15 lessons learned in 2015

Dear Emmersyn,

It has been so long since I wrote to you. Not because I haven't had anything to say, but more due to lack of words. You have been through so much this past year that much of it has left me speechless (and you will come to learn that I am rarely speechless). I wont rehash the details of 2015 because that is not my purpose with this post. This has been one of the most challenging years of my life, for many reasons, but also a year of significant spiritual, emotional, and mental growth. We have learned so much this year; about NF, about you, about life.

When I began writing to you, I did so with the hope that someday when you were grown, you could read these letters and better understand your journey with NF (and also as a way to put my thoughts and emotions into writing for my own mental health). I wanted to keep the overall tone of these letters hopeful and not fill you with despair (and not succumb to my own despair). But there have been many things this past year that have made it hard to remain hopeful. So here is a list of things we have learned in 2015.

1). The Doctors don't have all the answers. This is a frightening statement. It is terribly painful to hear repeatedly from doctors, that they do not understand your symptoms. You are an enigma, and that is terrifying. We have had to learn patience with your medical team, and we have learned to push for more when necessary. We have learned to find medical professionals that we trust, and not be afraid to seek a 2nd opinion (or even a 3rd opinion).

2). Trust your instincts. If something doesn't feel right, it probably isn't. Never let someone tell you otherwise, even if they have a medical degree or call you family.

3). Find a Passion for a cause near and dear to your heart. This has been NF research funding for me, for obvious reasons. Everyone needs a cause and a passion. Never apologize for your passion and never back away from your cause. There will always be critics out there, and you are bound to lose a few friends along the way, but never let that sway you. Not everyone will share your passion and that is OK. But be Supportive of other causes as well, and you are bound to make new friends.

4). Everyone has struggles. Your struggles may seem more significant to you, but even as small as someone else's struggles seem to you, they may feel just as significant as your struggles to that person. Always be kind and never let your struggles harden you.

5). Things can always get worse. Just when you think you have been through the worst and couldn't handle anything else, life throws you a curveball. Sometimes this fact is terrifying, and I have spent many nights wide awake dreading upcoming proceedures or appointments for this very reason. However, this year, (maybe for my own sanity) I have learned that this is the very reason that we must live in the moment. You will never get this day back. If it is a good day, live it to the fullest. If it is a bad day, take comfort in knowing that it wont last forever.

6). Quality of life is one of the most valuable measurements. As a medical provider, I have had this conversation with many elderly and terminally ill patients. But this year, Quality of Life was brought up on multiple occasions from your doctors. I never imagined I would be having this discussion about my toddler. Not that you have a terminal illness, but when it comes to pain medications, physical therapy, and surgeries, we have come to look at how it will effect your quality of life and functionality to see if it is worth putting you through. We have had to let go of some preconceived notions about how parenting is meant to be, and prejudices against pain medications. As hard as it is to keep you on chronic pain meds, it is harder to think of your quality of life without them.

7). You never know how strong you can be until being strong is the only choice you have. Its funny to think how 2 years ago the thought of having a child diagnosed with a brain tumor was one of the most terrifying thoughts. Today, this does not seem as terrifying. Life goes on. SO you have brain Tumors, and yeah that sucks, but you are still a 3 year old girl full of life and energy. Many people tell us, " you are so strong". Are we really that strong? DO we really have another choice?

8). You cannot control everything. Life is unpredictable, and no degree of planning can help control any outcome. You must let go of the idea that you are ever in control of anything other than yourself.

9). Some people cannot handle being part of your life. We have noticed that our social circles have slowly dwindled in size. Many people (even people that we never imagined would leave) have just disappeared this last year. Family and friends sometimes do not know how to be there for you, and to avoid the awkwardness, they just avoid you. Learn to forgive these people (something I am still working on myself). Learn who you can rely on and who will always be there to support you and hold on to these people for they will be your life line.

10). Surround yourself with people on the same mission as you. I have searched for support and understanding following your diagnosis. It was not until finding the Children's Tumor Foundation and organizing charity fundraising events to help fund NF research, that I found where I belonged and could be understood. This has been so valuable to my healing and coping process.

11). It is OK to fall apart. You cannot hold everything together all the time. Falling apart does not make you weak; it makes you human.

12). Just Breath. Sometimes when life becomes so overwhelming and it feels like everything that could possibly go wrong is going wrong, just breath. There is a peace found in slow steady breaths. It slows your heart rate and calms your mind. When you are paralyzed in fear, overcome with joy, or fighting off anxiety, just breath.

13). Nothing is certain in life except change. Change is inevitable; remain flexible. Change is scary, but can also be liberating. You have to learn to embrace changes in life, and be ready to make necessary changes if you are feeling stuck.

14). Embrace the small things in life. There is nothing that makes you appreciate the smaller things in life quite like being faced with enormous medical challenges. I have learned to embrace every bedtime story snuggle, Christmas program, dance class, etc. Life can get over scheduled, and it is easy to fall into the daily grind of getting from one place to another. Slow down and truly enjoy the little moments in life, for in the end, life is just the compilation of series of small moments.

15). Choose Joy. Happiness is always a choice. Sometimes circumstances just plain stink. While you cannot control your circumstances nor what happens to you, you can always control your response. It is not always easy, but it is the best choice you will ever make.

So as we look back on 2015, we will not focus on the struggles we had throughout the year. But, instead, we will focus on the lessons we learned with an open heart and open mind. We are hopeful heading into 2016, and we are dedicated to making 2016 a fabulous year despite what we might be faced with.

Love you Always
Mommy

Life Goes On

Dear Emmersyn,

In an instant, my world stood still. It was as if my heart stopped beating, my lungs stopped breathing. I sat in the midst of the busy dialysis clinic listening to the message from NeuroOncology over and over telling me that you have a lesion in your brain stem that may be causing you to choke and drool excessively. On top of this, you now have 3 probable plexiform tumors in your tiny little body. One in your back, right leg, and neck. This news is devastating to your father and I, and although I promised your brothers not to keep secrets when it comes to you, I cannot bring myself to tell them this update. While our world stood still, and our lives have been rocked, the rest of the world goes on as if nothing has happened. We go to work and you to preschool as if nothing has changed. Our schedule remains the same and packed full of basketball practices/games, soccer training, swim classes, and homework. Our family is the same, our home is unchanged, but something seems so different now. I know this feeling. I have felt this sense of utter shock multiple times since your were diagnosed with Neurofibromatosis type 1 over 1 year ago on Jan 13, 2014.  I should be accustomed to it by now, but maybe one never grows accustomed to hearing such news.

I pass people at the grocery store and smile politely despite being a mess inside. I participate in small talk with the other parents in our parent-tot swim class or the other spectators of your brothers basketball game. Talking about swimming suits, basketball shoes, and schedules. As if any of those things really matter. Its almost like a form of punishment at times to have to continue on with life as usually despite being so shaken.

But then you smile and giggle at something your brothers have done. Your scream in excitement to watch Frozen for the 10 billionth time, and sing along with all the songs in your sweet little voice. You shine in swim class and prove that despite all of the new things we heard at your latest appointments, you continue to thrive and achieve new skills. I am reminded that even though this news is concerning and shocking, our family remains the same and our home in unchanged. Our love for you has not changed. And most importantly, YOU are unchanged. You are the same sweet, compassionate soul you have always been and will continue to be despite what new obstacles are thrown in front of you. You continue to show me how to find the light in the darkness, and the beautiful calm in the midst of the storm. Life goes on. You may have more challenges than we initially thought, but you remain full of LIFE. We have no time to wallow in self pity, because LIFE GOES ON. And by God are we going to live it.

Love you always
Mommy