28 September - Take Inventory, Defy and Renew

"Are you in a funk?" he asked. I smiled at my husband and asked, "Why?" Was it because I was two blog entries behind? Or that we were staring at the four loads of laundry still sitting on our tufted chocolate chaise in our bedroom? The underwear were now spilling onto the cream shag rug, which my husband called a game of Go Fish. "Is THIS my matching black sock? Nope. Go fish." My answer was "no, moreso uninspired." My blog became the antithesis of what I intended...a chore versus an inspiring task. In setting up this personal project, I knew myself too well. Anyone can set out to learn or try something new, but the blog was to represent a commitment, documented for no one but myself - a public diary to keep me accountable.

I realized it was time to just be. Exist. Take inventory and soak in where I was in my life. Deadline shmeadline. It was MY blog, for crying out loud. I knew if I just let myself be open, my senses would heighten and I would become more aware and open to receiving...whatever I was meant to. Therefore, appreciation and answers would begin to fill my cup. So I listened.

The week started with a Facebook note my friend wrote about decluttering. Declutter your body from poisons, your life from the noise and your circle of false friendships. It made me evaluate the lethargy I was feeling and what I could do to change it. What were the poisons from my life that were distracting me from my focus? Who was dear to me versus who held me dear? Whom had I cared for unconditionally and who was absent or judgmental in my time of need? I remembered that life is too short. Love them anyway, but declutter.

Then, remember where you came from. I sat in the kitchen, prolonging Mom's departure back home. The anticipated void began to create its warm nest in my stomach. She began her incredible storytelling over our ritual breakfast - oatmeal, coffee and tea. I interviewed her about her childhood. Her expressions, role playing, laughter and character lines that bring to life her history...of the innocent trouble she would start but blame her sister; the Japanese regime that made her family flee to the mountains and travel by night; the joys of jam sessions and teenage love; her growing up in poverty which set the path of a determined well-paying, adventurous nursing career; saving my dad's life in Laos during their tenure at "Operation Brotherhood"; to becoming the mother my friends always longed for...all without a mother of her own. How did she find the strength, clarity and wisdom? I documented these stories in tears, remembering the fabric from which I was cut and created. I will always remember this, our coffee, tea and oatmeal ritual.

In order to appreciate, you have to look where you have been. I re-evaluated my benchmark and what this year brought me so far…jumping in Lake Michigan with the polar bears and friend Burkle, visiting my former dojang to learn a new weapon form, surfing in the Shark Capital of the World, singing with Broadway's Christine from Phantom of the Opera, to playing sous chef to Top Chef Winner Stephanie Izard. More importantly, I had the fortune to visit with the elderly, feed the hungry and clothe those getting off their feet and seeking employment. I have met incredible people on this trip, including TV executives interested in what I had to say.

And most importantly, where I landed in this past year’s search brought me … home. All came full circle when I realized I already have all that I need -- an incredible husband, family (which includes friends) and God. So how horrific to be ... uninspired?? Indeed, the purpose of documenting in the form of a blog was for times like these. To remember.

I decided to mark this week with something I won't forget. A DEFY bag with my logo. My former advertising buddy and roommate Julie from Chicago sent me a link of her husband's new line of messenger bags made from recycled billboard vinyl. I perused and found my favorite. The Letterpress image would represent my writing, with my blog logo to remind me of the trail behind me and the path yet ahead.

Lastly, what better way to end the week than with a Women's Retreat. I always wondered what happened at these things. Do we all have mirrors and look at our privates like in “Fried GreenTomatoes?” Uh...not at all. As I walked in nonchalantly and made mental profiles of each woman, I found myself choked up within the first hour. I sat in a room of attorneys, artists, moms, superintendents, accountants, athletes.... And for the sake of keeping it sacred for the next group, I will not divulge what brought me the peace, intimacy and renewal needed in walking away. In listening and talking with these women, I heard key phrases like, "people should never assume they understand another's situation or hardship"; “there are no problems, only creative solutions”; “above all, persevere”; “when I was open to the doors being opened, I was pushed to where I was afraid to go.” These were stories of overcoming and empowerment.

I ended the week in gratitude, decluttering, making peace with the past, feeling cleansed and renewed. Ironically, today's quote of the day on this blog is "Life isn't about finding yourself. Life is about creating yourself." – George Bernard Shaw.

For more information on recycled Defy messenger bags, please visit www.defybags.com.

