A Letter to Child Life Students; Finding Hope After Rejection

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Guest Blogger, Belinda Hammond from Child Life Connection 

The gift of time….

I hear from so many students about the frustrations of applying to practicums and internships, and as we know, the process isn’t as easy as we’d hope. I’ve had several students share that they don’t know how to accept or deal with rejection….in my mind, getting a “no” on a clinical application isn’t a rejection. Here are my thoughts….

When I decided to make the return to child life about 10 years ago after leaving to pursue a doctoral degree (which I never finished due to health issues), I had relocated to an area that had no child life and no children’s hospitals. I began by presenting the idea to my local community hospital, but couldn’t convince them they had the need, even though I recognized it as my own children received medical care in their facility. I started seeking out other community hospitals in the area and found two with pediatric beds and both were interested in child life, but neither had the funding to add a position….but, both saw potential in the philosophies of child life and how they could impact their pediatric patients. I decided to start doing consulting work, first as a volunteer for 6 months in each of the two programs to see what I could do and how I could best impact my local programs. Through my child life lens, I saw a playroom that wasn’t inviting for children and was used as a storage closet more than a playroom. I saw an opportunity to make a difference and reintroduce play to these patients. I reached out to a local university, and found a team of artists looking for a capstone project, and together we re-created an amazing pediatric playroom. From there I found a grant and funded 25 more original mural for hospitals throughout the region that also provided medical care to pediatric patients. I introduced myself to several non-profit agencies that offered a range of opportunities for play (from mobile playrooms to technology to individual toys and crafts) and began developing play programs for my local hospitals, and they began to see the impact child life philosophies could have on their patients and families. Today, two of the programs in my region now have a child life specialist on staff, with a third preparing to offer child life within the next year. I have also become an active board member of one of the non-profit agencies, and am able to introduce their program to other hospitals around the country!

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I was “lucky” that I had a salary coming from part time teaching in community college (something I had done since working as a CCLS in-hospital) – I could afford to volunteer to get my consulting started. Eventually I moved on to teaching university level (undergraduate and graduate courses), but was always a “freeway flyer” because that meant I could continue teaching, and continue building my consulting service, while also pursuing a doctorate degree. I received a postcard while in my doctorate program about training to teach online, and thought about how nice it would be to not have to travel so much to teach, and signed up! And it was because of my studies that I had a meeting with our university’s extension program about my dissertation idea (to pilot an inservice training online) that we started talking about what I do. About 2 months before this meeting, I found an online class in need of an instructor for a single semester while its regular instructor was on maternity leave, and I was able to showcase the portion of the class I had developed, and was offered the chance to teach this class once again for my own university. What started as a single class turned into an entire academic certificate program, and what started as the opportunity to create one program turned into three. Because of this “chance” meeting, 7 other CCLS’ were also able to start teaching online there as well! Remember, online child life wasn’t even a “thing” when I started pursuing it!

So why am I telling you about my path? Because if you had asked me 10 years ago where I would be now professionally, I would never in my wildest dreams have said that I’d be successfully working again in child life while being able to work around my kids schedules (I work from home, teaching online full time) but making what I know is an incredible impact on children in hospitals around the globe. There was no job listing for my consulting role or the creation of my first academic program in child life. I simply took the time to create new challenges for myself, and those next steps in my career path made perfect sense once I got there.

The one thing that didn’t make sense at the time was the first child life program where I volunteered in-hospital for 6 months, and then for 2 years supporting their mural development and play programs through consulting…..I was offered their first paid child life role, and for reasons I still don’t understand, it ended up going to someone else who was already a hospital employee with a child development background, but no child life experience. I was devastated, not because I didn’t get the job, but because I felt I had gone above and beyond anything they asked of me with the promise that when the job was available, it would be mine.

Why do I bring up this “heartbreak”? Because at about this same time, my son started having health issues that were soon diagnosed as Epilepsy….and I decided to home school him until we could get better control of his seizure activity. What a gift it turned out to be that I wasn’t working 90 minutes from home, and that I was able to teach online and be able to be with him and supporting both his education and his health. And while it was tough to see in that moment, what a gift it was that the job I had worked so hard for wasn’t meant to be mine. An even great gift is finding out one of my former students took on that CCLS role a few weeks ago, and without the path that I found myself on, that program wouldn’t have existed and she would never have been my student. I truly believe this is the path we were both meant to take!

