-like." Not such a bad thing, I decide. Children believe with all their hearts and love with all their souls.

My three children bring wonder, radiance, and joy into my life over and over again. Wonder, Radiance, and Joy. These three words remind me of God. And these three words remind me of my children. As I kiss each one of them goodnight, I say a prayer of thanks. I continue to wait for the call. But I truly know that I am not waiting alone.

Thursday, September 6, 2007-
The phone rings a little after 5pm.

"We received your test results," the doctor says. I breathe in as he continues, "Your baby is positive for Trisomy 21." I want to say that I already know and it's okay. But instead, I exhale.

The doctor continues and my thoughts settle on one simple question.

"Do you the sex of the baby?"

"Yes," he pauses,"the baby is female."

As I hang up the phone, I can't help but smile. It's a girl.

Later that night, I think of all the signs God sent me in preparation for this baby. As I'm about to go to sleep, I remember something my Aunt Carolyn told me a few days before.

"I feel that the Lord spoke to me and said that the baby will be fine. Just have hope." HOPE.

Again, a scripture pops into my mind. And now these three remain: Faith, Hope, and Love. But the greatest of these is love. I Corinthians 13:13 (NIV)

This will be her name, I decide. Love. Bree Love. I run my hands over my stomach and allow myself, for the first time, to connect with this beautiful baby growing within me. Welcome, my Bree Love," I whisper, "I love you."

Friday, September 7, 2007-
I'm relaxing in my sunroom when my eyes fall on a small plate hanging on the wall. It's a picture of a little girl with angel wings. I gaze at her and think about my new baby.

My angel baby, I say aloud as I rub my stomach. I take the plate off the wall and sit in my rocking chair. I turn the plate over and read, for the first time, the inscription on the back. "Angel of Hope" My aunt's words rush over me, "Just have hope." I smile from the inside, I'm having hope.

Sunday, September 9, 2007-
Before I am out of bed, I come up with every reason not to go to church. Practically everyone know that we are expecting, but no one knows our recent diagnosis. I want some alone time, to think, to read, to walk, to laugh, to cry, to pray. The small voice whispers, Go to church, you need to go to church. Reluctantly, I get in the shower.

Before the sermon begins, our pastor introduces someone and she walks to the stage. She talks about becoming a member and the reasons why she feels our church is so special.

"You see, our youngest daughter has Down Syndrome." She tells of many blessings her daughter has brought into her life. My tear ducts explode.

Is there a spotlight on my head, I wonder? We just found out so I know no one else knows. "I know," the voice whispers and once again God is talking right to me. And I am listening.

On the ride home, I notice my friend, the hawk, circling high in the sky. I watch the graceful movements, close my eyes, and fly with it.

The rest of my pregnancy is rather uneventful. I have monthly ultra sounds to check for heart problems, blockages, proper growth, etc. Each visit brings good news and she is developing great. At one of my visits, the doctor shares some startling statistics with me.

"Ninety percent of women who receive a prenatal diagnosis of Down Syndrome choose to terminate." he says. I stare back at him, trying to wrap my mind around this fact.

"Ninety percent?" I ask. "As in 90?"

"Yes," he answers, "Ninety percent."

This number stuns me, saddens me, and haunts me. Over the next several months, I read books like Expecting Adam, by Martha Beck, Angel Unaware, by Dale Evans Rogers, and Angel Behind the Rocking Chair, by Pam Vredevelt.

