That Deaf Dancer…

Dancing has saved my life. Period. I had been dancing for nearly 23 years. From that tiny basement to professional level. Yah, professional! That’s when it all finally paid off. Go me!

Why, you say? Well duh. Growing up was not always easy. Countless days of bullying and taunting allowed me to be free in a dance classroom. Also allowed freedom of expression and interactions with fellow dancers. The thing is, I didn’t really have a voice at such a young age and had a hard time defending myself. When young kids see your hearing aids, take it from me, they’re cruel as hell.

I had a voice in the dance world. Countless hours dancing and going to dance workshops, classes by top name dance professionals before they became big today, trips to NYC to attend dance classes at Broadway Dance Center, huge dance conventions such as JUMP, Shake The Floor, etc. I attended a performing arts high school, even started out as a dance major in college and participated in a pom squad. With a minor change in my career choice when the economy dropped, I decided to try out for the Baltimore Ravens at the time. Which also led MTV to follow me and do a story. If you ever feel so inclined to, google it, I’m sure it’s on YouTube as well. And no, I don’t watch it. Seriously.

While finishing up my degree, I was also fortunate to join the Baltimore Blast Cheerleading Squad which encouraged me to try out for the Philadelphia Eagles Cheerleaders upon graduation. What a freaking fun ride. I went into the audition with no clue what I was getting myself into. I’ve met some amazing ladies who I still talk to this day. I got the experience of my life that I would’ve never imagined. I still look back and remember the chills I get when the fighter jets fly over the stadium during the national anthem or performing to the Eagles Fight Song. Goosebumps man.

But dude! Let’s rewind. That was a tough audition. The most nerve racking part of it was the live stage interview. Also! It was live on the internet too. Could you believe that? Me? That deaf girl has to ask for help? My god. There’s a panel of 10 judges in front of you and when your turn was up, they randomly pick a question and you have to answer it as best as you can. Hell no. Have you heard my alien voice? And it’s dark as hell. So dark you can’t even read their lips! What if it was a former NFL player mumbling something and you’re forced to ask him to repeat it multiple times? What was I supposed to do? Seriously, just save me the agony and just let me do what I do best. Dance and strut across the floor in my bikini ok? Please please?

Fortunately, I got my shit together and talked to the director about my situation. Now, if you know me, I flipping HATE asking for help. Like why does this have to be so damn HARD and yet it was something I needed to do. She was kind enough to let me in on a few questions. Yup the secrets out. If they couldn’t help me out especially after making it this far along, then BYE Felicia! Not worth the embarrassments and sacrifices I had to make which included missing exams, skipping classes and traveling 4 hr round trips from school to attend all this hard earned work that could possibly never happen. Hey, I was not going to let this opportunity go. (Cue Eminem rap) One thing I learned from my mother is perseverance is key.

perseverance: steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement. 

http://www.dictionary.com

To get what you strive, eat, sleep and breath for, you’re going to do EVERYTHING you can to make this happen. Looking back, this accommodation was so MINOR, man. It can be so embarrassing especially when you’re about to be part of a major NFL organization.

It’s finals night. (Not the exams stoopid). I do my thing, telling myself, no one gives a shit if you don’t make it or not. (Truth is, I had a ton of people behind me on this. So thank you. You all know who you are. Especially you MOM!) Finally, the next day my number was called and it hit me that all these years of sweat, tears, hard work finally paid off. F yes! My mother knew I could do this and because of her, none of this would’ve happened. I followed my dreams. Basically. I’ve experienced so many rejections and this was now my moment to shine….

Time to wrap this up. We’re heading up to the mountain to enjoy a conjoined bachelor/bachelorette weekend! 🙂

Oh yeah and Go Eagles!

34

For the last two years, I would share wisdom I’ve learned on my birthday. ( Link to past wisdom 33 & 32 )

2020 has been a roller coaster. I simply have no words for it. It’s taught me more patience and grace than the last two years.

This year, we welcomed a beautiful baby girl, lived nearly the first two months of 2020 in the hospital, and a pandemic happened as soon as we came home.

I’m continuously and constantly grateful for the little blessings. I’m sharing some old and new wisdom this year.

