You decide what the future looks like

I’m sure by now most of you know that I started my professional career working in Washington, DC and for the State of New Jersey. I was responsible for policies, and since my job was heavily impacted by politics it was important for me to learn the ropes.

So, with that said, watching this Presidential campaign has been both fascinating and frightening to me. Even more so, I believe it has parallels to the transformation in health care.

Let me explain…

Forget whether you affiliate yourself with the Democrat or Republican Party. It is very clear that most people paying attention to the debates and the campaigns for our next President are angry.

Why do I say this?

On both sides of the aisle, many of the policies that the candidates promise and put forward are impractical and can not be accomplished.

No, we aren't going to pay for everyone's college education — unless we raise taxes to equal 50% of what people earn. No, Mexico is not going to pay for a wall to stop immigrants from coming into our country. The Affordable Care Act may be modified; 10 million Americans including 1 million children now have insurance and it will not be repealed.

When I watch these debates and the political commercials I can’t help but wonder, “Why are candidates saying these things and why do people believing in them?”

Rapid changes in our economy and advancements in technology make it difficult for us to protect the “American Dream.” We can’t all be Mark Zuckerberg, creating Facebooks and making more money than we know what to do with. The truth is the state of our country is a harsh reality.

It’s not all bad and scary. I’ll be the first to tell you that some major improvements have been made in the last few years. The economy has turned around and unemployment is down to 5%. These are great! But, people are not better off now than they were in 2007 when it comes to their income.

We are all uncertain about our safety and our future employment. Our parents now know that we will not have the same opportunities as them in regards to financial security and independence. This can cause huge unrest and disillusionment.

So what is the answer?

The answer is that we hold the answer within our own world. It is up to us to continue to do our best to find hope and joy in our daily life.

Knowing that change is coming doesn't make it any easier to accept the change. We need to do for each other what we do for our families — find the joy and refrain from getting too far ahead of ourselves.

We need to come together as a community where all people find the chance to succeed, where teamwork is encouraged and excellence follows.

What are your thoughts about this topic? Are you feeling the pressure and struggle? What are the ways you are coping?

And tonight’s Power Ball numbers are…..

Remember when I told you about having certain people who youcan really rely on? Well, today’s post was inspired by Theresa Defosse! She reached out to me to share what she would do with the money if she won the huge Powerball jackpot.

As of yesterday, the jackpot was up to $1.5 billion. BILLION! You could buy a few private islands and still have enough left over to get each Children’s Specialized Hospital employee a new car.

Theresa – who has a heart of gold – shared that she would use the money to help others and to change the world in a positive way.

“Personally, I would focus on accessible housing. I would start by building a community for kids and families who can’t go home after hospitalization. Then, I would try to expand the vision and promote accessible housing communities. I would want more medical group homes, so kids like Poppy could live with a family.”

So, it got me to thinking. What would I do if I won the Powerball jackpot (or even a portion of it). 

I just have to say that part of me feels like I’ve already won the lottery with the big Alabama win on Monday. Roll tide!!!!

I was on a golf course once with some colleagues. Instead of paying attention to the game, I started a conversation about what we would do if we won the lottery.

The woman I was playing with said she would set aside money for her nieces and nephews to pay for college.

I had just finished chairing the Capitol campaign for my church and said that I would pay off the mortgage so that it wouldn’t be such a burden for us. I would also pay off my Children’s Specialized Hospital pledge.

The woman’s husband was also playing with us and he said, “What is wrong with you two?! You are supposed to buy a jet and spend the money crazily so you end up bankrupt! You will never ‘win’ with those kinds of ‘wants’!”

Well, I still play occasionally hoping to pay off the church mortgage and my Children’s Specialized pledge, but it was still one of the funniest conversations I have ever had.

Now I want to know, what would YOU do with the money if you won? And if you’re playing tonight, “may the odds forever be in your favor.”

When life hands you lemons…

So you may recall from previous blog posts that my Dad and I have a daily exercise date at 4:30 a.m. We meet five days a week and I get my running fix in.

Running helps me clear my head and makes everything better for me. It’s very therapeutic.

Between Christmas and New Year's I got a rude awakening. Literally! I was awoken in the middle of the night by what I can only describe as a feeling like if someone was sticking pins in a voodoo doll's hip. A voodoo doll that was supposed to be me!

Literally out of a dead sleep my hip locked up and I screamed out loud.

After four days of dragging my leg behind me in pain while I walked and relying on a combination of Icy Hot, massages, Advil, and a healthy dose of self-pity, I emailed Pattie Foley (VP, Outpatient Services) for a consult.

 

It turns out that I have something called Iliotibial Band Syndrome (or ITBs). While it has a long, fancy name it just means I strained the muscle between my hip and knee. 

And guess what the fix is? Rest and stretching. It has now been over a week of trying to fix this and I have to say that I have been miserable. Actually, that is an understatement.

