Since Graham’s passing, I feel different. Things that once mattered to me or I was passionate about, just don’t seem to bring the same excitement. The path I envisioned for myself doesn’t feel right anymore. And I’m sure I am not alone. After any loss, whether it’s a parent, grandparent, friend, or child, you are forever different. You are a part of a club you never envisioned and it can impact you in big or small ways. This “loss” could even be an idea – an idea of a pregnancy or an idea of a future child you desperately want; a loss might not be death, but rather a breakup in a relationship. Those who experience a breakup or divorce lose the idea of a future with their spouse or significant other. I feel like we all can relate to this in some shape or form and understand that when something life changing happens, no matter how big or small, it changes you.
A loss, no matter what it is, is tough. Adapting and changing after the loss, is even harder. Some days, when the struggle is more than I can bear, I must remind myself I am not alone. “Be strong and courageous. Do not be afraid or terrified of them, for the Lord your God goes with you. He will never leave you nor forsake you.” (Deuteronomy 31:6) He is with me every step of the way. Even with His strength and the comfort knowing God is with me, does not change the reality that transformation and attempt at healing after a loss is a great challenge. For me, this process is a struggle between who I once was, and this new person I’m trying to understand. After losing a child, it’s a struggle to move forward with life while still remembering Graham and keeping his spirit with me. I notice this most in what excites me now. Not everything is different. Brandon and I love quite date nights at home, and I look forward to chance to catch up with friends over dinner. I still find joy in encouraging my students and trying to get them excited about learning. And, yes, one of the highlights of each week is getting a Chai Tea at the Starbucks during my Target run. Those things are still there, but there are now new things that also bring excitement and in my opinion, bring a greater purpose to my life more than before. For example, educating strangers about rare diseases and the importance of genetic testing brings such joy to me. Sharing a story about how medical research is improving and impacting families like mine is thrilling. Connecting with another mother who understands loss, frustration, pain, and hope is rewarding. As much as I want to hold on to my old interests, my old self, I am without a doubt a new person. Brandon’s a new person. Our family is forever different and we are okay with that.
One of the things I’m realizing is the new me is often talking about rare diseases. As uncomfortable as it may be, it’s a calling I cannot ignore. And thankfully, there are plenty of ways to educate others about rare diseases, including something happening in February. Last year we participated in a Jeans 4 Genes Day on World Rare Disease Day & I’m very excited to announce we plan to do it again! MitoAction, an organization dedicated to improving quality of life for those who are affected by mitochondrial disease, is partnering up with Global Genes, one of the leading rare disease patient advocacy organizations in the world. On February 28, 2018 we ask that you too participate in a Jeans 4 Genes Day. Ask co-workers, teachers, students, friends, family, etc. to donate $5 to wear jeans in honor of World Rare Disease Day. For more information about organizing an event please visit http://www.mitoaction.org/jeans-4-genes. It may sound silly to wear jeans and post on social media about the day, but it’s so much more than that. I truly believe when we talk about rare genetic diseases, we are educating the world about genetic testing and prevention, which makes a difference!
I’ll get off my soap box now. But as you can see, this is what matters to me now. This is what happens after a loss. You are different. You aren’t afraid to use your voice to show the world what truly matters now. As I try and adapt to this new path, I continue to trust in the Lord. “Trust in the Lord with all your heart. Never rely on what you think you know. Remember the Lord in everything you do, and he will show you the right way.” (Proverbs 3:5-6) Once again, I can’t say it enough, God is good. He provides hope and strength when we need it most. He provides us with direction when we feel lost and guides us through these changes we face after a loss.