Updated: May 6, 2019
The last two years have been a journey filled with struggle, pain, lessons, love and growth, as my daughter has struggled and learned how to cope with neurological malfunctioning on her sensory system. Medications do not work, and there is no name given to the disease or disorder she has. She experiences daily episodes of vertigo, numbness in her right leg and arm, blurred vision and right pupil dilation. The episodes come without warning, often lasting up to an hour, 1-3 times a day. The attacks were fewer in the beginning, but over time, they have increased in duration and intensified in symptom severity. I have also watched her inner strength increase and intensify just the same.
We’ve been searching for answers for two years. We’ve seen over 25 doctors and have eliminated cause after cause. Last week, we received word that her genetic bloodwork was inconclusive, and it would need to be re-analyzed before Undiagnosed Disease at Boston Children’s Hospital may take us on. This takes more time. No answers are in sight. So…we keep going. We keep searching for relief for her.
I’ve written her a letter so she never questions how inspiring and amazing she is. She is a silent little warrior, and I hope the letter finds her when she needs strength, and she never forgets how powerful she is. Within her letter is her story…from my perspective. I’m sharing thi letter because I want the world to know how much she freakin rocks. Maybe she will even inspire you to push through life’s challenges a little harder. Please read it and share if you’d like. If you see her don’t be afraid to tell her how amazing she is, and to all those mamas out there trying to find relief for your children, I see you. My tired heart rests with yours.
I can’t imagine myself at eight years old experiencing what you have so stoically accepted. Every day I watch you work through episodes of vertigo, body numbness, and other neurological symptoms, and I would give anything to take them away or even feel what you experience.
I will never forget the first time it happened. I can still feel how your little fingers latched onto my arm in the grocery store. I began to shake and tremble with you, as you told me something was wrong. Your frozen blue eyes spoke everything else. I scooped you up, abandoned our cart in the aisle, and took you to the emergency room. We left shortly after it passed, with instructions to have you drink fluids and eat a little more.
A few days passed, and it happened a second time at home. We returned to the ER only to be sent home again, this time with instructions to follow up with your doctor. Eventually the episodes became more frequent. Eventually daily. I was so confused and frightened the first year. I know you were also. Watching you struggle with uncomfortable, disabling sensations, and not being able to fix or help you was beyond difficult.
It always will be.
Doctors and specialists couldn’t pin point the cause, and I saw your spark fade slowly…but you always had a light peeking through the darkness…and I always saw you fighting. As the episodes worsened, you grew strength from the pain.
I remember sitting with you during the episodes for the first 6 months. You needed two people to sit on your right and left side to feel safe and balanced from the vertigo.
So quiet. So confused. We had no answers.
I saw you as your body and mind began to adapt and understand these neurological episodes that most adult humans would render disabling. My heart broke so many times as you walked into school-so afraid in the beginning. I sent you and I hated it. It was so hard knowing I may not be by your side when the next episode happened. Sometimes I waited in my car at your school until they called me with news of an episode. This way I could get to you faster.
I saw you fight through fear as you went to school without me by your side. I saw you build inner strength and fight through the anxiety that you may have an episode and lose balance, control, stability, comfort, sight, coordination in front of all your friends, peers, and teachers. I saw you. I watched so proud as you worked through moments upon moments of struggle, learning to adapt to what life has thrown at you.
After the first year, the episodes tortured you a bit harder. The pattern of episodes became baffling at times. Sometimes repeating at similar times throughout the days. During one pattern’s faze the episodes would consistently wake you in the middle of the night. The vertigo hindered your ability to lie down, rest, and go back to sleep. So, we waited to go back to sleep until it passed--often an hour. You slept next to me for 3 months until that pattern within the episodes broke, pushing through broken nights of sleep, and then going to school as much as possible. You were so tired. I saw you there. Your strength amazed me. My heart broke so many times throughout the past two years. I’ve felt lonely, afraid, and helpless; I understand you’ve also felt this. You are not alone my love.
Throughout these two years you’ve been poked, tested, and analyzed more than I ever have in my entire life. I understand how hard it is to make the trip out to Boston 3 times a month, when you just want to play. The work you put into living and adapting to this “thing” is commendable. You just never give up. Now at the age of 10 you’ve faced obstacles head on and have been building your power. I saw your growth at your 10th birthday party. You patiently waited for an hour-long episode to break. Missing the first hour of your skatepark party because your body wasn’t connecting properly. Without a single complaint.
I see you stand tall and rooted while you're spinning. Your strength is intensified every time you adapt graciously to this life. I see you work through the anxiety of not wanting to miss gym class because of how much you love to run. I see how badly you want to run free without the worry that you will be halted by an episode. Your strength is evident now when you walk into the doors of school slightly stumbling from an episode that hasn’t yet broken, repeatedly reassuring me you're fine to ease my concern. You no longer need to me to pick you up, carry you, miss school or even get wheel-chaired to the nurse during these disruptive invisible neurological attacks. Now you stay…and with immense strength and resilience.
As I hold back and watch you walk down that school hallway like a warrior, I see your growth clear as the blue skies ahead. I am inspired to be better by your strength. You have taught me to keep going…and go harder. My love, you are nothing less than amazing and so much more than incredible. If there is ever a day that you don’t believe that or feel that, know that you are the most inspirational human in my life. You have influenced who I am today in the most beautiful way, as being your mother as saved me over and over. I couldn’t be any more proud of you, and because you exist in this world, I am better. Your strength is contagious, and your story inspiring. An undeniable challenge was handed to you, and you didn’t run away. This is where your power lies. I hope you write your story of strength and share it with the world. Never hide this experience. Sharing it will inspire people. You are one in a billion, literally, and a humble little warrior. To truly know you is a gift.
I love you to the moon and back and back again peanut,