You know I am addicted to my FitBit, so reaching my daily goal is basically out of the question. Plus, my running has been completely sidelined, eliminating all opportunities for me to clear my head!

Are you enjoying my pity party yet?

This whole inconvenience has forced me to try other ways to heal, such as deep cleansing breaths. But, it has also been a stark reminder of just how hard it is for our kids and their parents who are recovering from what they are dealing with.

Yes, there are signs of life and healing, but I have to keep reminding myself that it is a process and no amount of gnashing of teeth or rushing will replace the hard work and time. Patience is key.

I’m curious – do you have a story similar to mine where you had to work through something challenging that tested your patience? Or do you have advice for me – besides put my big girl pants on and stop whining – to help me through my challenge?

RWJ/Barnabas – The Rumor Mill

So, since my email last week with the update to the Robert Wood Johnson and Barnabas merger I’ve gotten A LOT of questions. I answered some of them during my State of the State meeting last week, but in case some of you didn’t attend I wanted to make sure I clear up any questions here on the blog.

You all know it is my preference to deal with the issues directly, so I will continue to share the rumors I have heard and ask that if there are others – please post them in the comments below and/or email them to me. If I have the answers and can address them, I’ll do so here on the blog.

So, let’s get started.

Rumor: Amy was fired from Children’s Specialized Hospital and they moved her out.

I was not fired. Although being President of Children’s Specialized Hospital is the best job in the world because of both the work we do and each of you, this is a promotion for me. My mother even joked that I’ll really have no life now because I’ll be so busy.

Rumor: Joe Dobosh is retiring.

I am not even sure where this came from but No is the answer. Joe Dobosh is not retiring. Eventually he probably will, but not at this time.

Question: Where will your office be?

I will have an office in Plum Street in New Brunswick, but most of my time will be spent on the road working with the hospitals in the Southern region of RWJ Barnabas.

Question: Will Warren take your office in New Brunswick?

Yes, when the time comes to make the transition I will move my things out of my office at our New Brunswick Somerset Street office and Warren will move in. I’ve already given him some tips on how to rearrange the furniture!

Question: Will you still do your blog and the weekly wrap up?

This is a tricky one. No, I will not be in charge of the blog and the weekly wrap up anymore. Will Warren take over? That hasn’t been decided yet. Of course you’ll still be kept updated on what’s going on around the hospital, so much of what you’d normally share in the wrap up you should send to Megan Muller so we can share it in the Daily Huddles.

Question: Will Warren give us jean days?

I have no idea! This is something you’ll have to ask him about.

Question: Will you ever come back to see us?

You’ll still see me from time to time. I will attend events in my new role at all the hospitals and I will still be in New Brunswick (remember, I’ll have an office at Plum Street!). You may not see me as often, but I’ll still be around for sure.

Question: When is this going to happen?

The timing is dependent on when the Attorney General of New Jersey approves the merger. It could be a month or it could be a year. We don’t know the answer to this one yet, but I will share when I can. We are trying to be as proactive as we can so there are no surprises when this happens. That is why all three hospitals and our board have begun to discuss the movement of positions.

Question: Once Warren moves up, who will move into his role?

This is a great question, and from what I’ve heard some of you have already started to get some ideas on restructure! Warren will work closely with the Senior Leadership Team to determine this new structure. Most likely that wouldn’t occur until after I move into my new role.

Question: Are you still CEO now?

Yes! Until the day that this transition takes place, I will continue to be the CEO of Children’s Specialized Hospital and continue on with my responsibilities in this position. Consider it business as usual until you hear otherwise.

Question: Will Children's Specialized Hospital be remaining an affiliate of the merged hospital, or will we become the children's hospital within the new organizational structure?

We will remain as an affiliate of the hospital.

Question: There's the RWJ University Hospital Foundation, Saint Barnabas Medical Center Foundation, and Children's Specialized Hospital Foundation. Will these stay intact or be combined?

The Children's Specialized Hospital Foundation is free standing, and not part of this merger.

Question from the comments: Can we see a picture of Warren, have never actually met him!!!
Warren's photo is listed in his contact in the phone directory. A simple search would have brought him up for you! It's also listed under his Give a WOW! profile. But, to save you the hassle, here is one from us today.

I am aware that this announcement of my departure and Warren's promotion may have come as a surprise to some of you. But I want to assure you all that you’re in good hands here. Warren and I have worked closely for many years at Children’s Specialized. I have no doubt that he’ll continue to lead you all to reach new heights and accomplish even more than I have.

I know that as time goes on, there may be other rumors or questions that come about. I will continue to update you all when I have more information that I can share, but I would appreciate if there are other things out there that you are curious about, please let me know so I can put them to bed.

So, what else do you want to know?

I didn’t mean it like that…

If you watch the news, you may have seen a recent story about National Children’s Hospital in Columbus, Ohio and the interaction that took place between a registration person and a 4-year-old girl and her mom. When mom began telling the registration person that the reason they were at the hospital was because a 4-year-old boy hit her daughter on the playground, resulting in her requiring stitches, the person (in an effort to make the child feel better) said, “I bet he likes you.”

