Today was Maggy’s birthday. We got dressed in our princess gowns and tiara’s, ate some cupcakes, did some twirls and we said goodbye. It was quiet, beautiful and just what we needed, just like her. Because of covid, we didn’t get to have a regular funeral. This whole grieving process has been so strange and unfair. We needed to have some type of sacrement though. She deserved ceremony.
Today, after fighting and winning to be recognized as Maggy’s family and recieve her ashes, we let them go be with Marmee where they belonged. We miss her so much.
I read this out beside the river today and it felt right. We’ve been robbed of so much in this process that doing something normal like a eulogy felt really honoring. We plan to have a Celebration FUN-eral for her friends when we can… complete with live princesses of course! Stay tuned. But for now here is what I wrote. Vanessa made a slideshow too. I attched the link at the bottom.
Nothing about this is fair, right or OK. We shouldn’t have lost Maggy like this: unable to properly be with her, unable to be with each other and unable to say goodbye. As I said in the last eulogy I wrote “Death is never pretty. It’s not part of any plan. It’s a thief (…) that separates us from each other.” Covid seems to add an extra element to that experience. I am here again, far too soon, trying to find the words to adequately eulogize who our sister, Maggy Arnold, was. I want the world to understand that she was completely human, completely beautiful and completely valuable with her Down Syndrome, not despite it. “What makes us human is not our mind but our heart, not our ability to think but our ability to love.” (Henri Nouwen)
We don’t know a lot about Maggy’s life before she came to live with us. Her biological mom had passed away months before and her father some time before that. We know that her first 30 years of life were filled with some level of dysfunction in the home. She only ever described her parents as “fight” with her fists up. We know that some of the behaviours she came to us with highlighted how alone she had felt, but also how resilient she was in dealing with a world that didn’t see her potential and value. We also know that her mother loved her and did the best she knew how. For that we are so thankful. When Maggy was born, in 1968, doctors were still urging parents to send their children with developmental disabilities away to “schools” and institutes like Woodlands. Unspeakable horrors happened in these places. Maggy’s mother kept her home and safe and eventually helped provide Maggy with the opportunity to go to real school! Though it was still very segregated back then this was not something everyone like Maggy got to do back then.
When we were all teenagers, our mom made the decision to become a HomeShare provider, (this is similar to foster care but for adults with special needs). Maggy moved in with us in September 1999, shortly after her biological mother had passed. I remember being eager to get to know this adorably short and round little lady but I didn’t expect to fall so completely in love. We all fit together right away. She was meant to be in our family. As Maggy felt more safe, stable and loved, a lot of her earlier behaviours vanished. With our support, she melted off nearly 200lbs earning herself the slightly inappropriate nickname “Bum”. Because of all the weight she lost she flaunted a signature bum jiggle rivaled only by JLo.
We made her entrance into our family officially known when one day, early on. Maggy had come home from her day program crying. We found out it was because the opposing baseball team was making fun of her for being an orphan with no family. The next game my siblings and I showed up cheering as loud and as obnoxiously as we could, screaming for our “sister” and announcing to everyone that she was not an orphan anymore. From then on everyone knew we were her family.
Maggy was an integral part of the house growing up. She was the “measuring stick” for any boyfriends or even friends we brought home. If they weren’t good with her, they were gone quickly. She unified our family through those tumultuous teen years. No matter how mad we were at each other, we’d always go and kiss her goodnight. We always came back together and worked out our problems because she brought out the calm and unity in us.
She was like any sister helping with the chores around the house. We’d have dance parties with her “Bye Bye Boys” (N’sync) and sing at the top of our lungs. If we got to loud she’d hug us to quiet us down. . She didn’t sing often but when she did it was an amazing chorus of monotone joy that commanded attention! Folding laundry was her main job growing up. She would even come over well after I had kids and fold my laundry for me. As a tired mom this was such a help. We loved watching movies together and cuddling, she was the best cuddler, truly the best, but she liked going out to the theater more. Going out meant she would likely get a treat or better yet she’d maybe get to go to a restaurant which was what she really wanted.
Maggy didn’t have many words but she could communicate VERY well. It was amazing to see her still developing ways to express herself even up to her last few months. She continued to break through the limiting expectations people put on her with her new words and epic car karaoke. She hated being dirty and despised being outside unless there was a greater purpose to being there. She would get incredibly annoyed when she didn’t get her way, but never stayed mad longer than a few minutes though. She wanted everyone to be happy all the time and was eager to give a “nya hug” every chance she could. She poured out true and real unconditional love on everyone she met.
Maggy was a “8” year old Princess and loved all things that made that fact known to the world. She loved all things “girly”. From “Ho Ho” she would always ask for a doll, with a big blue dress, curls and a bow. I think Christmas, birthdays and all things Disney stayed extra important in our house because we got to experience them through Maggy’s eyes. Seeing her meet a REAL princess in Disneyland is one of my most cherished memories. It was magic. She always wanted to go out shopping to buy a new shirt, a bridal magazine, or underwear. She LOVED getting new panties! It was weird. Her favourite thing in the whole world was a party though. She thought all parties, or even small dinners, were a celebration of her and would not be convinced otherwise. If there was a dance floor, Maggy was definitely on it, two-stepping the night away and beaming with happiness.
Henri Nouwen wrote “When we honestly ask ourselves which people in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” Maggy was this person. Her quiet spirit always sitting with us in our joy and grief. Her fierce and steady love was alway present. Her unfailing trust in the world and the people around her was beautiful. People saw all this as a trait of her Down Syndrome but I saw it all as a gift. It was her superpower. It was her offering to the world for those who would listen. Because of her wholehearted trust and love we wanted to be worthy of it. She made us all better people and that has impacted every area of our lives from helping to guide our career paths towards people with special needs to how I chose to grow my family by inspiring Jon and I to adopt her niece, Sofie, with Down Syndrome too.
We are so sad and feeling so lost. She’s left an unimaginable emptiness. People often say that she was lucky to have us but it’s the opposite. We were the lucky ones. She was all of ours favourite sister. She united our family and showed us what true, unconditional love looks and feels like. We are so thankful that we got to be loved by her. Being her sister was never a hardship or difficulty. NEVER. It was one of the most impactful and beautiful honours of our lives.
There is so much more to say. So many stories to recount, memories to smile at and life remember. I will leave it with this for now though. Maggy lived such a full life filled with joy, sorrow, love, exceptionality and value. We know she is up in heaven now enjoying the biggest princess party in the most elaborate dress. We’re sure she is dancing up a storm, as only she can in all her “Dance Syndrome” perfection, with Marmee beaming beside her, hand in hand.
Here is the video…