  1. Make room in your heart for the unimaginable. Always believe in miracles.
  2. Do what scares you and push yourself outside of the box.
  3. Have a grateful heart. Life is too short and precious to take things for granted.
  4. There’s always a silver lining. See it through.
  5. It’s okay to be vulnerable. This year has it’s challenges.
  6. Take pictures. Always. Be notorious for random ones. They’re the best.
  7. Never stress on the tiniest stuff. Let it go and see what kind of magic returns in its place.
  8. Keep a gift of wisdom behind you and seek the meaning to everything.
  9. Don’t give up on your dreams just because you are a mom. Let that be your motivation.
  10. Do take care of your mental health.
  11. If someone tells you you’ve changed, celebrate it and keep going.
  12. Keep exploring and see what the world has to offer. While this might be on hold for a while, more research and saving for us!
  13. Keep your vision board in sight.
  14. Technology is amazing. Keep in touch with your friends and family near and far. Always keep them close to your heart.
  15. Do take social media breaks. In fact, take several.
  16. Be passionate about something bigger than yourself. It inspires growth.
  17. Know that there is always light out of the darkness. Whatever rock bottom you hit, the top is just waiting for you to shine. When the time is right.
  18. I truly believe everything happens for a reason. It will always work out because it’s meant to be. When it doesn’t, know that there’s always something bigger for you, just need to close the door for the next one to open.
  19. Always remind yourself how far you’ve come. Be proud of the fact that you’re taking the path that was paved for you.
  20. Please floss. Daily.
  21. Never let grief take over and always choose hope.
  22. Let mean people be mean. Life has a way of bringing them into your life to challenge you and make you a better person out of it.
  23. Always trust your dog when it doesn’t like a person. For real.
  24. Kindness always goes a long way. Treat others how you would want to be treated.
  25. Don’t let your disability define who you are as a person – Even though it may seem like denying the power and overwhelming significance of the experiences in my life, you’re not insulting yourself, not weak, not asking for sympathy. You’re you. See the person first, disability second.
  26. Aspire to inspire others. Whether it’s sharing your story or smiling for no reason.
  27. Trust your gut.
  28. Remember the way people treat you is a statement about who they are as a human being. Refer to #22.
  29. Be picky about vibes and energy you surround yourself with. You owe yourself that much.
  30. Sarcasm and cursing is always okay in my book. Keep being you.
  31. Keep smiling. I mean it. It’s always a good day when you see others smile.
  32. You are not required to house someone else’s feelings. Take it easy on yourself.
  33. Always love and love hard.
  34. Be thankful for roadblocks. Some things are just not meant to be.

Annie’s NICU Journey

Only the beginning.

We learned of her defect at 16 weeks due to an abnormal bloodwork result. Followed by numerous doctor visits, sonograms, and a transfer to a children’s hospital post birth so she could have the best care possible.

At 36 weeks and 3 days, Annie came into the world only to be whisked away shortly after holding her in my arms. It didn’t feel right. It’s so unnatural having held a tiny human safe in the womb for 9 months and then watching her go. I was ready to hand her over to her dad to embrace her, only to be separated by the nurses and doctors hands, not knowing the ifs and the when’s.

The NICU was an uncharted territory.

For 50 days, we called the NICU our home. Life was changing and changed in an instant. Words cannot express how we felt. It’s a feeling of guilt, anger, betrayal, heartbreak, sadness, all mixed together. I want to tell you don’t be afraid to have emotions, they make you human. Life is very fragile. I know pregnancy is not easy for most but it’s a huge blessing. I refused to let grief take over and chose hope over fear. Sometimes our strength seems absent to us, just by getting through it, you are strong.

Out of your control.

As much as you want to be there for your child, there are going to be things out of your control. The way you touch and hold your child. It takes 10 mins and 3 people with all the tubes, IVs and wires for you to hold your baby. They expect you to hold for at least an hour. The way you breastfeed. The constant pumping. The feeding tube through her nose. The non-nutritive sucking. The bottle feeding. And finally breastfeeding. But wait, the timing of it, how long she sucked for, equals to this “approximate amount” and the rest will go into her feeds or bottled. There’s hardly any privacy which makes it hard to bond or figure out her needs on your own. Even if it’s requested. You quickly learn to document her charts. You learn to trust your instincts but also trusting the medical team she has. You learn her ticket out of the NICU very quickly. Even if it’s not how you imagined it to be.

Just cry.

I quickly learned in NICU it brings out a rollercoaster of emotions. On top of it being out of your control, the constant alarm sounding off made life so very stressful.

