Sunday, January 29, 2012

#TeamBolton Hits the Stage

Today was an awesome day.  After ten months of 'life as we've known it' and not really being able to commit to singing at church, #TeamBolton ministered a special selection today.  Many of you may remember footage that was circulating on Facebook of a young lady running one of the most important races of her life and midway through the race, she trips and falls, but immediately gets up and within the last moment wins the race.  As I watched the strength, will and perseverance of this young runner unfold, I was deeply moved by the song that accompanied the piece. 

I've been on the schedule to do a special selection at church for a few months now.  Quentin and I had planned to do another song, but when I let Quentin listen to this song, we knew we wanted to do it together.  We have only sung together one other time, which was last year for Christmas (I'll post that if I can find it).  God has been so faithful to us. Despite what it looked like, felt like or what the 'forcast' was, God covered us in his love.  There were many times I listened to this song and was reminded of a blog post by Rasheeda Matthews (Better Part of Me) that outlined the magnitude of peace and comfort that can only come from being wrapped in God's love.   It was so awesome to be able to minister this song.

Singing is 'relatively' new in our lives.  I sang in a teen choir once and after singing a solo piece where my nerves were heard in every note, I never sang again.  Well....there was the one time I got talked into singing Lisa Lisa and Cult Jam's 'All Cried Out' at my 11th Grade Homecoming Dance.  How that happened I don't know, but peer pressure is a beast.  Thankfully there is no video footage of that.  Quentin sang in choirs throughout his childhood, but it had been twenty plus years since either of us had sang anything outside of the shower or in the car with the radio.  About five years ago the desire to sing was so pressing that I decided to join the Adult Choir at my church.  I'll never forget my first rehearsal.  I stood up, introduced myself and told everyone I don't know what I sing, but I have a desire to do so.  Gradually I became more comfortable with singing, but remember in a choir you are one of many voices, so if you're not that great, the hope is that all the other voices mask yours.  The more I became involved the more I enjoyed and look forward to singing.  Whenever I was asked to do more I always said 'I'll try' and over time I gained the confidence to do a quick part and even a solo or two.  Quentin joined shortly thereafter and it became something we both really loved doing and being a part of. Quentin gets his pretty earnestly, my father-in-love has a beautiful voice and my mother-in-love sings too.  To my knowledge, neither of my parents sang publicly, but they love music and can carry a tune. 

So here we are....Thank you Lord for taking me out of the shower and placing the desire in me to do more.  Thank you Minister Cottman, for recognizing abilities neither of us knew we had and challenging us to do more.  I never imagined myself singing in any place by myself or without 20 other people with me.  We've grown so much.  Thank you Faith and Family Church for always warmly receiving and supporting us.  Thank you to our children, our biggest supporters and cheerleaders.  They sit through our rehearsals times and by the time we actually sing, they know the words, have thrown in some sort of praise dance and lots of hearty claps. Thank you to my Fashion Stylist, Mireya who encouraged me to wear a 'pretty black dress' and who selected the shoes for me to wear and lastly, thank you to our daughter Paris who really wanted to be at church today.   She fell in love with this song the moment she heard it too and asked that I please, please, please have someone record it.

God's love never fails and it reigns forever in our lives, so remember to 'Stay in the Race' (Norman Hutchins), 'Don't Stop Believing' (I'm a big Journey fan) and most importantly know that your 'Best and Brightest Days are Ahead of You' (Pastor Calvin Duncan).  God put a song in our hearts to share. We're not the best singers in the world, but we have a true desire to worship God and to touch the hearts of people through song.  Enjoy Hillsong's 'Forever Reign' ministered by #TeamBolton!

