If your child was recently diagnosed with a rare disease, it may feel like you are alone, but there is a community of parents just like you ready to support you and share their experiences. Even though your child’s diagnosis is rare, there are others who are walking ahead of you on this road. These rare disease families continue to pave the way for those newly diagnosed with their selfless advocacy. One such advocate, Victoria Delano, reached out to Daily Mom to share her thoughts on what it is like to have a child with a rare disease.
Not All Doctors and Research Is Created Equal
Find your hero doctors. Living with a rare disease often leaves parents as the experts, and finding even one doctor knowledgable in the rare disease can be a challenge. While it is important to spend time seeking out the most knowledgable doctor for your child, keep in mind that sometimes finding a compassionate doctor who is willing to learn can be the most valuable person on your child’s team. Through the years, this person will become your child’s hero doctor! Show them the gratitude you feel towards them.
You will become an expert on your child’s rare disease, but it is important to do your research wisely! While online support groups are a wonderful resource for support, keep in mind that Dr. Google may not be reliable. Start your research with these trustworthy sources:
- Health On the Net Foundation code of conduct (HONcode) certified websites
- National Organization for Rare Diseases (NORD)
- National Institutes of Health
- The Trust It or Trash It Tool is also a great resource created by The Access to Credible Genetics Resource Network.
While it can be scary to learn about your child’s rare disease, the most important thing to remember is that your child is an individual and not a statistic!
Honor Your Heart
Having an ill child can easily take over a mom’s entire world. It is important to find joy in each day, no matter how difficult that day is. At the end of the day, if you look back and are completely overwhelmed, remind yourself that tomorrow is a new day and is another opportunity to find joy. There may be days when nothing is ok, nothing is joyful, and you will feel heartbroken. Allow yourself to grieve. Schedule time for friendships and relationships that lift you up so you don’t lose yourself.
During my own rare disease journey, I have grieved many times over. I have grieved the loss of the future I had hoped for, dreams of having a healthy child, the career I will never have because I am now a nurse in my own home, the loss of friends and family who haven’t continued the journey with us, and the ability to think about tomorrow. But, this has given me tremendous perspective that living in the moment is the healthiest and happiest way of living!
There’s More to Care Than Medicine
Do not be surprised if you are unable to find services for your rare disease child. It may be impossible to find resources such as social workers, case managers, physical therapists, occupational therapists, counselors, school supportive services, Medicaid waiver programs, and special needs camps. I have found it very easy to allow bitterness to creep into my heart as we hit road block after road block. Just as it is important to find hero doctors, find similar heroes within these supportive services.
You Don’t Have To Drown
You will feel alone and isolated. Use the internet to your advantage and find others who understand, but don’t leave out those around you. It is easy to assume family and friends don’t want to help when they just don’t know that you need them. Be specific with them. A major turning point in my life was the day a friend asked me to come up with a detailed list of everything I would dream of others doing for me. Spending time building a community of support around you will pay off. You can do this!
Rare Disease Day
There are a lot of days throughout the year set aside to raise awareness to different issues or different causes. Honestly, many of those awareness days are for things the overwhelming majority of people in our society are already aware of. However, February 28th is not one of those days. February 28th is Rare Disease Day. Rare diseases are in desperate need for awareness because by their very nature of being rare, they remain largely unknown. We aren’t aware because these diseases are rare, but just because they are rare doesn’t make them any easier to deal with. In fact the opposite is true. Families living with a rare disease diagnosis often lack the support, research, and care afforded to well known diseases and conditions. These families fight bravely everyday to raise awareness, to support research to find cures or treatments, and to just enjoy being a family like the rest of us. If you are reading this and have never heard of any rare diseases, take a moment to visit RareDiseaseDay.org and educate yourself.
Helping “Rare” Families
If you are reading this because someone you know now has a child with a rare disease, here are some ways people can help their rare disease family and friends:
- Gift cards
- Thinking of you cards
- Help around the house
- Respite care, even if it is while mom naps on the sofa!
- House cleaning
- Host a work day at their home.
- Rides to appointments
- Take then a cup of coffee, a bottle of wine, or a new book.
- Educate yourself.
- Let them grieve and be kind.
Victoria Delano lives in Alabama with her husband, kids, and their two dogs. She spent her career as a classical musician performing and teaching college, but has left that profession in recent years to work as a patient advocate.
Lots of doctor appointments mean lots of time in waiting rooms. Here is The Germ-Free Guide To Entertaining Kids at the Doctor’s Office.