FRONT PAGE ARTCLE on our family :)

Thursday, March 19, 2009
Boxer fights two battles

PREMATURE TWINS STILL A CONCERN

By Bud Barth Telegram & Gazette Staff
hbarth@telegram.com

WORCESTER — As if Edwin Rodriguez, Worcester's undefeated middleweight prospect, doesn't have enough on his mind already. Exercising, jabbing, bobbing, weaving, punching, ducking, winning.

And worrying.

That's a burden that the 23-year-old fighter carries with him 24/7, whether he's in the ring or not. Ever since his fiancee, Stephanie Rapa, gave birth in September 2006 to fragile 19-ounce "micro-preemie" twins, who were a full four months premature, Rodriguez has been fighting a war on two fronts.


There's his fledgling quest for the world middleweight championship, which resumes tonight with the aptly named "Homecoming" show that he's headlining at Mechanics Hall. He'll fight veteran Patrick Thompson of Lincoln, Neb., in the main event. And then there's the psychological ordeal of handling the ongoing health issues of his 2-1/2-year-old miracle babies, Edwin Jr. and Serena Lynn Rodriguez.

"Basically, they were born at the brink of viability," said Rapa, a 26-year-old College of the Holy Cross graduate who will enroll this fall at Western New England College School of Law, which has awarded her a partial academic scholarship. "It's still a very hot ethical debate about whether or not we should be resuscitating kids that are born in the 23rd week of gestation, and that's exactly when my kids were born."

The twins, who Rapa later found out were given less than a 30 percent chance at survival, remained in the neonatal intensive care unit at UMass Memorial Medical Center - Memorial Campus for four months after their birth, aided by incubators and respirators. Edwin Jr. came "very close" to dying more than once, and Serena's weight dropped to less than a pound during her darkest days.

"There were several times that we had family meetings with the neonatologists about whether we would continue to keep them on the ventilator or whether we wanted to withdraw life support - especially for little Edwin," Rapa said. "I'll never forget, one of them sat us down and said that (Edwin Jr.) had close to a zero percent chance of survival."

Since coming home the first time, the twins have been in and out of the hospital about a dozen times. Both had heart surgery and pneumonia, and both continue to have lung and breathing problems - particularly Serena, who was hospitalized in intensive care for seven days just three months ago with a respiratory virus. The twins also have vision problems and issues with balance and walking.

Serena also has a vocal cord that was paralyzed during her heart surgery. It affected her ability to swallow before surgery last summer repositioned it. It's still paralyzed, but the effect is barely noticeable in her speech, Rapa said.

But the biggest blow came Jan. 30 when the couple was informed that Edwin Jr. has hypotonic cerebral palsy, a relatively rare form of the brain injury that affects muscle tone, which is why he still can't stand up alone or walk.

That news, in particular, was a huge jolt to Rodriguez, a strapping, 6-foot, 165-pound specimen in perfect health.

"We knew that there was something going on," he said. "He wasn't walking, so we kind of were expecting it, but we didn't want to actually listen to the doctors tell us. Stephanie cried, I cried - it was not a good time. After being through so much, to hear that.

"But, you know, he's a happy kid and he's always got a smile on his face. I love Edwin and I'm happy he's here with us. We made the right decision (to maintain life support)."

Amazingly, just 2-1/2 weeks after getting that devastating diagnosis, Rodriguez went out and scored a third-round, four-knockdown TKO of Brad Austin in Biloxi, Miss., in what his manager, Larry Army Jr., said was the best performance of his career.

"I try to put (my worries) to the side a little bit and focus on the boxing, because that's how I'm going to be able to provide a better life for them," said Rodriguez, now 9-0 with six knockouts. "But they get sick a lot and they get pretty serious when they get sick, so you can't really put it aside. You have to deal with it and you have take care of them."

Both children are undergoing physical therapy. Edwin Jr. also requires occupational and speech therapy, and Serena will have speech therapy when she turns 3. Obviously, the twins need lots of care, which is handled primarily by Rapa with the help of her mother, Jamie Herrick, who lives nearby in Worcester.

On top of all that, Rapa and Rodriguez have taken in a foster daughter, 17-year-old Theresa Pickens, whom Rapa befriended while doing counseling work at the Boys & Girls Club of Worcester for the Massachusetts Society for Prevention of Cruelty to Children.