Now, I can’t speak for this person but I think he probably meant to say, “I am sure he didn’t mean to hurt you…” But, after 35,000 shares of the Instagram picture of the child, this story took a like of its own that no matter how young the parties involved, violence is unacceptable and condoning it – especially when you are in a children’s hospital – it is can never happen. 

There is a question in Sheryl Sandberg’s Lean In book that asks, “Where do you sit when you walk into an empty room?” Always, my first instinct is to think about who else will be in the room and whether there will be enough chairs for everyone.

Whether intentional or not, if you invite people to a meeting and don’t account for everyone, when someone walks in without a seat – regardless of who they are or what position they hold – they feel like the outsider; forgotten, maybe even unvalued. No one would ever intentionally devalue a colleague, but the perception is much stronger than the intent. Once you start down the path of having to explain, you have already lost.

We have power every day. I’m not talking about power because of your title. We have the power to influence in ways that we don’t think about frequently.

A kind word or a harsh word; a smile versus a sneer.

Every interaction with someone else is a chance to show who you are and what you stand for. We are flawed people and we do occasionally make thoughtless comments. Sometimes, like in my case, your mouth works faster than your head. At the end of those times, it is what you do next that matters.

National Children’s Hospital publicly and privately thanked the Mom for coming forward with the issue and allowed them to improve her experience with them.

For us, when those moments happen, we need remember to pause, go back, and make it better – whether with a parent or a colleague. The silence, before it is remedied, tends to be the the thing that eats away at you, causing unnecessary stress and pain. Let’s proactively avoid that.

The Equipment Shuffle

Teamwork is one of our core values that we have that ensures we a) don’t burn out trying to do everything on our own and b) that our kids get the best care they possibly can while they are with us.

So when this example came across my desk (well, in my email inbox) I couldn’t wait to recognize this team.

We accept donations of medical equipment so that when families are in need of specialized equipment we can loan something out to them, or use the equipment for either LTC or the inpatient program. The donation process can be tedious for those who aren’t familiar with it. Each new piece of equipment needs to be cleaned, checked for safety, processed into inventory, and then stored until it’s needed.

Then the shuffle begins! No, not the dance (although I wouldn’t put it past the staff in Rehabilitation Technology do a little jig from time to time), but the equipment gets shuffled from one site to another, depending on where the donation is accepted and where it is needed.

Getting the right equipment to the right site and department takes a team effort!

For this story, Sheila Blochlinger (Rehabilitation Technology Manager, Mountainside) gets the lucky straw since she is the one who got to see the happy child and family when we are able to loan a piece of equipment. 

She recently shared with me that we had an 8-year-old boy who came to us because he was just diagnosed with Muscular Dystrophy. He could no longer walk and was falling down all the time. We have been trying to get him an adaptive stroller through his insurance provider, but it is still not approved. 

A stroller donation from the Toms River site was ready for him and Fresnel Pierre (Materials Management) had transported it to our Mountainside site. It was the perfect size for this child and it was in good working condition. 

Sheila was able to fit the stroller and show the family how to use it properly. His parents were thrilled but most importantly, the child was thrilled. He was finally able to get around without the fear that he’d fall and hurt himself.

Here is the best part. He sat in the stroller and looked in the mirror and said, “Now I look like a King, instead of a baby.” He was smiling ear to ear.

Did happy tears just stream down your face? Because they did for me when I heard this story!

This truly shows how many hands it takes to make a good thing happen and live our value of compassion and teamwork. Not just that, but this shows us all how to be an inspiration to the kids and families we serve!

Yes, we helped to make sure that this patient was safe as he moved around, but more importantly, we changed how he felt about himself. He felt like a King!

Thanks Sheila for sharing this story with me and allowing me the opportunity to share it here on the blog. And thank you to everyone in our Rehabilitation Technology department for ensuring that equipment is clean, safe, and stored until our kids are ready to use it.

Do you know someone that should be recognized on Access Amy for something they’ve done at Children’s Specialized Hospital? I’d love to hear! Share below in the comments or send an e-mail to Megan Muller at memuller@childrens-specialized.org. 

Our partnership with China begins

First, let me begin by saying what a tremendous honor it was to for Michael Dribbon (VP Rehabilitation Services and Program Development), Chris Haines (Chief Medical Officer), and I to represent Children’s Specialized Hospital to begin our new consulting relationship with LIH Olivia’s Place. So many of you have asked about our trip, so I thought this would be a great place to share with all of you!

I’m going to totally over share on this one, but Michael over packed. Ha! Standing in the United Airlines line for check in, he had to take out ½ a pound of stuff from his suitcase. He was carrying presents and other materials for the people we were going to meet, but it ended up making his bag weigh a whopping 70.5 lbs! They wouldn’t let him pay to send the bag as is, so we had to do some luggage juggling.