21 September - Habitat for Humanity

As I turned onto the correct street, I was hoping I was wrong. I checked the addresses as I slowly crept along. I made a U-turn in front of my assigned address and parked my car. The house was boarded up. I looked for any sign of life on the premises. As I was making myself very aware of my surroundings and double-checking what was visible in my car from passersby, a blue hatchback with booming music turned the corner and slowed down as it passed my car. It backed up until it was even with me and honked its horn. My heart stopped. I made no eye contact, pretending to search for something that didn’t exist. A man came out of the house I parked in front of and caught his ride, which was patiently waiting.

I brought my camera, wallet and phone and walked to the back of the house. “Hello?” No one answered. This was my first Habitat for Humanity assignment located northwest of downtown Milwaukee. I just kept reminding myself that I was here to do something for someone else. If I didn’t resurface in the process, then it was karma for me. But I realized I never told ANYONE where I was…not even my husband. So I sent a Facebook status of my whereabouts and began receiving texts and phone calls of people checking up on me. (Thank you, by the way. Means more than you know.) I walked back outside to find two women carrying paint buckets and rollers. I introduced myself and met Sara and Rebecca (pseudo name to protect her identity.)

Sara was the Habitat for Humanity site coordinator. I found that she was actually from AmeriCorps and applied to be a part of Milwaukee’s HFH project. She is only 23 and arrived two weeks before, from her native Cleveland. We chatted of how she began in non-profit construction through a mission trip in high school. She assisted on HFH projects in college and pursued a Sociology degree. This seems to be her passion at this stage, as the reality of what she committed to for this year is only began to set in. I asked if she ever feared for her safety. “I live in a neighborhood a little nicer than this, but yes, at first it was scary…walking to my car or to my door. When we are working on a home, we cannot leave anyone alone. We lock the doors if we are upstairs because there have been people who come in and steal things.” Great. Note to self, as I looked to Rebecca and asked, “Got that?”

Rebecca and I spent the whole day together. She seemed somewhat guarded, between 45-50 years old. She told me she was unemployed, but coming to projects such as these is better for her sanity than staying at home. She opened up about her past and beamed when she shared, “But I DID finish high school.” I found myself in a shameful state. So many, myself included, have the fortune to get up and do whatever we please, have a workplace to go, financial worries are not as much a concern, and still, we search for something to satiate… something. Here is a woman who would simply like to work and be busy. She comes to a site just to avoid sitting idle.

She told me of her dreams to begin her own business, as she taught me aspects of her trade and joked about my inconsistent ability in painting the ceilings. I could tell she was conscientious; she could tell I was a goofball. She took pride in her work…even if it were someone else’s home – a stranger, nonetheless. Rebecca shared that she used to work near my current address for over 15 years. The father of her two children still lives in the area with her daughter, but she moved to Milwaukee with her son. She shared some personal things with me, including her son currently serving time in jail. She was regretful of her parenting, perhaps enabling him and didn’t have enough work to keep him busy and out of trouble. I told her parents can only do so much. There comes a time when kids become adults too.

When we continued to talk about family, life and prospects of employment, she shared that she has a felony status. No worries – nothing what you may be thinking. Although, now that I think of it, I never pressed to know what the charges were. It was not any of my business, but hers to share if she chose. We talked with Sara about the potential of Rebecca joining forces with HFH. It seemed her questions showed a slight fear of acceptance and how to work with others. I hugged her, told her this might be the perfect fit for her and that she would never know unless she tried. As I was leaving, she asked, “Will we see each other again?” I told her that I hoped so, and gave her my phone number in case she ever needed anything.

I returned a few days later for a second project, but did not see Rebecca. This home was actually closing that day, so I was privileged to actually meet the homeowners and their interpreter. I was wondering how they found Milwaukee all the way from Africa several years prior. They did not…their government did. They and their children sought refuge and placement to flee from horrible conditions. Hearing the personal horror and torture of Congolese friends David and Regina Bakala, I could only imagine. Glad to witness the difference HFH makes in different pockets of the world. And the smile and laughter this home brought to this family.

