By Fred Diamond

Having a child suffer with Lyme and other tick-borne diseases can be devastating. Having a child pass away will shift your life in ways you could never imagine.

In her raw and open book, “My Promise to Alex,” Jody Hudson documented the challenges she and her daughter Alex faced through their journey to understand what was happening to Alex as her health continued to decline. The lack of answers they were getting from the medical profession through the process did not help.

In this episode of the “Love, Hope, Lyme” podcast, Jody talked about how she kept her promise to her daughter to create a foundation that would educate people about tick-borne diseases and aid in paying for treatments when possible.

“I started the Alex Hudson Lyme Foundation where we issue financial grants to Lyme patients. I am carrying out Alex’s wishes and to encourage and motivate others that are going through this horrific battle that you are not alone and that there are plenty of people out there that want to support you and help you through this journey,” she said.

What family members need to know

I asked Jody what parents, friends and other family members should know about what their loved one is going through.

“Don’t expect to understand what they are going through because many times Lyme patients don’t understand it themselves. My daughter was trying to help me along with her own journey and her own process, but she couldn’t communicate a lot of times what she was feeling. She was figuring that out while she was being treated,” she said.

“Give them grace. It’s not their fault if they can’t show up for a family event. They could have a good day, but the next day is not going to be so great. They could have a good hour, but the next hour is not going to be so great,” she advised.

She said to be careful how often they ask them how they are doing with the treatments.

“Don’t always ask ‘Hey, how’s the treatment going? You’ve just increased your medication, or you just had red-light therapy or a massage. How is that?’ I used to think I was encouraging my daughter, but it was working against her because she was getting anxious and would think the treatment was not working,” she reflected.

She also said to be conscious that they are losing relationships with healthy friends who do not comprehend what they are going through.

Losing relationships

“She lost all her friends. When you’re in relationships with people whether it’s a spouse or a friend, you have to show up for that relationship. When somebody has a chronic illness, they can’t even show up for themselves. They have nothing to give,” she said.

“With chronic illness, their support system gets smaller and smaller. In our case, sometimes they only have that one person. You must fulfill many roles. It was heartbreaking just being there and showing up for them because they cannot show up for themselves most of the time.”

I asked her about the healing process.

She said, “Healing is not linear, and it ebbs and flows. With Lyme disease, it’s like you have a buffet, and you can select from this, you can choose from that. That’s just with your medications and treatments and doctors, but there’s a whole other layer of different treatments that Lyme patients go through,” she shared.

“It’s often two steps forward, one step back. You think that they’re getting better but then they could regress because of a food that they’ve eaten that they’ve never had an allergic reaction to before. My daughter developed mast cell activation syndrome (MCAS), which is very common with those that have a compromised immune system. That truly is what she died from,” she concluded.

“Celebrate the successes. Be there and encourage them, and then be there supporting them when they have those setbacks, because there’s going to be a lot of setbacks.”

“A servant’s heart”

I asked her to describe her daughter.

“She had such a servant’s heart. Alex felt most comfortable being with the homeless. She just felt a connection with them because she knew that they were wounded. She always wanted to give more than receive and even at the end, she was returning emails and texts from people that were reaching out to her in the Lyme community.”

I asked her what she wants other parents to know.

“I’m a fixer and the most challenging thing for me was that I could not fix her disease and it drove me bananas. Sometimes I would just take off in my car and just go for a ride because I could not let Alex see me crumbling. I always had to have my game face on,” she intimated.

“It was hard. My daughter never once took pain medication. She was suffering so terribly, but she wanted to be so present with everything that was happening to her.

Jody will be the keynote speaker at the Lyme Fight Masquerade Gala on September 30 in Carmichael, CA. Learn more here.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast.

Fred Diamond is based in Fairfax, VA and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. Reach out to Fred on Facebook for your copy.