Just Say No…To Overload
I am still learning the art of saying, “No.” It comes naturally to some. Some people are asked to take on responsibility, and after considering the task or job, they politely say, “No thanks.”
Maybe they blurt out, “No, I’m booked solid!” before the description of the job starts attractively, or often times, unattractively unveiling before them.
If I am asked to take on a new role or responsibility, my active imagination automatically kicks into gear, picturing myself doing the job. I ponder, I rearrange, I organize, until the job becomes my own. All of this happens while the person proposing the job is standing before me wondering where I went inside my blank stare.
It could have been the migraine-type headache I had last night, but I just wasn’t feeling the part of Dance Docent for the kindergarten class. Sure, it sounds like fun, all energetic and smiling type of work, but my head and stomach just weren’t up to the idea today.
I was finished visualizing myself and all the k-tots bouncing along with “do-si-do” and “grab your partners.” Just as I was about to commit, my true friend, energetic and radiant as she is, stepped in and said, “Don’t take on any more.”
Thank you, friend, and thank you God for your Divine Intervention through her. I enjoy teaching sign language once a week. I enjoy working with my kids and spending extra hours on everything else I do. It is okay, and even better, not to be in charge sometimes.
Head and heart happy, I walked to my car with a little extra bounce in my step. I will have to thank my buddy for helping me say, “No.” I can always go to the gym along with the class and dance along, right?
Love,
Diane
Thursday, October 23, 2008
Tuesday, October 21, 2008
Poop Talk with a Happy Ending
I realized that I have been encouraging my daughter to “push” gently ever since she stopped breast feeding. It seemed like the day I introduced solid foods she became constipated, and the story continues. I remember the stool softener mixed with juice in the morning was just a “short term fix” in my mind. Children with Down syndrome have their sluggish systems and lazy bowels, but I haven’t found any quick fix or magical remedy besides trial and error, perseverance, and tons of encouragement.
I remember the camping trip with my family where they saw me dash into the tent twelve to fifteen times in one day to change diaper after diaper when the stool softener loosed enough cargo to spill forth. I can talk this way because it has been my daily grind, my thought pattern, my fear, and my joy. You bet, there is a whole lot of joy when a little child, constipated beyond belief, actually poops. The Steve Martin happy dances, the high fives, the trumpet blasts, the shouts to the entire family, are pretty much common protocol around our house.
Now, at age six, my question is, “When will we get out of Pull-Ups?” I held my aching head with my hands, elbows braced on my knees as I sat on the toddler stool by the bathroom sink. My daughter sat nearby on the throne, blowing softly on the pinwheel, to express the air needed to push a bowel movement out. We weren’t making any progress.
“You can stop blowing, now, sweetie,” I said, “The air you blow is only helpful when you are trying to poop.”
Okay, good effort, but I still felt like her latest withholding was erasing all of the summer’s progress we had made. We had journals of BM’s and Pee; smiley faces and stars marking occasional success. We moved on to daily success when the gastroenterologist recommended two natural laxatives each evening and stool softener in juice in the morning. Real progress, but with a hope that it also was a short-term remedy. We have ruled out allergies and diseases through tests and procedures, built a diet of healthy foods, water, and exercise, but even that doesn’t always trip the trigger.
I went upstairs to get the bedtime routine started. Instead of pushing forward, I scooped my little one up and plopped down on the floor with her in my lap.
“Okay, we need a plan,” I said looking into her scared eyes. “I heard you talking to your sister and we are not going to go back to the doctor.”
“Okay,” she said, looking more relaxed.
“The doctor wants you to do these things at home and at school,” I fibbed.
“Okay,” she said.
“First, the doctor wants you to drink more water,” I added our signature, “Check?”
“Check,” she said.
“Second, the doctor wants you to go to the bathroom as soon as your body tells you to go,” I added, “Check?”
“Check,” she nodded.
“Third, the doctor wants you to eat more…prunes!” I added with tickles, “Check?”
“Check,” she squeaked out, “Check!”
I went to bed praying that the stage we were in wouldn’t last forever. I prayed for her confidence and control to be put to good use in her life. I prayed that any message of frustration or anxiety that I relayed would be forgotten, and that only the message of, “I am here for you,” would stick.