Thursday, January 19, 2012

Bald & Beautiful

A few weeks ago a 'super' movement was created when several Moms of kids with cancer came up with the idea of the 'Bald & Beautiful' or 'Hope' Barbie.   When I first received the notice to 'Like' this page, there were about 1700 followers, it has now grown to over 130,000 in about 4 weeks.  The power of social media is incredible.  If you really know how to capitalize on the power of people through these streams you could be dangerous, or quite a force to be reckoned with as we seen over the last few days when the Public Relations Director of the American Cancer Society decided to share his sentiments in a blog on The ACS site.  The post has since been taken down but it suggested that childhood cancer is 'exceedingly rare' and stated in opinion, this may be a publicity stunt, as he also made a mockery of yet another cancer 'token'.  You can imagine the backlash from such an ill thought out statement affiliated with an organization such as ACS.  I'm thinking his days there are probably numbered or his job in that capacity will be reassessed.  There's also the idiotic self-professed comedian that did a very thoughtless and offensive take on the Cancer Awareness Doll.  She now wonders why she's receiving hate mail and threats.  I do not condone violence, but I think making fun of sick children to illicit laughter is stupid, and when you took the time to make that disgusting video you opened yourself up to more than simple scrutiny. 

The idea of the Barbie hit the scene back in mid-December.  Mattel, St. Judes, and Hasbro were contacted about making a Barbie with no hair so that every little girl fighting cancer or illness associated with hair loss feels beautiful.  The even grander idea was that proceeds would be donated to organizations that support families, research and treatment of pediatric cancer and other illnesses in likeness.  Pediatric Cancer is the number one killer of children.  Statistically 7 children die and 46 children are diagnosed with cancer daily....hardly 'rare' and unless you've been there, walked in the shoes of the many that have and are, those are not statements or the stance to take out loud. 

Mattel has presented one of these dolls to a little girl as a part of a wish granted by the 'Make A Wish Foundation'.  So we know it can be done.  I would love to see the creation and availability of this doll in the near future.  I understand not every little girl plays with Barbie dolls or is affected by this situation, but the awareness it generates is noteworthy.  There are so many girls dealing with treatment that involves chemotherapy or illnesses such as Alopecia or Trichotillomania that want to feel like they belong and are included.   How awesome would it be to have a doll that looks like you or that you can relate to? Perhaps she would have some really cool knit hats, scarves or wigs?  I mean we know that in Barbie's World, accessories are a must!

There are two sides to every story and movement.  Some will be for it and some will not, largely because they have not been personally affected, or lack an appreciation for the difference this could make. When Mireya lost her hair, it was definitely a big change.  Mireya and I had a deal that if she lost her hair as a result of chemotherapy, Mommy would also cut hers, so she was not alone, but we really didn't put a lot of emphasis on it.  It's hair it will grow back and you are beautiful regardless.  The flip side of that is out in public we encountered stares, finger pointing, straight up questions (mostly from kids) and she was mistaken for and called a little boy on at least two occasions that I can recall.  These were uncomfortable instances, but you keep it light and moving.  I realize that kids are curious especially with things they've not seen or been exposed to.  Even if a child is not inclined to purchase the Hope Barbie, perhaps just seeing it as they walk down the aisle in a store could initiate conversation within a household about hair loss and illness in kids.

A great example of this is, my children have been around and spent time with a loved one in a wheelchair.  To them a wheelchair is just 'regular'.  When they are out in public, it's completely normal to see someone in a wheelchair and have an exchange with them just as if they were walking on two feet.  I've seen children who may not have been exposed to someone with different physical needs or limitations or they don't understand 'how' or 'why' someone could be confined to a wheelchair and are in the 'OMGoodness Zone' when encountering a similar situation. I love that the children can relate to this and do not find it odd.  There was another instance when we were greeted by a gentleman in a wheelchair and they wanted to jump in his lap, but that is the comfort level and sense of ease they have with it.  The first time we saw someone with only one leg in a wheelchair required some additional discussions.  You can't sweep away a child's simple and authentic reaction, but you can try to bring awareness.  There were many times I'd wished Mireya didn't have to experience the stares or alarming attention in public.  If I'm not mistaken there is a Barbie in a wheelchair.  I mean Barbie can be all things, why not Bald and Beautiful. I showed Mireya this picture Paris sent me last month of all her favorite Disney Princesses.  She giggled uncontrollably and said 'they got their hair cut, just like me'. In that moment, she identified with a place she has been and it was so cool to her to see this picture of the Princesses she adores.  They were still beautiful and identifiable without their long tresses.