I ended the week more appreciative for where I am in my life. I heard a priest once say, “Life will not turn out the way you expect it to. Accept that and know you will be okay. But remember: it is still darn good.” It’s true…take the bad, but make it good. Or at least find the good. It’s all there. So I spent an evening with friends more refreshed and rejuvenated. We celebrated Milwaukee’s inaugural Film Festival at the Discovery World. And ended the week with date night. Of course I have to include some element of food. My husband took me to Chicago’s Sepia in the West Loop. We spent the evening catching up on our week, epiphanies within our relationship, giggling and sending silly texts, acting like kids once again. After an incredible meal, clean plating, pure flavor profiles, we ended with dessert at Jose Garza’s Mercat. We reflected about so many things in our world, and are grateful for it all. I have to say, it was the best birthday to date.

For more information, please visit http://www.americorps.gov/, http://www.habitat.org/, http://www.saveregina.org/, http://www.sepiachicago.com/.

7 September - An Evening with a New Friend - Executive Chef Michael Feker, Il Mito

When I walked in, I didn't see my party straightaway, but I poked my head into the private dining area to meet our head chef Michael Feker and his assistant, Jed. We exchanged pleasantries, then jokes and I think I ended with my Molly Shannon "Supah Stah" pose. Chef Michael and Jed chuckled and said, "This will be a fun night. Take your time. This is your evening to enjoy."

I found the rest of the ladies at Il Mito's regular bar as the rest of us trickled in to celebrate Amy's 40th birthday. This was the first time my core friends were reconvening in quite some time. I missed the camaraderie these women provide. Their kindness and authenticity provide such a safe haven that I am grateful for, especially when enduring the ups and downs of life…. After catching up, we headed into Il Mito's Cooking School to dine at the Chef's Counter.

I had never been to the Chef's Counter, nor this location before. And I have to say I have never enjoyed learning from someone so vibrant, humble and passionate about living his dream and generous enough in allowing us to be a part of it. We found our individual name cards and personalized menu at our seats.

Our three-course meal this evening was:

Tuscan Asparagus and Mushroom Salad with Watercress, Lemon Parmesan Dressing and Scrambled Eggs
Freshly Made Tortelloni, Stuffed with Ricotta and Beef Tenderloin in a Mediterranean Roasted Vegetable Ragu
Chocolate Torte with Espresso Whipped Cream, Fresh Berries and Chocolate Sauce

As he began preparing the salad, Chef Michael was a wealth of information in feeding us tidbits of his culinary passion as he performed. I did not realize this was going to be so much fun and like an actual class. He shared his philosophies, that cooking is not rocket science but passion science, and using the chemistry of the ingredients is what makes the whole equation work. Little tidbits like watercress was going to be the next super food because of its high antioxidant content...how we throw salt in the boiling water to season pasta because of the window of time allowed when its pores open...how when we cook with excellent (organic/fresh) ingredients, 3/4 of the work is done for us, as he scrambled our orange-in-color organic eggs to top off the watercress asparagus salad. He shared with us the difference between black and white pepper and when using each, they co-mingle and play with different parts of our palates.

What I found even more interesting was his background. Chef Michael is Iranian in descent. He grew up in Switzerland from the ages of seven to 18. In following his father's wishes, he pursued pre-medicine and moved to Los Angeles. Chef Michael knew this was not for him. He stayed in dental school until he visited his sister in San Francisco. While searching for a more gratifying route in life, his older siblings encouraged him to research the California Culinary Academy (CCA) to fulfill his interest in cooking. He knew this was what he wanted to do for the rest of his life...but was afraid to tell his father. His siblings 10 years his senior, were the buffer and explained to their father about his switch in careers. When asked if Chef Michael were around for the conversation, he joked, "Are you kidding? I got the heck out of there!" He continued to share many rich and poignant stories about his childhood, father, family and background. “We are so blessed here (in the States). I am grateful for the cleanliness, the water we drink…. I have been through a lot but that is what makes character. I squeeze the passion (from life) to absorb more.” We were honored to witness these incredible tales.

To get his feet wet, Chef Michael took an apprenticeship under Chef Jean Francois Metenier at L’Orangerie in Los Angeles. Upon enrollment at the CCA, he was mentored by a gentleman named Roberto Gerometta. He fell in love with the discipline and quickly became one of the top students. He was one of eight individuals invited to cook for Master Chef Jacques Pepin and Julia Child. Chef Michael put his best foot forward, flabbergasted and humbled at this opportunity to cook for these culinary greats and recalls the day vividly with the same enthusiasm. This tale in particular had us chuckling (ask him about it next time you take a class or attend a dinner.) He continued building his knowledge base, working on the Royal Viking Cruise Line, side-by-side Master Chefs who would board at various ports.