The morning bell went off at 6:00 a.m. with tiny flat-footed steps making there way to our bed.
I heard the sound of her voice, always on my side of the bed, “Mom, I’m awake,” as I felt the arms, legs, and body move their way over my turned face to the middle spot. She burrowed down in the warm abyss between my husband and me.
“Mom, I’m so hungry,” she said. A sure-fire plan to get me out of bed, she thought.
I knew what was coming next, her delicate, beckoning, “Mom, get up!”
“All right, I’m up,” I said. I kissed her head, and felt my own head still pounding slightly. A shower, some coffee, a fresh start was just what we needed.
I made the “Popeye” egg and toast as requested, served with stool softener, fiber powder, and juice. “Mom, sit with me,” she said, as she served me a taste of her breakfast.
“Umm, great,” I said, wondering when the timing would strike.
After breakfast we went through her mental checklist that helps organize her transitional exit to the car. “Are you dressed, check? Teeth brushed, check? Hair brushed, check? Socks on too, check? Shoes…,”
One look at her face, master of control that she is, I could see that the time was opportune to run to the bathroom. I scooped her up underneath her arms and ran-walked her to the bathroom. “Hurry, you can do it!” I shouted, “Blow stick out…,”
“It’s coming…,” she said, blowing her pinwheel with real effort, and seconds later she added, “And, that’s it.”
Her face beamed with success as we connected our high five and I did my happy dance. We started a new sheet for the collection of her pumpkin stickers that would eventually buy her a day at the park, or that pink soccer ball she wanted. We would chart away and continue to keep our heads on when the going got a little tough.
I remember the camping trip with my family where they saw me dash into the tent twelve to fifteen times in one day to change diaper after diaper when the stool softener loosed enough cargo to spill forth. I can talk this way because it has been my daily grind, my thought pattern, my fear, and my joy. You bet, there is a whole lot of joy when a little child, constipated beyond belief, actually poops. The Steve Martin happy dances, the high fives, the trumpet blasts, the shouts to the entire family, are pretty much common protocol around our house.
Now, at age six, my question is, “When will we get out of Pull-Ups?” I held my aching head with my hands, elbows braced on my knees as I sat on the toddler stool by the bathroom sink. My daughter sat nearby on the throne, blowing softly on the pinwheel, to express the air needed to push a bowel movement out. We weren’t making any progress.
“You can stop blowing, now, sweetie,” I said, “The air you blow is only helpful when you are trying to poop.”
Okay, good effort, but I still felt like her latest withholding was erasing all of the summer’s progress we had made. We had journals of BM’s and Pee; smiley faces and stars marking occasional success. We moved on to daily success when the gastroenterologist recommended two natural laxatives each evening and stool softener in juice in the morning. Real progress, but with a hope that it also was a short-term remedy. We have ruled out allergies and diseases through tests and procedures, built a diet of healthy foods, water, and exercise, but even that doesn’t always trip the trigger.
I went upstairs to get the bedtime routine started. Instead of pushing forward, I scooped my little one up and plopped down on the floor with her in my lap.
“Okay, we need a plan,” I said looking into her scared eyes. “I heard you talking to your sister and we are not going to go back to the doctor.”
“Okay,” she said, looking more relaxed.
“The doctor wants you to do these things at home and at school,” I fibbed.
“Okay,” she said.
“First, the doctor wants you to drink more water,” I added our signature, “Check?”
“Check,” she said.
“Second, the doctor wants you to go to the bathroom as soon as your body tells you to go,” I added, “Check?”
“Check,” she nodded.
“Third, the doctor wants you to eat more…prunes!” I added with tickles, “Check?”
“Check,” she squeaked out, “Check!”
I went to bed praying that the stage we were in wouldn’t last forever. I prayed for her confidence and control to be put to good use in her life. I prayed that any message of frustration or anxiety that I relayed would be forgotten, and that only the message of, “I am here for you,” would stick.
The morning bell went off at 6:00 a.m. with tiny flat-footed steps making there way to our bed.
I heard the sound of her voice, always on my side of the bed, “Mom, I’m awake,” as I felt the arms, legs, and body move their way over my turned face to the middle spot. She burrowed down in the warm abyss between my husband and me.