These women all tell of incredible experiences. Words like joy, peaceful, kind, generous, and loving are used to describe their children. A calling is put on my heart to share my story with the world. I'm not filled with fear, anxiety, or doubt, but rather with faith, hope, and love. And, when the what-ifs begin. And, when the what-ifs bgin to circle in my mind, I simply close my eyes and take flight. I rise above the fear and gracefully glide through it.
Saturday, February 2, 2008-
Entering my ninth month, I re-read Laurie Beth Jones' brilliant book, The Four Elements of Success.
She writes, "I believe that the four four elements are fascinating reflections of the different characteristics of God." I agree. She explains four different personality types of wind, water, earth and fire. Based on her descriptions, my children fit perfectly into these elemental personalities.
You see, I have my wind, my Remi. She fills me with such wonder. (Remember, she is a fairy!)
I have my fire, my Savyn. She is so passionate, she ignites those around her.
I have my water, my Brandon. He refreshes me with his joyful nature and his eyes are as blue as the sea. I think I am complete.
Only God knows I still need the most important element. The ground element, and the only one that contains all three. Earth. My Bree Love. I know she will anchor my family and bring us to a simple wisdom as pure as a walk in the woods. "A planting of the Lord for the display of His splendor." Isaiah 61:3 (NIV)
Thursday, February 14, 2008-
My due date is still two weeks away, but Bree Love begins her descent today. It's the day the world celebrates love. This is perfect timing. My contractions are steady but not too strong so I rest and try to enjoy the day with my family. I know the time is coming soon, but I really want one more night at home. I'll call the doctor in the morning, I decide and get ready for bed. The night is still hushed and magical. I want to feel this moment so I open the window and breathe the air. It's crisp and cool, unlike that hot August day not so long ago. I think about our journey to get to this day and how much God has taught me, already, through this precious child.
What do I know for sure? God is with me. Whatever I am facing, I will rely on the abundant power of prayer. It's the only source of power.
I have the power to change my thoughts. What if...everything is okay? What if...I just close my eyes and ask for guidence, help, strength, patience? What if he answers? Trust me, he will.
I never really sleep, but I rest. I rest in the the knowing that God loves me and all I really have to do is love this child. And, this I can do. I confidently curl up around a pillow and whisper, We can do this, Bree Love. No doubt about it, we can do this."
Friday, February 15, 2008
I arrive at my doctors fully expecting to be sent to the hospital.
"It's time," he verifies.
I rush home to meet my husband. We hug our children with promises of a new baby to love when we return.
On the ride to the hospital, the contractions are closer and stronger. The cool breeze rushes through the half-open window to soothe and comfort me once again. We arrive at the hospital and settle into our room. The next several hours labor on and then, just like that, she is here.
When I hold her for the first time, I tingle. I brush my finger alond her cheek and she looks into my eyes for the first time, there are no words, only love. Rejoicing love.
Saturday, February 19, 2008-
Outside, the night sky begins to brighten as sunlight tries to peek out from increasing rainclouds.
A knock startles the quiet space, "Hi, can I come in?" the nurse asks.
"Sure," I whisper. Holding a clipboard, she walks over to Bree, who is peacefully sleeping in her bassinet.
"She's beautiful," she praises and I wonder if she knows. I glance down at the clipboard and see Bree Love, girl, Down Syndrome.
Words on a page, I think, defining my child, changing the way people treat her.

"Yes, she is beautiful and magical, too." I declare. Our conversation turns more personal as she asks about Bree. She pulls a chair as I relive the last nine months.

"I expected to come in and find a sick baby and a sad mother," she confesses. "But she's not sick and you're not sad."

"No, she's healthy and I'm very happy."

Before she leaves, she thanks me for sharing our story. I can tell that it moved her in a profound way.

I snuggle close with Bree and whisper in her tiny ears, "See that, Sweatheart, not even a day old and already teaching this world a thing or two." My head falls into the pillow as the rain begins to softly pelt the window. Just before my mind drifts away, the small voice whispers....

"It is well with my soul." And it is."

Thankful That We Are Not Alone - Guest #12

Because this post is particularly long, I've been entering it in over about a week. And for whatever reason, when I posted it, it posted in the order of when I started putting it in...if you know how to fix this, because you are a bloggy whiz...please let me know...

Otherwise here it is, so it will be sort of in order...in case you just check the page and are not a technical follower or a fan on Facebook. :)

Guest #12

Tuesday, November 16, 2010

Because I Really Have To...

I couldn't let Angela's plaintive post stand alone.

I've really had to hold myself off the blog this month...I kinda got on a roll last month, but because of how I set this month's project up, I corralled myself off for the month...I have a list for the first of December...and I may have to start writing them and saving them so I don't forget...but I really had to piggy back on this one.

I have said that I nipped the grieving process off pretty quickly, but that I revisited it at different times over and over...I have said that parenting is tricky and that "good" parents and "bad" parents are not so cut and dried...and after putting in Cara's post, and asking her some follow up questions, I have started really asking myself if the experiences that we have had in the past with people with special needs colored our own reactions when we were given our Extra Stuff? In mulling it over the last couple of weeks, I really think so...and additionally, what else did we go through at various junctures that could have short-circuited the "dealing" process? Also, do we have other children and how do they compare in age and how did they fall in the birth order? Not because of the actual birth order having an impact on them, but how the comparisons fall with their siblings...


Past experiences-

Cara said that she had faced the possibility of Downs with one of her older children and had some very positive experiences with a child in a Sunday School class they taught at church...

I had volunteered and worked with children and young adults with Downs...but they had been severely and profoundly involved, in a special school that only dealt with kids who were not independent on, really, any level...there had never been a "high functioning" child with Downs in my past.

The only quasi hopeful experience I had with a child with Downs was a little boy...I think he was 10 ish. He had no speech and his mother hired me to give him private "swim lessons". All she wanted me to do was to take his panic of the water down a couple of ticks down from terror. I was in the BEST shape of my life, I was running, swimming, biking, and doing weights...and I hurt SO BADLY after teaching him swimming lessons...holding him in the water securely, to give him a certain measure of awareness that he was safe, and yet trying to help him feel a measure of independence, and he was panicking and flailing...I have never taken so much medicine JUST for sore muscles...For the record, after 1o weeks, he would willingly get into the water and stand. AND I HAVE NEVER BEEN PROUDER!! :)

So when I was told my child had Down Syndrome, the only experiences had been, while positive, certainly not encouraging for personal independence...

