EB Moms on a Mission

Mother's Day is around the corner and we hope that all of our moms in the EB community will enjoy a beautiful and relaxing day filled with whatever will help refresh and rejuvenate them most. In my job as well as my involvement with debra, I meet up with EB families all the time, and I know personally how challenging being a parent can be let alone a parent to a child diagnosed with EB. So although this blog may be geared toward our moms out there because of the time of year, I certainly empathize with our patient, hard-working EB dads, too.



It can be very easy as a mom and a caregiver to overlook our own needs. We always hear people who share stress management strategies say to follow the example in an airplane emergency and put on our oxygen mask first before we assist our loved ones, but how many of us actually remember to do this? We want to share some reminders at this time honoring the love, patience and care of mothers everywhere but especially here in the EB community.


  • Be willing to ask for help. Many of us are taught as children to become self-sufficient. Some of us may have grown up needing to be more independent more quickly due to single-parent homes or dual-income households where both parents work outside of the home, and as we grow older, we can become accustomed fending for ourselves. However, when challenges arise as a parent, we must remember: we are not alone. If our time, energy or skills are exhausted and others brought into the home could alleviate some of the stresses of care giving for a child with special care needs, such as the demands of EB, we will want to release any resistance we may have to bring others into our circle and ask for additional support. This may be to hire a part-time caregiver or someone to assist us with managing other duties in our household so we are not trying to wear too many hats at one time and putting ourselves under unmanageable pressure.
  • Build downtime into your schedule, whether it is a 20-minute date with yourself to do something solitary and peaceful like meditation or yoga, or simply going for a walk when another member of the household can relieve you of care giving responsibilities for a brief timeframe. Stepping away even for a small period of time can offer you time to collect your thoughts and replenish your energy, and that also translates into your mood as you resume caring for your child.
  • Seek resources that offer the safety, comfort and discretion you need to discuss your challenges and receive feedback and support. Giving yourself permission to share the stresses and challenges you face on a daily basis with a local caregiver support group, a licensed counselor, an online forum, family friend, or clergy member with whom you feel you can trust can provide valuable opportunities to vent frustration and possibly take away alternatives as you try to deal with difficulties you face.
  • Accept your humanity and forgive yourself. As parents, we are not always going to get everything right and for a lot of us, we will make mistakes along the way but each mistake comes with an important lesson we absorb and in the process, we learn more about ourselves — our strengths, our weaknesses, our capabilities and our limitations. As long as we are willing to admit this and be prepared to learn, adapt and keep plugging along, the next challenge will be that much easier to face and tackle.


Being a parent is never easy, and we salute all of you but particularly our moms in the EB community today as this Sunday serves as a reminder for all you do. Let the loved ones in your life honor you, but don't forget to honor yourself by giving your own mind, heart and body precisely what they need to help you continue being the caring, loving and amazing moms you are.

Supporting EB Moms This Mother’s Day

Mother’s Day is just around the corner. This is often a time when children and spouses pull out all the stops to show they care. For moms of children with EB, being a mom carries a whole different set of challenges and stresses.

We thought this would be a great opportunity to offer some supportive suggestions to those who may know an EB mom personally and want to remember them at the holiday. Remembering her with a present is nice but helping her find a way to use the gift and enjoy it may take some extra effort on your part. Remove any guilt she may feel for allocating time to herself by making your present stress-free. Here are some gift ideas that may offer a small lift of spirits and demonstrate you care.

  • Offer A Fresh Idea. Consider fresh-baked goods, a fresh fruit arrangement or fresh flowers. All moms (and some dads, too) can find themselves running around as they manage multiple lives’ daily routines, but it can be a wonderful pick-me-up to receive a reminder from a good friend or co-worker to stop for a moment and savor something new, fresh and handpicked.
  • Encourage Downtime. Everyone knows that devoted moms tend to forget to take a little time for themselves. It’s not always easy to carve out personal time, but perhaps a reminder like a gift card for downloadable music for her mp3 player or downloadable books for an e-reader is a thoughtful way to say ‘it’s okay for you to steal away for a few moments, too.'
  • Lend a Hand. One thing that can be difficult for EB moms is finding a window of opportunity to step away from the house and run errands. Offer to fill in at a set time on the same day weekly for a month (or more) as a gift that truly keeps on giving.
  • Rejuvenate. The idea of a day of pampering whether it’s a much needed replenishing of one’s mind and body at a spa or a simple afternoon getting a manicure may sound attractive to a hard-working mother. To an EB mom, it may be just what she needs in that stressful moment to catch herself from overworking herself so hard she jeopardizes her own health, restfulness and clarity.
  • Whisk Away. What better way to step away for a few moments than a night out for dinner and a movie with a good friend or a special afternoon shopping, taking in a local attraction or simply lounging by the community clubhouse pool with a friend and a good book. Chat with a spouse or family member about relieving mom of her responsibilities for a short period of time and snag her for a little fun time away from home to catch up and unwind.