Haley Scott DeMaria

Archive for March, 2016


This past weekend was one of my favorite Easter holidays.

There are a number of reasons to love Easter: it’s the beginning of springtime, it’s the end of Lent, it’s a holiday to celebrate with family and friends. My husband would tell you that Easter means Cadbury Mini-Eggs, but I prefer jelly beans, both of which you can now find all year, which makes them less special (in my book).

But this Easter was different because my oldest son was confirmed at Easter Vigil mass. I have attended Easter Vigil mass before; it’s beautiful in the dark, with candles lit as the church lights up as Christ is Risen. It’s beautiful and powerful, and the rest of it is just long.

Unless, of course, you are being confirmed.

I was taken aback at how moving the mass was, knowing that my son was officially choosing to join the church. I was so proud of him, accompanied by his sponsor: a midshipman we had sponsored years ago when he was a student at the Naval Academy. How special is that?!

I was also reminded of my own confirmation at Easter Vigil 18 years ago, looking at the crowd from the alter and seeing my grandfather beaming from the pew. I’ll never forget his smile and how proud he was; I now know that pride, because I felt it too.

And then it hit me: my grandfather’s confirmation name was Anthony. My son, unknowingly, also chose Anthony as his confirmation name. I think that was Pop’s way of saying hello, of being a part of my son’s confirmation.

As we continue to embark on this journey of parenthood, moments like this continue to build the foundation of our family, providing roots and strength to our children, through their faith and through our family holidays.

Happy Easter! Happy Passover! Happy Spring!

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    Last month I saw a press release that the head swimming coach at Johns Hopkins University, George Kennedy, was retiring. I first met Coach Kennedy six years ago at the College Swimming Coaches Association of America (CSCAA) Convention, where he had invited me to be CSCAA’s keynote speaker. Coach Kennedy was hired at JHU to replace my coach, Tim Welsh, who left JHU to take the head coaching job at Notre Dame. Collegiate swimming is a small world.

    As I often do, I pulled out my stationary to send Coach Kennedy a congratulations note. He has served his athletes for over 30 years; he has made the sport better; he is one of the old-school good guys who believes the sport is so much more than competition and championships. And he’s won championships: many of them at Johns Hopkins. But his greatest legacy will be the lives he has changed.

    Early last week, I was delighted to receive a note back from Coach Kennedy. It was certainly not expected, but not surprising that he would acknowledge my letter to him. That’s the kind of guy he is. In addition, and on a whim, he asked if I was free on March 12 to speak to his swimmers, the ones staying on campus for spring break to train for NCAAs. Yes, of course! This past weekend happened to be one of those rare weekends between sports seasons; so while we had baseball practice at 7am on Saturday morning, I could easily be at JHU by 10am.

    It was a great talk. Some talks are better than others; and this audience was awesome. Not only were the men’s and women’s swim teams there, but the Hopkins women’s lacrosse team as well. I had a blast. And I hope they did too.

    I love it when life works out this way. When, on a whim, we trust our instincts and the result is the opportunity to touch lives. Thank you, Coach Kennedy!

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    Yesterday I attended WellSpan’s Game Changer sports medicine conference in York, PA. I was invited to give the opening keynote, as the topic for the afternoon was athletes with spinal injuries.

    What an afternoon!

    My talk was a slightly condensed version of what I often present, as I was allotted 30 minutes (and even then, I went over: sorry, Dr. Lavallee!) But wow, there was so much to share! And lots I wish I had said…

    The presentation following mine, “Advances in Spine Trauma,” was by a neurosurgeon, Dr. Grant Sorkin, who walked us through a case study of a patient with a spinal injury. The photos were fascinating – for two reasons:
    1) It was interesting to see the updates in technology: the rods I had in my back were long (about 12-13 inches) and connected with screws at the top and at the bottom. Today’s technology includes screws into each vertebrate.
    2) It was amazing to see the actual INSIDE of a spine during surgery. (Clearly we were in a room filled with medical professionals; I’m not sure regular folk would have had the stomach to see these slides.)

    Two therapists (a physical therapist, David Weaver, and an occupational therapist, Katherine Burkett) spoke next. Their presentation was like reliving my stay at Memorial Hospital of South Bend: from the team of medical professionals who care for a patient, to the progression of therapies from surgery through post-discharge. I sat listening to them with a smile on my face, remembering the challenges, the milestones, the details I often forget about my hospital stay. It was amazing to hear how much has changed (voice technology!) and how much has stayed the same (gotta master those wheelchair transfers!)

    The game changer for me, however, was a topic that Dr. Sorkin, David and Katherine each discussed; a topic that I usually do not. And all three of them mentioned, “No one really talks about this, but it affects spinal injury patients daily.” Bowel and bladder function. Most spinal injury patients (or those with an SCI: spinal cord injury) deal with bowel and bladder function (or lack of function) at some point during their recovery. And some deal with it for the rest of their lives.

    The topic can make people uncomfortable, which is why I often don’t mention it unless someone specifically asks me about it. But it is what it is, and it is a very, very real part of living with an SCI. And it should be recognized as such. Dr. Sorkin, Katherine and David did. I did not. I wish I had.

    Because, just because I have recovered – and recovered remarkably well – I still live with an SCI. It doesn’t go away. It’s a journey that never ends.


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