The first thing we noticed when we arrived was the very tall apartment buildings. Inside entire, multi-generational families live together in 1,000 square feet homes. I can only speak for myself, but it really struck me how many people are in such a small space; everything is so compact.

I have a whole new appreciation for rush hour in New Jersey! In Beijing, it took us almost 95 minutes to go 5 miles. One of our hosts described driving in Beijing to me like a boulder in the middle of a stream. The water just makes its way around the boulder on the sides and isn’t deterred. People, cars, and bikes all move the same way. It just goes. I spent a lot of time in the back of the van with my eyes closed!

Beijing Children’s Hospital had just begun to institute appointments to their outpatient clinics. Prior to the week we arrived, people would just line up at the wee hours of the morning outside of the clinic doors and wait – just like you would at a department store. When the doors would open, people would be lined up by which physician they needed to see, and then wait again to be seen.

The physician would spend an average of 3 minutes with each patient and see 500 or so patients a day. It was hard for us to conceive how all of this functions.

The inpatient hospital is open from 9 a.m. to 5 p.m. on Monday-Friday. Just one nurse stays at night for the entire hospital. The families are expected to stay with their children to provide care over night and on the weekends.

Dr. Haines said he saw many children who had Guillain-Barre and other disorders that we also care for. There are so few surgeons so the things that we see as routine (e. g, feeding tube insertion) are not done because the clinicians can’t take the time away from the more traumatic surgeries that need to be completed.

Our role at Olivia’s Place is to provide expert advice as they open outpatient rehabilitation centers. Their first center was due to open the Monday after our arrival.

Their therapy staff was foreign trained and supplemented with therapy aides. The facility was beautiful and looked very much like ours. All of the patients are private pay, since the government insurance does not cover rehabilitation. It is their hope that they will be able to offer free care but that is an aspirational goal right now.

There were some things I saw there that I found hard to get used to. The signs in the bathroom at the hotel state, “Do not drink the water.” We had to use bottled water to brush our teeth. Also, in the closet there was a face mask with aerator on the front – think gas mask – in case the air was too polluted.

We got a chance to visit The Great Wall of China! It was 100 degrees outside that day. I sweated so much that the dye from my purse bled on my white shirt. There were attractive purple stains all over the back of my shirt and on my shoulder. The sights were beautiful, but I’m not sure how great I look in all the photos since I was so sweaty!

To make matters even more humorous, Michael and I have a bit of a fear of heights, whereas Dr. Haines was fearless during our adventures! Not only were we sweating because of the temperature, but I’m sure our nerves from being so high had something to do with it.

Also, giving a speech with a translator was very tough. You all know that I very rarely use notes and if I have them, I don’t keep to them. Well when someone is translating they read word for word on the slides. So, if you use words that aren’t on the slides and the translator doesn’t know them, well you can only imagine what gets translated.

It is clear to me that we have a unique ability to improve children’s lives in ways we can’t even begin to understand. We are continuing to provide assistance to our partners and hope that they will take us up on our offer to train side by side, both here and in China.

My thanks to all who have volunteered and we will continue to keep you apprised.

If you walked 21 miles in his shoes

There was a story back in January that I read about a Detroit man by the name of James Robertson who walked 21 miles each day to work.

IN DETROIT! Brrr….

The story evoked an online fundraising campaign for him. Someone even offered to buy him a car! When I first saw this story, I was immediately taken aback by the compassion surrounding this story – from every person sharing it or who donated money to help.

While I was touched to see others rise to the occasion, it made me wonder, “How many people passed this man each day, and never offered to help?”

I am not just sharing this with you guys as an esoteric exercise. It has really bothered me to think about this situation. Not necessarily “those people” who may never have actually “seen” him walking to or from work each day and didn’t stop for him, but in reflecting on myself I wonder: am I really paying attention to the strangers on the street that I pass by each day or am I just riding by like the thousands that must have done with Mr. Robertson?

Driving in and out of New Brunswick each day, I pass lots of people walking on the street. I mean, Easton Avenue is a busy commuter street. Men and women; old and young. Parents walking their children to school and others who seem that they may have been out all night (after all, it’s a college town!). 

Since I heard about James, I have started to look more closely at the people I pass by and see if I see the same people at the same time each day.

This past winter when it would snow, I actually stopped a number of times to offer rides to people. No one actually took me up on my offer. Who knows, maybe they thought I was crazy, and maybe I am, but I didn’t want to be one of those thousands of people who just drove by and didn’t see if they needed help.

Ok, so what’s my point here?

My point is, let’s all make a conscious effort to be more aware of our surroundings and the people around us. Maybe this post will mean nothing to you, or maybe the story about Mr. Robertson will make an impact on you like it did for me (I do sure hope for the latter of the two).

I know I can’t single-handedly change the world, even though I’m sure as heck going to try, but if together we pay it forward and extend our help to those who need it – even when it may not be obvious – then maybe, just maybe, it will give someone the amount of hope that they need to realize there are people who care.