His training is classical French. One can tell by the precision in his technique and through his Alton Brown-esque knowledge in the chemistry of food. But he switched to cooking Italian when through the tutelage of his Italian Mentor Antonia Tommasi, he realized the Italians introduced the French to flavors and seasonings. Food was Tommasi’s art form and believed the beauty of any dish lay in its simplicity. Chef Michael calls his style Madriatic, a combination of the Mediterranean and the Adriatic side of Italy.

The whole evening continued in the entertainment in chatting with a new friend. We asked him his favorite ingredient = eggplant; his guilty pleasure = McDonald’s Whopper and Big Mac; his children’s favorite meals = broiled chicken Milanese and Cheeto- and tortilla-encrusted chicken.

He shared that cooking truly feeds his soul. This is not only his passion, but his stage and home. "It is all about balance...balance between, flavors, textures, and seasonings." Lucky for us, he found his own personal balance of heart, talent and storytelling.

Please join us for the taping of his next show, Feker's Culinary Magic, on Saturday, September 26th. It airs on Wednesdays at 5pm and Sundays at 11am on Channel 32, Milwaukee. For more information, please visit http://www.ilmito.com/ and http://www.ilmitocooking.com/.

31 August - Shanel Regier, Lela and Sewing for Goodwill

With Lela's Sixth Annual Fashion Show coming up next weekend, I knew there might be an elevated level of uber stress for my dear friend Shanel Regier. She will be the headlining fashion designer.

Lela, a boutique located in the Third Ward of Milwaukee, carries an eclectic line of clothing -- vintage to cutting edge, casual to elegant, consignment to high end of carefully selected nationally known designers. I enjoy the shopping experience not only because I find a nice mix of classics to what's new, but because of the customer service. When I shop, I typically do not linger. I am motivated by purpose and visualize what I am looking for -- whether or not it exists is a different story. Lela helps me in that process with unique finds and exposes me to pieces I may have glossed over in considering it for myself. The success Lela enjoys is evidenced in its current project - doubling the store size to accommodate the new couture lounge and showroom, featuring Shanel's designs.

One of their signature items is the corset. Designer? Shanel Regier. I have yet to get my hands on one. I have quite a few of her pieces that have seen Chicago, Tokyo and Paris. And while at these cities, my husband and I noticed Shanel's look - classic with an edge of flair - also had a presence in these villes d'haute coutures. When I wear her varying designs, strangers sheepishly stop me and ask where I found my garment. The disappointment and, conversely, the glory are they are truly one of a kind. Just can't pick one up at Barney's.

A Nebraska native, Shanel moved to Milwaukee to attend the Milwaukee Institute of Art and Design (MIAD). She studied sculpture and fell in love with how fabrics fit, molded and moved with the human form. Since her first fashion show at Mantra Lounge in 2003, her brand has grown to enjoy national clientele, was showcased as GenArt Chicago's "Fresh Faces in Fashion" favorite and was featured on the front page of The Chicago Tribune. The privilege was mine when Shanel asked me to plan her 2006 show "Parisian Roots: A Performance in Couture." Our friendship has grown ever since.

Now in the throes of conceptualizing her newest collection, sketching designs, collecting her models, scheduling the fittings, meetings with Stephanie and Carrie from Lela, I have come to help her in any capacity - surge, seam rip, pick up coffee, etc. She typically shows 20-30 pieces. Though I have planned, marketed and was backstage producer in past shows, I had never actually helped on the production side. And no worries, I have sewn in the past...a double breasted cropped Janet Jackson-esque jacket with matching baggy pants (pretty funny now, but I swear it was hot at the time); not to mention my husband's Halloween costume, a Chinese collared fitted floor length coat as Neo from "The Matrix".

But walking away from watching her work, I was inspired to sew something as well. But not for me. My husband told me of one of Goodwill's professional services -- the Recovery Program. Its mission is to empower the unemployed to get back on their feet and find work. My mission, therefore, is to sew and donate a piece to this wonderful cause.

I went to JoAnn Fabrics to find a suitable design, selected a pattern and chose the fabric. Trying to decipher yardage among the different sizes and variations of the pattern proved to be a bit tenuous, but nevertheless got me started. I cut the patterns and pinned them to the fabric, following the instructions. This is still in progress and I will post the final product soon. Boy, I am hoping Goodwill matches the karma and intentions of this garment with a kind and forgiving soul! Hope this uplifts the spirit of a hardworking and hopeful woman.