Pickens, who had a troubled upbringing, was in danger of ending up in the foster care system, possibly outside Worcester. That would have made it impossible for her to complete her senior year at Claremont Academy, where she also is a bona fide basketball star for Main South, a co-op team that draws from Claremont and University Park Campus School.

Rapa and Rodriguez, despite living in a cramped two-bedroom apartment, decided to take in Pickens.

"At first," Rapa recalled, "Edwin said, `Are you crazy?' I said, `No, I just have this feeling we're supposed to do this.' ... I just couldn't bear the thought of knowing that I could do something to help and then not doing it.

"She needs a roof over her head, she needs people that are going to care about her, and I knew that we could do both of those things. I just trusted that it's what we were supposed to do, and it's worked out well."

The roof over their head will get a little bigger very soon. This week, Rapa and Rodriguez expect to close on the purchase of their first house - a 3-bedroom, 2-1/2-bath, single-family home on Burncoat Street, which will provide more room for the five-member clan and lots of open floor space for Edwin Jr., who requires a walker.

Rodriguez said he doesn't even think any more about missing his chance at the Olympics because of the untimely birth of the babies. He and Rapa were scheduled to get on a plane for Oxford, Calif., and the Police Athletic League championships on the day the twins decided to show up.

Three days before they were to leave, Rapa had a routine doctor's appointment, where it was discovered that she was dilated and in preterm labor without even knowing it. Doctors tried to stave off the labor with bed rest and medication, but when Rapa felt her first pain, it turned out to be Serena's tiny foot stuck in the birth canal - she was a breach - so doctors rushed Rapa in for an emergency C-section.

After that, with the babies' lives hanging by a thread, Rodriguez's amateur career spun its wheels. Already a two-time national amateur champion, Rodriguez was upset in the USA Boxing championships and the National Golden Gloves, events he had won in the past, and his dreams of competing in the 2008 Olympics vanished.

"It messed up my whole rhythm," he said. "I didn't even think my kids were going to make it. They told us Edwin Jr. had a zero chance of survival and if he did survive, it would be nothing short of a miracle. Someone tells you that, it kills you. I don't even like to talk about it."

Does he ever feel cheated by the situation?

"Not at all," he said. "I feel remorse at not being able to have my kids be born healthy, but not about me not making the Olympics. My kids come first. The Olympics was only a one-time thing, but I would never choose them in the world in front of my family.

"I wanted to be an Olympian, but if I had to do it again, I'd choose my kids over that a hundred times - a billion times."

So, he turned pro instead and now has his eyes on a world title and a hefty bankroll.

"I'm going to make it as a boxer and retire, invest money in something good," he said when the subject of a post-boxing career was brought up. "A happy ending - the American dream."

After his terrible nightmare, it's only fair.

Boxing at the Hall
When: Tonight

Time: 7 p.m. (doors open at 6:30)

Tickets: $25-$50 (balcony), $75 (first row balcony), $60-$100 (floor), and $150 (ringside)

Live updates: www.telegram.com/sports

Main event: Middleweights (8 rounds) - Edwin Rodriguez (9-0, 6 KOs) of Worcester vs. Patrick Thompson (15-13-1, 5 KOs) of Lincoln, Neb.

Co-feature: Super bantamweights (8 rounds) - Dat Nguyen (14-1, 6 KOs) of Vero Beach, Fla., vs. Alex Baba (26-14-1, 19 KOs) of Doraville, Ga.

Undercard: Light heavyweights (4 rounds) - Valar Boise (pro debut) of Providence vs. Houston Crayton (0-3) of Brockton; Middleweights (4 rounds) - Philip Jackson Benson (2-0, 0 KOs) of Brooklyn, N.Y., vs. Dameon Mitchell (0-1) of New York; Welterweights (4 rounds) - Justin Reinhold (pro debut) of Fall River vs. Valdrin Muriqi (pro debut) of New York; Light welterweights (4 rounds) - Steven Ormond (2-0, 0 KOs) of Dublin, Ireland, vs. Jonathan Ocasio (0-3) of Philadelphia; Lightweights (4 rounds) - Ryan Kielczewski (3-0, 0 KOs) of Quincy vs. Aaron Chavez (2-1, 0 KOs) of Vero Beach, Fla.

