This past week has been a really inspiring one for me. I have seen a number of people shed their Clark Kent exterior and reveal the Superhero that lives inside of them. Each of these people have made me stop and look at my life and think about what I can do to bring out my inner superhero.
While I try to come up with something, I have decided to honor each of these people by bragging about them:
I wake up every day and smile. I smile because I know that just across the hall, tucked away in his crib, is my own superhero – Sam. Most mornings I wake up listening to Sam play in his bed. His current favorite game is the “butt up… butt down” game. It is exactly as described – Sam stands up and yells “butt up”, then Sam sits down and yells “butt down”. He plays this game every day for hours on end. And I enjoy every minute of it. As a former 24-weeker, there are so many reasons this simple game is nothing short of a miracle. The odds were stacked against Sam surviving and the odds were also stacked against Sam surviving without any long term issues. But don’t tell Sam that! From his first day to now, Sam has lived his life thumbing his nose at the odds and jumping every obstacle placed in front of him.
I admire his spirit so much, and am in such awe of my Super Sam.
When I became a preemie parent, I was totally and completely clueless. I walked into the NICU every day sporting a big pair of rose colored glasses and a deer-in-headlights expression on my face. Around my third day in the NICU, I met Elisa. In very little time, Elisa became my rock and support system. She was there for me through all the ups and downs of the NICU. Now that we are both NICU grads, we have stayed close.
For Elisa, the hard part of becoming a preemie parent wasn’t her NICU experience, but the 85 days she spent living in the hospital before having her baby due to her water breaking when she was just 19 weeks pregnant. While Elisa was hospitalized, she became online friends with a group of women from around the world who were in her same situation. These women called themselves the pPROM warriors. They were there for each other through it all. They supported each other through the rough spots. Leaned on each other when they needed the help. They were there for each other to celebrate the births. And they were there for each other to mourn the babies that didn’t make it. This remarkable group of women are all truly warriors.
A few days ago, Elisa posted something on Facebook that immediately reminded me why she is a real life Superhero.
Meet Lila. Lila is one of the pPROM warrior babies. She is a beautiful and loving two year old girl who has already defied many odds. In 2011, Lila was diagnosed with Spastic Triplegic Cerebral Palsy. Because of this disease, sweet little Lila has yet to walk or even sit on her own. She has spent most of her life in therapy, working through all the traditional methods to help strengthen her body to allow her to do these simple tasks. While the traditional therapies have helped, there is still much progress to be made. Her doctors and therapist suggested that Lila try horse therapy or hippotherapy. Lila went for an evaluation, and in just that one session, there was improvement in Lila’s body strength. Of course, Lila’s insurance will not pay for this.
Enter Superhero Elisa.
Elisa quickly gathered the pPROM warriors and started an online fundraising campaign. They set a goal of $5k, which would pay for six months of therapy. In just 48 hours, they had already raised well over half of that goal. They raised so much so quickly that Lila was actually able to start therapy.
Get out your tissues, because this inspiring video of Lila’s first therapy session will make anyone cry.
Elisa – look at what you started and inspired. You are an amazing woman and a real Superhero!
I have known Gladys for many years. She has always impressed me with her big heart and sunny outlook on life. When I left my job at Yahoo!, one of the hardest things for me was knowing that I wasn’t going to see Gladys every day.
Our lives have gone in different directions, and we have not stayed as close, but thanks to the power of Facebook, I always know what is going on in her life.
A few months ago, Gladys posted something about training for an IronMan event. At first, I was sure that was a typo, because usually people do a marathon or something before they take on an IronMan. Nope. It wasn’t a typo. Never one to do things half-way, Gladys decided to apply her tenacity to a good cause and joined Team-in-Training. Gladys raised over $8K to help find a cure to cancer.
Now, the weekend of the IronMan is here and I am in total awe of Gladys. She is an inspiring and amazing woman, and I will be cheering her on as I track her progress through a grueling course I can’t even dream of completing.
Go kick some ass Superhero Gladys!
A while back, I dedicated a blog post to Kenna, the 4th smallest preemie in the world to survive. As amazing as little Miss Kenna is, her mom is something else. Nicole has been through the ringer the past few months. Her baby was born way too soon and way too small. She spent 183 days commuting to the hospital, while trying to run a small business, keep up her writing… and oh yeah, raise a 14 year old son. Nicole did all of this, and did it with an amazingly positive attitude.
