We’re Learning to Live with HH
Tags: hypothalamic hamartoma
We have found over the last year that getting this rare diagnosis has made us feel very isolated at times. People (including us) don't understand everything that HH entails and how it affects our daily life. We have been lucky to have such loving family to help us when they can, but they all live two states away. Our friends in Baltimore try to be supportive, but they all live their own busy lives. In some of our most stressful times where Jeff and I can really use a date night we fear calling a sitter who may have to deal with seizures or difficult behaviors. We also don't want to spend extra money when dealing with medical expenses has made discretionary funds tight. We feel we cannot ask friends because that is just as big a responsibility and we don't want to jeopardize the friendship. So we mostly deal with it on our own the best we can.
It's even isolating when your local doctor and your treatment doctors don't communicate well with each other or with you. You feel confused and abandoned.
People ask how they can help but we never know what to say. Yes we want/need your help, but we don't know what to ask for and feel like we can't ask anyway...
Often we isolate ourselves. It has been tough dealing with Eli's very active and difficult behaviors and if someone calls, its almost a hassle to take time out to talk to someone. Concerned friends and family ask questions and so often things are not going well and you don't always want to be a Debbie Downer. And you also don't want all your conversations centered around HH. So calls have gone unreturned, not because we don't care someone called, but because I just want to go to bed...
We have been fortunate to have friends, family, school community, and even strangers help support us financially. In less than a year we have made five trips to Houston for treatment, two of them long stays. Their financial help has kept some of that stress down!
I started a family friendly hiking meet-up group on meetup.com. This has been nice to connect with other families outdoors where Eli tends to show his best behaviors. We have 2 - 3 hikes a month and met some awesome families.
Being in touch with other families affected by HH by phone and Facebook (Eli’s Adventures) have been a great support. Even though the course of HH is so varied, it helps to hear other people's experiences and share your own. I love when new families reach out to me because I was so grateful to learn from other families and want to pass that on.
It's hard to make new connections and stay connected with families due to the constant worry of how Eli's symptoms impact his friendships and my self-consciousness as a parent. But you just have to get over that. Otherwise you will always be on the outside. And often we don't know what other families are struggling with themselves.
I am happy to see over the last two months many improvements in Eli's seizures and behaviors. I think his brain has been healing and we are lucky to see him make some positive strides. As parents, we are also improving our parenting behaviors as we try and figure out what works best. But we have found HH to be unpredictable and always keeps us on our toes.
We are all a work in progress, HH or no HH. Continue trying to make adjustments and build supports to see what helps yourself, your child, and find ways to enjoy all the interesting adventures in life!