Wendi Tipps knew something was amiss, because newborns aren’t supposed to laugh. Doctors, however, dismissed her son Landon’s peculiar sounds as a form of crying. As time went on, Landon’s development regressed. He was diagnosed with a form of autism and began to have seizures – though EEG tests didn’t show anything abnormal. So during a hospital stay with Landon over the 2008 Christmas holiday, the Cooke County mom took to the Web and came across Hope for HH, a nonprofit founded by parents of children with hypothalamic hamartomas. Finally, Wendi had answers. Landon’s laughing – and later crying – were symptoms of a rare, benign brain tumor on the hypothalamus, the portion of the brain responsible for hunger, thirst, and temperature and hormone regulation. In addition to the seizures, the tumor, which affects one in 200,000 people, causes severe behavioral difficulties.
Landon, who’s now 6 years old and has also been diagnosed with intractable epilepsy, cortical dysplasia on the left side of his brain and a microduplication of his 17th chromosome, had his last of six surgeries in October. He hasn’t had a seizure since November, and his development is progressing again. Wendi stays positive by clinging to her faith. “Before Landon started having the seizures, I had read The Purpose Driven Life in Sunday school,” she says. “God gave me the strength to know we all have a purpose. I sometimes question, ‘Why do you put so much on me?’ but I’m trying to put a positive spin on it and spread the word and create awareness.”
What are your days like? Landon has therapy appointments in the mornings. He has play therapy in Grapevine that sometimes includes my daughter, Addison. It helps him see how to take turns and share. He also goes to the University of North Texas for speech therapy.
What’s the sibling dynamic like in your house? Houston is in sixth grade and Addison is 4. Addison loves when she can say something to Landon and he’ll repeat it. This is all Addison has ever known. She nourishes him. They’re very close. Houston plays baseball and Addison is in cheer. One of the things that my husband David and I have found value in is making sure Addison and Houston have time that’s only about them. David works nights now, so after I put Landon to bed I have a little time with Addison and Houston. We like to play Wii. Addison is obsessed with Mario Kart.
Between the doctors’ appointments and kids’ activities, you must drive a lot. We used to have a Ford Expedition, but we were spending so much money on gas. Last spring we bought a Volkswagen Jetta. It already has 40,000 miles on it, but I can make the car payment and buy gas for what it used to cost to just fill up the Expedition each month. We live on the road. Landon loves to go “bye-bye.”
Tell us about your volunteer work at Cook Children’s Medical Center. I’ve participated in the Parents as Partners program at Cook Children’s. You serve as a mentor for other families and are there for support. David’s off day used to be Fridays, so I’d go to the hospital every Friday to volunteer and talk with the families. I also helped start the Neuro Family Advisory Council; I chaired that for two years. Now I chair the Family Advisory Council.
And you’ve recently started another project? My brother’s church helped sponsor our trip to New York for one of Landon’s surgeries, but I think about all of those families who don’t have the means. So I’ve started a fundraiser for Hope for HH. We’re having a mud run for kids, ages 4 to 14, on May 19 – my 30th birthday – at Circle N Family Dairy in Lindsay. We’ll have a special mud pit area for kids with special needs.
Is there time for summer vacation or date nights? It’s kind of difficult financially, but last summer we went to my brother and sister-in-law’s time-share in San Antonio. We went to Schlitterbahn for four days. They cater to families of kids with special needs. They assigned us a tour person to take us around and help us in line. Landon loved it. He loves being in the water. My sister-in-law and nephew help out with babysitting. David and I sometimes go to Red Lobster; it’s where he proposed, and we both love seafood.
How would you spend a child-free day? I’d be at the hospital giving back. It refreshes me and makes me very grateful for what I do have. I also make custom girls’ shirts. I have a Facebook site for the business, ADDI-tudes. I don’t sleep; I make shirts. After my meetings at the hospital, some of the ladies and I go have dinner at Blue Mesa. Those are my moments with people who understand the medications and the seizures.
How has being Landon’s mom changed you? Patience! I look at life in a totally different way. I don’t take anything for granted. I’m also not as quick to judge other people. Every second is a gift.