Empowering Hospitalized Adolescents: Spotlight on Wish Upon a Teen

Wish Upon a Teen

As a former Child Life Specialist, I had been aware for quite some time that adolescents were a forgotten population in the medical world. I constantly had to tell my teenage patients bad news about everything from diagnosis, to missing homecoming games, to having to share rooms in a packed hospital with a sick two-year-old that never stops crying.

According to the National Cancer Institute at the National Institutes of Health, roughly 70,000 young adults between the ages of 15-39 years old are diagnosed with cancer each year in the United States. Even though the medical community continues to make great strides in the diagnosis and treatment of cancer, it still remains the number one killer, when it comes to diseases, of children and teenagers in the United States—more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.

You would think with numbers like that, hospitals around the country would know how to treat teenagers and understand how the needs of teenagers are different from those of children or adults. That they’d understand that being a teenager is difficult in general, and then getting a diagnosis of a severe illness like cancer on top of it can make things seemingly impossible. Going through puberty, navigating junior high or high school, formulating plans for the weekend (not to mention for college), and now to add in surgery, chemotherapy, hospital stays, meds, and being sick all the time can really rattle the strongest of people. The sad truth is that most hospitals do not understand what teens need or want.

While working as a Child Life Specialist, I frequently had to tell the teen patients that, in addition to going through difficult procedures, we also had no programs or resources for them. The hospital rooms weren’t any better, there never seemed to be that opportune moment to ask the 16-year-old if he or she would rather have a Winnie-the-Pooh-themed room for her 9-week stay or if Mickey and Minnie were sufficient. On one especially bad day at work, when I had seen enough disappointment, I made a promise to myself, I would find a way to provide the programming and resources that these teenagers needed and longed for.

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Fast forward to 2011; I was preparing for my first ever Spa Day event at a skin care clinic in Los Angeles. I had achieved my goal, Wish Upon a Teen, the non-profit I had started to help teenagers who were living with severe terminal or life-limiting medical conditions, was up and running. It was my mission to provide programming to normalize their environment to the teenagers that the community was not. My objective for Spa Day was to do more for the girls than just give them a day of pampering. The goal was to bring together a group of girls who were all in treatment for severe life-limiting or terminal illnesses. Many of them were dealing with serious stages of cancer, or awaiting organ transplants. To provide them a safe space where they could hang out, talk, and offer each other support. These girls, due to their medical conditions, were not able to engage in traditional ‘teenage girl’ activities, like hanging out at the mall or going to a friend’s house. With over 15 Spa Day Programs completed in the past four and a half years, we have added several other programs to provide to the adolescent community. This past fall we took our spa days national by launching our Glam Teen Tour, which will bring spa days to teens around the country.

Our Design My Room ™ program went national this year and we are thrilled to offer it in over 47 hospitals across the country. Design My Room ™ is a hospital room-decorating program for teenagers undergoing long-term hospitalizations (two weeks or longer).  Most of our teens are in the hospital 6 weeks or longer which makes this program vital to the adolescents we serve. Design My Room ™ gives the teen the ability to take back some of the control that they have lost while hospitalized which will give a domino type of effect by aiding in a more positive outlook, which can then help recovery time and the need for lower pain meds. It’s such a fun program to put together as we follow the teen’s lead with the theme that they choose. They get new bedding, instead of those scratchy hospital sheets and blankets. We put fun wall decals up in their room. They get cozy blankets and pillows to cuddle. Picture frames, rugs, lamps and anything else to bring the element of home to their hospital room.

Design My Room Collage

I am so excited to see where the year will take us and our teens and families we serve. It’s been such a fun ride so far! If you or someone you know is either interested in the programs we provide or becoming a sponsor or donor, please email us at info@wishuponateen.org.

Learn more about us at WishUponATeen.org and be sure to follow on Facebook, Twitter, and Instagram.

Michelle Soto

President/Founder

Wish Upon a Teen

261 E. Maple Rd

Birmingham, MI 48009

248-792-2938 office

631-356-4066 cell

 

 

 

 

10 Things I have Learned From My Daughter’s Diagnosis; Joy’s Story

I would like to introduce you to one incredible mom, Tamara as she shares her journey of parenting and advocating for her daughter, Joy.

