The Christmas Socks Story

As some of you have seen my Facebook page and Twitter have been filled with photos of people wearing Christmas socks and the hash tag says: "Christmassocksforbecca" My mom wrote this up as an explination: 

Several years ago our precious Rebecca had heart surgeryAlthough the operation went well an unexpected complication occurred and she was not expected to live. The second day on life support (ECMO) one of the nurses, fighting desperately to save Becca’s life bought her a pair of Christmas socks and put them on her tiny motionless feet. This “Angel” said the socks were to give her something to look forward to…for us her family, they were a gift of sincere Caring and true Hope.

Please wear Christmas socks as a reminder that Love is Alive
And All Around, to Never Give Up Hope, and Miracles Do Happen.

While my procedure today went well I would still really appreciate you all wearing the socks, taking photos of yourself with them and then posting them on Instagram, Twitter or Facebook with the hashtag "Christmassocksforbecca" 

Thank you so much!

I Am Not My Illness and Neither Are You

As someone who live with a chronic and terminal illness, this is a motto I have tried to live by and encourage others to try to do the same. Yes I have Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Arterial Hypertension. But that is not who I am. I am Becca, a 21 year old college student who loves to collect snowmen stuffed animals, listen to music from the 50’s and 60’s, likes to read and loves Broadway musicals.

 My records say that I am 21 year old female born with Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Hypertension. It says that I take 45 pills a day, get a blood draw once a month and have to sleep with oxygen at night and when going above 3,000 feet.  It says that I have had 4 open heart surgeries and over 20 heart catherizations. 

But I want to tell you what these records don’t tell you about me:

I collect snowman because I’ve had a special stuffed animal named Frosty that has been with me through every procedure since pre-school.

I perform American Sign Language to music in a choir called Arizona Friends in Sign
When you read my records, it doesn’t mention that I go to elementary and middle schools giving anti-bullying speeches because I myself was bullied as a kid and teen because of my illness.

My favorite book for the longest time was Nancy Drew. But then I grew up and I love any type of mystery novels. Reading from a young age then went on to create a love for writing which has now taken form in me having my own blog about what it is like to live with a CHD and PH.

If you only asked me about my illness, you’d never learn that I love musicals, reality television and comedies. It doesn’t tell you that my favorite TV shows are The Office, Supernatural and Survivor. My favorite movies are Grease, That Thing You Do, The Proposal and Radio.

You wouldn’t have a clue based off of my records that I love swimming and traveling during the summer, or that I love getting Wild Mountain Black Berry ice cream from Tillamook Cheese Factory in Oregon.

My favorite thing to eat besides junk food (like any regular college kid!) is steak and mashed potatoes. But my records don’t mention that either.

My records also don’t mention that I am studying psychology and counseling , with plans of being a counselor for kids with chronic or terminal illness when I graduate.

So to any of you out there who have an illness and you feel like it is defining  you and your life – you have the choice of letting it do that or not. And to those of you who know or love someone with an illness – remember that we are human. We are more than our diagnosis. We have hobbies, dreams, goals, likes and dislikes.

I am not my illness and neither are you.
Hope and Love,
Becca 

What Chronically or Terminally Ill Patients are Thankful For

Thanksgiving was a few days ago and I know I'm a little late but better late than never, right? So in honor of the amazing holiday I decided to make a list of what people who are chronically or terminally ill are thankful for everyday of our lives.
  1. Parents - Who support us, drive us to all of our appointments, stay by our hospital bed 24/7 and try to make our lives as normal and full of happiness as much as they can. In a heartbeat they would switch places with us, if that meant we didn't have to go through all that we do. They search for the best doctors, get second or even third opinions and they fight for our lives. They are why we are still alive. 
  2. Family - Siblings especially who step up to the plate to help run the household when mom and dad aren't home. They don't complain about mom and dad being gone so much and as they try to live a normal life during the time that we're in the hospital, they have the same amount of fear on their shoulders as everyone else - sometimes though the siblings don't talk about it and they keep it all inside. 
  3. Doctors - Especially the ones who aren't afraid to ask for second opinions and the ones who listen to what we're saying. The doctors who while saving our lives don't forget that we're people and not just a diagnosis. 
  4. Nurses - They spend most time with you when you're in the hospital, behind your parents. Their kind, supportive and even though they have to poke us, wake us up in the middle of the night and bug us every hour for vitals - they do it with love and kindness. They see us on our best days and they put up with us on our worsts, understanding that we just want to go home. 
  5. Medical Technology - Advances in medical technology have saved our lives, more than once. Medications, new tests, ECMO, pacemakers, defibrillators, and different types of instruments that make surgery less dangerous. We wouldn't be here without these important advances.  
  6. Teachers - The ones who have been so understanding and supportive of us; especially when we miss a lot of school. They want us to learn and are dedicated to helping us, no matter what it takes. For some of us, our illnesses are invisible so the teachers who can understand that just because we look fine doesn't mean we are - they are worth their weight in gold. 
  7. Friends - When you miss a lot of school, its hard to make friends let alone keep them. So it's always great to find that group of friends who text you even when you're not at school, or they visit you when you're in the hospital. When they text or visit you, you get a small feeling of the real world. They are normalcy to us, they talk about movies, school drama, who's dating who - all of those fluffy non-important things but they take your mind off of what is going on. 
  8. Therapist/Psychologist - I've seen 2 psychologist and 1 therapist in my life; and each one of them has helped me tremendously. Living with a chronic and/or terminal illness, there is a lot of worry, depression, anxiety, fear and even anger at times. For me, the therapist helped with my depression. For some people there might be that stigma of seeing a therapist or that it makes you weak. But its the exact opposite. They listen, they care, they help. To be honest, I don't think I would have such a great attitude and outlook on life if I hadn't gone to therapy and gotten help with how to deal with my illness. 
I hope that everyone had an amazing Thanksgiving! I know mine was full of family, laughter and smiles - and hope yours was as well. While I do look forward to Thanksgiving because I can break my low-salt diet, its one of my favorite Holidays for a whole different reason. There is so much to be thankful for in my life, more than I could list. The amount of people I have who have supported and cared for me throughout my journey is what I'm most thankful for. Without you guys, without your prayers, your love, your kindness - I wouldn't be where I am today physically or emotionally. You all have played an important role in my journey and I am thankful for each and every one of you. Thank you. 

Hope and Love,
Becca 
 
My Life As A Chronically
Ill Young Adult
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