“Mom, I’m so hungry,” she said. A sure-fire plan to get me out of bed, she thought.
I knew what was coming next, her delicate, beckoning, “Mom, get up!”
“All right, I’m up,” I said. I kissed her head, and felt my own head still pounding slightly. A shower, some coffee, a fresh start was just what we needed.
I made the “Popeye” egg and toast as requested, served with stool softener, fiber powder, and juice. “Mom, sit with me,” she said, as she served me a taste of her breakfast.
“Umm, great,” I said, wondering when the timing would strike.
After breakfast we went through her mental checklist that helps organize her transitional exit to the car. “Are you dressed, check? Teeth brushed, check? Hair brushed, check? Socks on too, check? Shoes…,”
One look at her face, master of control that she is, I could see that the time was opportune to run to the bathroom. I scooped her up underneath her arms and ran-walked her to the bathroom. “Hurry, you can do it!” I shouted, “Blow stick out…,”
“It’s coming…,” she said, blowing her pinwheel with real effort, and seconds later she added, “And, that’s it.”
Her face beamed with success as we connected our high five and I did my happy dance. We started a new sheet for the collection of her pumpkin stickers that would eventually buy her a day at the park, or that pink soccer ball she wanted. We would chart away and continue to keep our heads on when the going got a little tough.
Tuesday, October 14, 2008
Support to Grow On
I reclined in the dentist chair with my mouth wide open, mouthguard in place, and safety glasses on. You would think I was preparing for some outrageous adventure, and not updating the existing version of a filling in my mouth. My hands lay in a restful pose on my stomach. My friend, and dentist, chattered away about the things she knew I was involved in as she prepared to give my Novocain injections. She told me I was an inspiration to her to get out in the community and give her time and expertise to those who need it most.
I completely agreed and voiced my muffled, "Ah, hah," as best I could.
My skilled dentist continued to work and speak to me about the passion required.
"Yah," I said, trying not to nod my head with her instruments working away in my mouth.
She continued her train of thought and voiced the need for a huge time commitment as well to give service.
"Uh, huh!" I replied, raising my eyebrows expressively while trying not to sweat under the lamp. I wished I could use my hands to communicate with my limited, but useful sign language skills, that the time she had to give would be sufficient. Volunteering for your cause need not consume your life, unless it is your life, as I often feel it is in my own. Sharing your passion and strengths could take as little as an hour a week, or fifteen minutes, or even the flash of a smile at someone who needs it. My friend, Shari, adds her light of love to a store clerk she sees each week by smiling at the checkout. The store clerk stopped scanning food long enough to tell her that she was the best part of her day. How long did all of that take?
My dentist stopped mid-motion to realize the "Ah, Hah!" moment in this picture. "What you need is a really good support team at home," she continued, "Diane, you have a great support team in place at home, right?"
"Bingo!" I thought, as I voiced, "Ahhhh." My husband, my wonderful support, who barbecues chicken at our Buddy Walk for Down syndrome all day, who does dishes, who loves me and hugs my heaps of worries and fatigue at times, who gets involved with my mentoring program by overseeing the coaching of ten tiny rug rats on the soccer field...Yep, my support is pretty awesome! He's the one who holds my hand when we hike without words. Our separate conversations in our minds mingle with integrated thoughts about life, work, and kids. He's the one I bounce off every crazy idea and "what if" I've got. He's also the one who tells me to put my hand down when I want to volunteer to sharpen all the pencils, too. He often knows my limits better than I do, but sometimes I do things anyway just to prove that I have enough drive and passion to see it through.
By the time the dental procedure was finished, and all of the garb removed, I could have said all that I was thinking. I stood up and faced my friend and couldn't remember a single comment. All that I wanted to walk away with was the thought about my support at home. My support gives me inspiration. That inspiration helps me go on...and keep growing on.
I completely agreed and voiced my muffled, "Ah, hah," as best I could.
My skilled dentist continued to work and speak to me about the passion required.
"Yah," I said, trying not to nod my head with her instruments working away in my mouth.
She continued her train of thought and voiced the need for a huge time commitment as well to give service.