Now, just two weeks after finally bringing Kenna home, Nicole is once again trying to balance everything while commuting to the hospital. Despite all the hand washing, sanitizing and house arrest, Kenna managed to get really sick. She was rushed to the ER in respiratory distress a few nights ago and was admitted, put back on a ventilator, and hooked back up to all the machines she had just recently been freed from.
This would be enough to send any parent into a “why me” tailspin. But for a preemie parent, who just got to take their precious child home after 183 days, this is even worse. You would think that Nicole would wallow or get angry or lose some of her positive outlook.
You would think.
But no, Not to Superhero Nicole. Once again, she is maintaining a positive spin on things and keeping her spirits up. I am in awe of her strength and am proud to be her friend. To follow Nicole and her amazing daughter Kenna’s story, like them on Facebook.
For the past ten-ish years, my mom has had a ton of medical issues. She has been diagnosed with Type 2 diabetes. She has a rare autoimmune disease called Adult Onset Stills Disease. She spent two weeks in a not-so-modern Italian hospital with a mystery disease. She had a massive heart attack in 2004 that should have killed her but instead killed over 1/3 of her heart. In 2009, she had both of her hips replaced. In 2010, while we were still seeing Sam through the worst of his NICU days, my mom got word that her heart was actually improving and she was now a candidate for triple bypass surgery. Mom had her bypass in July of 2011. In April of this year, my mom had to have part of her toe amputated due to an infection. Then, two weeks after that, while driving her brand new car, my mom passed out behind the wheel and crashed. It was discovered that she had an undiagnosed heart arrhythmia and had to have a defibrillator implanted. (There is more, but you get the point.)
Through all of this, my mom has not complained or adopted a “woe-is-me” attitude. Well, she has complained some, but who the hell wouldn’t! Instead my mom has channeled all of her energy into not letting disease define her. She gets mad if you want to drop her in front of the restaurant as opposed to letting her walk with you from the parking space. She yells at the pills she has to take every day because she would rather not have to take them.
Most of all, my mom keeps doing things my mom would have done before all the medical issues. In fact, after just getting approval from her heart doctor to do things like swim or kayak, my mom went out for a 2-hour kayaking expedition. Then, the following day, she and my dad took the kayaks out again… and my mom wore my dad out. He turned back and went to the beach while my mom stayed out and kayaked some more.
Talk about an ass-kicking Superhero!
Who has inspired you today?
Elisa Dumesnil says
Lovely post, Melissa. And I am so thrilled to see you sharing Lila’s story and our hopes to help her with hippotherapy during this critical developmental period. I am so grateful you and I had each other in the NICU and will never forget the reams of texts we shared while tethered to our respective incubators holding our little baby boys. So little. I love reading your words about my beloved pPROM Warriors, but you give me too much credit — for it’s the collective effort of these women that deserves the cape for how this amazing effort is going. Lila WILL sit. Lila WILL walk. And what you’ve done by loving Lila (a stranger to you), giving to this effort and spreading the word? Well … you said it best, “Superheroes come in many forms.” Thank you, Melissa!
Vickie Blanchette says
Ain’t it just like a Super Hero to downplay their awesomeness?!! Hi Melissa! I am Lila’s Nana and I also thank you so utterly sincerely for sharing Lila’s story and giving to her cause. Where do you hang your own cape when you go to bed each night? I am so happy that your little Sam is doing so well. Way to go Team Sam!!! And as for our Elisa, she has a special knack of being a friend……plain and simple. She is witty, insightful, supportive, smart, inspiring and beautiful. Oh, and did I say witty??? I’ve never met this lovely woman, yet feel as if I really know her deeply. She is just natural at giving of herself and her heart and knows exactly what to do and what to say. She is a true Warrior and she is a genuine, caring mom who has a beautiful heart! I’m so glad she was there when you needed someone just like her. Isn’t it wonderful how those things happen? A coincidence???? Probably not…….
Thanks for this lovely post about all your Super Heroes!! You are a lucky, lucky girl to have such inspiring women in your life. Best wishes to you for all things good.