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Tamara Hansen lives in Northern California and is a wife, and the mother of two young children. Her oldest daughter Joy (4) was diagnosed with hip dysplasia at birth. Both of her hips were dislocated and out the socket. Joy is a smart and vibrant young girl, who has now had four surgeries, and faced a few complications along the way. Here she shares what she has learned on her family’s journey.

The 10  Things I Learned From My Daughter’s Diagnosis

1. Patience is a virtue, but it is also necessary. There is so much waiting – waiting in-between and during appointments, for the doctor, for x-ray results, and of course, there is the dreaded waiting during surgery. Time also seems to move at a snail’s pace while waiting for her to recover from these surgeries.

We are always waiting. We are currently in the midst of the longest wait we have had, up to four years before the next planned surgery. Four years, that’s a really long time when so much of the past four years have been spent at the hospital. We always hope for good news, but are prepared for bad news. The anxiety is all in the waiting. As my husband I have grown accustomed to saying after any news, “at least now we know.”

421233_4968839705951_1406490286_n2. There’s a grieving process. Joy’s hips were found to be abnormal within a couple of hours of her birth. Of course I was over the moon, happy new mom on the outside, but on the inside it was much more complicated. I was devastated that there was something wrong with my baby. Don’t get me wrong, I sat for hours holding my long-awaited daughter, falling more in love with her by the minute. But, I also sat for hours crying over her. I was heartbroken that I couldn’t hold her without this horrible brace between us, that it made establishing breastfeeding challenging and it was a pain to change her diapers. I was sad that she couldn’t wear any of the cute outfits I received as shower gifts, I ached to give her, her first baths and I wanted all those pictures of my newborn to be without that darn contraption.

I was also angry. I had worried about everything when I was pregnant, and I mean everything. I read all the books, did all the research and I was prepared. Prepared for anything, but not this. Why hadn’t anyone warned me this could happen? I hadn’t even heard of hip dysplasia. So many questions and not so many answers in those early days didn’t help. The worst of it was the guilt I felt for being upset or complaining when there were so many other families facing far worse circumstances. This wasn’t life-threatening, but it certainly felt life-altering. Throw in those awful postpartum hormones and I felt myself heading toward a deep depression. Yet, somewhere in those few months when I felt robbed of the “normal” newborn experience, I realized I had to grieve, and it was okay. In fact, it was essential to go through the process to eventually get to a place of acceptance that this was going to be a part of Joy’s story, our family’s journey and we were going to face it head on.

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3. The present really is a present. The thing about receiving a big diagnosis like this is you can easily get caught up replaying the past in your head. Going over and over the medical information, the treatments, the doctors’ explanations, and the traumatic moments. There are the doubts. What if we had seen this particular doctor sooner, or what if he did this procedure first, or instead of? How many more surgeries will she need? Will this get easier, or more difficult, as she gets older? “What ifs” can easily lead to a lot of sleepless nights.

Our beloved surgeon has helped me tremendously in keeping all this in check. Each time we see him, he reminds us that we have had some setbacks, but to focus on the successes and stay present. It’s not always easy, because the physical and emotional effects are always there, but we focus on how far she has come and how well she is doing right now and that’s the best present we could ask for.

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4. It really does get easier. I know that’s a hard one to swallow, even for me sometimes. There was a time not too long ago when every doctor appointment, even routine, would send me home fighting back the tears. I would spend countless hours on the Internet looking up information, seeking answers and sometimes even spending the next few days having a pity party for one. Pretty much feeling like I had to go through the steps of grief all over again, with the bad news we had been handed.

Fast forward to now, when we have become veterans to traumatic procedures and getting mixed results. We have more time to prepare Joy, and ourselves and that makes it easier. I am still sad and angry that my sweet daughter has to deal with all this, but I don’t let my emotions overcome me anymore. I make it a full-time job to ensure she is being treated by the best doctors and has the best opportunities to cope with her situation.