"Uh, huh!" I replied, raising my eyebrows expressively while trying not to sweat under the lamp. I wished I could use my hands to communicate with my limited, but useful sign language skills, that the time she had to give would be sufficient. Volunteering for your cause need not consume your life, unless it is your life, as I often feel it is in my own. Sharing your passion and strengths could take as little as an hour a week, or fifteen minutes, or even the flash of a smile at someone who needs it. My friend, Shari, adds her light of love to a store clerk she sees each week by smiling at the checkout. The store clerk stopped scanning food long enough to tell her that she was the best part of her day. How long did all of that take?
My dentist stopped mid-motion to realize the "Ah, Hah!" moment in this picture. "What you need is a really good support team at home," she continued, "Diane, you have a great support team in place at home, right?"
"Bingo!" I thought, as I voiced, "Ahhhh." My husband, my wonderful support, who barbecues chicken at our Buddy Walk for Down syndrome all day, who does dishes, who loves me and hugs my heaps of worries and fatigue at times, who gets involved with my mentoring program by overseeing the coaching of ten tiny rug rats on the soccer field...Yep, my support is pretty awesome! He's the one who holds my hand when we hike without words. Our separate conversations in our minds mingle with integrated thoughts about life, work, and kids. He's the one I bounce off every crazy idea and "what if" I've got. He's also the one who tells me to put my hand down when I want to volunteer to sharpen all the pencils, too. He often knows my limits better than I do, but sometimes I do things anyway just to prove that I have enough drive and passion to see it through.
By the time the dental procedure was finished, and all of the garb removed, I could have said all that I was thinking. I stood up and faced my friend and couldn't remember a single comment. All that I wanted to walk away with was the thought about my support at home. My support gives me inspiration. That inspiration helps me go on...and keep growing on.
Friday, October 10, 2008
God's Inspired Plan
The plump nun paced in front of the rows of desks fitted in her starched dress and habit. She was invigorated by her lunch and her message to be delivered in religion class today. Sister Marie wore pink rimmed glasses with blush pink colored lenses that accentuated her pasty pale skin. Ridged rows of aged teeth hid behind Chapstick-laced lips. Her thin white hair slicked into position, exposed comb track marks of gelled perfection that disappeared behind her raised habit.
She was an experienced master of the eighth grade, as she reminded us often of her military school training. She was ready. The urge to deliver the “Divine Calling” lesson had a potent purpose: to communicate and instill a deep discernment in each one of us, attentive by demand.
Sister “Pink Eyes” met each of our fixed gazes and vocalized the question she was bursting out of her robust seams to ask, “Is God calling you?”
I shifted ever so slightly, desperate not to draw attention to my thin twelve-year-old frame, as I moved my weight from one cheek to other on the hard-butt metal rimmed fixed wooden desk. I struggled to listen, and I might have heard something, but it was only Sister rephrasing her question by saying, “It may be a small voice, at the back of your head…A whisper.”
Had I heard it? I wondered. I couldn’t be sure. Was God asking me to become a nun and be what I saw before me in pink glasses and dominating authority? I wasn’t even sure she liked kids, much less teaching them.
I cut a deal right then and there. “God, it’s me,” I said, “I’ve got a plan.”
The wheels were burning tread in my mind. I had to talk fast to get my point across. “Please let me grow up and find a good husband, “I begged. I risked looking over at Joe, picking his cuticles, then Tony, in his relaxed handsome glory. “Bill would be all right,” I settled, “He’s nice enough.”
I thought more about my calling and added, “Oh, and let me teach. I will raise children in my own family, in school, and all over, but let me teach and love children without being a nun!”
And God said, “Yes.”
The year I turned twenty-two I met my future husband, kind and handsome, and I prayed that God would give us the strength we needed to have a blessed marriage.
And God said, “Yes.”
At twenty-seven I asked for healthy children, children that would grow up to contribute and lead loving lives in service to the Lord.
And God said, “Yes.”
I taught for seventeen years, every grade from kindergarten to sixth grade, loving and learning from each child. During my third pregnancy at the age of thirty-nine I asked God to bless my child and give me the strength to do His will.
And God said, “Yes.”
When the blood test came back positive at twenty weeks, and the ultrasound confirmed that I was carrying a child with a congenital heart defect and the possibility of Down syndrome, God asked me, “Will you love this child?
And I said, “Yes.”