Other possible short-circuiting experiences-

In my personal experience, the Down Syndrome takes a back seat to medical crises...When I had to deal with my baby having open heart surgery and then being diagnosed and followed for a pre-cancerous condition all within 5 months...again, the Downs just wasn't as important...then, when she finally presented it was with a cancer that had a less than 30% survival if you were typical...and better than 98% with Downs...that certainly improves the appreciation of the Downs, let me just tell you! :)

And so now that the medical panic is subsiding, the Down Syndrome is taking more of a center stage...


If your child with Downs (or any special needs) is an only child, or the baby of the family, there is no everyday "Reality Check".

I can say this, because Elise was the "baby" for 4 years and until Amelia came along, the impact of the Downs was not an every day comparison. But when I look at my eight year old, and my 20 month old is more a peer than my 4 year old...the depression comes a lot quicker. And when her younger siblings start asking why she can't talk "right" or why she acts "funny" the fact that things are not as they "should" be gets thrown into your face almost hourly.


Also, when your baby is a baby, the gap of where they are and where they would've been can only be so wide. When your baby is 1 year, and their behavioral age is 7 months, it's not that huge of a difference. But when you are potty training your 5 (and then 6) year old and they are functionally 2, the gap abruptly gets huge. And when you realize that your child will not be able to cram into the regular diaper sizes for much longer, the pressure grows.

And so, I would like to extend a public hug to Angela. There are so many factors in parenting. There are even more in parenting kids with special needs. And every child and life combination is different. And I would like to call out any parent with kids with special needs if they say that they dealt with their issues immediately and never had to "Deal" with anything again. Because I sincerely doubt it. In my experience the dealing with the new reality is cyclical. I believe that most parents revisit their acceptance over and over and there are days or moments or stages of depression, melancholy, stress, or just accepting the "stuck-ness".

And so, in the continued spirit of the Thanksgiving project, Angela, YOU ARE NOT ALONE. Honest. And you are probably not even so much of a minority as you think...and if you are...then almost my entire circle of parent peers is the entire minority. Really. :) So, rest assured that you will get un-stuck. And that you will probably get stuck again. And that is really okay and perfectly normal. God will hold your hand, whenever you need it. Friends, too. And that, Ladies and Gentlemen, is the true bonus of having kids that aren't quite normal. Or at least, that's my favorite part!!

Thankful That We Are Not Alone - Guest #11

Please welcome Angela....she may or may not remember me contacting me through a friend when her son Benjamin was born...but she was in my prayers for more years than she probably even knew...I have gotten to know her in actuality over the last few months...and she is a joy. Her blog is so much fun, please do check it out...and I am thrilled to introduce her to you:

"Tiffany asked me a couple of weeks ago to write a post for her blog. It's been awhile since I've blogged, so I figured it was a good motivator. I am rarely short of words, and I enjoy writing.

But this one has been rather difficult.

I have literally cleared my screen four times and started over.

I suppose it appropriate to be sitting here, trying to compose the words, stuck.

That's how I feel in my life right now: stuck.

I just deleted over a page of typing because it was a bunch of whining.

My middle son, Benjamin, has Down Syndrome. He is 2 and 1/2.

And I am still not okay with it. I struggle with it almost everyday.

I obviously love him very, very much. It is a fierce, protective love that is different than the love I feel for my other sons.

But the Down Syndrome thing is harder now than it was in the beginning. I know I am not alone, but I know that I am in the minority. Most parents are a lot more accepting this late in the "game". They have moved on past the shock and grief stages.

It still hits me like a slap in the face sometimes. And I can't escape it. My son has Down Syndrome. Down Syndrome. Down Syndrome.

Like a broken record that plays over and over in my head, it hits me in different ways almost every day.

When I see my four-year-old son playing in the yard by himself, talking up a storm to the air because his younger brothers are too young to play with him. Benjamin would be old enough to play with him if he didn't have Down Syndrome.

When I am spoon feeding two boys at each meal. Benjamin would be using his own spoon if he didn't have Down Syndrome.

When I watch with a knot in my stomach as my husband struggles hard to give Benjamin a breathing treatment as Benjamin cries and screams and flails. If Benjamin didn't have Down Syndrome, at 2.5, you would be able to explain to him what you are doing and he would understand

When I only take two boys to a kid's birthday party and leave one at my parents' house house. If Benjamin didn't have Down Syndrome, he would enjoy parties and theme parks and movies and swimming pools at his age. He wouldn't still be so much of a baby.

When my friends' children and my own nephew who are all younger than Benjamin can talk and communicate with their parents and their siblings. Ouch. Still waiting for our first words, and we only have two or three signs. There's very little communication.

I realize how most of you will take this: That I'm ungrateful and that I need to realize that it could be worse. (It could.) That Benjamin is a precious gift. (He is.) That this was not an accident. (IT wasn't.)

I'm just struggling. Please don't judge me. Please don't tell me (even in your mind) that I need to get over it already. Just accept me for who I am, where I am.

A mom who loves her son very much but who is human and confused and disappointed.