Reader Comments
--------------------------------------------------------------------------------

I want to personally thank Bud Barth for writing this article. In a recent piece, Bud mentioned the twins, and without knowing, mentioned how they were born premature and now are healthy 2 1/2 year olds. Bud didn't know the continued struggles we, and most other, parents of 'micro preemies' face, and I felt it was important to share this with the public.
As a volunteer with the March of Dimes, I am committed to raising prematurity awareness, and, along with so many other, work to raise money to help find a 'cure' to preterm birth. I emailed Bud about wanting to get the word out about extreme prematurity and help the public understand just how much preterm birth effects the lives of the survivors and their families, and of course the families of those who do not survive. Like myself, more than half of women who give birth prematurely don't know why. Many are healthy women who 'did everything right.'
My hope is that families going through similar situations know they are not alone, and hopefully will join the cause to help fund research into prematurity prevention. It's so important that babies get their full 40 weeks!
I also wanted to reach out to families who have children with special needs. Disability awareness, equal rights, and inclusion are things we are very passionate about. We are extremely proud of our children!

Any families who may be going through similar situations can email me at rapa.stephanie@yahoo.com. Over the past two and a half years I have gathered a lot of information and support networks that I'd be happy to share!

So thank you again Bud Barth!
-Stephanie Rapa

Edwin Fights for his Family

March 17, 2009
EDWIN RODRIGUEZ FIGHTS FOR HIS FAMILY
By KIRK LANG

Middleweight Edwin “La Bomba” Rodriguez - billed by his handlers in press releases with the ambitious tag “The Future of the Middleweight Division” - knows becoming the next big thing at 160 pounds will not happen overnight, in a week, or even a year from now. “One day at a time, one step at a time, keep working hard and I’ll be able to reach the expectations,” said Rodriguez, who recently signed a promotional contract with promoter Lou DiBella.
Rodriguez’ next step is a main event fight against Patrick Thompson in his hometown of Worcester, Massachusetts. Thompson only has a couple of more wins than losses but don’t let the poor record fool you. He’s fought a who’s who of quality opponents and stuck around for the final bell against, among others, John Duddy, Giovanni Lorenzo, Joe Greene, Vanes Martirosyan, Sechew Powell and Ishe Smith.


Even though Thompson has a habit of hanging in there, Rodriguez (9-0, 6 KOs) wants to impress. In other words, he’s planning on scoring a knockout. While stopping Thompson would be an accomplishment in and of itself, Rodriguez also feels he owes the ticket-buyers an exciting fight, or at least an exciting finish. “They want to see knockouts and that’s what I’m going to give them, especially at this time, when the economy is so bad,” said Rodriguez. “They’re paying their hard-earned money to go see a fight and it’s my duty to give it to them.”

Rodriguez also knows he’s going to have some rabid hometown supporters cheering on his every move, his every punch. He’s fighting at Mechanics Hall, a few minutes away from his dad’s old convenience store. A native of the Dominican Republic, the 23-year-old Rodriguez relocated to Worcester, MA with his four brothers 11 years ago. He turned pro in January of last year after a 93-bout amateur career that included taking gold at the 2005 USA Boxing National Championships and becoming a national Golden Gloves champion in 2006.


Rodriguez, under the guidance of trainer Peter Manfredo, Sr., has slowly been getting rid of bad habits from his amateur days, such as leaning back from punches. “I learned to stay in there, duck and weave and sit on my punches more,” said Rodriguez. “I feel like I’m doing that a lot more and I feel like I’m hitting harder.” Manfredo has been with Rodriguez since his third fight.


“Fight by fight I’ve just been seeing improvement with what I’ve been doing in the ring. I just improved so much in the year I’ve been with Peter,” said Rodriguez.

Rodriguez isn’t just a guy who fights for himself or for shiny belts. His longtime girlfriend Stephanie and their two-year-old twins keep him motivated to put his heart and soul into this boxing game and not cut any corners.


Rodriguez can also draw inspiration from his children. They know what it’s like to fight as well. They were born very prematurely, just 23 weeks after concepcion (full term is 40 weeks). Each twin only weighed one pound and three ounces. The chances of survival were slim but they beat the odds. However, his son was recently diagnosed with Cerebral Palsy.


