August 21, 2012 mcfadyena

One Year Ago

One year ago, our entire lives changed (again). August 19, 2011 will forever be etched in my mind as the most intense and anxious day of my life. Hands down. I’ll never forget the shaking, fear, and holding back of vomit and tears while I waited four hours in the waiting room at UNC hospital- my heart jumping every time the waiting room door opened- to find out Trey’s fate. It is the day Trey qualified for the IT trial. Today Trey received his 11th dose of intrathecal enzyme. This past year has been amazing. I have spent more time with MPS friends than ever before, in New Hampshire, Maine, Massachusetts, Illinois, and of course, North Carolina. It has also been the most relieving year of my life. I am reminded of this constantly. Just like before the trial when I was reminded of the progressive nature of Trey’s disease with every ‘accident’, aggressive act, or forgotten word, now, with every full sentence spoken, every typed word, every swimming skill gained, every hit or grab controlled, every successful trip to the toilet made, I am reminded of how very fortunate we are.
Last night while talking to Avery and Sadie on Skype, Trey got the big, quivering bottom lip and began to cry: ‘Why do I have to come here?’ he asked. ‘I want to go home.’ It was heartwrenching and so hard to hear, but this wasn’t the first protest I’d heard. The whole reason I got a Skype account for Avery and Sadie a few days ago is because the day before I left for this trip, Avery said, also through tears: ‘When you go away so much, it’s like I don’t have a mom.’ It has been an emotional year for all of us (extended family and friends included), in so many ways and experienced differently by each of us. But what makes it worth it, is that a year ago, not only would Trey not have had the language to ask this question, but he didn’t have the comprehension to grasp ‘why.’
It’s been an emotional anniversary as well because this past weekend I met for the first time a dear friend whose son was excluded from the IT trial and whose body is rejecting IV Elaprase. She is currently fighting tooth and nail for her son’s life, and one year ago, I was fighting just as hard for Trey. Last week I was at my mom’s cabin at Cultus Lake, driving to pick up our milk from the farm, and as clear as day, I remembered doing the same trip one year prior- only the trip was completely different. This year I felt human. I could breathe, I was relaxed, I was at peace. Last year I was waiting for life or death. I worked to enjoy the moments- kittens entering our lives, snuggles while reading stories, cheering as the kids jumped off the dock into the lake- but I was distracted, and had to work to clear my mind, to focus, to enjoy life. One of the ways I released everything I was holding onto, was by listening to Will Blunderfield’s album, Hallelujah, so I want to share it (and him) with you. Some excerpts from his CD are below (to hear his music-his voice is beautiful- go to:
‘This, being human, is a guest house. Every morning, a new arrival. A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor. Welcome and entertain them all, even if they are a crowd of sorrows who violently sweep your house empty of its furniture. Still, treat each guest honourably, he may be clearing you out for some new delight. The dark thought, the shame, the malice, meet them at the door laughing and invite them in. Be grateful for whatever comes because each has been sent as a guide from beyond.”
‘I just want to take the time to honour you, cause you breath life in me, you give me strength to pull through. Now I’m glad I found you, you opened up my eyes. To the strength I hold inside…”
‘I paddled so hard against the current, I did not know, that all I needed, was to let the oars go, and just flow.”
Above is a picture of Jamie, Melissa, Sarah and I (all MPS II moms) at Cafe Ba Ba Reeba in Chicago this past Saturday. In Melissa’s words: ‘It was absolutely such a wonderfully strange thing today to walk around Chicago shopping and eating with Jamie Lynn-Brooks FowlerDeb Cehak Purcell, and Sarah Nietering Mitchell, as if we didn’t have a care in the world. All brought together by MPS, but so nice to just enjoy each other’s company, intertwining conversations about doctors, tests, surgeries, trials, and drugs, with laughter about purses, rings, sunglasses, chocolate, tapas, and sangrias. Life is good, ladies, even when it’s bad, sad, and crazy. Thank you for living it with me.’ Ditto, Melissa. And to Jamie, my heart is with you all the way. I’ll be back in 3 monthes to celebrate.


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