When my daughter, Victoria, was diagnosed with Krabbe disease, I felt completely helpless and desperate because there was nothing I could do for her. Her diagnosis came too late for treatment or interventions – all we could do was wait for her inevitable death.
When I began advocating for expanded Newborn Screening, I carried that desperation with me at first because I couldn’t stand the thought of anyone else suffering as we had; in hindsight, I can see how my approach could have been better. And, I wish I’d known that it was okay to wait before starting to advocate.
Whether it’s a desire for redemption, justice, or something else, it can be tempting to advocate soon after your child’s diagnosis or death; if that’s your desire, go for it! However, while your child is still living, be sure to make time with them your priority. That was difficult for me because I wanted to take action, but I have no regrets now because I knew my time with Tori was limited.
One possible channel for this feeling of desperation is to create a bucket list and make memories. We did that and it was so helpful for our mental health because it gave us something to look forward to and helped us focus on Tori living, not dying.
There will be plenty of time to add your voice to the advocacy community. And, because grief can be blinding and overwhelming, it’s okay to focus on self-care and to do what is best for you and your family before you begin to advocate. It’s not selfish at all.
You will need support from others during your advocacy journey: your spouse/family, experts, stakeholders, fellow advocates, advocacy groups, etc., especially when you’re starting to advocate. Don’t be afraid to ask for advice!
Being aware of what you don’t know is powerful and can also lead to strengthened partnerships because the others involved will feel valued.
Take time to see who else is working in your state – are there other rare disease parents actively working? Which non-profits are seeking change in your state? Build relationships before you get started.
As you approach these efforts, remember to listen to understand, not to respond. This seems like an overly simple concept in theory, but in practice, it can be extremely challenging, especially when grief gets in the way.
In my case, I began with the mindset that no one was on my side and that the stakeholders and decision-makers were my enemies. This couldn’t have been further from the truth, but it took me far too long to actually listen to them so that I could understand that.
Don’t be a steamroller in trying to achieve success the way you think it should be done – listen to those involved, ask questions, and seek to truly understand the hurdles each stakeholder is facing. The finished product will be stronger because of it.
In summary, what I wish I had known before I began advocating: the most important thing you can do in the wake of your child’s diagnosis or death is what is healthiest for YOU; build relationships and remember that you need others on your team to be successful; and, above all else, listen to understand, not to reply, especially if it’s the last thing you want to do – that’s usually when it matters most.