BelindaHammond&JustinAnd while home schooling my son, I decided to enroll in a few classes to learn how to better support some of my son’s physical challenges ( he was also born with low muscle tone and had several challenges as a result) – and enrolled in two classes that focused on exercise & sports physiology and motor learning. I found many similarities between these courses and the supports I had provided in hospital, so in addition to utilizing my new skills with my son, continued to take classes that I thought would help me professionally. I reached the point where I had completed all of the classes and had only research classes remaining for a new masters degree, and thought it made sense to complete these as preparation for returning to my doctoral studies!

I should also add that while my doctoral studies were always a part of my plan, that first attempt ended with both myself and my newborn experiencing significant health issues, and I had to decide which direction to focus my attention on (obviously, health won!). I reinstated about 10 years later and that was the reason for my meeting on a pilot study for my dissertation….and found myself having to decide between my doctorate once again or creating an online academic program in child life (know that opportunity might never appear again, I jumped at the chance), and then found myself unable to reinstate again to complete my degree. I’m now pursuing a new doctorate which better fits my experiences over the past 20 years, but I have to say that I absolutely love the academic path I’m now on, focusing on Educational Leadership (although I have so many more insights and experiences because of my previous studies in Special Education, Disabilities and Risk Studies, and both absolutely influence who I am both professionally and personally)!

I have so many stories I could share of connections and timings that have made so many opportunities possible – not just for me, but for my colleagues and my student/colleagues! Timing isn’t about what you think should be happening and when, but I absolutely believe it has more to do with the universe holding a plan for each of us – for finding us those perfect opportunities and the perfect time, and we may not understand they “why’s” until we’re able to look back on the entire timeline of what happened beyond that “no” and that guided us towards the right “yes”, how that was the path we were meant to be on. Let go of your frustrations (I know, easier said than done) and find those opportunities that speak to you the most, and run with them! And don’t give up on your dreams….know that not every dream needs to become a reality right then and there, and that there’s meaning to every experience and that those experiences will make you stronger in whatever you pursue! The right path for each of us is to continue reaching for goals, and knowing goals can lead you down a different path than you anticipated, but that crazy unanticipated path can still help you achieve those same goals. Allow yourself the opportunity to experience more than what you planned, but what you were meant to experience!

BelindaHammondBelinda Hammond, M.A., M.S., CCLS, CIMI. Ms. Hammond is the founder of Child Life Connection, a consulting service created to build or enhance play opportunities in medical facilities providing services for pediatric patients, and to provide/support Child Life/Therapeutic Play programs for pediatric settings, all in an effort to make being in the hospital less scary for children. Ms. Hammond currently is a full time lecturer with Eastern Washington University (Children’s Studies/Child Life & Health), and a part time lecturer with American Public University (Human Development & Family Studies/Child Life) and California State University Northridge (Child & Adolescent Development/Child Life). Ms. Hammond is currently completing her doctoral studies in Educational Leadership through California State University Channel Islands/Fresno, and holds a B.A. in Child Development and an M.A. in Educational Psychology/Early Childhood Education with a specialization in Play Therapy (both from California State University Northridge) and an M.S. in Sports and Health Science (from American Public University).

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Navigating the Road to Becoming a Certified Child Life Specialist 

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Coping with a Congenital Heart Defect: The First Year

 

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Guest Blogger, Lauren Backe; Mother and Advocate

Various media outlets caught wind of our Jack winning the national Starlight Children’s Foundation’s ‘Design a Gown’ contest— where people across the country were encouraged to design a creative hospital gown for children facing challenges in the hospital. He entered the contest for his sister, Everly, who has a Congenital Heart Defect (CHD). Upon his win, 30,000 comfortable, imaginative hospital gowns will be made and distributed in the likeness of his heartfelt creation: hearts and lots of printed glitter! Since winning, numerous people have approached my husband and I wanting to learn more about CHDs and Everly’s journey with it thus far.

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I didn’t know much about CHD until July 2017. I didn’t think I knew many babies who had it (turns out, I do know a few: an old neighbor’s son, a classmate of Jack’s brother, a friend of a friend’s daughter….) CHD is the most common birth defect. I asked LOTS of specialists (everyone we saw in July and August) what could’ve caused Everly’s CHD. They all assured me that I didn’t do anything to have caused it. Everly’s genetic testing came back clean. The heart starts as a tube and grows and branches off from there. From all I’ve learned about fetal heart development- it seems to me- it’s just a complete miracle that so many hearts form “normally.”