I'm just stuck."

Monday, November 15, 2010

Thankful That We Are Not Alone - Guest #10

This dear friend goes to my church and I've had the pleasure of watching her handle a massive surprise with grace and public joy. I have been blessed watching her...and I hope you will be blessed reading her more intimate joy.

Please welcome Sonya:

"Why I am Thankful for a Fisher-Price Star Stacker

In 2002 our daughter Caroline was born, followed by Lauren in 2004. We thought we were done; "so done" that I had my tubes (well, one tube, but that's a whole other story) tied two month later. As the girls began to outgrow their cribs, toys and all the other baby equipment and accessories we had accumulated, we found new homes for the stuff. We were done.

Two years later, however, I began to experience some familiar symptoms. My state of denial lasted a couple of weeks, but the little plus sign on a positive home pregnancy test was quite a wake up call. The next day we were at the doctor's office viewing a little heartbeat on a screen and calculated the cost of all the "stuff" this little one would need. As we left the office in a bit of a daze, we were encouraged to enter a Fisher-Price drawing. Top Prize: high chair.

A week weeks later, a nurse called with the news that we had won the third prize: a little Fisher-Price Star Stacker. I picked up the toy and remember chuckling over the fact that the baby had one toy now. On the drive back home, as loud and clear as if someone were sitting in the passenger's seat talking to me, came the thought,"See, I am going to take care of this child." It was startling, but it was the most reassuring thought I'd had in weeks! I believe that God, through the Holy Spirit, was reassuring me on that day!

Over the next few weeks and months as news of our "surprise" pregnancy spread, we received loans and gifts of nearly everything we needed: maternity clothes, baby clothes, a crib, toys, etc. See, I am going to take care of this child.

At nineteen weeks, a routine ultrasound of our little boy revealed two clubbed feet and an atypical measurement in his head. We took the doctor's advice and scheduled an amniocentesis just to rule out any genetic or neurological causes.

This is the point in the story where I admit my long-time animosity towards minivans. I can't stand them, and swore that I would never drive one! The problem was that even our largest vehicle wouldn't accommodate three car seats and so our hunt for a new family vehicle. Just a couple of weeks before the amnio, I begrudgingly began to admit that a minivan made the most sense for our family. To preserve my "dignity" though, I declared that the day we picked up the minivan would be one of the worst days of my life.

Have you guessed what happened next? On the way to pick up our new minivan, I answered the call from a geneticist with the news that our new little guy (at this point my husband and I were still debating between two names) had a rare chromosome disorder; a deletion in the top portion of Chromosome 2. Other than crying my way through all the sales and financial documents - I still wonder if what those people at the dealership thought - all I remember from that day are the words of the geneticist:

Five cases in the the medical literature:
Severe to profound mental deficits
Low muscle tone
Heart defects
Hearing loss
Seizure disorder
Shortened life span

Very little was known about other kids with similar deletions, but none of it was good. As the doctors began to run more detailed tests, we asked folks to begin praying. Our families, friends, Bible Study Groups, church family, and even strangers prayed for us. A week later, a report came back that revised the location of the deletion. Their best guess was a slightly improved prognosis. We settled into a cycle of despair and hope, but whenever I saw that little Star Stacker toy I remembered the words, "See, I am going to take care of this child." I knew that God would either heal our son or equip our family to care for him.

A week before his due date, I went into labor. It was an anxious few hours as we waited to see what immediate health concerns Ben would have. Ben arrived with a hardy cry and a good Apgar scores. An echocardiogram, a renal ultrasound, and a detailed hearing test revealed no causes for concern. He was discharged from the hospital two days after his birth. See I am going to take care of this child.

Three weeks after his birth, we were at the orthopedic office to begin serial casting process to correct his feet. As the doctor wrestled into two thigh-to-toe casts, he declared that Ben was "strong". I couldn't have been more pleased.

At the age of six months we became concerned about Ben's hearing. After multiple hearing tests, one of which was performed at the hospital so he could be sedated, we discovered he has a moderate, mixed hearing loss in both ears.

When we went to the audiologist to arrange for hearing aids, we were stunned to find out how expensive they are. Katherine told us state money might be available to assist the purchase, but she knew Fulton and Cobb counties were already out of funds for that year, she wasn't very hopeful. We left with a promise that she would call and let us know.

We arrived home to find an excited message from Katherine. When she called the contact for Forsyth County, she was told money had already been set aside for Ben. The hospital audiologist who performed the sedated test had already called and put him on the list! Our cost for the aids would be a little over $400. We shared this exciting answer to prayer with our Bible Study groups and in just a couple of days received a call that someone had anonymously donated$400 to help us pay for the hearing aids. See I am going to take care of this child.

Ben is now 3 1/2 years old. He has some developmental delays in his speech, gross and fine motor skills, but he is so far ahead of where we thought he would be. I have hope that he can be an independent adult. I keep that Star Stacker in his room as a tangible reminder of how he has taken care of Ben as well as provided for our material needs."

