It’s Not Over

By Alex B., patient at Connecticut Children’s

17 year old Alex B. shares her Make A Wish journey and how she’s living life more passionately than ever. To find out more about Transverse Myelitis or to follow Alex’s blog, please visit https://alexandherjourney.wordpress.com/.

IMG_7668About 2, almost 3 years ago a girl that I’ve known all my life said to me, “You know… you will never drive.. You can’t do anything really..that must suck to think of, huh?”

At the time I was brand new to being in a wheelchair. I knew she was wrong, but I just didn’t say anything. I just looked at her until she realized what she said had hurt me.

Little does she know how big of a fire she lit in my heart.

She has no idea what I’ve done since that day. I have exceeded all expectations…even my own.

I have lived a fuller life in a wheelchair then I ever did walking.

In the last 3 years I’ve done multiple 5ks, one being a run or dye. I’ve gone swimming in 15 feet of water, I’ve laid on a beach, went down slides at the park, went on swings, have been on hikes, I’m learning to drive very soon, 2 weeks ago…I went zip lining. I have been on TV, on the radio, swam with dolphins, I have danced more passionately than ever, I have laughed so hard and have loved so deep.

And through this all, my mind has always come back to the girl telling me “I can’t do anything.”

Something she has completely forgotten she said, is drilled in my mind and motivates me every single day to GET UP and get pushing.

I thought I couldn’t go zip lining…that it would be too hard. It was difficult, but that didn’t matter the second I let go and went with no help, by myself, free. Free…something I haven’t felt in years. The feeling of feeling free is a feeling I can’t quite explain. It was a feeling that caused a huge lump in my throat and happy tears. I went and did something that I thought was completely out of the question for me. I am the first person in a wheelchair to ever zip line in Oahu, Hawaii.

I love when people underestimate me, seeing the looks on their faces after they see what I can really do is priceless.

I can choose to let Transverse Myelitis define me, confine me, outshine me, OR refine me..

I can also choose to move on from my struggles and leave them behind me. I won’t forget my past, ever, BUT I will GROW from it.

Next, I’m planning on going either bungee jumping, sky diving or even rock climbing. I plan on living my life to the fullest I can possible, despite ANY setbacks. I promise you, at the end of my life not one person will say I missed out on anything. Ever.

Without my Make A Wish trip I would never have gotten the opportunity to go to the most beautiful place on earth…Hawaii. I wouldn’t have swam with dolphins or went zip lining. How do you thank someone for that? For helping me more than anyone else could have.

Throughout my Make A Wish journey I have grown so much as a person in just a few short months. I had been in a rut for a few months. I was in pain every day and I didn’t have much motivation. I still did what I had to do and laughed often, but it wasn’t anything like I am now. Even though I am in pain every day, I learned I can push through it. I can do it. I have so much motivation now. I have almost all A’s in school. I just want to do everything I have always wanted to do now. I learned that I 100% want to help other people. I want to help other people feel the joy I do when I do things I never thought I could’ve even dreamed of.

My trip may be “over” but it’s not really…my journey is only just starting. I never really thought of the future. I was scared to. I didn’t know what would happen day to day. Now I’m so excited for my life to begin. I’m so excited to have more laughs, have more adventures, to drive, to go to college, to have a beautiful house one day…to just live and be so overwhelmingly happy.

Even though I still don’t know what is going to happen tomorrow, I can still live for today.

Because every day that I am alive and well, is a great day.

A Starfish for Dr. Bennett

WP_20150415_13_05_46_ProIf you have ever read or heard the “Starfish Story” you will certainly understand why Michael and his mother felt a starfish was the perfect gift for Dr. Nicholas Bennett, Director of Infectious Diseases & Immunology at Connecticut Children’s. Below, Meagan Ribera shares her son’s story and thanks Dr. Bennett for making a difference in their lives…

Dear Dr. Bennett,

Two years ago, Michael and I walked into your office for a consultation to see if you would be able to take him on as a patient. That appointment lasted almost two hours and ended up completely changing our lives.

You were not only very interested in Michael’s case, but confident that you could really make a difference for him. Michael has been receiving IVIG treatments for two years now and they have truly improved the quality of Michael’s life.

Time that was often spent in the doctor’s office for checkups and prescription refills is now spent by Michael at school learning new things and enjoying the 4th grade. Time that was lost during recess so that Michael could get a breathing treatment in the nurse’s office is now spent playing with his friends and being silly. The hours of time at home that were spent on the couch receiving breathing treatments and feeling weak are now changed to hours spent playing games with Emma and being the little boy he deserves to be.

Michael has more energy and stamina than ever before and it is a wonderful thing to be able to witness. As his mother, I spent many years feeling helpless when it came to Michael’s health. We spent a lot of time together in ambulance rides, in the rooms of the emergency department and with doctors trying to figure out why he was so susceptible to illness.

It was incredibly difficult to sit by and watch my child suffer. It was even worse to witness episodes in which I thought I was going to lose him…many times right in my arms. No mother should ever have to live through that. Thankfully, because of you and your ability to treat Michael accordingly, our lives have become less focused on his medical issues and more focused on simply enjoying life.

I will never be able to repay you for all that you have done in the past and will hopefully continue to do for my son. You are an amazing doctor, a wonderful person and truly our hero. Thank you for making such a difference in our lives!

Sincerely,
Meagan Ribera

WP_20150415_13_06_00_Pro

Child Life Volunteer a True Mentor at the Medical Center

IMG_0980On Thursday, April 16 Connecticut Children’s Medical Center, in celebration of National Volunteer Week, will honor 385 volunteers with a special recognition reception in the One World Café. Among those in attendance, will be one volunteer in particular, whose dedication and generosity has greatly impacted not only Connecticut Children’s but the entire Hartford community.

Jill Adams has spent every other Thursday evening, for the past 9 years, visiting and engaging patients on the 8th floor. But this is not her only role at Connecticut Children’s. In addition to her time spent as a Child Life Volunteer, Jill supervises 30 volunteers from the Farmington Valley Transition Academy (FVTA), a secondary transition program for young adults with moderate disabilities.

As Employment Specialist for the Academy, Jill shadows each student throughout his or her scheduled shift at the Medical Center, supervising each task and offering her guidance and support. This academic year, her students will have contributed more than 25,000 volunteer hours to local organizations across the Hartford region, including Connecticut Children’s.

“Connecticut Children’s has benefited greatly from the assistance of Jill Adams and the students of FVTA, whose efforts have made numerous patient services, such as the food and entertainment carts, possible.” said Marisol Rodriguez-Colon, Volunteer Services Coordinator for the Medical Center. “Adams guidance of this program has presented endless opportunities for both Connecticut Children’s and the 30 young adults who continue to learn new skills each day as volunteers.”

Such commitment and compassion for both Connecticut Children’s and her students warrants recognition, but Jill Adams wants none of the credit. “I am just one of the many volunteers who loves Connecticut Children’s and knows it feels right to be helping in any way that I can! This is truly a team effort and I am so proud of both Connecticut Children’s and FVTA for embracing this opportunity.”