Goodbye Maggy

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…

Scary Strong

After Marmee died, I expected to fall. I was confident that I would eventually be okay but that would come after some time in a mental health unit. In a very strange way I almost wished for the fall. I wished I could disassociate enough to not be present in my pain. When I didn’t have a mental health break down I began trying to understand why not. What makes some people break and others not? Was I ignoring my grief? Was I merely doing life but not really living it? Don’t get me wrong, there have been days and weeks where I barely functioned. Days where I have been just present enough to order take out for my kids and give them the passwords to their screens. But I was still functioning and wondered why my resiliency was winning?

I don’t think it was a surprise to a lot of people that I was surviving better than I thought I would. I’ve always been described as Strong, Resilient and Powerful, even as a young child. Alone those words sound like really positive attributes, and they are.. but they have often held double meanings.

Strong has also meant Hard

Resilient has also meant Volatile

Powerful has also meant Loud and Bossy

Over the years I’ve felt like I have needed to appologize for my hardness, but stay strong. Like I should be ashamed for how loud or bossy I come across, but still shine my resiliencey and be powerful. I’ve been at a loss for how to do that and wondered if I’ve even wanted to do that. These parts of me, the good and the messy, have served me well. They have guided me through unimaginably difficult times. They have protected me from hurt and helped me, quite literally, survive at times. That strength and resiliency kept myself, and those I loved, safe. Making quick decisions based on my emotions and what I though was my “gut” has served me well.

Anyone with trauma is going to have a well developed survival instinct and often that is what controls our reactions and decisions. Everone has it but it looks very different for everyone. As I continue to journey and become who I am, I’m realizing that I’ve mistaken that instinct as being my resiliency. Sometimes, my inner self, the part that holds my true resiliency matches up with that survival instinct. But often that instinct is reacting before I’ve had a chance to listen to my deeper emotions or logic that lies below all that protection.

Maybe this is also true for other trauma survivors. Maybe we are told we are so strong but hard or so resilient but volatile, because we actually have an over developed survival instinct working on overdrive. Maybe that resiliency is in all of us and it’s that survival instinct that is the wild card. That instinct is what looks hard, or messy or loud. Maybe we need to try and quiet her down so we can hear our deeper self. Listen to that inner being of who we were, and still are, before all that other stuff happened.

I’m learning to listen to myself more. I’m trying to be curious which part of me is guiding in any given moment and what I’m actually feeling, apart from all those protective impulses. After doing a whole lot of sheer survival in my life, this new way of thinking and processing IS HARD, especially with out my mom, but it’s getting easier.

Finding that place in my body that holds these different parts of me has been helpful and eye opening too. What I had mistakenly taken for my gut actually holds that resilient survival instinct. It’s kept me safe for so many years and sits just above my belly button. Often it bubbles up in to physical anxiety in my chest. I can look deeper though. Below my belly into my actual gut and behind the anxiety, into my heart. That is where my actual strength sits without the hardness, resiliency without volitility, and power without being loud and bossy.

My mom knew it was in me and described me as Scary Strong. She understood the dichotomy of what that meant inside me though. When she said it, she wasn’t trivializing the full scope of the my being. She knew what was deeper. She knew that the scary in me wasn’t the wall that people see but the overwhelming ability to make it through realities that should probably have made me crumble. She recognized the scary survival instinct, that was messy and uncomfortable, protected me time and time again. She had it herself, though it showed up differently. She also recognized the strong in me that was deeper and resilient and so powerful without any double meanings.

I don’t know if any of this makes sense… This is just some of my processing that that I’ve been doing lately. If you understand these ramblings I suspect you can relate and maybe this can help you recognize the Scary Strong in your own self or those around you. Maybe that awareness can create some empathy or curiousity for both of these incredible parts of our beings.

To becoming who were truly are! XO

Without Her

I’ve started this post about nine times in the past year but the words didn’t come. Like this post, I’m disjointed and my brain is jumbled. I don’t work like I used to but I needed to get it out of me so here I go…

We aren’t taught how to grieve. I wish we were. I wish there was a way to do it “properly”, a formula with a begining and an end. Knowing that this sadness had an end would be really nice. The truth is that this grief doesn’t have an end. It is a part of me now. It has overshadowed my whole self and I am changed. I miss Marmee with my everything and the reality of that has left me so desperately SAD. I like the explanation of grief touching every part of your life, every part of your being, and instead of the grief growing smaller with time, our lives grow bigger around it but the same amount of grief remains within us always.  (You can check out a good explanation HERE)

Christmas is coming soon and it has always been a little extra special for my family. I’m not sure what it is exactly but I think it has to do with the chaos that we needed refuge from as kids and the peace that Christmas at home brought. I know that sounds a little cliche and if you know my family at all we aren’t very “peaceful” or quiet when we are together. But, when I talk about the peace at Christmas I mean Peace in the deepest sense of the word. I’m learning that my new reality of peace cohabitates with sadness. Joy comes with pain. I am finding my way with out Marmee and it is THE HARDEST thing I’ve ever had to do, but I am doing it with sadness and contentment.

For many years growing up we had to visit our birth father over Christmas, which was never a good experience. Despite rarely taking his visitation days through out the year, he always ensured he took us over Christmas and threw an ample amount of chaos in to our lives over the holiday. Because of this I learned to really embrace this time we had with our Mom early on. She was our safety and our calm after a stressful, often scary and sickness inducing visit with our father. We knew early on that Christmas wasn’t about the presents, because those often came with strings or where used as weapons from our father. What we wanted most at Christmas was time together at home with our Mom, in safety, peace and love. We cherished that time together and continue to make our Christmas’ center around those values. This year, it all seems to be even more prevalent…

What we want most is time together with our Mom.