Saturday, November 13, 2010

Thankful That We Are Not Alone - Guest #9

This is the author of another one of my very favorite blogs that I follow. I am very excited to introduce Starrlife from Life Decanted. She has a gorgeous girl K, who also has Down Syndrome and I'm not sure if I enjoy the reflections or pictures more. :)

This is a very timely post. I have striven to be conscientious about this very subject, but it is something we really need to be consistently aware of as parents of kids with special needs. I have been personally thinking a lot on this subject the older Elise gets. I want my child to be strong and confident, but not feel any more entitled than my other children.

Thank you, Starrlife, for putting it so beautifully:

"A Good Question

A great artist, bloggy friend and parent of an adult daughter with Down Syndrome, Candee Basford, turned me on to a wonderful article from Psychology Today written my Brene Brown read here.

Reading this article has some at an interesting point in my daughter's development, my sweet kind 11 year old daughter who who recently has been trying on asserting herself, and not very skillfully - in other words, doing a little bullying in the form of pushing a little boy and cutting to the front of lines (moving her body and intimidating others to get to the front). Being the parent of a child with visible differences, I have, like many others, visions of people taking advantage or making fun of my wonderful child. So, to observe and hear about these incidents is so ironic - it sends a chill down my spine. Have I raised a bully, an unkind child? Is that how my daughter is going to manage her own emerging feelings of vulnerabilities as she becomes more aware of her differences? Did she learn that from her peers of from our family environment? Does this mean there are cruelties being done to her that I don't hear/know about? That she can't express?

Brown reflects in her article that at this point in our culture, it seems that there is an increase in the pattern of, "Rather than doing the difficult work of embracing our own vulnerabilities and imperfections, we expose, attack, or ridicule what is vulnerable or imperfect about others.".

I can see that everywhere - from reality shows and the news, comedy and movies. I hear that Myspace and Facebook as well are hot beds of one-upmanship and put downs. Denigrating others to boost our own sense of belonging, enhancing that us vs. Them dynamic appears to be built in our day to day life. How can we stop our children as the struggle to find their comfort zone in the world from doing unto others what we would not want done to them?

I know that, as a so-called typical person growing up, the world was a painful and exclusionary place socially. So I've always thought that my ideas about difference were progressive and that because I was so happy with my daughter just as she is that that would assist her in maintaining her self esteem. But now I see that there is more to it than that. There must be a deeply held belief that not only is it okay to be different, but that it is okay to be apart, it is okay to be afraid and to teach skills on how to be afraid and vulnerable without acting out against it - finding the place that we can be "the one" and being kind instead of aggressive in that place. Standing at the head of the line and humbly offering it to another. Seeing the person pushing an reflecting on how sad it is rather than how strong that is. Brown says it better than I can so I'll quote her again, "Vulnerability may be at the core of fear and uncertainty, but it is also the birthplace of courage and compassion".

Now I know in my heart that my daughter remains sweet and kind but needs to learn skills to manage her social interactions in a positive way. Her school has a wonderful program called Positive Behavior Intervention Supports to build anti-bullying skills. The teacher decided to address my daughter's behavior just as you would anyone else's, with an invitation to speak to an authority figure assigned to educate around conflict resolution skills and he id an excellent job since she reported back some of what he taught her. But as Brown says at the end of her article;"The answer to the bullying problem starts with this question; Do we have the courage to be the adults that our children need us to be? ".

And that is a good question."

Friday, November 12, 2010

Thankful That We Are Not Alone - Guest #8

This sweet mama approached me with a request to participate in my Thanksgiving Project. I cannot even begin to tell you how pleased I am that she did. She has a wonderful blog On A Life Less Perfect. I encourage you to check it out!

Please welcome Lisa:

"Mrs. Bissaillon is the gym teacher at the Perley Elementary School. She is a stern woman who rarely smiles.

Her preschool and kindergarten gym classes are unusually well behaved. The word on the playground is out; the kids have been warned. This woman has no tolerance for misconduct. It is as if the milk cartons in the cafeteria contain dire warnings and photographs of kids who misbehave in her class. She reminds me of a hardened Marine Drill Instructor as she barks out commands to her lasses of tiny terrified tots.

"Joshua, if you can not be quiet and listen to my instruction, you can go sit over on the bleachers until you can." she barks. The once rambunctious child is jolted into submission as he hangs his head and slowly shuffles over to the bleachers to serve his sentence and pray that his photo does not appear on the milk cartons.

Before Nicholas started kindergarten, my 8-year-old son, Weston was unrelenting in his horror stories of Mrs. Bissaillon. Being a rambunctious child himself, and having served plenty of his own time on the bleachers, Weston made it very clear to Nicholas, this was not a teacher to underestimate.

Even parents dropping their children off at school in the morning seem to avoid any unnecessary eye contact with Mrs. Bissaillon. The mere sight of her seems to conjure up their own nightmarish memories of tyrant teachers and days spent in detention halls.