One of our very favorite friends is Little Ms. Emily Hubbel, she and Mireya met on the Bone Marrow Transplant Unit.  Emily was diagnosed with Neuroblastoma one year ago.  She and her family just returned to Richmond from CHOP (Children's Hospital of Philadelphia) where they continue to seek the best level of care, programs and medical specialists for Emily. The Hubble family was interviewed this week about the Hope Barbie.  Take a look at the piece and please continue to keep Emily and her family in your prayers. 

Mattel is weighing the positives, negatives and marketing of a 'Bald & Beautiful' Barbie.  The decision to make the doll has yet to be determined.  Until a decision is made, we have the right to participate in the campaign to request it.  In turn, they also have a right to say no, but my hope is that they will decide to create this Barbie Doll.  It is a doll, but it represents so much more.  A doll that could make it easier to accept the reality of hair loss, a doll that could make a child feel better, happier and more beautiful.  A doll that could make a daughter not feel so bad about her mother's (or any close female family member) illness.  There are so many positives...and yes little boys have not been forgotten.  There has been a push mounting over the last few weeks for a bald GI Joe.  If you are in favor of Mattel making this doll and for the positive impact this could make for so many, please consider signing the petition by visiting

Saturday, January 14, 2012

Miss America

Miss Chesterfield Delesia Amanda Watson now on the road to Miss America

From Miss Chesterfield last week to Miss America this week, my girl has been enlightened and totally turned on.  For four years I've been asking 'how' I got a princess.  Where that gene came from.  She loves all things girly, frilly, twirly, glitzy and glammy (is that a word...rhymes with whammy)  Big bucks no whammy's, my girl loves to be glammy.

I was a 'psuedo' tom boy and only played with dolls and did girly things when it was likely raining outside and I had to play inside with my sisters.  Total jock, BUT I did like to 'look' cute.  I'm not saying female athletes aren't concerned with how they look, but when I was coming up and it mattered, most of them did not.  So I must distinguish myself from that era of jockettes.  Oddly enough I went on to become a working model, go figure.  On a tangent I know, how I ended up with a total, undeniable princess I don't know, but I love that girl.

When Mireya saw the pageant was on TV she was so excited.  She oohed and awed at the swimsuits, the gowns, the glitzy Express tops (those were cute) and so many pretty shoes.  A few of the contestants walked on stage as if they were galloping on a horse.  I made a comment about them being bouncy and Reya started to critique the remaining ladies, asking me if they were too bouncy. Reya is hilarious and a quick study.  We fell asleep before it was over, but I DVD'd it and have the sneaking suspicion that we'll be watching it over and over again.

Last week, Mireya participated in Miss Chesterfield's non-competitive Princess Program where she enjoyed watching the contestants dance, sing and perform monologues. A few days later, she and her sister put on their leotards and ballet slippers and started to dance.  I will say this as my heart bursts with emotion, Mireya is so graceful and elegant in her movements it's simply beautiful to watch.  She took one dance class (shout out to Ms. Christy @JMSD) , but does moves, leaps and jumps as if she's been taking classes for a few years.  I LOVE watching her expression of dance.  At any moment I expected to hear Debbie Allen doing a 5,6,7,8 countdown, because it was a small Fame showcase all the live long day.  Around snack time, Reya sat down and I told her how beautiful and graceful of a dancer I think she is.  She smiled, looked up at me and said 'it's my talent'.

