I am beyond thrilled to say “Goodbye and Good Riddance!” to April 2013. While the month started off joyfully as we celebrated my daughter’s entrance in to the teenage years. On April 3rd, it took a dark turn when my mother passed away. Her death was sudden, but not entirely unexpected. She had not been in good health for a long time. Then came the Boston Marathon bombings and subsequent pursuit of the suspects. The service was being held in West Roxbury, a part of Boston. The lockdown came dangerously close to delaying my mother’s memorial.  Plus, I lived in and around Boston for seventeen years and still have very strong ties to the city. To say the least I was a little rattled.  And, in a case of monumentally bad timing, my husband had an unusually high, (for him), number of travel days this month. So yeah, April sucked. I’m looking forward to better days.

This are the words I shared at my mom’s memorial service.

On behalf of My Aunt Joanne and our families, thank you all for coming to remember my mom. This morning I will share some memories and music to pay tribute to my mom, we’ll welcome Fr. Richard Bradford from St. Theresa’s to share some words of faith, then I will invite anyone who wants to share a story or remembrance of my mother, to do so.

While meandering through this process, I learned a few things. Let me start by sharing them. First, there are over 1500 versions of Amazing Grace on iTunes. Second, the Philadelphia Police and Fire Pipes and Drums Corps have a CD entitled Guns and Hoses.

It’s no secret that towards the end of her life, my mother had a lot of challenges and some of you only ever knew the woman who chose to isolate herself and battled a host of demons, but there was so much more to my mother than that woman.

My mother was an artist by vocation and a teacher by training. She had incredible artistic talent that informed everything she did. She was known far and wide as the woman with the beautiful hand writing.

She may have lived outside of Philadelphia for 20 some odd years, but she was a New Englander through and through.  Fried clams and lobster were her favorites. She grew up here in West Roxbury surrounded by friends and family and recounted fondly her time at Notre Dame Academy and Boston College.  She would rather have gone to art school, but pragmatic Irish parents who had lived through the Great Depression convinced her to pursue a degree in elementary education at BC. Despite not being her first choice of career paths, she enjoyed teaching and she was good at it.

She met my dad in New York and they married just down the street at St. Theresa’s in what looks to be a beautiful wedding Alas, their marriage was not meant to last.*

When the doctor diagnosed me with albinism. He told my mom I’d be blind and possibly deaf and mentally impaired.  He said not to expect a lot from me, that I probably wouldn’t graduate from high school.

Thankfully, she didn’t believe him. She ignored the doctors directive and treated me like a “normal” child only with lots of hats and longer sleeves. She never said “You can’t do that.” Well not until I got to my teens and we were talking about how I couldn’t stay out until all hours of the night.  Instead, she recognized that she didn’t understand how I saw, so she encouraged me to find my own limits, to find my strengths and never use my albinism as a crutch. She educated herself and by her own admission made it up as she went along.   She taught me the meaning of the word perseverance. She advocated for me fearlessly and passed those skills on to me.  She was always my biggest supporter. My growing to be a successful independent adult was her goal in life.

Along the way she brought Dennis into our lives. A man she loved deeply and who stepped up to be a father figure for me.

She let me know know that emotions are something that everyone feels and it’s ok to be angry, but what matters is what you do with that anger.

She taught me that EVERYONE deserved a smile and respect and that making friends with the secretaries and the custodians was the key to success in this world.

When I was growing up we had awesome parties at our house. There was music and laughter and lots of food. She was the consummate hostess and fussed about every detail, insisting the drapes NEEDED to be vacuumed and that the yes crystal bowl was necessary for the shrimp shells. Her perfectionism was a double-edged sword throughout her life.

She taught me how to drink responsibly. She even taught me how to grieve.

She’s been described by many as elegant.  She cared about her appearance looked like she stepped out of a fashion magazine, even in the lean times.

I still remember the look of horror on her face when I announced at 11, that like the Neil Diamond song, I too would be “forever in Blue jeans”. She was cursed with a daughter who’s idea of a designer label is L.L. Bean.

