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Stories for JM Grandparents

Grandparents Care

A Grandparent's Perspective

Daisy’s diagnosis of JDM has rocked our world, but Daisy is not my child. She is our oldest grandchild, the daughter of our oldest child, Kristen.

We have always had a very close relationship with Kristen and then with Daisy, especially since we live only a few miles apart. It is not uncommon for us to get together several times a week. We have always been supportive and involved with our children, but we also have very full and active lives. In addition to being a parent and a grandparent, I am a CEO and partial owner of a 25-year-old family business founded by my father, and managed with my brother.

Having a grandchild with a serious disease is like a double whammy for grandparents. While my heart aches watching my granddaughter suffer with the disease, my heart also breaks for my own child watching her daughter suffer. It is so difficult to see my child suffer the heartache and extra burden for her own child. It is a very emotionally intense feeling.

My advice to grandparents is to learn everything you can about JDM on your own. Ask your child to give you resources and any information that they can share, but also do your own research. When Daisy was diagnosed, Kristen immediately did her own research while I did mine.  Soon were able to compare notes and come up with a plan.

As grandparents, I think we have a different perspective, additional wisdom and stability that we can offer to our kids. It’s important to utilize these strengths to everyone’s advantage! If grandparents can provide support, and become that “safe place” for their children and grandchildren to vent and reveal their true feelings, this is an amazing gift. My husband, Harry is retired and he helps in a physical way in going to appointments, running errands, babysitting, taking them to lunch, etc. I make the arrangements for travel to Chicago, etc. and serve as a sounding board for Kristen. I help her keep perspective and faith. I pray constantly for them. I encourage them, even when my own heart is breaking. I also try to help them so that they can continue to have fun and live life around meds and treatments, etc. Grandparents need to understand that things are different, their grandchildren’s needs have changed, and they may not be able to do things that they used to (both physically and emotionally.) If you are able, offer financial help as well. A grandparent may have more resources than the child. In our instance we have been able to help with trips to Chicago and other things that require more resources.

With the side affect of the drugs and the disease itself causing great havoc to Daisy’s little body we can offer lots of comfort and protection to her. We can nurture her and foster growth and try to be as normal as possible, while understanding that there is nothing normal about this disease and the process. We have the tolerance for her meltdowns and try to comfort her. We can babysit her and Kristen knows that we understand her needs and understand her moods, etc. We let her know that we love her more than anything and that she will never face any of this alone. We offer hope for her. We encourage her and as a grandparent she can trust us to always walk this with her. 

Another positive thing we can do as grandparents is help fundraising efforts so more research can be done and a cure can be found. We do not have children at home so we have more time to do some of things that our children do not. This is a great opportunity for grandparents who live far away from their children/grandchildren to do something that can make a real impact. Fundraising is one of those things that can be done wherever you are.

Getting connected with other JM families can help as well. Grandparents that live out of town can get involved with other JM families living closer to them to help out. Being close to another child with the same disease will help you understand it better when you do have a chance to be near your own child/grandchild. Besides, we are all in this together so helping each other helps everyone! Getting involved with Cure JM is the best way to connect with other families and to start a fundraising effort. I have been quite impressed with the knowledge, help and resources that are freely given through this organization.

Grandparents also need to remember that this is a very traumatic and hard time for everyone. We shouldn’t rely on our children to keep telling us what they need or what we can do to help. That can cause stress for our kids too! I think grandparents should take the bull by the horns, jump in and get involved themselves. Your children/grandchildren have enough on their plate. I would never do anything without informing my child, but I also know it is a help if I take control of my own efforts, not waiting to be told what I can do for Cure JM. The conference was awesome and I advise more grandparents to attend. I loved the program for the grandparents and the education was awesome. 

At the end of the day, my biggest piece of advice is: get involved! Do you own research and make your own connections. Do not depend on your child to educate you, and offer to help in any way you can. Be there for your child and grandchild by offering emotional support, comfort and fun. Organize others so that you can spread awareness, create a support network and promote successful fundraisers. Pray for each other and organize others to pray. Be responsive to what they need, not just what you think they need, and don’t add your worries and fears to their long list of concerns, or become another source of worry for them! While it is important to show your child/grandchild that you care and this hurts you too, it is not a good thing to dump your own sorrow and heartache on them. Handle your issues with others. Share your pain and heartache with a friend or someone else. Your child has enough on their plate. Refresh yourself so that you can offer encouragement and understanding to your children.

Daisy was just diagnosed in March, so we are new to all of this. We have been full speed ahead since then, but are still trying to learn and wrap our minds around all of it. If others can benefit from our experiences, we are all about it.

I can’t imagine what it feels like to have a child diagnosed with JDM but I know what it feels like to have a grandchild diagnosed with it, and I hope that my insight can be helpful for other grandparents, their children, and their grandchildren who are also battling this disease.

--Shelia (Daisy’s grandmother)

Learning to Thrive Together

When we found out my granddaughter was diagnosed with Juvenile Myositis, the news was overwhelming. In the beginning, we thought of JM as an immobilizing threat, a vicious attack that was thrown at us, brutal and frightening. It consumed all our energy, and made us feel emotionally lost, numb, even “frozen” at times. We had more questions than answers, and one in particular was always running through the back of our minds: "So what does this really mean?" As a grandparent, having no idea what to say, what to do, what to think or even how to help was especially troubling.

In time, after becoming familiar with treatments, helping with the various doctor’s visits and connecting with the wonderful Cure JM family, our point of view has changed, and we have discovered an opportunity. This diagnosis has triggered personal change for our entire family. We’ve let go of being “busy.” We’ve found safety in our faith, our family and our friends without diminishing the reality that JM is a lifelong, life-threatening disease with no cure (yet).

In the big picture, we can make a difference through promoting JM awareness, gifts and assistance to Cure JM. On the smaller scale, in our own families, we as grandparents can assist by lending a hand to keep all things (not just those related to the disease) moving forward and on track. Don’t underestimate the power of a smile, hug, and note of encouragement or special outing. Skyping or video chat can also be a lovely interruption in dreary day. Grandparents can “fill in the gaps” when needed. We can be a valuable resource. 

Since that initial diagnosis, we have learned there are special rewards and opportunity during a crisis. We have discovered hope, wisdom, and inspiration while learning to thrive together. We are stronger as a family, and have learned that we are even stronger with our extended JM family. We're all in this together - let's find a cure.

--Anonymous