So there you have it.  In her mind it totally clicked that although she and her fellow pageant sisters, wore the dress, were crowned and sashed, they did not perform a talent as the older participants did and she just wanted me to know that dancing was hers.....loved it!  Dancing make her so happy and I can't wait until she can be in a dance class setting again.  Another wonderful milestone to look forward to.

Thursday, January 12, 2012

A Familiar Place Leads Back to Grace

I could tell that Mireya was not feeling her best today, she sounded stuffy and had a bit of a runny nose.  Overnight she got up, because she was hot, and jumped in the bed with us.  She felt a bit warm, but her temperature was normal.  Today she's been a bit out of sorts and very fatigued.  It is not uncommon for her to take a nap, but today she stayed in the bed for several hours and when she woke up she complained that her throat and head were both hurting.  I took her temperature and she had a low grade fever.  I know how these things can shift on a dime and it's normally on a Friday about five minutes before the office is closing for the weekend, so I decided to call the pediatrician's office to have her seen.  Typically I also call Hemoc to keep them abreast of any concerns or issues with Mireya's health, and they have been working together to ensure Mireya's care is well managed between both offices. After speaking with the medical team at Hemo Clinic, we were asked to take Mireya to the Emergency Room.  The biggest concern was that she had just come off of an antibiotic days ago and really should not be exhibiting signs of an infection.  Her fever was just below the threshold of 100.4, but they wanted to take labs and ensure we were not dealing with any issues associated with her line.

We've not been down to the VCU E/R since just before Mireya's transplant and as a result we were there for about 24 days.  I told Mireya we were going to the hospital's Emergency Room and in that moment, she very calmly told me I needed to pack her some pajamas and make sure I had an outfit for her in the morning. She also asked me what room she was going to live in.  I laughed to myself because she easily went back to our 'routine', but it also made me a bit sad that the 'routine' was so engrained in her mind.  I didn't think we needed to be concerned about an overnight stay, but I pulled together out hosptial bag anyway.  We used to keep that thing packed, so we could just add a few essentials and hit the road when instructed.  It seemed like everyone had a 'moment' of reliving the impact of Reya's illness over this last year.  Jalen was concerned for his sister and curious as to when she would be back.  Tears filled Makinley's eyes as she asked me not to leave her. We are at VCU Children's Hospital in clinic, several times a month, but this ride felt different.  I started to have feelings of anxiety thinking back to the many times we made this trek and all the nights we stayed there waiting and wondering.   Each time we arrived  we were admitted, but I knew this time would be different.  She probably had a cold or virus and once they saw her we'd be examined and on our way home.

When we arrived it looked like there was a convention for sick children going on. I'd never seen so many people there. Fortunately they were expecting us so we were taken back to a room as soon as we arrived.  The intake coordinator told me whatever you do, don't take that mask off of her. Tis the season.  It's that time of year that breeds, coughs, colds and infections that can very easily become 'more than you bargained for' madness.   We did all the preliminary tests, cultures, checks and balances.  I had given Mireya Tylenol before we left, so she was no longer registering a temperature.  Negative for strep, no fever, counts look consistent to where they were when we were last in clinic.  I had not heard Mireya cough in over a week.  When the Dr. asked about a cough the answer was no, but within minutes of us being there, out of nowhere she begins with a pretty rough sounding cough.  A chest x-ray was ordered and it showed a pretty significant lung infection.  What I heard was 'infection in her line' and I was immediately devastated.  I'm the one that primarily does her dressing changes and line care.  I was so upset that somehow a infection was introduced through her line.  It is not uncommon that a infection can occur in the line, but we've avoided any issues for over 9 months now.  Roll back the tape...oh you said 'infection in her lung' ok I can now lay aside my guilt, but what does this mean?  It meant we would likely be admitted to the hospital so Mireya could be treated with antibiotics via her line and be monitored for progress.  We had been there for several hours before Mireya asked to put on her pajamas.  The attending physician did his assessment and expressed surprise that Mireya was not more visibly ill or on edge based on how the x-ray looked.  They administered the first dose of her antibiotic and within minutes she starting hollering that she was itching.  We'd had this experience while on the Transplant Unit.  They quickly gave her a dose of Benadryl intravenously and within about 10 minutes she was resting peacefully.  Through the night, Quentin and I did the 'wonder #TeamBolton powers activate' switchroo.  Jalen and Makinley were super excited to see Mommy at home the next morning. 