I must admit, I too, am afraid of her.

So, you can imagine my surprise when one day Mrs. Bissaillon boldly marches up to speak directly to me. Thoughts run amok inside my head as I desperately try to prepare myself for what she is about to say.

She can't be complaining about Weston this time, he's at the middle school now, I think quietly to myself. It can't be me; I don't even go to school anymore! Did I look at her funny? Does she notice the cold sweat on my forehead when I walk past the gym? Thoughts speed through my brain like ping pong balls. Then, as if a bucket of cold water is thrown over my head, I realize, oh no, it's Nicholas!

More thoughts, faster this time, oh no, he had one of his tantrums, probably the full-blown kind where he throws himself to the ground, kicking his feet and screaming. That's it, and now she's starting to speak. I close my eyes to prepare myself for what's coming. I am ready to hear how she is dedicating an entire bleacher section to me to help remind others of what happens to those with poor parenting skills.

"Mrs. Peters!"
"Yes?" I ask tentatively, cringing just a little bit.
"I need to tell you what a delightful little boy your son Nicholas is!" And for the first time in Perley Elementary School history, she smiles.
"What?" I ask.
"That's right", she says,"Can I tell you just how hard this little boy works! Our first activity in class is running two laps around the gym. Your son led the class for the entire two laps!"
I am completely speechless. Her words have paralyzed me. I struggle to visualize my son actually winning a running race. She is still smiling as she continues her description of the day's events.
"He ran two laps, played our bean bag game, and still had enough energy to help all the other children pick up their bags. He listened closely to all of my instructions. But there is something else." she says.
This is the part about the tantrums, I think.
"Your son looks at me with such love in his heart."
I am stunned. I look at Mrs. Bissaillon and quickly realize, that like Nicholas, this woman is often misunderstood. Underneath her hardened exterior, beats the heart of a deep and loving woman. She sees my son for who he is, a unique and contributing individual, not a horrific diagnosis. She is one of the truly special few.

Why was Nicholas so cooperative in class I wondered to myself? Was Weston able to strike fear into his heart? Or was it something else? Did he see something the rest of us could not? Since his birth, Nicholas has developed many beautiful gifts. But the gift that touches me the most, is his innate ability to seek out the individuals who seem to need the most love. He finds the souls in this world who are the most misunderstood, the most tormented or just the most saddened. He finds the Mrs. Bissaillons of the world and speaks to them. Sometimes just with a smile, but more often it is with a warm and enthusiastic "Hello!" The response to his enthusiasm, no matter how tormented, misunderstood or saddened folks feel, is always the same, a smile.

To me, it is as if my son has been sent from above with a very special mission, simply to love the world. There are days when the reality of Prader Willi Syndrome gets me feeling down. It is on those down days that I like to watch my son closely, as he gives his special gift so medicinally to the silent suffers of this world.

And with his unselfish acts of kindness, my silent suffering also comes to an end, at least for a moment.

"Did you hear me?" Mrs. Bissaillon asks, snapping me out of my thoughts and back into reality.
"Yes," I say smilingly, as suddenly she looks very different to me."

Thursday, November 11, 2010

Thankful That We Are Not Alone - Guest #7

My guest blogger today was someone that I found on http://www.downsyndrome.com/, just under a year ago, who had put together a video "if her daughter could say what she was thinking", that I watched and sent to all my friends because it put me in stitches every time...and I found her again recently and have enjoyed reading her blog, http://www.tri21.downsyndrome.com/. Please welcome Laura's reflections on this time of year...

"Well, it's the month of November. With Thanksgiving coming up, I guess it makes all of us stop and think of what we are thankful for in our lives. One of the things I am grateful for is this whole wide world of people I never would have never even known had it not been for my daughter who has Down Syndrome. My world has grown from tiny to huge thanks all to her. It's a weird phenomenon but I am sure most people with somebody in their lives with Down Syndrome can relate to this.

I have always enjoyed my time to myself. I am one of those people who can go to a movie or a fancy restaurant all by myself and not think twice about it. I enjoy my solitude. I still do. (Of course being married with two children, makes these times of solitude few and far between!) Still, I think I am much more "out there" and sociable thanks to my daughter.

When she was born it was so devastating to hear she had Down Syndrome. I called my local county to notify them that I had a special needs child, as I was directed to by...I can't even remember who instructed me to do this! Anyway, soon my home was flooded with social workers, therapists, teachers all trying to help my daughter. It was the BEST thing ever. Not only were they helping her, they were helping me. So often these wonderful people were not just working with my daughter, but also allowing me to verbalize all that I was thinking and feeling at the time. When early intervention ended, I was introduced to a whole new world of people in the school setting.

Then there were the times I was out and about doing errands with my daughter. My daughter is so loving (and cute!) She just draws people to her. It is like she brings out the goodness in people. Now being a mother and an advocate for her and all, I was driven to be so open with these complete strangers. Here is my chance to show people that people with Down Syndrome have so much to offer. I have to open up and be approachable. How could I not?

