Since I've started sharing Nora's journey publicly, I've had several newly diagnosed families reach out to me. Each time, I am brought back to the early days of Nora’s Infantile Spasms diagnosis. Even having gone through it myself, I sit there in disbelief that another family could be receiving such life altering news while the rest of the world keeps on spinning.
Each time I ask myself “knowing what I know now, 3 years into this, what do I wish I had known? What do I wish had been said to me?”. Here is my advice:
1. Allow yourself to grieve the life you envisioned and the child you envisioned. There is absolutely no shame in sadness and grief. The reality is, this is hard. It’s unfair. Well intentioned people are going to try to push positivity at you in an attempt to make you feel better. They’re going to tell you that you’re strong, and that if anybody can handle this, you can. But you don’t feel strong at all.
There’s a piece of you sitting in that dark hospital room that just wants to scream, that wants to trade your child in for the healthy one you expected. You’re waiting for the doctor to come in and tell you it was all a big mistake. And all of those feelings are ok. Grieving the loss of expectations does not mean that you don’t love your child. And if you’re feeling disconnected from your child, please understand that you will eventually bond with them again. It will get easier.
2. It’s ok to hold on to hopeful stories and best case outcomes. When Nora was first diagnosed with Infantile Spasms, I searched desperately for the success stories. I became obsessed with scouring the Facebook groups for miracle outcomes and reaching out to those parents, comparing every aspect of Nora’s story with their children, looking for similarities. The hope that she would be one of these miracles kept me going, it was what I needed at the time. And your child very well might end up on the miraculous end of the spectrum for their given diagnosis. Somebody has to.
Your child’s own unique story will unravel on their own timeline, and you will learn and grow with them. Nora’s outcome is miraculous in many ways, but not in the way I once hoped. Despite that, I can honestly say that Nora is the coolest person I know, and I love her and her brother more than anything on this earth.
Just know that even if you do not get the miracle you are praying for, your child will be a loved and valued member of your family.
3. Find a community that gets it . Yes, your friends and family are [hopefully] going to provide tremendous support, but nobody fully gets it like another family who has been in your shoes. Over the past three years, it is this group of families that I’ve met [mostly online] that have become some of my absolute closest friends, and they are who I go to for support on my most difficult days.
In addition to friendship and emotional support, this village will be an absolute wealth of knowledge on your child’s rare disorder. They will know more than any doctor, and they will help you navigate what feels like a strange new world. Every specialist we see or research study we participate in, it’s because another family on instagram or rare disease facebook groups connected me. They literally cut down years of searching for the right next step.
4. Know that one day you will find joy again. I will repeat this. YOU WILL FIND JOY AGAIN. You may not believe me right now, but you will. At first, the sun will come up each day and you will put one foot in front of the other. You will go through the motions in a state of numb survival. But one day… food will taste good again. One day, you will genuinely laugh again. One day you will take renewed interest in the things you once cared about.
Your priorities may change, and you may never be as carefree as you once were, but the world will hold joy and beauty once again for you AND your child. I Promise.