This week is Mitochondrial Disease Awareness Week, which is a cause very dear to Annette’s heart. Annette’s daughter Elizabeth passed away back in 2013 from mitochondrial disease. Every year, during the third week of September the mitochondrial disease community comes together to bring awareness and educate others on this rare genetic disease. MitoAction is a nonprofit organization which started in 2005 from a New England support group. During the awareness week, MitoAction encourages others to participate in and organize various events. For Wednesday, which is the release day of this podcast, they are supporting “Light a Light for Mito” which is held to remember your loved ones lost to mito. Please be sure to wear your #greenformito, join our Facebook event and share your light and loved one’s photo memory on our event page “discussion” wall. For other Mitochondrial Disease Awareness Week events, please check out MitoAction’s page here.
Mito-Mom
This week’s podcast episode features another “mito-mom” – Maria Hopfgarten. Maria was also one of Annette’s first podcast guests back in 2019. You can listen to that podcast episode here. Maria is a blogger, author, President of the nonprofit Miracles for Mito, wife and mom to daughter Sarah and Jacob. Maria just released her first book, “Letters to Jacob: Grieving the Loss of a Child”, which is based on letters she wrote to her son Jacob after he passed away from mitochondrial disease back in 2016. Annette and Maria speak about coping with grief and how Maria’s blog about her son Jacob eventually became a book.
Letters To Jacob
Maria’s blog “Moments with Jacob” started out as a way to keep family and friends advised about Jacob and how he was doing. Maria also realized that writing was very therapeutic for her and helped her gain a perspective when there were major decisions to be made regarding Jacob’s health. When Jacob passed away, writing actually became a tool for her to process whatever was going on. The blog moved from information about Jacob, into letters to Jacob about her day and how she was doing. These letters eventually became her book “Letters to Jacob.”
Grief
Annette and Maria also discuss grief and how it changes over time. Maria says, “it’s not like grief goes away, but grief 5 years later looks a little bit different than the week after you lose your child.” Maria also says that each family member will deal with grief on their own path and on their own timeline. You may be processing grief differently from your spouse or your other children. The critical thing is to be open and let each other know you are there for them and that it is ok to talk about that family member that passed away.
Final Tips
Maria leaves us with some final tips to help work through your grief. If you are a friend or family member, be there for each other. Be there for support, pull up a chair and hold their hand. Allow them to talk about what they are going through and allow them to talk about their child. Be a great listener and a great storyteller. Remember funny and loving stories, let them know that person is still in their heart and mind even though they are no longer here.
Maria also says there is no schedule to grief. Grief is your own journey to take in whatever time frame you need. Don’t be too hard on yourself. Do what is best for you. Find what works for you to keep your child’s memory alive. Maybe it is writing or maybe planting a tree in the garden and watching it grow. It is ok to create new traditions and honor old ones as well.
Reach Out to Maria
You can reach out to Maria on her blog, on Facebook, and Instagram. You may also reach her at Miracles for Mito. Please be sure to get yourself a copy of her new book “Letters to Jacob” as well.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about – Contact Us!
Listen to the full episode here!
Please Leave a Podcast Review
As Annette mentioned, please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about – Contact Us!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.