Other times, I would be out somewhere and I would spot somebody with Down Syndrome, WoooHooo! You would think I spotted a Hollywood celebrity. After a bit of stalking, I usually approach the parent or caregiver of the person with Down Syndrome. Usually, it's like a big family reunion when I tell them my daughter has Down Syndrome, too. Invariable, we wind up talking and talking

Then, of course, there is the internet. I'd say 85% of my Facebook "friends" are people touched by somebody in their lives with Down Syndrome. What a great resource this is! There is even an awesome site: http://www.downsyndrome.com/ where ALL of us blog about our kids, siblings, grandchildren, etc. with Down Syndrome. Between Facebook and this site, there are all these people from around the WORLD all reaching out to each other. We are all boasting, bragging, crying, venting, laughing about all things Down Syndrome."

Tuesday, November 9, 2010

Thankful We Are Not Alone - Guest #6

My next blogger is the mother of one of Elise's very best friends, Megan. She has graciously submitted this piece as a favor to me. Thank you so much, Laura, for sharing!

"I am the proud mother of Megan. She is the prettiest, sweetest, funniest, BRAVEST, & STRONGEST little girl I know. She is now 7 and has been through more in her little life than most adults go through in their entire lifetime! This special little girl has made me a member of the "Mito Mom Club". We, mothers of these precious children, all refer to ourselves as "Mito Moms". It helps us know that we are not alone in our battle of the unknown.

You see, Megan has mitochondrial disease or "Mito" for short. You say, "mito what"? That is exactly what we said when we received her diagnosis back in 2004. Not only had we never heard of it, but we soon found out that it is not only a very serious, progressive, life debilitating disease; also that there are no "proven" therapies. All we could do was treat the symptoms. We give Megan a cocktail of vitamins, medications, and cofactors and pray for the best. There is also no clinic or center to speak of for these disorders and there really is not a whole lot going in research for a cure. Not to mention the lack of awareness. It is hard enough to find out that you have a special needs child, a sick child, but then to learn that you are virtually all alone in the medical world...

It is very hard to believe that they are not trying harder to find answers to the disease when it is linked to so many other diseases. Mito has now been linked to Autism, Parkinson's, Huntington's, and Alzheimer's. You see Mito is also a neurodegenerative disease so we do not know how slow or how fast her progression will be or what this horrible disease will do to her body. Also more research has been showing that it will not be so rare after all...1 in 4000 births will develop a mitochondrial disease by the age of 10. Yes, it can begin later in childhood, even as an adult!

Mitochondrial disease is the result of failures of the mitochondria, the power house of the cell. Mitochondria as responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. These diseases appear to cause the most damage to the cells of the brain, heart, liver, skeletal muscles, kidney, and the endocrine and respiratory systems. This disease also affects each child differently so there is so much unknown about Megan's future. There is no way to predict how or when the progression will take place. We honestly have no idea what is ahead of us.

Megan currently struggles with seizures, central apnea, cognitive delays, GERD, asthma, muscle weakness, speech disorder, movement disorder, atypical autism, balance issues, and a weakened immune system. She cannot eat or drink anything by mouth. She relies on a g-tube for all of her nutrition. She will occasionally eat some yogurt or pudding, maybe an M&M on a good day. The central apnea is the scariest of her issues. Her brain no longer controls her breathing like it should. She will just stop breathing throughout the day and night. During the day you will hear her hyperventilate and that is why...she is catching her breath. She must wear O2 and an apnea monitor at night to ensure her safety. Poor Megan must sleep every night with tubes all around her. Her life...It simply is not fair! I would take her disease from her in a second if I could, but I can't. It pains me to know I can't do anything, but be her advocate, her caregiver, her mommy, and pray, pray, pray!!!

With all her struggles, test, surgeries, illnesses, and fatigue, she is amazing! She is the BRAVEST and STRONGEST person I have ever known. She goes through horrible pain and struggles daily, but you'd never know it. She always has a smile on her face. She is the happiest little girl and loves everyone with all of her heart! She teaches the world around her what REALLY matters in life. Thank you, God, for trusting us with the precious gift of her life. What a blessing she is to us!!"

Thankful That We Are Not Alone - Guest #5

Today's guest is a friend I've made on the great social network of Facebook. Our only original bond was our babies with the surprise gift of Down Syndrome. We have since found that we have much in common and it has been a pleasure to get to know her.

Please enjoy Cara's perspective:

"It always amazes me how our lives can be forever changed in a instant. You are suddenly thrust into that "club" or that "group" that you never signed up for. And as much as you want to hide and run and escape and find another "club" to join, your life is undeniably altered. You know that there is no going back. That is kind of how I felt having Benji. Benji is number six for us, and our whole family could hardly wait for the birth of our third boy! We were thrilled to say the least. The anticipation for him was high and the count down for him was exhausting as he remained in my tummy many days past his due date. But his arrival was perfection and every prayer about his birth was answered. The lights were dim, and the normally noisy house was so quiet and peaceful. It was early, early morning. I remember hearing the faint sound of my two year old's worship music in her room. The pain was more than I thought I could handle as he made his quick debut into the world. I discovered that size does make a difference! There he was - our nine pound, six ounce beautiful baby boy in my arms all cuddly and sweet seeking his mommy's love in return with that addicting newborn smell. It was instant love. We bonded skin to skin, and I knew that I was blessed forever.

