I believe you. I don’t want to be that parent who ignores what you’re going through because it gives me anxiety. I don’t want treatment to be withheld from you because of my own blinders. At the same time, I have worked really hard to not live in a “what if” world. I have spent time in that world and it did not serve me well. I vowed not to return and to consciously live in the world of “what is”, concentrating on what I am experiencing right now. However, I realize now that I need to embrace the discomfort of the potentials and possibilities in order to support you as you move forward with your healing. I acknowledge that embracing the “what if” is actually what you need to be experiencing right now.
A few weeks ago as I tried writing this post, I was writing a different message. I was explaining to you how I will wait until we know “what is” and then I will do everything I know to fully immerse myself in your treatment. I will read books, articles and blogs. I will reach out to doctors. But I want to wait until I know what it is before I begin. I will connect to anyone I can to learn as much as possible about “what is.” I was going to explain to you that this is not a game for me. You are my beloved daughter and that is too painful a road for me to travel in my imagination. I vowed to you, in my post that no one will read, that if it becomes the reality, then I will become the expert.
I am so glad I did not publish that post, though, because I have learned a lot from watching you over these past few weeks and I’m changing my mindset. I now realize that it could be detrimental to wait. We’ve heard so many stories about people who searched for answers for years, because doctors wouldn’t treat and family wouldn’t validate what they could not find evidence for. I believe you. I acknowledge that there are invisible illnesses that doctors still don’t know enough about, and that oftentimes the patients know the most.
I have been inspired by the way you have completely taken control over your own diagnostic process and treatment options for your symptoms. You have learned to advocate for yourself in a way that a year ago neither of us would have thought possible. I am amazed by the research you do about every aspect of any illness you suspect you may have. The conversations you have with each of the specialists we have been seeing are impressively high level and very informed. I have been proud of how meticulously organized you keep all of your records. I have been inspired by the way you have joined different support groups to learn from the people who experience these symptoms and have these different illnesses, to figure out if the symptoms match yours and to find helpful tips. I have also been moved by your compassion, confidence and ability to begin creating different devices to physically help the people who you’ve been befriending.
And so, even though I am still very uncomfortable assuming that you have a diagnosis that a doctor hasn’t definitively proclaimed, I also realize that waiting to treat you and learn about different options, would be unfair to you.
After I drove you to the ER for a treatment that you insisted you needed, you told me that your friend wished that her parents would allow her to get the same treatment. This girl was suffering because her parents are afraid to move forward, since there is no obvious diagnosis and no clear path of treatment.
That put everything in perspective for me. For I was just like her parents a few hours earlier. I tried to convince you that this was an unnecessary treatment and urged you not to go. But I didn’t know. And I am now so glad that you are advocating for yourself, leading your care and treatment protocol. Because you were right. It did help you. And I would have denied you that help because I didn’t understand something that I couldn’t see and that is unfamiliar to me.
I watch you hobble around and make plans for your future. You celebrate each day that you’re feeling better than horrible, and you accomplish an incredible amount by sheer willpower. A few minutes ago you turned to me after completely cleaning out our tool room and basement and casually said, “I’m feeling really good right now. I mean, I’m in pain all over, but I’m feeling good emotionally, where it matters.”
You have always been one of the strongest young women I’ve ever known. Your ability to follow your heart and do what you know is right, despite anything society tells you, is unique and admired. This is not the first challenge you’ve faced in your life, and you have jumped over each hurdle with grace and the inner confidence to know you’re making the right decisions. Society’s opinion doesn’t play into your decision making. It is liberating to observe.
I will admit, though, that as much as you need to be you, that I need to be me, and that includes remaining optimistic. I validate everything you’re telling me. I see that your immersion into the chronic illness world has led to important information that will help you have the future you want.
Simultaneously, even though it might upset you, I also need to be true to who I am. And I am that person who believes in miracles. While you are watching movies and documentaries about people suffering from chronic illnesses, I am trying to manifest a full recovery for you by visualizing and already feeling gratitude for the recuperation you haven’t yet experienced. The difference now is that I realize that you’re not immersing yourself in the illness to feel worse; you’re actually doing research to come up with ideas to help yourself.
I hope that you can see that I am not feeling optimistic to be invalidating; I am using the tools that have helped me cope with every other challenging situation that has come my way. This week, as you start your new life 1,500 miles away from home, I know you’ll be okay. Not because I think you are not ill. But because you have your own inner optimism that whatever it is, you’re not going to let it stop you from attaining your dreams. You are logical and you are fearless – two amazing qualities.
You dream big and you rely on yourself to attain these dreams. You probe for information and search for solutions. You embrace reality so that you can use the facts to make the right decisions for your future. I believe you, and I also hold out hope. Because as much as you need to be realistic and learn what to expect so that you can plan for your best future, I need to make sure that we’ve covered every single base, and that includes not giving up on miracles.