So, for every person who is reading this blog today, I challenge you.

I challenge you to look around today as you’re walking the halls of Children’s Specialized Hospital; to take a second, third, even fourth look at the person whether it be a parent of a colleague; or listen a little more attentively when you’re chatting with your coworkers at lunch. I challenge you to step out of your comfort zone just a tad and lend your hand, ear, or heart to someone.

That one act of kindness can start that ripple in the pond, and help turn someone’s day around.

The story of Russell Beaulieu

The relationship between a father and daughter is often very special, but especially when you are the only child and the last grandchild of all of the grandchildren. I’m the baby of not just my family, but the entire family!

My father’s name is Russell Beaulieu, and anyone who has spent any time with me has had heard at least one of my many stories about my Dad. 

See, I am truly a Daddy’s girl – actually at 50 years old, I still call him Daddy. I know it’s pathetic, but completely true and I don’t apologize one minute for it. And c’mon guys, I can’t be the only one who still does that. Right?

At every level, my father is my hero. He grew up in a time where they often had to forgo new coats and where hand-me-downs were always a blessing from the cousins who had money. He didn’t actually realize he was poor until he went to college and learned that not everyone got their sugar with yellow tickets (that’s how the rations were given out then).

See? He never sees the bad. He only sees the good, and truly believes that people are fundamentally good. 

My father is the youngest boy of 7 children. One brother died at birth, another was hit by a train when he was 17 years old walking on the train tracks (he tried to jump out of the way not knowing there was another train coming the other way), and another brother died of a surgical error. 

His family is what my uncle referred to as “poor poor.” When I asked for the definition, he told me that the poor people in town were happy they moved in because there was finally a family poorer than them!

My father was a great athlete growing up. In fact, that was his ticket to college. While he had a variety of options when he finished college in Mississippi, his mother took ill and he walked away from his full scholarship to law school and headed back to his hometown in Hightstown, NJ. At that point in his life, he committed to helping as many young men and women as he could to go to college. 

He credits college with the transformation of his life. He realized that college was not only about “the collegiate experience,” but it was also about the experience of being exposed to other ideas, other people, and other cultures. That it would help you to understand that the one experience you have grown up in is not the only experience, but just one experience and that you have the power to change how you live the rest of your life. 

Now, in Mississippi in 1950, there was still a significant racial divide. Well, unless you were poor.  Poor was poor, and back then there wasn’t a separation of races because the people who happened to be black, were also poor. The economic diversity was much greater than the racial divide.

I truly believe my father never saw race, never saw money, and never saw diversity in a negative way. Instead, he saw people – and frankly, still sees people – for who they are. People with good hearts, who every day are struggling to do better for their families than those who came before. 

It is just that simple. You can define yourself by your differences or you can see that we are people and we present with different good and bad assets, but at the end of the day – we all add value and matter. 

On this Father’s Day, I am thankful for the struggles that my father faced growing up, and for his determination to do better for me. I wouldn’t be where I am today if it wasn’t for his motivation, his support, and his tenacity.

What about you? What did your Dad teach you? 

It's an honor

Pattie Foley (VP, Outpatient Services) celebrated her 25th year as a Children’s Specialized Hospital employee this year. She loved working here so much as a student that she never left! And we are thankful for that. 

Pattie Foley (back center) working with a patient in 2000.

My father also worked at the same place for a long time—45 years to be exact. Like Pattie, he had many different jobs within the organization, but neither he nor Pattie have any experience working in another organization other than the one they know.

There may be many of you who are in this same boat. After all, we recognized 24 employees at the Employee Recognition Dinner last month who have been with us for 20 to 35 years!

Much to my Father's dismay, I have worked in a number of organizations. He thinks it means I can't keep a job, and maybe he's right. But I also think it’s helped me to learn more about different organizational cultures. It’s because of those different experiences that I’ve been able to truly appreciate working here.

Today I want to share the things that I see at Children's Specialized that allow me to fully endorse working here – and not just because of my position.

First and foremost, it's about the mission. There is a special thing that drives someone to work for children with special needs. People are hopeful and have an inner strength that says "I can overcome anything that comes my way and help others do the same."

It’s fortitude; a sense of resilience. Whether you are a clinician or supporting others who deliver care, every employee that works at Children’s Specialized has this special trait. I know your stories and I know you have a fight in your belly to help others.

Second, it is about the people. You all rally for each other in ways that stop traffic. I have seen tragedy, such as loss of a child, spouse, parent. Through every unexpected tragedy, you are all there for each other. You are present in every meaning of the word.

You do the big and small things.

People opened their homes after Hurricane Sandy so their colleagues would be able to have  a home-cooked meal, and even started a Children’s Specialized Hospital Crisis Fund and collected/donated TOP time without a moment of disagreement because you wanted to make sure your colleagues could access additional days, and funds, when they were in desperate need.