I did not know he had Down Syndrome. I knew that something was different than my other five babies, but I could not put my finger on it. But that did not matter; he was my son, a gift from God. I was soaking in every move he made and every breath he took. I was in that state of awe you are in as you welcome your new baby into your family. Down Syndrome was suspected the next day after a discussion with my midwife. It was a very sweet discussion. I learned that my midwife had been praying how to bring up her suspicions to me. God answered her, because I came right out asked her when she came back to check on us that day. I had wondered the next morning after he was born. It was then confirmed by the test around 10 days later.

I want to pause for a moment and say that I have read the birth stories of many mommy bloggers now that have had a range of emotions on learning the news that their babies have Down Syndrome. While I certainly had emotions and can somewhat relate, I never experienced the deep painful emotions or concerns that some women have expressed. I had peace with his diagnosis. I was so thankful for him and even thankful for his having Down Syndrome. Yes, I knew the health issues that we possibly faced, but I really had God's awesome peace about those, not fear. The Lord had prepared my heart in so many ways before he was born, and I am thankful for that. I felt so deeply blessed to be his mommy and did trust God's Word that he was fearfully and wonderfully made, and that He knit him together in my womb perfectly. I did immediately feel a protective feeling for him come over me that I had never quite felt before. And I want to make the point that I do not say any of this by any means to judge how another mama felt. And I certainly do not think that the raw emotions that they have been so open and honest about and kind enough to share are bad. I think the contrast of how I felt that leads up to the rest of this piece.

So, with all that said, I was ready to live my life as we normally did. Yes, I knew that I would be facing some uncharted territory for our family. I knew that therapy was most likely coming I knew that the extra doctors appointments were inevitable. But my focus was not on the Down Syndrome. So, I was more than taken back with many of the reactions from friends and family. That is when it really sunk in that I was now in a different category, so to speak. We were a family now a part of that "group" or that "club". I had people referring me to Down Syndrome support groups. I had people, with I am sure good intentions, thinking that I needed a harsh wake up call for what the future held for our family. I heard lectures on things that would be coming twenty years later. I heard all about the bad news about Down Syndrome. I even had people using the "r" word about him. Now, that did stir up raw emotions in me. So many people seemed to focus on his condition so much. Not everyone, but many. Some of these people had never even met him. I just wanted to enjoy him and be excited for this new life as we all were with all my previous babies. And I was with him daily seeing what he is - a happy, content smiley baby boy that loves to give and receive affection. I witnessed each member of our family with this precious baby. The love that he has brought is worth far above rubies. The gift he is to our family is something I cannot adequately describe with words. He lights up our days.

So, I was also faced with the stares and not knowing what to say to people or when to say it. And everyone you asked had a different opinion about that. And yet, he is just so normal to us. He is just a normal kid with an extra chromosome. It is not much different than having a baby without Down Syndrome, other than the health issues that arise on a more regular basis.

So, here we are, a part of this "group", this "club". And it took me a while to accept that label because I so just wanted to be normal, whatever normal is, right? But I did not want to stand out or have people feel sorry for us or being labelled a particular family. I did not want to enter this world where people were trying so hard to be so politically correct around us. But now I am there - a part of that "club" that I didn't sign up for. But you know what? Oh, how I love, love the other people and kids and families that are a part of this "club" that they also did not sign up for. I wouldn't change a thing. I am so thankful to be in this "club" and I would love to adopt more kids in this "club." And I have learned what people are missing out on are the very special blessings of God. We fret our entire pregnancies about this condition and get tested and sigh a big sigh of relief when they come back negative. We are crazy. Mommies with kids with Down Syndrome know a love that they never thought they could imagine. We know this "club" is a blessing, not a curse. We know how very special our children are and how they touch our lives so. Our world is tainted by a lie. Once we are faced with reality, we realize that we were fooled with a lie. The true freedom comes from realizing the truth and praising God for the blessings He gives us. These children are His creation.

And now I am light hearted about the reactions to Benji. The other day at church, a couple was commenting on him and saying how cute he was. The man said, "Wow, he really has that tongue thing going on, doesn't he?" I had to laugh. He really does have that tongue things going on and it is oh, so adorable!! And I have people coming up to me to see the baby and that stare seems to go on and on followed by that perplexed kind of look. And I am so grateful to call him my son and not be concerned about what they are thinking or what I should say or not say. I celebrate this guy! He is going to change lives, I know. We are so excited to watch him grow and become the kid, and then the man that God has designed for him to be. And I remember what it is like not being in that "club". And I would never go back. God truly knows best."