“[It’s] not good but he’s happy and I love him and we’re just working on strength and conditioning to get him walking,” said Rodriguez. “But he’s a good kid and I’m happy with the decisions that I made and I’m happy he’s here with us.”

Rodriguez said he probably works even harder in the gym because of his son’s disorder. “Yes, because I want to give him a good life and I want to be able to make enough so he could be all set, even after I retire, and after I’m not here anymore,” he said. “I want to make sure that my son and my daughter are going to be OK ,that they’re going to be living comfortable, so that’s what I fight for and that’s what I strive for.”

Every time Rodriguez steps in the ring he sees an opponent that is trying to take food off of his family’s plate. Any loss would set his career back and lessen his prize money. Every win, on the other hand, only makes the next check that much bigger.

Rodriguez doesn’t plan on letting Thompson put a blemish on the unbeaten record he has built up so far. He knows Thompson will come to fight and try to take him eight rounds “but I don’t think it’s going to happen,” said Rodriguez.


Whether Thompson goes the distance or not, Rodriguez knows his opponent won’t bow out easily. “He’s not one of those fighters that doesn’t put up a fight,” said Rodriguez, “And I need somebody that going to put up a fight because that’s what’s going to help me keep learning and be a better fighter. Like I said, one step at a time.”


Tickets are on sale at the Mechanics Hall box office, www.mechanicshall.org, Manfredo’s Gym in Pawtucket (RI), and the Boys & Girls Club of Worcester. Doors open at 6:30 PM/ET, first bout at 7:00 PM/ET.

UPDATE!!!

LOOOVED the school I went to see yesterday morning, and best news, it's our neighborhood school for the new house! (We should be in by April 1st.)
It is a 10 years young building...all handicap accessible. Integrated Pre-K...no life skills for Pre-K. At kindergarten they reevaluate for the best fit for the child.
Full time nurse and entire medical suite because many medically involved children attend this school. No worries about the kids having respiratory issues...there will always be a nurse there to attend to them if needed.
Many children with various special needs, so it is integrated and accepting.
Just a beautiful facility with a staff that is both comfortable and supportive of children with various abilities.
I am so relieved now! Plus, Edwin would be able to use his walker because everwhere outside of his classroom is very close, minus the library, but he would take the elevator with his aide to get there.
Great news! So happy we decided to buy our house in this neighborhood!!!!!

Wheelchair and Life skills?

What a day....What a reality check..What a crash of emotions.
Today I went to visit the 3rd preschool on my list. This preK is not close to the home we are buying but it is a completely handicap accesible school and many children with CP attend. The other schools I went to were neighborhood schools, and worth looking at, but not a realistic school for Edwin...simply not accessible for him.
But this school didn't start off with a good impression. The principal didn't rememeber speaking to me, nor did he remember our appointment. He was prety rude about it, acusing me of making a mistake...if it's in my planner I DO NOT mess it up! I am pretty organized like that. Kinda have to be when you have as many appointments as these former 23 weekers have!!!
Anyway, after a bunch of questions that didn't seem necessary, he asked if Edwin would be in life skills or integrated classroom. I was hit hard...we haven't spoken with EI about this. Life skills for a three year old??? I said I would assume integrated. He said,"well is he cognitively normal?" Well, not exactly. He is globally delayed, but is coming along well with new words weekly and more signs coming quickly now. "Does he know his colors?" Ummm....NO!!!!!! Neither does his twin who isn't cognitively delayed. She knows red and blue and that's about it.

Anyway, he took me down to the pre-K.
The life skills preschool consisted of a carpet, some toys, and an aide for each other the three students. There were Rifton chairs stacked up at the back of the room, but were not being used. The 2 children who were not walking, were being held in chairs by their aides, the boy who could walk was walking around on the carpet. This area was separated by bookshelves and other "stuff" to physically distinguish this area from the integrated program. In the integrated classrooom students were in chairs coloring and doing "work", playing in the sandbox, playing with the kitchen, and having fun. It was a stark contrast to the life skills area. The more the principal and I spoke the more he seemd to be insinuating that based on Edwin's CP, mobility issues, and language delay, he might be in life skills. He said, "the kids with physical disabilities and no language usually are in life skills."

