Fighting IIH

The Strife of Normalcy for a Family in Need

I am always inspired by women who manage to keep going despite their hardships. Women who face real struggles, yet still find a way to make it through another day. Women who don’t know how they were able to juggle it all- but did. Women who do not let their adversities define their entire being.

For a few years now, I have been following the journey of Justine; a wife and mother of three children with disabilities who is diagnosed with Idiopathic Intracranial Hypertension. IIH is a rare, incurable brain disease that “causes the body to overproduce spinal fluid, building up in the brain.” According to Justine, “It is like having all the symptoms of a brain tumor, without having the physical mass.”

I’ve often seen her mention on social media the pain she is in, and I found myself wanting to know more about what an average day was like for someone in her condition. Justine expressed, “For me, it’s waking up to the sound of fluid rushing in my head, trying to get my bearings because I’m dizzy from lying flat so long. Then, the pain kicks in. The rest of my day revolves around trying to dull the pain. Most times, I’m plain out sucking it up and ignoring it because I have too much to do.”

And Justine says that’s an average day. On her worst days, her vision goes in and out, and most times, the only things she can do is stay in bed in a blacked-out room with an ice pack on her head. She claims the nausea, dizziness, and pain can be paralyzing at times. Once the anxiety is added in, Justine is left with little hope.

Unfortunately, she is also allergic to the medication recommended as treatment. Though she is able to be on a long-term diuretic therapy, it leaves more pricking-and-pulling for blood tests to ensure treatment does not affect her liver and kidneys. Not to mention, Justine has already had to undergo multiple surgeries. She says she knows she will need more in the future, as well.

I could not help but feel extreme sympathy and admiration for what she endures. And then I remember that Justine is not just a victim of IIH, but a mother to three children with disabilities of their own. AJ, 17, Albert, 12, and Nickolas, 11, are all diagnosed on the autism spectrum. Plus, Albert suffers from Cerebral Palsy, Fibromyalgia, and Dysautonomia. Albert suffers from an anxiety disorder and fainting spells. And Nickolas, also has severe ADHD and ODD, along with a sleep disorder.

But how does she manage? If you see her boys, they are all smiley, average-appearing, happy children. So, Justine must be doing something right. But she also gives a lot of credit to her husband Lukas. “He’s a saint,” she began, “I don’t give him enough credit but he’s taken on a lot with a disabled wife and three special needs kids. He works two jobs to try and keep us afloat.” Kudos to Lukas, and their family support. Justine mentioned that both her mother and her in-laws are very influential in their lives as well.

Her oldest son, AJ, suffers the worst. “He’s in constant pain and has many physical limitations which affect him more than just physically because he just wants to be normal.” Sometimes his pain does not allow him to get out of bed, which carries him into violent meltdowns that cause him to injure himself and others- likely a response caused by his autism.

Her youngest son, Nickolas, is the one Justine says needs her the most. She says that his behavioral issues cause him to need round-the-clock supervision. Though they have a team of behavioral specialists and therapists to assist them, doctors still have suggested the possibility of placing him in residential care. Justine, however, will not allow her son to be treated by anyone but her and her husband primarily. But unfortunately, his aggressive and destructive behaviors have sometimes been abusive. “It’s very hard to talk about, but he has come a long way,” was what Justine said in defense of her son.

What touches my heart, is not just Justine’s ability to keep composure when dealing with the height of her and her family’s medical issues, but how passionate her children are about wanting to maintain their own sense of normalcy. AJ, the oldest, is an avid reader with a passion for crocheting. Albert, enjoys going to school and playing Pokemon. “It’s not always easy for me, but I want them to only have good memories,” she says with regard to her doing her best to take attend field trips, school events, and holiday parties with her children. “I don’t want them remembering me sick all the time, so I push through.”

Financially, however, Justine and her family are struggling. Though Lukas works hard, Justine is not able to work due to her conditions, and the care that her children need. It pains me to say this, but social security has been denying her claims for disability. So, often times, they find themselves at a toss-up between putting food in the fridge, or gas in their car.

Justine mentioned that she prays- a lot. She says spending time with her children is what keeps her going. “My kids are my life, and literally what keeps me alive,” she expressed. But sadly, she said her hope for the future is that there is a future for her at all. Though she has found comport in online support groups for people with IIH, the reality of the situation is that she has a chronic illness that forces her to think about her own mortality more often than she’d like. “I never thought I’d need a living will at 40,” she said.

But her hope is that, regardless, her kids will be happy, successful adults. And, she prays that more research and awareness can be given to IIH. She hopes that those who suffer as she does know that “they are not crazy.” She advises them to get second, even third, opinions about their condition and to find a doctor that is right for them.

“I take my life one day at a time now. And, I ask for help even when my pride doesn’t want me to.”

Justine currently lives in Florida, though she is a native New Yorker, with her three kids, husband and animals. Rescuing animals is another passion for them as a family. I am glad to have connected with her, and to get to know her family virtually.

Follow her family's journey on Facebook here.

-Christine Weimer, @beacolorfulyou

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