As harsh as it may sound, I sometimes feel callous to it all. That I have no more tears, no more energy to add to my worry list and that I almost welcome bad news because it’s better than anticipation of bad news. We get the facts, we process, we move forward. It is all familiar, which makes it easier to cope with.

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 5. First and foremost, I am her advocate. I have always tried to live my life without regrets. In the end of a bad experience I would focus on what I learned and move forward. However, the way things were handled by some medical professionals in the beginning of Joy’s diagnosis left me reeling with regret for a long time.

I shouldn’t have listened to a certain nurse, I should have sought out a different specialist sooner, I should have stopped that pediatrician from that exam and the list goes on. I finally had to forgive myself. I was a new mom, this was a condition we knew nothing about and it was not our responsibility to see that we received compassionate and knowledgeable care. We were not at fault.

Moving forward there would be no more shortcuts, we would seek out only pediatric specialists, we would ask questions, take notes and make sure we always understand the answers. I used to worry about hurting feelings or stepping on toes by switching doctors, or asking for second opinions. Not anymore. I have learned to be strong, assertive and settle for nothing less than the best care for her at all times.

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6. Child Life Specialists are more important than surgeons. Don’t get me wrong; we have been blessed with some amazing doctors, nurses and what they have done for my child, what they do for all children, is immeasurable. Yet, when I put Joy’s medical needs in perspective I often think back to the age-old saying “all I want is happy and healthy baby.”

The truth is we don’t all get a healthy baby. We have no control over that, so instead I focus on the happy. If nothing else, I can ensure my daughter grows through her challenges and still lives a happy life. None of this would be possible without the help and support of the Child Life Specialists we have met along the way. Their tools for preparing her for procedures, processing traumatic experiences and giving her a voice and control when she has no choice about what she must endure has been paramount in keeping her a happy little girl. The support we have been given by these wonderful, caring and gentle people are my guiding light on this journey and I am forever grateful. I am even contemplating going back to school and becoming one myself.

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7. Support can come in surprising ways. To be brutally honest, I have found myself with hurt feelings more than once when some of my family and friends weren’t able to offer the kind of support I would have expected. I know their hearts were in the right place at the time, but saying things like, “she won’t even remember”, “at least it’s just her hips”, “be lucky she’s in that cast so you don’t have to chase her around”. These comments do not help, they hurt.

The things that do help are a listening ear, understanding why it’s not that simple, why we can’t come to the park to play and that sometimes I just don’t want to talk about it. Those that have been the most supportive are the friends I have made online. The moms who in my support groups that live all across the country and even on the other side of the world. They just get it. We just had our second annual meet-up with families that share this journey with us semi-locally and there are no words on what it feels like to hug those moms.

My relationship with my husband has surprised me as well, I can’t imagine doing any of this without him. I’ll never forget the day before Joy’s first surgery. I called him at work from a parking lot crying hysterically that I didn’t think I could go through with it. That she was just too little and this was just all too much. He came home from work that day and walked upstairs where I was packing our bags and started reading me our wedding vows, “…comfort you in times of sorrow and struggle… when life seems easy and when it seems hard..” We both hugged and held each other close with no words for a good half an hour. I knew then God matched me with the just the right person to share this with.

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8. To take care of myself too. I admit I am a work in progress on this one, but I know one of the most important things I feel that I can do for my daughter is model self-care. I had a therapist tell me long before I was married or had children that I was prone to being co-dependent. That was no surprise to me based on my own childhood and some of the choices I was making as a young adult. What did surprise me was how much a simple analogy he gave me to visualize would help me through life’s biggest stresses.

So, when I start to get exhausted and burnt out I always think about how a flight attendant instructs you to activate your mask before helping others or a child. I try to model for Joy that when I am feeling anxious or upset to go for a walk or ride my bike, take time out to have coffee with a friend, spend some time writing my feelings out or just take some deep breaths. It’s like a double whammy – I get a break to fill my cup, and I get to teach my children how to emotionally take care of themselves too.

