“Anabelle has been a patient at Boston Children’s Hospital since she was a baby. She had multiple issues at birth with most of them revolving around a chromosome duplication that was extremely rare. There’s no one in the world who is known to have her chromosome abnormality, so she’s always been under a microscope and looked at closely her whole life.
She was doing really well up until this past summer. I took her to her first gymnastics class and she just collapsed on the floor. She was unconscious.
This event led us to discover her pulmonary hypertension diagnosis where she was in the hospital for 35 days. They got her on the pump that she’s on now, which gives her the medication that can only be delivered through a central line. We were just discharged a few weeks ago and she was right back at Boston Children’s a week later with some issues from her medications- some wrinkles that need to be ironed out. We’ve had her home for a little over a week and we’re just trying to settle into what ‘normal’ is going to look like now for our family.
It’s overwhelmingly emotional. We’ve talked about it a little bit with family and friends, but to be honest, I really haven’t shared that much to even them. I’ve found myself in pretty dark places over the past month or so.
I teach yoga, and before all of this happened, my whole thing I brought out in teaching for months was the importance of meditation and always coming back to the present moment. Even though I drifted from my normal practice of sitting and practicing and meditating when she was in the hospital, I still felt like I was meditating the entire time. I was very, very present with what was happening.
Looking back, the practice I had put in and the hours I had put in before all this really set me up to deal in the way I had. I was able to go through it very gracefully. My husband and I have still been able to laugh and find moments of happiness and gratitude for what was happening in the moment; knowing she was okay in the moment and not trying to get too worried about what’s going to happen here down the line. A lot of the struggle was having to leave the hospital every night because only one parent could stay over. We have a five-month old as well and that was another thing- constantly leaving my baby that I was nursing.
This was all just happening in this moment and it not forever. I stopped working pretty much the day she collapsed at gymnastics and I haven’t been back to work sense. In that moment, me being with her was all that mattered. All that really matters is Anabelle and being present. All the work I’ve done really made that decision pretty easy.
The yoga community is what’s held us up. When everything happened with Anabelle, it was the yoga community- especially where we teach in Norwood who put together meals for us, students were bringing in my five-month year old baby in the morning so I could see her, one of my students was mowing our lawn, another person was cleaning our house…
I was surprised when people started to hold fundraisers for us. It’s really nice. It’s really hard though too, because there’s all these people raising money and you don’t really know them. It does feel wonderful, but at the same time, it’s a reminder of how serious things are…so that’s the tough thing about it- is people know it’s serious. And really, if we didn’t live where we live and we didn’t have the support, we’d probably be homeless because the medical expenses are pretty extreme.
I’ve been teaching for almost ten years. Now I teach primarily south of Boston and my husband used to teach at South Boston Yoga – we know David Vendetti and, Jacqui Bonwell, which is my husband’s sister who are teaching tonight at South Boston Yoga for a fundraiser class for Anabelle. I don’t think we will attend class- it will be too emotional. But, we will be there after to bring Anabelle and to thank everyone.
Over the years, my husband and I feel that we’ve given a lot in terms of teaching and being there for people in our community, but you never expect to be on the receiving end of something like this. All these people and all the Facebook messages, all the texts, it’s definitely been something that’s helped us get through especially when things were really feeling pretty depressing and upsetting. Just having all these constant visitors and gifts sent to the hospital room, it was like a bright spot in the day.
A lot of people in the community know Anabelle – she’s been at Yoga Reaches Out and before she was even born she was loved by so many people. It really has been amazing how many people know her and love her. My husband and I have an immense amount of gratitude for everyone who has been there for us. After everything settles, we’ll probably have enough thank-you’s to write for the rest of our life, and we’ll be in the service of others for the rest of our lives.
It’s definitely been the hardest thing either one of us have ever been through. To be honest with you, every other day I feel depressed because it’s hard to watch your child go through this. At the same time, as hard as it’s been I feel very deeply in love with my family, with my community, with my life.” – Jaime MacDonald
Every year Yoga Reaches Out harnesses the incredible power of the yoga community to enhance the lives of patients and families. Join more than 1,000 yogis in raising funds for Boston Children’s Hospital. Together, we’ll gather at Gillette Stadium Empower Field House on Sunday, April 28 for a day filled with inspiring presenters, friends and the power of seva. To learn more visit www.yogareachesout.org or email firstname.lastname@example.org .
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