A few weeks ago, I was blessed with the opportunity to meet Maeve for the first time. Despite only meeting Maeve this once, this amazing nine-year-old managed to change my life forever. I want to take this opportunity to share this experience with you all.
On October 18, 2007, Maeve Agnes Tierney was born with a rare brain malformation called Holoprosencephaly (HPE). For background purposes, Maeve is my cousins’ cousin, but I consider her mine as well. I remember, rather clearly, getting a phone call from my father’s side of the family telling us of Maeve’s birth. This day was the beginning of a life full of hurdles not many children experience, but also a life full of abounding happiness and love.
This day was also the day Maeve jumped her very first hurdle: birth. Maeve was diagnosed with Alobar HPE in utero. Her parents, Meggan and Ed Tierney, were informed of her birth defect and that only 3 percent of babies diagnosed in utero survive birth. But on this day, October 18, Maeve was born alive! At first, doctors estimated that she would survive for only a few hours. But the minutes continued to pass and Maeve got stronger and persevered; these hours turned to days and to years. Maeve was slowly but surely gaining strength and jumping every hurdle that came her way. As for her parents, they learned more and more about HPE, faced numerous hurdles themselves and more importantly embraced their new baby girl.
HPE is a disorder caused by the failure of the embryonic forebrain to sufficiently divide into the double lobes of the cerebral hemispheres. Essentially, Maeve’s brain failed to divide into the right and left hemispheres leaving her with a single lobed brain structure that can cause skull and facial deformities. Additionally, HPE children like Maeve are developmentally delayed and face several health issues including seizures and diabetes insipidus. There are three classifications of HPE: Alobar, Semilobar and Lobar. Alobar HPE, Maeve’s classification, is the most severe case and means the brain has not divided at all and generally these patients have severe facial deformities. Following, Semilobar HPE is the intermediately severe case and is classified by somewhat divided lobes; Lobar HPE is when there is evidence of separate brain hemispheres and the baby’s brain could be almost normal.
While I researched HPE in hopes of conveying information about the disorder, Meggan and Ed—Maeve’s parents—conducted similar research to understand their unborn baby. They not only read what I did but mountains more. Reading the unfortunate information on HPE, they gave Maeve a name early on in hopes of further connecting with her as her time in the world would be unpredictable:
Instead of dreading the day of her birth, we embraced who she was and hoped for happiness and love.
On October 18, 2007 Maeve was born: alive and completely perfect in her own way. Unlike most children born with Alobar HPE, Maeve has little to no facial deformities. She does, however, experience the other physical issues children with HPE face: she has a shunt and a g-tube, seizures, diabetes insipidus and is not be able to regulate her own body temperature. But while she faces all of these hurdles and cannot talk or walk on her own, all that she can do is truly a miracle.
As I mentioned before, the day I met Maeve changed my life. I was at my grandma’s eightieth birthday barbecue in Harwich, Massachusetts. With the recent passing of my grandfather — her husband — my family flew out in order to celebrate with her on this special day. This was the first time I had been with this side of my family in over seven years and, while I was unbelievably delighted to be with the Wilson’s for the first time in quite a while, I knew Maeve was going to stop by and I was anxious.
What will Maeve look like? How will I communicate with her? Can she talk? Or walk? What can she do?
To be honest, I had no idea what to expect. While I had seen pictures and heard stories, I was still scared. I didn’t want to hurt her or upset her. I didn’t want her to hate me. She has some big, scary disorder and I had no idea how to cope with that.
But from the second I met her — face to face — all of this anxiety left. She entered the party in her decorated wheelchair and immediately the mood changed. Not in the way where everyone immediately becomes aware that something is “different,” but in the way where everyone realizes that if Maeve is happy they have no right not to be. She truly brightens the mood. I watched as Maeve’s grandma Ellen bounced her on her knees, sang to her and treated her like any of the other grandchildren. Immediately, I shared in this abounding happiness. I wanted to hold her and experience her love first hand.
So I did; I asked if I could hold Maeve on my lap just as her grandma had done. What I experienced in the next hour holding her will stay with me forever. I didn’t mind that I was missing out on several games of Cornhole because Maeve brought me into the moment and made me appreciate what I was doing not what I was missing out on. I worried about nothing and stayed entirely present. It was the first time in a while that my mind was clear and I could feel myself fully in the moment. She can’t talk or walk she is almost blind and deaf, she is nine years old and the size of a six-year-old, and she is truly amazing.
In this hour, we played “Head, Shoulders, Knees and Toes” over a hundred times. Each time I got to “shoulders” she would anticipate “knees and toes!”. You could see it on her face; She knew what was coming and she couldn’t wait so she would curl up her legs and uncontrollably giggle. Each time we played this game, Maeve was just as delighted, if not more so, than the time before. Each time someone took a drink from a glass and made a refreshing “ahhh!” sound, Maeve would smile so brightly. Each time I would tickle her feet, more uncontrollable laughter would erupt from her small body.
Through these short 60 minutes, I realized that Maeve is not her disorder. In fact, Maeve kicks her disorder's butt and has been for nine years now. While Maeve cannot do many things, she can do one thing that most people, especially today, cannot. Maeve can love.
Her love is unconditional and shared with all. You can see how much she loves her parents when they cross her line of sight and she shares heartwarming smile. You can see how she much loves her cousins when they let her play with their hair and she begins to infectiously giggle. You can see how just much she loves playing “Head, Shoulders, Knees and Toes” as each time she erupts with laughter. Despite only knowing me for a short time her a big, lovely, perfect smile tells me that she loves me too.
In a world filled with so much hate, Maeve only knows how to love. And in this way, despite her disorder, she is better than us all. What I learned sitting there with her was that we have no excuse not to love. We have no excuse not to appreciate something so little as a head of hair or game of “Head, Shoulders, Knees and Toes”. We have no right to mope when it's rainy or get mad when the internet doesn’t work.
Maeve loves unconditionally because she can. Her disorder is the least of her issues and while it controls her life, I have never met someone happier or more filled with love than this little girl. We are all capable of this type of love, I know it. What makes us different from Maeve is not her disorder and our healthiness; what makes us different is our selfish choice to hate when we have no excuse. Maeve has the best excuse in the world and refuses to fall victim and lead a life of misery. While she has her good days and her bad, she never fails to smile and giggle through it all.
She was dealt a hand that many of us couldn’t even imagine yet is happier than anyone I’ve ever met. She has amazing, loving parents and a great family, she goes to school with the kids from her town, she does ballet and art, she even gets threatened with detentions when she won’t stop giggling in the library, but most importantly she leads a life of happiness and love.
Maeve is my inspiration. While I know that this article does not do this experience justice, I urge you to listen to my words and imagine what it would be like in her shoes. And not the shoes of a disorder, but shoes full of love, giggles, and happiness.
Now why can’t we all be that happy?