I'm sorry, but at 3 years old, how can you tell a child would be best suited for life skills? There may be children where you could make that case, but 3 is so young and there is so much time to learn and develop skills they may not have at 3.
But it got me thinking, given Edwin's physical limitations and his global developmental delay, they might try to put him in life skills! This both broke my heart and got the advocate in me going. I called his EI coordinator and made sure we were on the same page of pushing for integration for Edwin. Thankfully she was. I also called a fellow Sped PAC mom who I knew had pushed for her child not to be put in life skills. She told me many principals want to put students with cognitive delays in life skills because they want their MCAS scores to be as high as possible, and students in life skills don't take MCAS. (MCAS is standardized testing through no Child Left Behind.) Because school are under so much pressure to have high scores, they try to "weed out" the highly involved special needs kids from potentially "bringing down" their school's scores. I was outraged, but can see that happening.
But one thing's for sure...It WON'T happen with my son. He does not need life skills in my opinion. He needs to be challenged and given an enviornment where he can flourish and be with peers in an interactive enviornment. We might have to fight for this, but hopefully everyone on the team will be on the same page.

Tomorrow, we will be seeing the school he is likely to attend, and I am very anxious about this after today's visit.

So I was a little emotional after realizing we might have people try to force him into a program I don't think is appropriate, but things got even more emotionally tough during his PT.

PT brought up getting Edwin a wheelchair. I started to cry. She felt bad. It wasn't anything I haven't thought about, but it was tough to hear someone tell you your child would likely need a wheelchair. After being told for 2 years that our son does not have CP and repeatedly being told he will be walking soon...few more months, by Christmas, by Spring, etc. it was tough to hear, even though I was always cautious and unsure of their predictions about him "catching up."

Anyway, Edwin is doing very well with his walker. The issue PT is worried about is that Edwin will have difficulty with long distances. If there is a school performance in the gym, Edwin will have to use his walker to get to the gym, and what happens if he gets tired? We don't want him carried around. If we take him places now we use a stroller, but a stroller isn't the appropriate option for school. So PT wants us to have a wheelchair for school in case they have to go long distances. His primary way of getting around will be his walker, but we will have his wheelchair if he needs it. I understand her point, and I want Edwin to have what he needs, but I just had so much hope he would use his walker and then transition our of it and walk independently at some point in the not so distant future. I really don't know now...
Anyway, we'll have our meeting with the equipment specialist in mid-April once we are in our new house, and they will make decisions about what equipment to order. He needs a walker, a Rifton chair, and possibly the wheelchair.

FINALLY Serena had her PT eval. I have been asking for this forever, and she was given one about 7 months ago and PT said she was fine. I disagreed and have brought up her issues with balance, not walking up or down stairs, and her inability to jump for months. Today they watched her on the stairs and stepping up and off a phonebook. They realized she has no idea where her body is in space when trying to walk down stairs and she is very unsafe. So Serena will be getting PT on a regular basis as well. The worst part of EI is they always try to see both children at the same time, and it doesn't work. I can't take off work for every single session so it makes it harder for me to advocate. It's another reason Serena needs to attend school and get services through the school system for PT and ST. I don't think we will have a problem getting her in based on her gross motor delays.

So it was a pretty crazy day. A reality check for how "involved" Edwin is and will be in school. He will have PT probably 3 days out of the 5, he will almost certainly have an aide, and all his equipment.
I hope I like the preschool tomorrow, and let's hope the principal is better than the one I met today....

And here are pictures of the kids at a dance show we went to with a coworker and her kids. They are so cute!!!

Our foster daughter :)

I haven't talked much about Theresa because things were really volitile with her aunt at first. And even though this blog was private, I didn't want to cause any issues...jsut in case. But two months ago her aunt gave up all rights, and in court, in front of Theresa, she said she wanted nothing to do with her. It broke my heart.
Theresa is an amazing person and has been through so much.
Last week I emailed the newspaper, told them a little about her "story" and asked if it were possible if her picture made the paper. Afterall, she has been the leading scorer in Central Mass all season. Well, they called me, I told more of her story and they wanted to do a full out article on her! She was so excited.
Here it is:

Sunday, March 1, 2009
Net gain

Pickens picks up her game, on and off court

Paul Jarvey

Main South’s Theresa Pickens can make things look easy on the basketball court … (T&G Staff Photos/TOM RETTIG)

WORCESTER — There were January games of 35 and 40 points, and when the regular season ended, 17-year-old Theresa Pickens was the top girls’ basketball scorer in Central Mass.