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9. We get our strength from each other. I wish I could take credit for how strong this journey has made me. The truth is, an inner strength that I never knew I was capable of, appeared the day I first handed my tiny baby to a nurse and sent her into her first operating room for 8 hours. Where did it come from? It came from her. It came from watching her wide trusting eyes as she went behind those doors without me. It came from her smiling and cooing just as any other three-month old would despite wearing a body cast. It is her determination to catch up on her milestones after surgery. It came in watching her stand up, take her clothes off and climb into the bathtub after three long months of not being able to walk and only have sponge baths.

When she was first diagnosed I was terrified that I wasn’t strong enough to get her through it, but she in turn was the strong one, and that got me through it. In the past few years we have a special connection, we can look in each others eyes and see who needs to be strong for the other in that moment.

2014-05-28 15.34.3310. There are some heart wrenching lows, but there are some incredible highs. I really can’t imagine a much worse feeling than watching your child frightened or in pain and there is nothing you can do about it. I would trade places and be the one to suffer if I could. Those moments are the lowest of the low. When you are that low, diagnosis don’t matter, treatments don’t matter and the future does not matter. I don’t care what any doctor as to say. I just want my precious baby to be free of pain and discomfort. “Heartbreaking” doesn’t touch it, it’s just indescribable.

On the flip side, when you and your child have seen lows, you also get the blessing of some indescribable highs. Watching my daughter go through surgery after surgery, casting, bracing and long recoveries be able to learn and re-learn to walk , ride a bike, run and do ballet alongside her peers, is nothing short of amazing. I am filled with an overwhelming amount of pride and love to witness her resilience. When you have overcome so much to get there, your heart and soul are overflowing with, well Joy.

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Click here to learn more about Hip Dysplasia

Facebook Community Page: DDH Hip Dysplasia- Children Facing Surgery or Spica Casts

Facebook Community Page: Raising Children with Avascular Necrosis

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Play Group vs. Support Group

How to Help During a Hospitalization

Child Life Encounter Post NICU

“Divorce is The Worst” Spotlight and Giveaway

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Divorce is on the rise globally and it is having an impact on the children involved. It’s the new normal with kids being raised by single parents, blended families or having their time split between two households.

So how do we explain divorce to kids? Is there a way to validate their feelings and support them through this drastic change?

I think there is. When we talk with honesty, compassion and allow kids to express all emotions involved, it will help ease this transition. We know that talking isn’t the only way kids learn, we need to use other modalities such as play, creative arts and books.

I am ecstatic to share an amazing resource by a good friend, Anastasia Higginbotham,  the author of Divorce is The Worst.

Anastasia and her Creation

I made this book because it’s the one I want to read on the subject of divorcing or separating parents.

My parents divorced when I was 14 and said it was for the best. They told me: “Don’t let this affect you.” I saw them struggling with a choice that was obviously painful for them and though it broke my heart when my dad moved out, I did try to not let it affect me. This ensured that the heartbreak would follow me right into adulthood.

You can’t get over something you never went through in the first place. As grown-ups, we don’t want kids to be hurt by our choices. We’re reluctant to admit that our broken vows and failures cause them pain. But when parents’ lives unravel – for any reason (divorce, family illness or death, financial stress) – it affects the kids, even if no one’s throwing dishes across the room or weeping on the couch all day long. Though this may also be happening.

Other divorce books try to make kids feel better about the divorce. Mine supports kids to find out how they feel at all. The truth of their experience is the only thing that matters.

Purchase through the Feminist Press or through your local bookstore.

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About the Author

Anastasia Higginbotham has worked in New York City for 20 years as a speechwriter for social justice organizations.  Her essays have appeared in Ms., Bitch, Glamour, The Sun, The Women’s Review of Books, Women’s Media Center, and in various anthologies, including Yes Means Yes: Visions of Female Sexual Power and a World Without Rape. She is a 2015 Hedgebrook Fellow. Follow Anastasia on TwitterInstagram, and Facebook.

Giveaway

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Good Luck! The winner will be chosen on 6/11/15

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