As for the outcome of Shanel's pieces, I shall have to wait. But nevertheless, come meet me at her Trunk Show the following weekend. Let's check out the new Couture Lounge and sip champagne over a corset or two.

For more information on Goodwill and its programs, please visit: http://recovery.goodwill.org/

For more information on Shanel Regier, please visit http://www.shanelregier.com/.

For more information on Lela, please visit http://www.lelaboutique.com/.

24 August - Can't Teach an Old Dog a New Trick. Really?

I did not grow up a dog lover. So how is it I have two?

Growing up in a family of nine, half of us were meant to be allergic to animal hair. And with both parents in the medical field, our home was a sterile haven. We had a beautiful aquarium that goldfish managed to jump, but our other "pets" included the occasional chipmunk or bunny one of the siblings would find. The added makeshift leash tied to our basement door was a nice touch. The "pet" of course was kept in our central social hub, the kitchen. Can't believe Mom allowed us half the things she did...but I digress.

Being petite as a child, I was always afraid of dogs. At least big dogs or small ones that bit, yelped and scratched. When I was five, our neighbors had a big fluffy white and gray dog that jumped on top of me, pinned me down and licked my face. Other experiences weren't so friendly, so I was always taught to "freeze" when I saw a dog. That made walking home from buddy Jane's house an hour-long ordeal. I could see my house one backyard away. But it was the one with a dog.

So when my husband asked if we could get a dog our first year of marriage, my answer was an absolute "no." We took a drive through the countryside with his brother Rick and wife Cathy and saw a handwritten scrawled sign: Puppies for Sale. We pulled over and looked at the litter in the kennel. Cathy held one, nuzzled it, then held it out for me to hold. I crinkled my nose and kept my arms crossed. She asked, "Don't you love that puppy smell?" I swatted at the imaginary gnats swarming around my neck as I started to itch. I sniffed it to possibly understand what "puppy smell" meant. To dog lovers, this may be nostalgia, where the scent opens up an album of personal random memories of warmth, childhood, laughter and perhaps sorrow, I suppose. An experience that did not resonate with me, but might have been collected in raising a dog from puppyhood. I looked at the seven little creatures playfully jumping all over each other, barking in excitement. But there was one yellow lab, content in the corner, not seeking attention but just happy that she existed in the first place.

As we headed back to our apartment on Oakland and Thomas, I could tell my husband kept planting the seed. I said, "If we get one, it has to be mellow and you have to give it a bath three times a week." That's all he needed -- he had the checkbook in hand and left to pick her up. And he did give her a bath several times a week so I could hold her. Until he said, "You realize this is bad for her coat." Oops. Oh, then let's shut that down, shall we?

The education process of raising a puppy was quite interesting to me...like giving her too many treats was like giving a newborn a chocolate bar; realizing smelling funnies in my dream in the middle of the night was reality...that there really was fecal matter in the middle of our bedroom floor; but also, meaningful parental lessons like being able to teach and train by structure, repetition and praise.

We endearingly named her Scout, after the charming little girl in To Kill a Mockingbird. Scout came to be my baby. When we moved to our first home, we let her run everywhere. We built an indoor/outdoor kennel. I felt the joy of her licking my skin and actually took her for walks, not minding at all to pick up after her. And when it was time to sleep, she slept in my arms under the covers.

But when the babies came, Scout gradually became a pet. As the attention waned, and I would rock each baby to sleep, she would lay at my feet. In looking back at photos, she stood guard behind the children. And the children paid their own interpretation of "attention" to Scout. As the years went by, I noticed in the quiet, I would turn off the last light to head upstairs. She would be waiting for me in the foyer, and follow me to bed. She still does. My personal guard and loyal friend. Who asks for nothing.

Scout is now 13 years old. Her arthritis kicked in a few years ago. I came home one day to a black lab puppy running around our backyard. I asked, "Whose is that?" My husband smiled and said, "I thought you said it was okay..." Um...for what? That's OURS? The month before we move to a new home? But he explained Jet, our new puppy, might help keep Scout young. We surmise that Scout is still waiting for us to come clean and call off the joke -- that this thing that stalks her at her most private moments of going to the bathroom, is truly a bad dream. After four years, I think she understands it is reality.