Through a number of events and activities you raise money for the hospital in such a fierce way and you give to our kids when no one is looking. Your hearts and souls are tremendous gifts.

Which leads me to my last point: there is nothing you won’t do for our kids. Cases big and small, you stretch to fit them all in. You extend yourself to get every child the resources they need, even if you don't know the path right off the bat. You celebrate their joys and their losses as if they were your own.

Every one of you sacrifices freely and selflessly to assist in any and all ways. I have seen so many acts of selflessness with our families that I can't even begin to detail them all here.

You know I’m tearing up at this point, right?

Here is what I do know for sure – when you become an employee at Children’s Specialized Hospital, you become a part of a family. The Children’s Specialized Family and a part of the families that we serve. That comes with real love and real appreciation for every role you play and every task you do. Don't ever take that for granted.

After working in a number of organizations and environments, it’s working at Children’s Specialized that allows me to continue to say it is an honor to work with this amazing staff and patients and families we serve. If asked about our hospital, without hesitation I would highly recommend working here and experiencing the miracles, the love, the ups and the downs that we do.

And when asked, I hope your answer will be the same

Walking and Rolling at the 9th Annual Walk n’ Roll

This Saturday was our annual Walk n’ Roll! Can you believe this was the 9^th one we have held in Johnson Park in Piscataway!?

We started the walk as a way to ”introduce” Children’s Specialized Hospital to the New Brunswick community when we were building/opening our new inpatient hospital in 2007. With just over 300 participants the first year, it has been an extreme honor to see it grow to over 2,100 participants this past weekend!

What I find most special about this event is what it brings out in our employees…

Now, I know we’re all a little competitive by nature – but a few years back, when our Foundation suggested that each site have teams and compete to see who can raise more money, I knew they were on to something!

This year’s top honor of Top Children’s Specialized Team goes to Team Mountainside, led by the dynamic duo of Joan Gowdy and Kaylee McGuire. Congratulations to Kaylee, Joan, and all of our employee fundraisers that have literally been fundraising for months!

Not sure how many bake sales, car washes, and happy hours I’ve been to, but you guys are amazing! Doing anything to help our kids – including coming up with some really great ideas! 

 

Speaking about doing anything for our kids, Richard Raymond (Desktop Support Analyst/NB) and Beth Anne Dobosh (Director of Corporate Foundation Relations/New Brunswick) had a crazy idea. Why not send our VGo robot to the Walk n’ Roll and let Poppy control it since he was unable to attend walk this year?!?

Well, if you know Beth Anne like I know Beth Anne, once you give her an idea it will happen. Low and behold – with the help of Rich, Dr. Chris Haines, and Georgia Cassidy (Clinical Nurse Educator/New Brunswick) – that’s exactly what happened!

VGo joined us all on the start line and he walked… well… rolled with us around Johnson Park! Now that’s innovative!

What’s most special about Walk n’ Roll, and what I hope you can personally experience some day, is something that I cannot adequately describe in writing.

It’s a feeling.  A feeling that nearly always moves me to tears. A feeling of joy seeing patients who left our hospital needing help with the simplest of things; now running freely into the arms of the nurse that helped wipe their tears so many years ago.

A feeling of fulfillment seeing patients from Egg Harbor, Clifton, Hamilton, and Toms River all gathered in Piscataway knowing these patients would have never had access to care, close to home, if we haven’t had the means to expand our services and open new outpatient centers.

A feeling of celebration and acceptance for children and people with disabilities – public outings can often be very hard for families with children with disabilities and communities aren’t always very accommodating or accepting of children’s special needs.

At the Walk n’ Roll we do everything we can to help each family have a great experience and we celebrate everyone’s differences by honoring those special kids with fun team names with some really great shirts!  

Thank you to the entire Foundation team for creating this wonderful event that has evolved from a fundraiser to a day of celebration! Special thanks to Toni Bodrato  (Director of Special Events/Mountainside) who led the planning, fundraising, and logistics!

Also a HUGE thank you to all of our sites for your efforts – whether you won the fundraising challenge or not – your leadership and effort matters. Every dollar that you raised and every person you recruited to walk matters. Thank you for your support and compassion for this event and for our kids.

It takes a well-oiled machine to pull off an event as large as this! Great job everyone!

The Star-Ledger/NJ.com has an album full of photos: Click here. 

News 12 NJ did a short news story: Click here.

What is your favorite Walk n’ Roll feeling or memory?

Building relationships through family-centered care

Being unsure of what the future holds for your child’s health can be a scary place to be. So many of our families experience a number of emotions the first time they come to us for care. With the addition of Family Faculty, we have been able to ease the tension that so many of our patients and their families experience on a daily basis.

I received an e-mail last week about our Family Faculty and knew this would be the perfect example to share in this month’s employee recognition blog post.

Over the past few weeks Amy Myers-Morris has had several families with whom she is working with share their struggles with various hardships. While reflecting on how she can better assist them, she shared with me her reflection on how thankful she is to have our Family Faculty.

