Farewell Dad

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February 10, 1939 - August 31, 2013

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Acceptance Doesn't Happen Once

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Reflections from a retreat talk on being called, chosen, and sent as daughters of the Holy Spirit. I used to think acceptance was something that happened once. That eventually you reached a place where you made peace with the hard thing and then moved forward. I’m a wife and a mom of six. And five of my children have some level of disability, autism or Down syndrome. One of my daughters has both. My life has been full and beautiful, but also very different than what I imagined. And it didn’t all happen at once. In 2003, I was already well into navigating life with my twin boys’ autism diagnosis, while also raising their older brother. We were just figuring things out as we went and letting go of what I thought life would look like. I really thought I had found my footing and was handling things pretty well. But I’ve come to see that acceptance doesn’t happen once. It comes in layers.  And over the years, there have been other layers too: Infertility… adoption… other unexpected hear...
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The Life I Thought I'd Have

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I think most of us carry around a picture of what our lives will look like. We don't always realize we're carrying it, but it's there, tucked quietly in our hearts, shaped by childhood, family, and unspoken dreams. When I was twelve, my parents had a surprise baby, a new sister. There were already four of us, born within five years. My oldest brother was fifteen, my second brother was thirteen and a half, and my younger sister was ten.  I got a front-row seat to motherhood watching my mom love and care for my new baby sister.  I was fascinated by all of it. The growing belly, giving birth, breastfeeding, the endless laundry, the meals cooked while juggling pre-teens and teenagers, and still meeting my father's needs. She managed it in ways that felt both familiar and entirely new to me. Almost three years later, my parents added one more to our family: my youngest brother. My mom was forty-two and my dad was forty-three. To me, my little sister and brother...
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Love In The Repetition

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My husband's family says "I love you" all the time. My family didn't. That's not because my parents didn't love me. I never doubted that they did. They just expressed it differently.  My mom's love was impossible to miss. She always seemed to know what to say when I was anxious, uncertain, or overwhelmed by a situation. I think her advice mattered so much because it came from someone who consistently lived what she taught. She was the one I went to with worries, questions, and the everyday things that felt big when I was young. I felt safe just being near her and was deeply attached to her. My mom may have rarely said "I love you," but I heard it every day. Throughout my life, my mom always dropped everything when I needed her most. At my children's births, she was right there beside me. She helped Matt and me navigate C-sections, the twins’ NICU stay, and Lily’s Down syndrome diagnosis. She grieved with me during difficult times, but never l...
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Love You, Mom

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When I was a little girl, I was never far from my mom’s side. I was the epitome of a mama’s girl particularly with being an extremely shy and introverted child. For those that know her, my mom didn’t have a shy or introverted bone in her body.  New experiences or changes in my life always brought me great anxiety. My mom had a way about her though, that made those anxiety provoking moments seem less terrifying. She’d make them appear less daunting by giving me options that I could wrap my head around. She’d say: “T ry it once”, “Give it a week” or even said once, “Go one year and then we’ll talk again” (this was when I wasn’t sure I wanted to go off to college). I remember her taking my complete stranger of a roommate, when I was a freshman at Purdue, to lunch and shopping for matching bedding to help ease my roommate and I into a very new and strange living situation.  She was my rock growing up.  Becoming a mom myself in 1994, I actually went and lived with my parents f...
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The Spectrum Of Down Syndrome

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Every single day I hear references of someone being on the spectrum.  Obviously being on the spectrum refers to being on the autism spectrum, but for a while now I've come to believe it might behoove the Down syndrome world to have a reclassification of Down syndrome into a Down syndrome spectrum.   Per Wikipedia:  A spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum. There are so many variants of how Down syndrome manifests itself in a person.  Cognitive and physical abilities can be affected in differing degrees based on many factors.  One significant factor is the many associated health conditions that individuals with Down syndrome have an increased risk of being born with or developing at some point in their lives.  Some will have significant health concerns requiring surgery and/or other treatments, while others may only have minor issues common to Down syndrome needing...
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Social Life...What Social Life?

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It can be a lonely world when you have multiple children with special needs especially when you add a bit of shyness into the mix (okay, a lot of shyness).  A few years back, I started to realize the majority of my daily social interactions were with my kid's teachers, therapists or doctors.  A busy schedule of therapies, developmental schools and doctor appointments make up our weekdays, while on weekends we may have a few activities, but for the most part we often stay home.  Waiting rooms can be a social outlet for me to meet people, but rarely do any long term friendships arise and usually I run (blissfully kid free) errands while the kid(s) are in therapy or school because taking my kids shopping gives me hives.  I'm kinda kidding. By the time I get home at the end of my day, I'm ready to  collapse  stay at home. Another unusual factor is my husband, Matt, is home most days (since he's a musician he usually performs at night) and that contr...
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The "short bus"

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There are a lot of people out there trying to stop the use of the "R" word.  Campaigns and blog posts are trying to make the general population understand how hurtful the word is to the special needs community. Before Lily, who has Down syndrome and autism, I myself used that word without thought. I'd never thought of my 18 year old twins, Reagan and Kaelan, as "mentally retarded". Even when they were tested when they were 3 by the school system and the results put them in the mentally retarded range with an autism diagnosis, I just blew it off as crazy talk because they were both brilliant in so many ways. Reagan has always been referred to as a little Einstein or the next Bill Gates. Lily was the eye opener for me. I couldn't bear thinking of her as mentally retarded or the more acceptable label cognitively delayed. The reality was I couldn't envision what mentally retarded meant for Lily. I just knew it sounded scary and overwhelming. ...
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Church. Not Sure Where We Fit In...

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I am Catholic. I was raised Catholic by my mom and she took us to church every Sunday. I also went to Sunday School for years (known as CCD back then, but now called Religious Ed or RE). My dad was supposedly raised Methodist, but as far as I know never went to a Methodist church, except for maybe weddings and funerals. He grudgingly attended Catholic events like baptisms, first communions, weddings and funerals, but preferred to stay as far away from church as possible. Every Sunday, my mom would drag us out of bed, make sure we were dressed and fed before racing (literally) to church. We were usually late and of course everyone noticed. It's kinda hard to be inconspicuous with at first four and then eventually six kids entering a quiet church. I rebelled a bit in high school and refused to go to church even with all the Catholic and mom guilt laid on me. I just didn't care.   My first year at IU (Indiana University), I felt an urge to go back to church and my dorm just ha...
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