Though Scout has lost her hearing, we have not given up hope that her age and arthritis define anything. So after dinner last week, we decided to try to teach her a new trick -- proving wrong the adage "You can't teach an old dog new tricks." We looked down at our plates, which included purple potatoes, and decided to try to balance one on her nose.

The video shows our attempts. It also shows our effort in switching to another trick, but poor Scout just physically wasn't able to turn over -- nor could she hear her cues. So we switched back to what we knew ... structure, repetition and praise. And finally, progress.

Changing the piece of food to an inanimate object helped too, poor thing....

17 August - Raising Kayla, a Child with Cerebral Palsy

I walked into her home and saw little 8-year-old Brooklyn at the kitchen table, scrapbooking quietly. I looked around to see the creatively painted and well-decorated playroom, neat and clean living room and family room. And I looked on the other side of the kitchen table to find beautiful little Kayla in her wheelchair with an artificial aquarium on her tray. Kayla was quietly spitting up, gasping for air. I was a bit apprehensive. Dear friend Shelly hugged me hello with her warm smile. She walked over to Kayla and calmly wiped her mouth as we caught up. Kayla was born with cerebral palsy.

Wikipedia states cerebral palsy, or CP, as "damage to the motor control centers of the developing brain during pregnancy, childbirth or after birth up to age three." There is no cure. Incidence is two per 1,000 live births. And though CP children can have a "normal" lifespan, symptoms become worse as they get older.

I asked if it troubles Shelly to see her daughter struggle this way, trying to take a simple breath. Shelly said, "We have to teach her how to manage by herself, otherwise we would be following her around constantly, doing it for her." I did not realize Kayla could be taught. Period. Such is my ignorance, as I recalled a CP classmate I befriended in college who asked me to go out dancing. Dancing, not dinner. A happy random memory that made me chuckle and gave me hope for Kayla. “So teach versus enable, so she can be independent?" I asked. She thoughtfully replied, "Isn't that what we all want for our kids?"

I think back to when I first visited Shelly months after Kayla was born. She was struggling trying to figure out why Kayla was not keeping her milk down. She took one ounce per hour and was exhausted. "I remember the day she was born. My doctor did an ultrasound and assured me that everything was fine. When they weighed her, she was floppy and was 6 pounds 7 ounces. Brook was 9 pounds 2 ounces when she was born so I was expecting Kayla to be in that same realm. Looking back, she had no muscle tone. After one month, she didn't have the reflexes she should have. The doctor thought it was neurological; we started physical therapy at New Berlin Therapies. You have a baby and do not think anything is wrong...."

From that point, she and her husband John, began to realize what was coming; though I am certain, it was and still is an unknown. One only operates with a finite amount of knowledge -- the wisdom comes through experience. They needed to learn things like holding her jaw so she could swallow easier as a newborn, to placing a NG (nasal) tube in her septum at a specific time -- only when Kayla exhaled -- then feed it into her stomach. They needed to test that the tube indeed was placed in the stomach, not the lungs, by listening with a stethoscope. "Our eyes were really opened to how much we had to do at home. I thought, 'I'm not a nurse; I'm not a doctor. I'm a mom. And this is not what I am supposed to be doing. Home is where she needs to be safe. I will take her to the Emergency Room, but I will not do this here at home.' John had to do it [place the tube].... If I have an ailment, I am not one to pop a pill, so I was fighting this for Kayla. But the seizures are hard to control without medication. Then you have the additional supplements because of the medication’s side effects. When puberty hits and hormones kick in, it will be another change. It's like we are on this ever changing timeline."

So what does it take to care for five-year-old Kayla?
In a day, Kayla will intake 14 different medications, some might be several times per day. These are for seizure, movement and supplements. Because of Kayla's reflux, these meds go into her small intestine, not stomach, through a GJ (gastrojejunal) tube.

• At 6am, Shelly cleans her up from any wetness or leakage due to the 1,000 ml of water given throughout the night. She gives Kayla the first round of medication, nine syringes. Shelly then empties out her vent bag of stomach acid and places on her orthotics (braces for her legs.) After the meds, Kayla falls back asleep.
• When she wakes, Shelly gives her a full bath. Then it is exercise time, depending on the day. Or off to an appointment or two. Every month Kayla comes down with an infection where appointments follow. Any new medication is filled and the medication sheet is changed to control other symptoms that may arise.
  