She had her closure surgery the very next day after she came into the world with incisions improperly healing. The best decision was to place a wound vac on it a few days later to speed up the healing process and push the organs back in again. It killed me every time she was in pain. Although, ventilated due to morphine drip which causes lung distress, my radar goes off every time she’s poked for a draw because of the pain she’s in. It killed me. Every. Single. Time.

One step forward, two steps backward.

That saying “One step forward, two steps backwards”, rang true nearly everyday for the first 4 weeks. There was always something. I remember we couldn’t hold her because “holding her” was causing her O2 alarms to go off. I remember her breathing more than the ventilator helping her yet taking her off the ventilator put her in cardiogenic shock. I remember they were able to feed her yet one day they had to stop the feeds due to pressure in her lungs and stomach. I remember the ultrasound result coming back with a “mass” on her liver which turned out to be hematoma that resolved on its own. I remember staring deep into her chest x-rays, at the smallest lungs I’ve ever seen, wondering when the fluid would go away. I remember trying to calm her down so she can breathe, telling the nurses something was very wrong, her alarms sounding off so loudly. I remember walking in the next day only to find out she needed epinephrine shot to bring her back. I remember the gas blood they were drawing every half hour and then the medical director giving us the worst case scenario as the room filled up with her medical team, as they bagged her, switching out her equipments and moving her to a bigger room downstairs to accommodate her cardiac needs, the “ECMO room”, I later found out. I remember having to leave her, unable to help her, in shock, feeling extreme guilt for bringing her into the world, unable to find the words to tell our family that she may not make it…I remember my heart would stop every phone call to check in before we go to bed. Even the calls we received from them out of nowhere. I remember her at her worst withdrawals, the Annie we didn’t know. The heartbreaks we’ve endured daily inside. I remember the lump in my throat leaving her at the end of the day, never knowing what tomorrow would bring. Each day, felt like million steps back.

Finding the positives in the little things.

There were days when things haven’t let up for a long time. We always try to find the positive in the smallest things. The one number that normalizes in her blood has levels. The number of alarms decreasing. The number of medications and dosage coming off. The number of IVs coming off. The heart rate slowly stabilizing every time she hears our voices, the way we touch her, the way we give her kisses. The day they started her feeds again. Her eyes opening. The smallest alertness. The ability to hold her with ease. The weaning of her cardiac equipments, the ventilator, the peeps, and her feeds. The latching. The smallest suckling of her pacifier. Leaving her at the end of a small positive day even if it was just one thing, was our biggest victory.

The end is near.

The last three weeks, I’m not going to lie, felt so long. If you thought and read that the first four weeks had to be tough, it was but not in the least. The last weeks were getting old. We were told most days out of the week, “She may be discharged soon.” There was no timeline. No set date of her discharged. It meant she could be here one more week or 3 months. We had no way of telling. Everything was in Annie’s hands. One day, during her wound vac change, “Let’s send her home with a portable wound vac.” One day, she lost considerable weight that it set her back few more days. One day, she kept throwing up formula, it set her back. One day, her withdrawals from her continuous morphine drip took longer than they thought. One day, she wouldn’t breastfeed in 15 mins, I was forced to let them pump it into her feed or bottle feed her. Those one days, were one days too many. It constantly felt like a daily battle to get her out of there. Finally, after talking with other former omphalocele NICU moms, I decided to keep pushing. That meant, pushing for supplementing, portable wound vac order, no more morphine, getting her off the methadone, getting her through her worst withdrawals, advocate for breastfeeding on demand with bottle supplementation, rooming in, getting EVERYTHING checked off on her discharged list as soon as possible.

One day, “What’s next?” Turned into “That’s it”. It was time to go home. 50 longest, most emotionally, taxing days of my life.

Gratitude.

From the bottom of my heart, thank you. You know who you are.

Those that reached out, sending us healthy meals and cute gifts for our baby girl, sweet emails and cards from afar, our parents for visiting as our support system, the friends and gyms for doing her workouts for International Omphalocele Awareness Day, Rebecca, specifically, for setting up Go Fund Me to help offset the cost. I HATE asking for help and absolutely dislike “charity” but I’ll never forget all the donations, anonymous or not, random gifts from friends and strangers alike, you all have helped us get through this so much. I’ll forever be in your debt.

Being a NICU parent turned me inside out and revealed what I was truly made for. It has made me grateful for her medical team who challenge themselves daily. It has pushed me to be strong when all I wanted to do was hide. But mostly, I am grateful to see my girl grow knowing what hard beginnings she overcame.