But her story isn’t about how she averaged nearly 23 points a game for Main South with a lightning-quick release and a shot she can unleash with either hand. No, her story is about emotional growth, about trying to deal with everything that has been thrown at her, about the central role basketball has played in her life and about how the caring foster parents who decided to take her in last August have kept her on track.

Pickens has learned to become a better teammate and deal with the frustration that she says has always been the most difficult part of her game. But she’s not all the way there yet. She’ll be the first to tell you that.


Still, the positive steps are undeniable.

The day before the Cougars’ Central Mass. Tournament opener against Bay Path last week, Main South coach Chad Malone got on her in practice about not having a positive attitude and not embracing her role as a team leader.

“We left on kind of an uneasy note,” Malone said. “The next day, I saw a woman come back and respond in the right way. Against Bay Path, she was a team leader. She kept the entire team going. To me, that was a significant moment for everything we’ve been working toward in the classroom and on the basketball court.”

The 11th-seeded Cougars upset the fourth-seeded Minutemen, 62-41, in Charlton. It was the first tournament victory in history for Main South, a co-op team drawing players from Worcester’s two smallest public high schools, Claremont Academy and University Park Campus School.

“I cried, I was so happy,” said Pickens, who scored 26 points despite fighting double-team attention the entire game.

Even though the victory might not have resonated much beyond the Clark University neighborhood, it was a significant yes-we-can moment given that Main South had lost a game, 90-6, four years ago, the season before Malone took over, and was clobbered in the first round of the tournament last winter.

“A lot of these kids are so used to losing that when it happens on the basketball court, they think, ‘Oh well, that’s what’s expected to happen to us,’ ” said Malone, who teaches English at Claremont. “That’s a mind-set in the classroom and on the basketball court you have to do a lot to break.”

He has successfully been able to chip away at that attitude in what has been a breakout season for the Cougars, who advanced to the Division 3 semifinals with a 49-42 win over Parker last night.

Pickens, who led her team to victory yesterday with a game-high 29 points, has been a major part of the success, which is amazing given how her life was again turned upside down in August when she wasn’t sure if she would be able to come back for her senior year at Claremont.

Her parents abused drugs and alcohol and were incapable of caring for her, sending her into foster care when she was an infant. She was in and out of foster homes until her aunt adopted her when she was 5.

By the time she was 10, she was exhibiting some serious behavioral issues, and that’s when Ike McBride of the Boys & Girls Club steered her into basketball, hoping to turn all that negative energy into something positive.

Pickens isn’t sure if it’s the competition or what, but the game has become everything to her. It’s the one thing she has been able to rely on. Always.

“I don’t know what I would do without basketball,” Pickens said. “I feel like basketball has always been there for me.”

People have sometimes been another matter.

Pickens continued to butt heads with her aunt until things finally fell apart last summer. One month before her 17th birthday, Pickens was headed to foster care again, and who knew how that would work out, where she would end up.

Stephanie Rapa, who knew Pickens from the Boys & Girls Club, where Theresa was the Massachusetts Youth of the Year in 2007, decided she was well worth taking a chance on. Rapa and her fiancé, boxer Edwin Rodriguez, became her foster parents, a move that allowed Pickens to continue her education — and basketball career — at Claremont.

The stability has been good.

Malone believes this has been Pickens’ biggest year of growth. She admits that she has trust issues, but her coach said she has begun to figure out that she can’t do it alone and can rely on her teammates.

“There were times last year when she wasn’t willing to take the risk, to put herself out there,” Malone said. “That’s the change. She’s willing to put herself out there in a public way and risk failure. I think in risking failure she has met with tremendous success.”

Pickens is intent on continuing that success by playing in college.

She knows that going from a small school to the next level will be a huge adjustment, but the game means too much to her not to keep going.

“I know it’s going to be a big step, but I’m willing to do whatever I have to do to take that step because I love it,” she said.

And don’t doubt that she will successfully make the transition. Basketball isn’t nearly as hard with all that she’s had to deal with in life.

Paul Jarvey can be reached at pjarvey@telegram.com.