That answer felt like a load of questions and fears had been dropped in my swollen lap. I relied on faith to persist and face each challenge, with the help of family and friends.
I glanced over my life and saw that all along I had been building a relationship with God. This friend of mine was not as scary to me as Sister Marie made him sound. He was a trusted, close friend, one I talked with often and I felt the comfort of his presence in my life.
So when I held my infant girl, just one-month-old asleep in my lap, I felt I had every right to give my friend, my God, every ounce of pain I was carrying back in his face.
“Why?” I screamed, “Why me? Why did you choose me to have this child?”
“You said, yes,” God answered.
“Well, I’m going to need some help!” I yelled back at him, “I need your help to raise this baby in our family, and help others in our community.”
God said, “That is what you were meant to do.”
I felt his message solidify in my bones. My body relaxed from its tense position and my soul was at peace. I relaxed against the faded green couch and velvety eggplant colored pillows. I lifted my little girl to my face and kissed her sweetly formed lips, her low bridge on her nose, and her curved eyelids with extra folds of soft skin. My precious baby, God knew exactly what he was doing when he created her. I returned to the classroom of my twelfth year for an instant and remembered the whisper I heard....I didn’t have the answers, or the plan laid out in a map before me. I just knew God would walk with me. His loving guidance had always been a part of my life and I could trust that his presence would be part of my future, one small step at a time.
love,
Diane
She was an experienced master of the eighth grade, as she reminded us often of her military school training. She was ready. The urge to deliver the “Divine Calling” lesson had a potent purpose: to communicate and instill a deep discernment in each one of us, attentive by demand.
Sister “Pink Eyes” met each of our fixed gazes and vocalized the question she was bursting out of her robust seams to ask, “Is God calling you?”
I shifted ever so slightly, desperate not to draw attention to my thin twelve-year-old frame, as I moved my weight from one cheek to other on the hard-butt metal rimmed fixed wooden desk. I struggled to listen, and I might have heard something, but it was only Sister rephrasing her question by saying, “It may be a small voice, at the back of your head…A whisper.”
Had I heard it? I wondered. I couldn’t be sure. Was God asking me to become a nun and be what I saw before me in pink glasses and dominating authority? I wasn’t even sure she liked kids, much less teaching them.
I cut a deal right then and there. “God, it’s me,” I said, “I’ve got a plan.”
The wheels were burning tread in my mind. I had to talk fast to get my point across. “Please let me grow up and find a good husband, “I begged. I risked looking over at Joe, picking his cuticles, then Tony, in his relaxed handsome glory. “Bill would be all right,” I settled, “He’s nice enough.”
I thought more about my calling and added, “Oh, and let me teach. I will raise children in my own family, in school, and all over, but let me teach and love children without being a nun!”
And God said, “Yes.”
The year I turned twenty-two I met my future husband, kind and handsome, and I prayed that God would give us the strength we needed to have a blessed marriage.
And God said, “Yes.”
At twenty-seven I asked for healthy children, children that would grow up to contribute and lead loving lives in service to the Lord.
And God said, “Yes.”
I taught for seventeen years, every grade from kindergarten to sixth grade, loving and learning from each child. During my third pregnancy at the age of thirty-nine I asked God to bless my child and give me the strength to do His will.
And God said, “Yes.”
When the blood test came back positive at twenty weeks, and the ultrasound confirmed that I was carrying a child with a congenital heart defect and the possibility of Down syndrome, God asked me, “Will you love this child?
And I said, “Yes.”
That answer felt like a load of questions and fears had been dropped in my swollen lap. I relied on faith to persist and face each challenge, with the help of family and friends.
I glanced over my life and saw that all along I had been building a relationship with God. This friend of mine was not as scary to me as Sister Marie made him sound. He was a trusted, close friend, one I talked with often and I felt the comfort of his presence in my life.
So when I held my infant girl, just one-month-old asleep in my lap, I felt I had every right to give my friend, my God, every ounce of pain I was carrying back in his face.
“Why?” I screamed, “Why me? Why did you choose me to have this child?”
“You said, yes,” God answered.
“Well, I’m going to need some help!” I yelled back at him, “I need your help to raise this baby in our family, and help others in our community.”
God said, “That is what you were meant to do.”
