The best thing I have done for my overall health is to learn how to manage my stress. In fact, I searched for a medical practitioner who didn’t tell me “not to stress” but to learn techniques to help manage it instead. (My search took me more years and money than what should have been necessary! Seriously, if one more doctor told me to “eliminate stress” in my life, I was going to throat punch them.) Annnyyywaaaay… One technique I have learned is visualization exercises. One of my favorites is when I feel overwhelmed by my emotions, I pack them in boxes. No, I don’t “unpack” my em ..read more

My youngest experienced our school district’s wonderful tradition for graduating seniors yesterday. The graduating seniors return to their elementary schools and do a “Senior Walk.” The littles love to see them, and the teachers do as well.  Graduation week is always emotional; it always is. It was touching when my oldest graduated, so I was prepared.  Or so I thought.   I grew up there. I went to elementary school there and practically lived there since my mom taught there for a couple of decades. I knew every nook and cranny of that building since we were forced (along ..read more

T.J. had his semiannual Duchenne Muscular Dystrophy clinic visit on Monday. His heart and lung functions are holding steady. He is doing great in other areas as well. He is learning to navigate his own complex medical needs.  One of the goals in 2023 is that TJ learns tests that are run on him and why. Before starting the ECHO, we discussed details like how often he gets this one done and why. We were talking about what the test results indicate about his heart. In the 11+ years we’ve been doing this, between doctors’ appointments and clinical trials, I’ve lost count of how many t ..read more

Today marks the 11th anniversary of our son’s diagnosis. I thought it would softly & quietly drift by like it has the past few years, but it hasn’t. I have felt this day creeping up on me slowly & calculatingly. Honestly, it’s been confusing because the past few years have been anticlimactic. I thought this day was finally getting more manageable or softened somehow. Yet, over the past several days, this day has stood out like an annoying neon sign, blinding me to the softer light. Over the past decade, I have learned not to ignore the signs; if I do, the emotions will eventual ..read more

Ten years ago today changed our lives forever. I’d love to say that the pain & confusion seem like a distant & fuzzy memory, but that’s not the case. February 8th is a day that no longer causes me intense pain; instead, I choose to feel, reflect, and release. Ten years later, I can honestly look back & see profound lessons I am grateful to have received as a parent of a medically complex child. Here are 10 for 10. 1. “No.” is a complete sentence. I have learned to prioritize my time and say “no” when needed, even if it is to rest. 2. The professionals aren’t always the expe ..read more

Fear is not a sign of weakness. It simply means you’re human, and lousy stuff is goin’ down in your life. It’s okay to fear. To feel fear is normal and, dare I say, it’s healthy at times. It happens to everyone. Every. Single. Person. How you deal with that fear is critical. Feeling fear isn’t the problem – it’s camping out there that is.  We often think if we get to the next level – be that a job, marriage, divorce, remission, children, retirement, or even a cure – we’ll be fine. We will have made it. We figure we’re on the downhill stretch, right? I hope that is tr ..read more

There are days that just stink. Period. Some days there are a ton of reasons why your day skids out of control; while other days there is simply no explanation. I know there are times when nothing, short of going to bed and starting over, will make it better. Others can try to jump in and help, but the only thing other people can really do is to just be there. I recently realized that I don’t do that often enough for TJ – just be there. He needs so much from me every day. He struggles physically doing tasks that come naturally for most of us without even thinking. There are certain areas of ..read more

Yesterday was brutal. On the heels of the beautiful moment holding hands with my son at the hospital (click here or here for Wednesday’s social media post), came yesterday with gut-wrenching ‘I hate you’s and ‘Leave me alone’s being thrown around. It came with tears (from both sides). It came with yelling (from both sides). It came with me retreating to my office with my head on my desk crying.  And you know what? Both of those moments – the sweet and the volatile – are part of the gig we have. It’s beautiful and it sucks. It’s life-giving and it’s emotionally draining.  Raising a ..read more

When I was a little girl, my dad’s favorite evening pastime was to scare my sister and me. My sister loved it but oh how I hated it. My sister and I developed a sixth sense about it though. We could almost feel when he was hiding. My sister would slowly creep to the next doorway while giggling or being excitedly quiet the way only children can be. Sometimes if the game had gone on too long, she would jump out around each corner, while I would get so frozen in fear I would be plastered against a wall while my head frantically pivoted from side to side. She would be stifling her laughter while ..read more

My youngest experienced our school district’s wonderful tradition for graduating seniors yesterday. The graduating seniors return to their elementary schools and do a “Senior Walk.” The littles love to see them, and the teachers do as well.  Graduation week is always emotional; it always is. It was touching when my oldest graduated, so I was prepared.  Or so I thought.   I grew up there. I went to elementary school there and practically lived there since my mom taught there for a couple of decades. I knew every nook and cranny of that building since we were forced (along ..read more