I look back at the last year and wonder how we actually did it. How did we get through it all? How am I actually still standing? I didn’t write about it here because I think I was already numb, just surviving. The words couldn’t come. I’m just starting to find them again actually. Three weeks after my Mom died, before we had even come up for air, Jon’s brother Jeremy died. Last Christmas was a blur. I actually don’t remember much of it at all. This year, I can take the time to actually feel all the feelings and not just survive through them. This year feels more like the first Christmas without her.

How has this past year without her been? Devastating and Beautiful at the same time. Before cancer I didn’t know two such opposing realities could exist together. Neither one pulls more than the other but they live and breathe simutaneously.

We’ve had A LOT of hard stuff happen this year. Jon’s brother died 3 weeks after Marmee and our beloved angel dog, Aura, died 5 months later. She had never been healthy but we were not expecting her to go so quickly. Our own bodies kind of gave up and we had numerous visits to different doctors offices and went to the ER countless times for various and seemingly debilitating illness that led to respiratory issues, dehydration, numerous antibiotics and interupted vacations. The biggest and most scary hospital stay was in August when Jon and I were called home from our anniversary weekend in Victoria. Sofie’s underestimated eye infection reached dangerous levels very quickly. She had to be put on 2 heavy duty IV antibitocs every 8 hours to help rid her of the infection and keep it from entering her central nervous system. Apart from that we also recieved an unexpected dual diagnosis for Sofie of ADHD, with a probability of Autism as well. The official autism assessment will come in the new year though. As the new school year started, our bodies healed and we got to experience the wonders of the ADHD medication for Sofie. We have been able to start finding our new normal.

I know Marmee would be amazed of how well we are all doing through it all. She’d be so proud of how my sisters and I have come together, gotten through any grief-induced sister pettiness that pops up and risen to the challenge of taking care of each other and staying unified. My sister Maggy, with Down Syndrome, is living with Vanessa and Josh and THRIVING. Liz started a new job working in the same office as my husband with the government in the community living field. Apparently working with and for the differently abled is a family legacy our Mom has passed down to all three of us girls. I’m sure she is smiling because of it.

Her grandbabies are doing really well too. Her biggest regret with leaving to soon was not getting to see them grow up. That reality is the most painful part for me and creeps up at Christmas concerts, milestone moments and those mundane family giggle nights. I can’t even think about it without crying still.

Livi did an amazing job in her first community theater performance, the one she auditioned for on the day that Marmee died. She’s had a hard first term with friends at school, because her best friend moved and switched schools, but she is finding her groove and excited about her next stage preformance in the spring! Sofie is flourishing in school this year, medicated and with a new teacher and EA. She is finally learning to write her name and preformed a memorized poem in front of an audience! Evelyn is loving Kindergarten, as we all knew she would. She is the fastest girl runner in her class most days and loves playing hard both with her imagination and body!

With the passing of the one year mark and the magic of Christmas here, I really do feel like I can start to breathe again. It’s a heavier breath but it’s there. I’m not sure that’s true for everyone. For me though, I feel like I got through this year, a year where I thought I’d fall apart but I’m still standing and still feeling, so I know I can do the rest of this life thing with out her.  With every groan in my soul, I wish I didn’t have to though.

Everything has changed but life keeps calling. I’m learning to process life in a different way. It’s been really difficult. I’m a verbal processor and I have lost the person I process everything with. The person I would talk to about everything. The person who had the patience and interest to listen to the swirling circles of insignificant and all-encompasing frustrations, joys, questions, fears, judgements and insights that go on in my head every day. We would talk and debrief our day almost every day. Without her, my world doesn’t make sense the way it used to and I’m needing to figure it out with completely different tools than I’m used to using. In case you are wondering where my husband fits in here –  I love my husband completely but he isn’t that person for me and that’s okay. Our brains work too differently, which is one of the things that keeps our relationship so strong. Our personalities compliment eachother but verbal processing is not his strong suit just as internal processing is not mine. He tries hard and I’ve had to learn. I have had to become more introverted and introspective. I am more quiet and keep things to myself more. Maybe that’s not a bad thing but it really sucks being forced in to it.

After Marmee died last year a friend told me she thought Marmee had left me with her peace and I have really felt that. I feel her calm inside me, inexplicably holding me those first few months especially. I still feel it, keeping my anxiety in line and managing it better with this new gift of peace.

Marmee told a different friend of mine that I was “scary strong“, meaning she believed I could get through anything, and I can. Marmee did not see herself as strong though, or resilient, but she was. Brene Brown says “We cannot give our children what we do not have.” My mom gave me so much. She was the strongest, most resilient person I know and she gave that to me, and to my sisters. She taught me how to be a mother and then got to walk alongside me while I became one myself. I can do this all because of her.

My children are a big part of why I survived this year as well. They kept me present as only children can do. I had to allow myself to feel all the sadness and to see the beauty in my life in order to stay present with them. Their joy kept me going and their sorrow gave me perspective. They lost their Marmee too so we helped each other.

Early on, I was driving my girls to school wondering how I was going to do this. Tears and self doubt streamed down my face every car ride at that point. Then Livi’s voice broke through my thoughts. She was singing passionately along to Pink in the back seat…

"This is my rally cry 
I know it's hard,
we have to try
This is a battle I must win
To want my share is not a sin

There's not enough rope to tie me down
There's not enough tape to shut this mouth
The stones you throw can make me bleed
But I won't stop until we're free
Wild hearts can't be broken
No, wild hearts can't be broken"

This became my anthem for this part of the journey. I smiled and started laughing because I knew I would be okay. Grief is always going to call to me, just like Life will always call and I will continue to live as long as I answer both.