We’ve met hundreds of you face-to-face, talked to many of you on the phone for hours, and have met many many more through the Internet.
One thing that stands out is the moms. Yes, there are strong dads, grandparents, extended family, and friends … but it’s the moms that stand out.
We’ve met moms of all circumstances … some of your loved ones are living while others are MLD angels, some where MLD is now or in the recent past and some where it has been decades, differences in where you live and how you live, some started with lots of medical knowledge while most started from scratch, some with access to great care and support while many have one or neither, some with financial resources of their own or available to them while most have moderate to no financial resources, some who were blessed to access life-changing therapies for their loved ones and others that couldn’t … and the list of differences goes on and on.
But what is most significant to us is what you share in common … love, compassion for one another, strength when you think you don’t have any left, hope in your heart when every bone in your body says there is no hope, the tiger mom instincts you show when problem-solving, the ability to do more than you ever thought on less sleep than you ever thought you’d need, you are jugglers of care and compassion for the rest of your children and family as well as your MLD loved one(s), … and show sparkles in your eyes even when the sparkle is through tears.
We’ve been with you through the search for a diagnosis, the panic of diagnostic confirmation, the search for appropriate and accessible therapies, optimizing quality of life through clinical care, garnering social services and school-based supports, transitions for some of your loved ones to young adulthood, transitions as spouses were consumed by MLD, sharing as your loved ones lose skills and abilities, and for many, walking alongside you those last days for your loved one – and the days that follow for you as you adjust to a different life with a huge hole in it.
All the way along this journey, moms, you are an encouragement to others and to us. You show kindness, strength, and most importantly, love … to your family, those around you, and to us. For that we give thanks.
Dean & Teryn
… and Lindy too!