Luciana Mendes-McGuire (New Brunswick) has been incredibly helpful with these families recently, as they are Spanish-speaking. In addition to trying to understand new terminology pertaining to their child’s health, the families struggle with trying to understand a language they are not familiar with. Thankfully, Luciana has been able to translate the information they need to make decisions for their children’s care.

This has been such a team effort, to work with these recent families. Megan Fennelly (Hamilton) and Sharon Clarken (Hamilton) helped Amy to think about how to approach each of these families, to determine what help they may need and how to be sensitive to the different cultures. Both Megan and Sharon put in a heavy amount of research to gather resources in the community for Luciana to share with the moms, as well as researched insurance options for one of the families!

One of the families expressed a need for “long-term” assistance, so Megan hit the ground running to find organizations in the area – food pantries, clothing drives, etc – that the family could receive help from. Sharon even provided clothes that her own son had grown out of.

The families that Amy and the Family Faculty team have been working with have expressed how incredibly thankful they are that Children’s Specialized Hospital is a support to them, and how gracious they are for the dedication from Amy, Megan, Sharon, and Luciana through this challenging time.

This is just one example of how Family Faculty has become a key player in helping our families at Children’s Specialized Hospital. Knowing that they are available to assists with our families helps our clinical teams better serve the individual child and also lets the family know that Children’s Specialized is a beacon of hope for them.

Please join me in sharing your memories of working with Family Faculty below. 

The influence of a Mother

Every year, we celebrate Mother’s Day on the second Sunday of May. This year, as Mother’s Day approaches, it reminds me of all of the amazing women I have been blessed with in my life. 

My maternal grandmother was one of 13 children. The first child was born in Poland, and at the turn of the century the family escaped to the United States. The family of farmers was a very male-dominated family, where the men ate first and when they were finished the women were allowed to sit at the table and eat. 

No one messed with my great grandmother. She stood only 5 feet tall but ruled with an iron fist. She loved me oh so very much, but she could make people run from a room with that evil eye of hers. 

My father’s Aunt Doris was a force of nature. Born in Portugal, her family moved to Massachusetts. Later in life  she was widowed with a 1-year-old daughter. She worked at the Reed and Barton silver mill. Aunt Doris and I were fast friends. She loved to cook and I loved to learn. I remember she had a million expressions, and was always taking in someone or lending a hand to those who needed it.

(Left to right) Aunt Doris, my Mom, Me, and my Grandmother at Great Adventure in 1976.

No one has had more influence on me than my own mother. 

You probably already know that I am an only child. There is a special bond between only children and their parents. 

My mother is an artist. She taught me to really see the picture. She would ask, “What do you see?” I would answer, “A black line and red dot.” Then, in her most encouraging tone she’d reply, “Look harder. Can’t you see a face, or maybe the sun?” She taught me to dig deep, not to see what is in front of me but look beyond to see something more beautiful. 

She also taught me to do that with people and in different situations—to not make judgments about what is apparent, but instead to look for the good (or sometimes evil) as it may be. 

My love of art and music come from her. She doesn’t always like the same art that I like, but she always says the same thing, “It has to speak to you. That is what makes it come alive.”

I am blessed to still have both my parents with me, something I cherish every day. While we bicker from time to time, like any mother and daughter, both my parents know that none of the blessings that have come to me would have happened without their unconditional love and support.

My best wishes to all of you who celebrate Mother’s Day! Thank you for all the mothering you do for our children and your colleagues. 

Is there anything you would like to share about how your Mother influenced who you are today?

If a tree falls in the woods…

Often during our Senior Leadership meetings, we discuss how best to educate people about the great work we are doing. I have used the age-old analogy that if the tree falls in the forest and no one hears it, does it matter that it fell?

If we are doing all this hard work, and we are not yet known nationally, does it matter? Of course the short answer is, of course it does. The work we are doing benefits the children we are fortunate enough to care for and that means the world – regardless of who knows it.

Dr. Yvette Janvier (Medical, Toms River) and Dr. Jill Harris (Autism, Fanwood) recently confirmed that their article, “Screening for ASD in Underserved Communities: Early Childcare Providers as Reporters,” will be published in the national journal Autism. The article examines the identification of Autism in children who live in the inner cities. This work was so very important because of the impact on the children who are under diagnosed. but also because the national recognition makes people start to ask, “Who is this Children’s Specialized Hospital?”

I can’t tell you how many times I have been told, “I had no idea that you served that many kids or had that many physicians!”

We recently found out that Dr. Manuel Jimenez (Developmental Behavioral Pediatrics) was selected by the Pediatric Society to present at the Plenary Session on his work on Adverse Childhood Experiences, Literacy, and Kindergarten Problems this April.

I was so excited to share his great work with you all. This is the kind of stuff we need to shout from the rooftops!