I have lots of fun memories including the surprise party she threw for my sweet 16. Or the time she inadvertently baked her purse while making her world famous brownies.

I always knew she had my back. When my seventh grade math teacher insisted that despite what it said in my IEP, he didn’t NEED to enlarge my test because he saw me reading paperback books in the cafeteria. I knew this was a battle best handled by mama bear. The next day I had an apology and the opportunity to retake the test in large print.

When I was in 8th grade, I had to write a report for my health class. Naturally, I chose albinism as my topic. While helping me hunt for sources, written in English as opposed to medicalese, she found a woman with albinism who worked in Philadelphia.  A meeting was arranged. It was the first time I met someone who looked like me. The meeting was life changing for both of my mother and I. Not long after that, my mom and Dennis helped to plan a one day conference for people with albinism. She even managed to get the preeminent authority on albinism Dr. Carl  Witkop to come and speak (on his own dime). The night before the conference, at dinner, Dr. Witkop strongly encouraged us to form a national non-profit to provide information and support for people with albinism. I thought this was a wonderful idea. Eventually, the other 5 adults at the table agreed and NOAH, the National Organization for Albinism and Hypopigmentation was born. She stayed up all night creating a membership form. Going forward, she and Dennis wrote the newsletters and she spent hours on the phone counseling parents who had just received the diagnosis.  NOAH is almost 31 years old this year with a solid membership base and strong web presence. There is enough work to support a part-time executive director and full time administrative coordinator.  Accurate information about albinism is literally available in the blink of an eye. I know she still cared about NOAH and albinism advocacy because when I cleaned out her apartment I found a stack of NOAH’s Albinism info business cards and Albinism Insight, the quarterly magazine.

When I was in high school I had a very full extra curricular schedule to put it mildly.  Dinner was a necessity, but time was a luxury, so occasionally, we’d have 7-11 picnics: 2 hot dogs, a bag of chips and a soda. Healthy? No, but it filled the hole and what mattered was that we ate together.

She was my own personal clipping service sending me articles and tell me of TV shows she thought I’d be interested in. I found a folder of recent clips her apartment.

Once she sent me back to college with a banana bread she made and froze. One morning a day or two after my return my roommate and I woke up to an AWFUL oder. In our sleep addled stupor, we stumbled around our small dorm room like pinballs trying to find the source of the stench.  My roommate eventually held up the tin foil wrapped loaf.  When we unwrapped it, we discovered meatloaf instead of banana bread. From then on, she was known as Meatloaf Mom.

She devoted her life to raising me to be an independent, self sufficient adult. When that happened, she had little to fall back on. As I set about writing this, there are large gaps, time when I have no stories. The distance was too great. It makes me sad but I can’t say I have regrets about my own choices.

I know without a doubt, that she loved me and was proud of me. She was thrilled to be a grandmother and deeply enamored of my children.

Her own choices greatly limited her ability to participate fully in life but I don’t want to dwell on that here.

Instead, I want to ask you all to learn from her mistakes. Pride and independence will take you far in this world, but sometimes we all need a little help and it is ok to ask. That’s what friends and family are for. Clean underwear is important, but not having any at the ready should never be a reason to avoid going to the hospital. I also have it on good authority, that ER docs are not checking out whether your hair is done or you are wearing make up when they are evaluating you for a gall bladder attack, just sayin’.

Despite her quirks, she was my mother and she literally gave her all to insure that I could live a good life. Complaining about the outcome feels a tad like biting the hand that fed me.  I only wish she could have applied the same caring and kindness to herself that she gave so freely to others.

Rest in peace Muzzie.

We Only Live Once in a While (I had a better version of this song, but it’s not available online).

When I Grow to Old to Dream – Linda Ronstadt

*My parents went their very separate ways, but recently they had kept tabs on each other through me. My father sent a lovely bouquet of flowers for my mother’s memorial service.