It feels like it has been a lifetime, truly one of the longest years of my life, but today marks 1 full year since Allison was diagnosed with juvenile dermatomyositis (JDM). This is for her.
Sweet child of mine,
I had fought for so long to find an answer. I watched as you lost so much weight it was scary. I watched as you couldn’t eat because your body was in so much pain. I watched as you walked with your own special gait that people told me they couldn’t see, yet it was so obvious to me. I listened as you told me of the pain you were in. I tried to find an answer.
I disagreed with doctors. I *may* have went slightly overboard with my response when I was told you were fine, simply “malnourished”. I knew this wasn’t the answer.
I also began to fill with uncertainty. So many doctors for over a year had told us you were fine. I knew you were not seeking attention but what if it was growing pains? What if you were fighting an eating disorder? I never wanted to doubt my mom’s intuition, but I started to and I regret that. Thankfully, it was the night before we left for Mayo that the non-stop noise in my head got the best of me and not months before. Still, I apologize, again, I am truly sorry.
I remember every single thing about the room we were in at the Mayo clinic. Not only because we’ve been there so many times since, but I remember that exact day vividly. I remember my excitement of being at the best place, medically, on earth for you and also scared that they would not have an answer and we needed an answer.
I watched as the first doctor looked you over. Grandma and I looked at each other when we saw the doctor’s face change from serious to a twinkle in her eye and grin when she figured it out. As soon as she left the room to get your doctor to formally diagnosis you, we said, “She knows.” And she did.
It was surreal watching them work together to go over all of your joints, every single one, and talk quietly together, pointing out what they saw.
They listened intently as we talked about your medical history and what brought us there.
I remember the excitement in the doctor’s voice when he announced your diagnosis. “Allison, you have Juvenile Dermatomyositis!” It felt like balloons should have fallen from the ceiling there was so much excitement. I remember hearing it was 1 in a million. I remember the wave of relief that rushed over me.
We knew. We had our answer.
Then I could hear his words, not all of them, only some… fatal, life-threatening, no cure. I remember looking at you barely able to breathe, thankful that Grandma had stood up to stand by your side and rub your back. There is no way to explain the fear and pain that goes through a mom’s heart when she hears those words. I was frozen in time, taking in what was happening but not able to process anything until Grandma spoke and asked if it was treatable.
Yes, we could treat it. Yes, you could go into remission. Yes, there is so much hope. Yes, I could breathe again.
We stopped and backed up a few steps to hear again everything we were being told. We jumped at the opportunity to take part in a research project. We called your dad and Jen who were on their way there to let them know the news. We planned to get many tests completed and meet with the doctor again the next day.
We’ve moved forward. I attended a conference, thankfully with Melissa by my side. There was no way I could have made it through without her. The diagnosis was so fresh in our lives. I had so much to learn. I wasn’t prepared for a 2nd disability to rock our world.
We adjusted. We made many trips to Mayo. We have the world’s very best doctor – and team of doctors. I trust them with your life.
I’ve watched each week as you’ve injected yourself with methotrexate, a chemotherapy drug, for almost a year now. I’m in awe of how quickly you took on that responsibility and never hesitated to give yourself that shot. I won’t lie, it is hard to watch.
I’ve went through so many emotions. I’ve sunk into a depression that I’ve struggled to begin to climb my way back out of. You’ve handled it all with such grace and taken on every challenge, I’ve done my very best to support you, talk with others, and learn all that I can. I just can’t, no matter how hard I try, no matter how well you are doing, get past those words… life-threatening. And, I can’t fix it. Damn it, I want to fix this so bad.
Those words shook me to my core. I never imagined anything could take you from me and now we would be fighting your own body to keep you here with us. I’m angry and sad and scared. I’m really, really scared.
I jumped back into fighting for your rights and accommodations, even though you would never use them – I wanted them there just as a safety net at school.
I’ve driven more miles and spent more nights in hotels this past year than I have in the past 10, at least.
You’ve dealt with so much bullshit from people. It’s amazing I am not in jail. You’ve had kids make fun of you for having to sit out at times from the pain as we work to find the right treatments for you, you’ve dealt with the jerkface remarks about your sun sleeves that cover your skin or long sleeved shirts year round. You’ve dealt with assholes who gave you shit for having to wear a mask. It crushes me.
Every ounce of me wants to protect you from the ignorance in this world. We work together to try to educate. It would help if people were not so quick to judge and more responsive to listening. And, well, if we still lived in a time when people cared about each other.
I admire your strength. I admire your determination to continue to do everything, even when you are fighting extreme pain and I want you to stop. I admire your courage to take the steps you need to keep yourself safe despite the response from people. I appreciate your willingness to learn more about this life changing disease.
So much progress was made this past year for you. You have been through surgery and infusions, more blood draws than we could count, CTs, MRIs, Xrays and more. You’ve been amazing through it all.
We were on course with your treatment for you to still take the trip to Europe next month, I was so excited for you.
Our world has stopped. I know how much you hurt to see people your age still getting together with friends, without masks, convinced they won’t be impacted by this. I see your hurt. I see your anger. I understand all of it.
You are isolated. We don’t have an option on that. This disease, especially because of the specific antibody you carry – thanks for being extra rare – attacks your heart and lungs already (in addition to your skin, muscles and joints). We both know, we all know, we can’t take any chances here.
I know that because you are aware of what your outcome would be, it frustrates you more when people you are close to and care about blow this off. You take their ignorance personally. Why can’t they see how simple it would be to wear a mask or social distance to protect people like you… to protect you? I understand why that is a knife through the heart and I wish I could take that pain away.
I wish I could get them to see this through your eyes.
I know the last several weeks have been hard. Our trip to Mayo was canceled. The Europe trip was canceled. Prom was postponed and it is iffy if it will still go on. You miss your friends, your teachers, your freedom. I miss all of that for you too. I look forward to the day when you can have your life back. You are such an incredibly smart and talented person with the kindest heart of anyone I know.
I am hopeful that as we start another year into this journey that I am able to get past my struggles with the words that hold me down. I know I will continue to watch you thrive. I will continue to fight for you. I will continue to see you do amazing things. I’ll be right beside you – or behind you – supporting and cheering you on the entire way.
You are going to reach remission. And you will stay there. I know it. You deserve it. I love you with all of my heart… I love you 3,000.
PS – you are just malnourished hahahahahaha!
If you would like to support the research to help Allison and so many others like her, please go to curejm.org and make a donation today.