• Kayla also has therapy twice per week. It is normal to pack for a full day, knowing homebound is at 4pm.
  
• At 1:30 or 2, Kayla is given another round of medication. This is followed by another nap.
• Dinnertime. When Kayla wakes, Shelly cooks a family dinner. Thereafter is dedicated family time.
• Bedtime. The last round of medication is given. Then the bag of water of 1000 ml is put in place.

"We have to be structured but very flexible. Kayla can be fine one day and the next need to be hospitalized due to respiratory complications. Our environment is ever changing and we just have to adapt and figure it out. Brook is our other child in the world of 'normal.' It's keeping that balance. We get out as much as possible. It's so easy to become your own world in your own house. We've met so many people who are trying to find the answers and on the same journey, and yet live that life of 'normal.' We used to see a handicapped child in the grocery store or at a park...I never knew that world existed. Kayla has opened that door."

Penfield Children's Center was an incredible light of hope during their struggle and journey. Shelly and John were the Guests of Honor at the 2005 Penfield Croquet Ball Gala. John spoke and shared their story. “You could have heard a pin drop. Many of the men that sat in that room that night saw themselves in John, [realizing] this can happen to anyone.” They gave back once again by serving as the Event Chairs last year.

"This [situation] has challenged us spiritually, emotionally and physically. There were nights we would be up all night long. John...I don't know how he did it. He's the type of dad who would be up with Brook just because. He is a strong man. We have always stayed close, remained a team and were grateful for what we had." And luckily, they have help that came out of the blue. A nurse named Bethany approached John at church and offered her help. "She is a godsend and watched Kayla for a week while John, Brook and I went to Disney. That was very hard for me. I never wanted to divide our family. But then I realized when we are in the hospital with Kayla, Brook is with a grandparent or friend. I rationalized it as it's no different."

I realize it takes a certain kind of person, couple, to take care of a child with CP, or any developmentally-challenged child. I always thought God gives you what you can handle, so let it be a testament to one's strength of character to be dealt a difficult hand. But to actually be in the experience is not theory. It's reality. I remember seeing John walk in to my former dojang carrying Kayla while Brooklyn attended her first tae kwon do class. I was on my way out and remember how crowded it was. He told me afterwards he held Kayla through the entire hour with all the tubes in place. No one had given up his or her seat.

Shelly is one of those women who I turn to for a dose of wholesomeness. I hope everyone has a few of these people in his or her life. Her attitude is incredible and contagious. From the outside, one might think "simple housewife," as she bakes cookies for the neighbor kids and makes soup for strangers. (Have you or I done that lately?) On the inside, she has an incredible inner strength. Before becoming a mother, Shelly used her Biology and Microbiology degrees to extract DNA for hypertension research for the Medical College of Wisconsin. But her life and lab were in New Zealand.

And at our friend's lakehouse last summer, Shelly, in her 1940s classic fashionista bathing suit jumped on the jetski and took off for a period of time. "It was invigorating to have the wind whip through my hair at nearly 60 miles an hour, feel the water spray against my legs and all the while having the comfort of the warm sun on my back. I felt it like never before. When you are starved of something and first taste it again, the opportunity of experiencing it for the first time resurrects. My senses were at their peak. I just took it all in and relished in the fact that I could." John held Kayla in the shade and Brook bounced on the raft. When Shelly returned, she went on the big bounce and was launched into the air by a high school football player into the water. She is a caregiver first and foremost, but her resourcefulness, playfulness, creativity...person...is still there.

I asked her, in looking back to the first struggle to where they are now, what her thoughts were. "At that time, I doubted my ability that I would be able to provide for her the way that every child deserves. We didn’t have the option of reading ‘What to Expect when you are Expecting’. We researched every symptom and genetic disorder that was published. But Kayla has written her own guidebook and has been a tremendous teacher to our family and anyone who has had the opportunity to spend time with her. Sometimes I still say, ‘God got the wrong address.’ [Laughing] But those are times when I simply forget to turn down her feeding pump to 55ccs from 95ccs and she's feeling like she just ate five McDonald's shakes. Our goal, just like any other parent, is to give our children the best quality of life. I think the tables have turned in the respect that Kayla has given us quality of life. My eyes are now opened to experiencing Kayla’s world with all my senses, much like on the jetski that beautiful Saturday afternoon. We will ride the wave...and whatever comes, will come."