Mireya was moved up to the 7th floor for treatment.  Once they realized she was post transplant, they were a few order changes to ensure she was not on the Main Floor with so many sick little ones and that she was not sharing a room or bathroom.  A few of the Nurses and Care Partners remembered Mireya's sweet face.  They had to connect the diagnosis and chemotherapy dots when didn't see all that hair I was usually brushing or pulling back, but were happy to know that she had been doing well overall since we were last there.  Child Life stopped by, remembering that Mireya loved everything princess, they brought her a doll and some awesome activities to do while she was there.  I heart the Child Life Center.  They bring smiles to the faces of so many children whether they are there for the short or longer term.  During rounds we discussed plans with the Hemoc team for Mireya.  She has been placed on a super nuclear antibiotic and if there was no fever within 24 hours she could be discharged.  The fever never resurfaced, but I thank the Lord for that slight elevation in temperature because overall, that was the indicator of the underlying issue. One of the greatest exchanges during that conversation was that Mireya is cured!!!  There is no evidence of Aplastic Anemia and at this point she is simply being treated as a transplant patient.  Glory to Glory to Glory to God.  We'll continue the course of care for the next five months at which time we should be released from care and only have to come back annually to complete bloodwork and counts. 
The Nurses remarked on how awesome and easy Mireya is as a patient.  We've heard this many times before and we've said it before, God knew which child had the strength to bear this.  Despite the circumstances and not feeling her best some days, she's still manages to be a joy.  We found ourselves back in a familiar situation, but you can't keep a Warrior Princess down and you can't keep a family prayed for my many, solely relying on the will of God down either.  God's love and grace continues to keep us.  The prayers of the righteous are powerful and effective.  Thank you for your continued thoughts and prayers.

Monday, January 9, 2012

Crowning Glory

Mireya is our 'Guerrera', our Warrior Princess!  Reya has endured a lot this past year, but has taken it all in stride with grace, poise and a Spirit of ease.  It is only fitting that she officially be given the title.  This weekend Mireya participated in the Miss Chesterfield Scholarship Pageant and she was crowned (and sashed) a Miss Chesterfield Princess.  Throw all those visions of  'Tots and Tiaras' out of your head.  There were no flippers, spray tans or big hair, but a group of little girls allowed to collectively be recognized in this non-competitive category for girls ages 4-9 years old and they LOVED every second of it.  No offense to the 'Tots and Tiaras' set, if you have a princess that loves all of the other elements of pageantry and you can roll with your thing.  I appreciated this as a non-competitive, service oriented division of Miss Chesterfield fostering esteem, confidence and comaraderie amongst their Princesses.

The Princess segment of the pageant required the girls to introduce themselves on stage, stating their name, age and school they attend.  Mireya politely declined most every attempt I made to have her 'practice' doing this.  She managed to softly squeak it out a few times, after which she would cover her mouth and start blushing or giggling profusely.  In rehearsal there were a handful of us in the audience as the participants did sound checks and a run through of the lineup.  I made sure to express to Reya there would be a lot more people in the audience, and not to be frightened but to introduce herself and she would be escorted to her spot.   I really didn't know what to expect when she got up on stage on pageant night, but she walked over to the microphone and simply stated her name, age and then very quickly covered her mouth in a quick pause as if to say 'OMGoodness...I did it'.  It was adorable.  We were so proud of her.

The Princesses had special and reserved front row seating so they could watch the competitive portion of the Pageant unfold.  Mireya loves glitz and glam and was captivated by the swimsuit and talent segments. The true highlight for her was the 'beautiful' gowns and shoes they wore. She squealed with excitement as each girl graced the stage.