I felt his message solidify in my bones. My body relaxed from its tense position and my soul was at peace. I relaxed against the faded green couch and velvety eggplant colored pillows. I lifted my little girl to my face and kissed her sweetly formed lips, her low bridge on her nose, and her curved eyelids with extra folds of soft skin. My precious baby, God knew exactly what he was doing when he created her. I returned to the classroom of my twelfth year for an instant and remembered the whisper I heard....I didn’t have the answers, or the plan laid out in a map before me. I just knew God would walk with me. His loving guidance had always been a part of my life and I could trust that his presence would be part of my future, one small step at a time.
love,
Diane
Sunday, October 5, 2008
The Day After Our 4th Annual Buddy Walk
Dear Friends,
I write today because I cannot contain the joy, the love, and the strong connection community brings. Yesterday was our 4th Annual Buddy Walk for Down Syndrome. We had the template on our minds for a year, with organization starting six months ago. As chairperson of this event, my responsibilities covered securing permits to organizing a committee of five. The jobs unclaimed, weighed on my shoulders; the sponsors, the caterer, the nonprofits for the Resource Fair, the details of pulling an event for 600 people together.
The detailed work and communications, the "To Do" lists spilled in organized piles across my desk, the stress of securing two portable toilets and a sink-washing station just six days prior to our event...all were silent when I received the phone call from a woman who got my number from a genetic counselor. My mind stopped tallying up lists and actively listened to her voice. I resonated with her tentative words and sat down in a comfortable chair at my dining room table. I was there for her, completely and honestly hers, to listen and to respond to her.
I had experienced sitting in a genetic counselor's office and being told the news about my baby's AFP (Alpha Fetal Protein) blood test. I had seen the ultrasound images of my baby's heart with the congenital defect, called AV Canal. I had made the choice to wrap my arms around my belly and hold on to my child with a stronger conviction to maintain a healthy attitude about my pregnancy of 20 weeks. Oh, I was there for her. This woman would make it. Her baby, her husband, her family would all make it, too. And, I said a silent prayer that God would change their lives for the better of a result of this child.
Our committee arrived at the darkened park at 6:00 a.m., our usual time for set-up for our Buddy Walks in the past. The rain poured all night, but left us feeling hopeful for a clear day. The gazebo area was the only lit area, and we used it as the hub of activity for storing all of the boxes, tents, and tables as they were unloaded from the truck. By 6:20 a.m. the sprinkles started. My hood went up and my jacket remained open. By 6:30 a.m. the sound of pounding rain pulled on my heart strings, "Lord, this is your day. Let this turn out for all of the children and parents coming today."
We shifted our game plan in a moment's notice. We set up one tent at a time, one person on each corner, inside the gazebo. We carried the tent outside in the rain and extended the poles to the full height, clicked into place, and began again with a new tent. Ten tents surrounded the gazebo area making the space much larger and safe from drenching rain. I noticed the light of day outside when we had finished this task. The lanterns we had brought were turned off. The volunteers were starting to stream in and assemble in specific areas. By 10:00 a.m. the registration tables, the carnival games, the nonprofits for the Resource Fair, and the food line was set up for operation. The sun started breaking through the clouds as a sign that our trust was exactly what was needed.
I met Laura at 10:30 a.m. She was bright and shining with pregnant radiance. We hugged and I knew exactly why we worked as hard as we do to bring all of these families together. I hugged her husband, James, and told him he would feel like a part of a new family today. Each passing parent I knew was introduced and asked to share their story with this new family. I moved away to check in at different areas, to hug, to greet, to catch up with friends and family I hadn't seen for a while.
The high school seniors we are mentoring this year to work with our support group were with us all the while. They showed up: one with a sore throat, and before the soccer game he would coach, one before her SAT test, one ready to go for the day, and three more after their SAT's. They worked with us, doing carnival jobs, food line, and talent show intermission facts about Down syndrome. They played, they danced, they smiled, and they hugged. At the very end of the day we stood around a woman who had just had her 60th birthday in April. Her name was Gail, and she had Down syndrome. I introduced the students and told them special things that I had learned that day about this woman. I knew she loved to dance. Her wonderful aunt and friend were with her to share the day and learn even more about ways to enhance her life and advocate for her.