Everly was born in August. We found out a few months before birth that she had a CHD that would need to be repaired before she left the hospital. I remember the day vividly. After an ultrasound at around 30 weeks, my local OB said the heart looked a little off and we should get an ECHO to rule anything out. Not expecting to hear anything “bad” at the ECHO, I went by myself. I knew the news wasn’t great when the cardiologist said to me “So you came by yourself, huh?” I left the appointment with pictures drawn of our unborn baby’s heart compared to a “normal” heart and the cardiologist offered to call my husband that evening.

After learning her diagnosis, we set up to find the best surgeon for our girl. We are lucky that there are several “3 Star” rated heart hospitals near by. One particular surgeon at one of these hospitals came very highly recommended by just about anyone you asked. After meeting with him, we knew he was the one!

We met with an Maternal Fetal Medicine Specialist (high risk OB) and set up an induction day so that all of the right people for Everly would be ready for her when she was born. A few minutes after birth, the NICU swept her away to get her lines set up to receive  medication. They also performed an ECHO on her to get more pictures of her heart outside of my belly.

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CHD is 1 in 100 births.

Everly’s CHD is IAA/VSD (interrupted aortic arch and ventricular septal defect).

IAA is 2 in 100,000. IAA is about 1% of CHDs.  

Everly had the Norwood surgery to repair her IAA at 3 days old. The Norwood surgery for the IAA defect is not commonly needed. We had hoped that Everly would have ONLY ONE open heart/bypass surgery right after birth that would fix the IAA and the VSD. Unfortunately, her heart did not grow as expected between the fetal ECHO and birth, and she was not able to have that surgery (which is a less risky open heart/bypass surgery- STAT 4). STAT levels range from 1 to 5 with 5 being the most complex/dangerous.

Instead, she needed to have a very complex surgery (STAT 5 level). The Norwood corrected the IAA, but not the VSD (some parts of her heart needed time to grow before repairing the VSD). She will need to have multiple open heart/bypass surgeries in her life.

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In October, Everly was briefly hospitalized for a virus. Thankfully, we were able to take care of her the majority of the time at home with home oxygen tanks/machines.

She had a “cath” (cardiac catheter) in November 2017- this looked at the functioning of her heart to determine next steps- it’s a surgery with intubation and anesthesia but we were only there one night- it is not “open heart”. In the cath, they were able to do some “ballooning” to help buy a little bit of time.

In December 2017, Everly had an additional shunt put in (STAT 4) because she was not yet big enough for the “full repair”- the Rastelli procedure. She now has two shunts- one from the Norwood and then the additional one put in, in December.

In April 2018, Everly was briefly hospitalized for a virus- she needed some extra IV fluids to make sure the 2 shunts in her heart didn’t risk clotting.

The Rastelli surgery will be next. This will put a conduit in- tube and valve and fix the VSD.  She needs to be big enough for the Rastelli (STAT 3). The conduit is bigger than a shunt so there needs to be enough space in her chest/heart for this conduit to fit. After the Rastelli, we will hopefully have about 3-5 years until the next open heart surgery.

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Approximately every 3-5 years, she will need to have the conduit replaced. When she is big enough for an adult size conduit, the valve in the tube can be replaced through her leg (vs. an open heart surgery). However, the adult size conduit will not last forever and she will need to have the conduit replaced (more open heart surgery).  It is too hard to predict how many valve and/or conduit replacements she will need in her lifetime.

Everly is very medically fragile currently since her heart functions like it only has one chamber (not two like a normal heart), but will hopefully be considerably stronger after the Rastelli surgery. The time between the Norwood and the Rastelli is called the “interstage”- Everly is part of a “Norwood Clinic” where we have a lot of specialists for just a few patients because of the extreme fragile-ness. (If Everly had had the one time repair we initially had hoped for, we wouldn’t be part of this “group”). We hadn’t planned for this (the Norwood surgery) so we didn’t know the specialists. BUT we were so lucky to be handed this amazing team. They are truly amazing and have helped us so much in these very critical months. We will continue to be part of this “Norwood Clinic” until the Rastelli.

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So in short…. What have we learned over the past 10ish months?

Choose joy each day, find joy in small things, celebrate all victories- even small ones, take things one day at a time, try not to take time with family and friends for granted, try to live in the moment, try not to sweat the small stuff, breathe…. This little girl and her strength and Jack’s ability to adapt to all the changes has taught us so much in 9 short months. Everyday, we are grateful for both of them. Perspective is everything.

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