Mireya rolled with the Court of Princesses 'as if' (yes throw a little valley girl twist on that), and the 'if' is not that she is several years younger than the other little ladies.  It only became really apparent she was the youngest as we watched her bopping and fidgeting on the front row while the other young ladies sat quietly and fully focused.  The joy of a toddler's attention span when the the parade of dresses end and the music stops. I could 'see' the bubble above her head 'Emcees, who needs Emcees, just keep the dresses and performances rolling' as the distinguished judges scores are tabulated.  The Emcees, Tiffany Hazelwood and NBC12 Morning News Anchor, Gray Hall did a fantastic job. 

The Miss Chesterfield Scholaship Pageant is a preliminary to the Miss Virginia Scholarship Pageant.  Miss Virginia goes on to compete for the title of Miss America.  The Miss America Organization has one of the nations leading programs and is the largest provider of scholarship assistance for young women.  Last year, the combined Miss America Organization made available more than $45 million dollars in cash and scholarship assistance.  Amazing!

The Miss America Organization is an avenue for young girls and women not only to earn scholarships, but to serve the community.  The Miss America Organization has partnered with Children’s Miracle Network to raise funds and awareness for children’s hospitals throughout the United States.  The Children's Miracle Network is an organization very near and dear to our hearts as Mireya's complete medical care is administered and managed at Children's Hospital of Richmond @ VCU.  It has been a tremendous blessing to have a local hospital with resources and specialized care to deal with Mireya's life-threatening diagnosis earlier this year.  During the summer we had the opportunity as a family to be live on-air during the Annual Children's Miracle Network Telethon to share our story and help raise awareness and money for the Children's Miracle Network. 

So what's next?  Our 'pageant' eyes have been opened and after we wipe away the glitter and sparkles, we're looking forward to a year of workshops, events, community service appearances and social activities for Mireya and her new pageant sisters.  January is Mentoring Month.  Miss Chesterfield and her court have their first offical appearance next week to support the Chesterfield Public Education Foundation's Mega Mentors program.  The girls get to dress up, throw on their crown and sash to represent the young people of Chesterfield County.  There are some ground rules that accompany the use of said sash and crown.  They are only to be used for 'official' Miss Chesterfield events.  So donning your crown and sash as you play dress up at home with your sister is not in the lineup, and so we've made sure to tuck them far out of reach.  I don't know what kind of zirconias or crystals they use in that crown but it has serious BLING.  I think there are flawless, with very little occlusions (VVSI or II) and the color is brilliant and as far as carats are concerned...this baby is loaded.  Just a quick moment of the 4 C's in shopping for diamonds.  I still remember after all these years. We also love and appreciate that the Miss Chesterfield team considered all things and recognized the challenge in Mireya being crowned, as her hair is just starting to grow back from her chemotherapy.  The team contacted the distributor and a special crown was created for Mireya to ensure it would stay on.

A very special 'Congratulations' to my dear friend Kyle Grinnage.  Kyle has been working with the Ms. Chesterfield Scholarship Pageant for the last few years, but this year she became the Executive Director and this was officially her first pageant on her own.  Kyle has been after me for a few years about entering Paris into this pageant.  After seeing and experiencing the Miss Chesterfield pageant, I would love for Paris to have the opportunity to be a part of it (those scholarship awards are speaking to me).  There is so much that goes into pulling this off successfully, and Kyle and her team did a tremendous job.  I'm so proud of her and look forward to supporting her in this role for years to come.  Mireya's health continues to improve and we're so happy she had the opportunity to participate and now be a part of the Miss Chesterfield Program.  To learn more about the program, see pictures of the event and meet our 2012 Miss Chesterfield, Delesia Amanda Watson visit Attached is a link of our personal photos and a quick video of Mireya's intro beginning on page three of the photostream.  Enjoy and look out for more updates as Mireya serves this year.