Before we said good bye I asked the seniors if they wanted a chance to hug this wonderful woman. Each one took their turn, as tears formed in my eyes. We had all been given a beautiful gift today. The rain that drew us close together, the sunshine that paved the way for our one-mile walk, the delicious catered Mexican food, and the connection of many hearts through the children and adults with Down syndrome and all of the community of friends.
love,
Diane
I write today because I cannot contain the joy, the love, and the strong connection community brings. Yesterday was our 4th Annual Buddy Walk for Down Syndrome. We had the template on our minds for a year, with organization starting six months ago. As chairperson of this event, my responsibilities covered securing permits to organizing a committee of five. The jobs unclaimed, weighed on my shoulders; the sponsors, the caterer, the nonprofits for the Resource Fair, the details of pulling an event for 600 people together.
The detailed work and communications, the "To Do" lists spilled in organized piles across my desk, the stress of securing two portable toilets and a sink-washing station just six days prior to our event...all were silent when I received the phone call from a woman who got my number from a genetic counselor. My mind stopped tallying up lists and actively listened to her voice. I resonated with her tentative words and sat down in a comfortable chair at my dining room table. I was there for her, completely and honestly hers, to listen and to respond to her.
I had experienced sitting in a genetic counselor's office and being told the news about my baby's AFP (Alpha Fetal Protein) blood test. I had seen the ultrasound images of my baby's heart with the congenital defect, called AV Canal. I had made the choice to wrap my arms around my belly and hold on to my child with a stronger conviction to maintain a healthy attitude about my pregnancy of 20 weeks. Oh, I was there for her. This woman would make it. Her baby, her husband, her family would all make it, too. And, I said a silent prayer that God would change their lives for the better of a result of this child.
Our committee arrived at the darkened park at 6:00 a.m., our usual time for set-up for our Buddy Walks in the past. The rain poured all night, but left us feeling hopeful for a clear day. The gazebo area was the only lit area, and we used it as the hub of activity for storing all of the boxes, tents, and tables as they were unloaded from the truck. By 6:20 a.m. the sprinkles started. My hood went up and my jacket remained open. By 6:30 a.m. the sound of pounding rain pulled on my heart strings, "Lord, this is your day. Let this turn out for all of the children and parents coming today."
We shifted our game plan in a moment's notice. We set up one tent at a time, one person on each corner, inside the gazebo. We carried the tent outside in the rain and extended the poles to the full height, clicked into place, and began again with a new tent. Ten tents surrounded the gazebo area making the space much larger and safe from drenching rain. I noticed the light of day outside when we had finished this task. The lanterns we had brought were turned off. The volunteers were starting to stream in and assemble in specific areas. By 10:00 a.m. the registration tables, the carnival games, the nonprofits for the Resource Fair, and the food line was set up for operation. The sun started breaking through the clouds as a sign that our trust was exactly what was needed.
I met Laura at 10:30 a.m. She was bright and shining with pregnant radiance. We hugged and I knew exactly why we worked as hard as we do to bring all of these families together. I hugged her husband, James, and told him he would feel like a part of a new family today. Each passing parent I knew was introduced and asked to share their story with this new family. I moved away to check in at different areas, to hug, to greet, to catch up with friends and family I hadn't seen for a while.
The high school seniors we are mentoring this year to work with our support group were with us all the while. They showed up: one with a sore throat, and before the soccer game he would coach, one before her SAT test, one ready to go for the day, and three more after their SAT's. They worked with us, doing carnival jobs, food line, and talent show intermission facts about Down syndrome. They played, they danced, they smiled, and they hugged. At the very end of the day we stood around a woman who had just had her 60th birthday in April. Her name was Gail, and she had Down syndrome. I introduced the students and told them special things that I had learned that day about this woman. I knew she loved to dance. Her wonderful aunt and friend were with her to share the day and learn even more about ways to enhance her life and advocate for her.
Before we said good bye I asked the seniors if they wanted a chance to hug this wonderful woman. Each one took their turn, as tears formed in my eyes. We had all been given a beautiful gift today. The rain that drew us close together, the sunshine that paved the way for our one-mile walk, the delicious catered Mexican food, and the connection of many hearts through the children and adults with Down syndrome and all of the community of friends.
love,
Diane
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