10 August - Surfing the "Shark Capital of the World"

If you Googled the “shark capital of the world,” what is the first place you think would be listed? Somewhere far away? Exotic? Australia? Hawaii? Wrong. It's New Smyrna Beach, Florida. Just so happens to be the sleepy little town my family visits every year. It is an unpretentious, chillax town that has become our haven. It has our favorite "go to's" like Toni and Joe's for the world's best hoagie. Or Spanish River Grill for tapas, ambience and sangria. We live at the pool, with the Atlantic Ocean as our view. We walk the beach in the mornings and grab our coffee at our favorite little coffee shop. We visit our nostalgic surf shops like Quiet Flight for a pair of shades or Billabongwear. Or Inlet Charley's for a pair of Sanuks.

Prior to this annual trip, I emailed Inlet Charley's, a surf shop on Flagler Avenue, to inquire of surfing conditions. I also mentioned that last summer, friends from the UK took my son shorefishing, right in front of our condo. My son came running up the beach yelling. My first fear, as I ran towards him, was he had gotten caught in the hook. Nope. He caught a 2-foot white-tipped reef shark. A shark. For real? How nice. My first reaction was, "I didn't think they came that small." Brilliant. The email response I received stated, "It has been sharky at the lnlet but surfing is fine farther down the shore line. Just stay away from the Inlet and you will be fine." Sharky. Really? Because I can WALK to the Inlet from where we stay. I thought that was the funniest response. My friend Nat says that's like "scattered showers." Like 30%? 40% chance?

In further research and in talking with my husband, he said he wouldn't worry. He advised not to look at an aerial view before I head out. Brother-in-law Scotti said he went out to the sandbar and wouldn't think twice about worrying. So I went.

My two-hour class at Nichol's Surf Shop was incredibly comforting. Our instructor Mike said he would be the first one out among the four of us. And if anyone would get bit or grazed, it would be him. For $75, that was a kind gesture. We spent 40 minutes talking about safety and the tide. Then we practiced getting up on the board on land. I am a very visual person and in order for things to make sense, I need to see it in my head, follow the logic, understand why, then apply the feel. "Paddle hard, push up, slide your foot underneath you and shift your weight to the back foot." This is the opposite of snowboarding, where you shift your weight to the front foot, towards the hill. Mike also said this was probably the most difficult of those sports -- skiing, snowboarding, skateboarding, boogie boarding, etc. -- because the wave and energy are different every time.

We set out for our morning swim. I forgot that I had to actually submerge my body in order to do this. I also forgot I didn't like being cold. Afraid I would feel something nipping at my ankle, I quick dunked my head under and followed my two other classmates. To get past the shoreline waves, we velcroed the tether around whichever ankle belonged to the "back foot" and dragged our board behind us like a dog on a leash. Then we paddled out to at least six feet of water. To overcome the incoming waves, we were taught to do a push up so the wave went between our bodies and the board.

We sat and waited for the waves to come. I found it was difficult to know what I was looking for. Mike told us to watch for when each started to stand, not simply roll in. When one came in, Mike turned my board, told me to paddle, then yelled, "Stand!" I stood, but I didn't get the "feel" for the energy of the wave underneath us. How "Point Break"-esque. Good ol' Patrick Swayze and neophyte Keanu Reeves. So I turned to my visualization. I knew I would not be able to stand without control. So the only way to gain control is to keep a low center of gravity, therefore, don't focus on the stand at all. If I had to, I needed to keep my hands on the board.

I tried a few more times and it worked. I went back to catch Mike and my classmates for one more wave. They were quiet. I asked if lessons were over and they said, "No." After a few minutes of silence, Lauren another student said, "There's something out here." Oh. Well, note to self. I better get my ankles on the board and tuck in my toes. Then get out of the fringe and head to the human that is in the water - Mike. As he graciously offered, he would be the first. They said it was something dark and surfaced. Probably a manatee. I wondered if that was Japanese for "Jaws." Lauren explained they were cute, sweet creatures like sea cows. Again, Japanese for "Cujo?"

Mike explained that he has surfed here for years and that sharks come near him all the time. Injuries were typically from being grazed, not bitten. And we should remember that we were in their home and habitat. That was a neat way to look at it, actually. They were not the intruders, we were. When I saw this ocean as a place to be respected, I was at peace. We went for one more wave and headed in.

It saddens me every year to say goodbye to this haven. Maybe I’ll try the Inlet next year….