This work was started while he was a resident at the Rutgers Robert Wood Johnson Medical School. At this time, he created a program at Elijah’s Promise – the Soup Kitchen in New Brunswick – to begin focusing on children who were served there.

He helped to provide books to these children and encouraged their families to read to them. He continued his work as a fellow at The Children’s Hospital of Philadelphia, and returned to RWJ as the first Chancellor Scholar for the Rutgers Robert Wood Johnson Medical School, where we share his time.

What Dr. Jimenez found was that the average child who was coming to the clinic at Elijah’s Promise had only a few books, where the average child not living in poverty had hundreds of books. It is one of the most essential factors in preparing these children for kindergarten.

We are so very proud of all of the hard work that you all do each and every day, and all of your efforts to help us make more families aware of the great things that happen at all of our sites!

Worrying solves nothing

I work very hard at not worrying about things I can’t control, and yet I still have more sleepless nights than not. After a night full of watching the clock, I received this e-mail from Nancy Panarese, the parent of one of our patients – Christian Panarese. It was the perfect reminder to me, that everyone  can be taught a lesson from sources where it is  least  expected

Hi Amy-

I hope all is well. Again I find myself e-mailing you about Christian. He is a sophomore, and yesterday his class read an article in the paper about worry and how people worry about everything from what clothes to wear for the day to Ebola and world war. When Christian was asked what he worries about he said, “Well, I only have half a brain so I am too busy living my life and enjoying my life to worry about other things that might or could happen. I take every day as it comes and I am happy every day.”

As usual, the class and teacher were silent. I found this all out because the teacher e-mailed me the conversation that happened in class. Our children are so wise. They never stress about the little things. Thanks for listening to me brag again.

- Nancy Panarese

Powerful, right? Have you been taught lessons from a place you least expected it?

True friends leave paw prints on your heart

I recently read an opinion article published in The New York Times titled “My Mother’s Shadow.” As I was reading it, I cried.

If you have read any of my blog posts over the years or even seen me at a Children’s Specialized Hospital event, you know it’s not uncommon for me to get emotional about certain things. So I guess it’s not really a surprise that this article really tugged on my heart strings.

The article is about the relationships that are built between humans and their pets. It has long been reported as one of the most important relationships that people can have in their lifetime. The bond between human and animal is more than just owner and pet. There is a deep, emotional tie between people and their pets.

As a child, I always had either a dog or cat, usually both. I had a Siamese cat, Cracker, for my first 17 years of life. She was the meanest, but most beautiful cat you ever met. She would religiously sleep with me at night, which was coincidentally the only time she wasn’t scratching or biting me!

My parents, myself, and Cracker.

I loved that cat so much, and when she took her last breath, the heaviness in my heart was matched only by the devastation I felt emotionally. I have not owned another cat since.

I have had multiple dogs over the years. Bow Wow, Tangerine, Brandy, and my last dog Kahlua.

Bow Wow was a mutt who actually roamed around the neighborhood. Apparently each family in our neighborhood had a different name for him. The people across the street called him “Freddy,” for “Freddy the Freeloader.” We all set food out for Bow Wow and wherever he happened to be when the sun set was the porch he would stay on for the night.

Tangerine was a Golden Retriever and I adored her. She was terribly overweight but a wonderful soul. When Cracker (the Siamese cat) had kittens, she would put them between Tangerine’s front paws, and they would all stay within both of their reach. When she passed, I got an Irish setter, Brandy, who unfortunately died of a rare blood condition.

My parents, myself, and Brandy.

My last dog, Kahlua, was a chocolate Labrador Retriever. I had cared for Kahlua’s mother when I was in college and was so anxious to find a chocolate female of my own. When she had a litter, I was hopeful one would be a female and I could bring her home. Out of a litter of 11 puppies, there were 6 yellow and 5 chocolate labs, but only one female. She was destined to be mine.

Kahlua was a great dog. When you hear that dogs take on their owner’s personalities, it was definitely true for Ms. Kahlua. She was fiercely loyal and very high strung.

At the end of the night she would fall dead asleep, but instantly be up again raring to go a mile a minute. During my divorce, I am certain I would not have seen my way through had it not been for her constant companionship. Well, her and a good therapist!

When Kahlua’s back legs finally gave out – something common in Labradors, – I knew it was time. She was in terrible pain, and I couldn’t bear to watch her struggle anymore. That decision still goes down as one of the hardest things I ever did. Her ashes are buried at my parents’ house next to Bow Wow, Tangerine, and Brandy. 

Once she was gone, I could never bring myself to get another. The pain was just too hard.

I am not sure what that says about me – that for as much joy each pet has brought me I can’t see myself owning another. With my schedule now, I can rationalize that I am out sometimes six nights a week for work, and it honestly wouldn’t be fair to them to be home alone most of the time. I often wondered whether it says more that as much as I loved them, I wasn’t willing to risk that loss again.

I know we have a lot of animal lovers out there. I’d love it if you would share your pet story in the comments below.