It’s been a month since my sister Maureen died at the young age of 41.

She was 18 months younger than me, the seventh in our family of eight children so I can’t remember life without her. Even though we knew her death was coming it still feels like a shock. She had been hospitalized many times in the last few years for kidney infections, and she had been septic eight or nine times. It was clear over the past few years that her body was breaking down, but she so often rebounded and came home. She finally had an infection that antibiotics couldn’t beat, and she passed peacefully in her sleep on November 27.

I thought leading up to it that I knew something about grief. I lost my dad to an asthma attack/heart attack when I was 19 and my brother to MS/heart attack when I was 35. But each grief is as unique as the person you lost. So I have to learn again how to walk this road.

Part of what makes it hard this time around is that Maureen’s story is complex. She was one of five people in the world with a disease where her body didn’t respond to the hormone produced by the pseudohypoparathyroid gland, affecting her whole endocrine system. Doctors at Mass General said she was a subset case of Albright’s Syndrome.

When she was born it manifested in having short fingers and toes because her body had a hard time calcifying bones. Other than some extra hospital stays and doctor appointments, Maureen’s differences were hardly noticed in the bustle of our large family, and in the brightness of her big personality. She was fun and funny, happy, smart, and had a savant-like quality of remembering everything that anyone ever said to her, dates and addresses, and the family tree of everyone we knew. She was a lot like her Down syndrome friends in Special Olympics when it came to having an outgoing personality, sense of humor, and exuberant joy. She in so many ways prepared me to be Ronan’s mom, to be a mother to a child with Down syndrome.

Her differences were noticed by her grade school friends. Her metabolism was slow and she tended to carry extra weight, and other kids would make fun of it. We got her a Garfield t-shirt that said ‘I’m not fat, I’m totally awesome.’  She learned to repeat the line with enormous confidence. It paid off. When we were in high school, I would look across campus and seeing her bounding with joy across the lawn, stopping to talk to everyone, smiling always. “You’re Maureen’s sister?” people would ask me, always chasing the question with, “she is so awesome”. “She really is,” I would always reply.

She loved school, and when she graduated, we were worried. What could she do now that would make her feel valued, give her purpose, let her engage with others? She worked at a day care for a while until her ability to stand all day grew weaker, and then she attended a day program with other adults with special needs, who became her best friends, her other family.

When I saw how wonderful my husband was with Maureen, how he made her laugh and how much she loved him, I knew he was a keeper.

When I got engaged, she got sicker. Her bones in her spine were collapsing on her spinal cord. She writhed in pain the first Thanksgiving my husband spent at our house, and we were all so worried until she finally had spinal surgery at Mass General.  She wore the brace she needed as she healed to my wedding shower. She was much better by the time of our wedding, and walked with a walker as a bridesmaid down the aisle.

When I started having a family, she started having hip and knee pain. While I had three children, she had three hip replacements. After our third was born, she was in a wheel chair because the last hip replacement didn’t work. Her knobby knees started to lock at hard angles, though her face was soft and round and rosy, and her love for her nieces and nephews abounded.

By the time our fourth child was born six years ago, Maureen was losing the ability to use her arms and hands, was bound to an electric wheel chair and required a hoyer lift to be moved, powered by my mother who took such wonderful care of her even through her own hip replacement, heart issues, and breast cancer. If Maureen was tough, she was modeling what she knew from our mother.

As much as we desired to bring her into our life, it was harder and harder for my mom to take her out, and she started to have spasms and stomach aches that made it hard for her to get out of bed. We needed to come to her. Looking back, we can see that as her body was breaking down on the outside it was breaking down on the inside too. Her kidneys kept backing up and getting infected, and she was hospitalized often with UTIs and kidney infections. Her colon kept getting backed up and distended because it just wasn’t working anymore. She would say a Memorae every time she was uncomfortable or in pain.

Through all this, Maureen rarely complained. It didn’t even occur to her to feel sorry for herself. In the end she required a lot of care from my mom to help her stay comfortable, to readjust her in bed, to help her sit up. But she was always happy to see us, and when my mom brought her to Thanksgiving or Easter she tried hard to be part of the festivities, even though she would probably rather have been in bed.

Maureen’s adult life is exactly what doctors have in mind when they say children with special needs might be a burden. They might suffer. But if you ask her and my mom, they didn’t see it that way at all. We were all so thankful for every day of her life.

Maureen’s faith was like a child, and in many ways, she helped all of us keep a childlike faith. She touched everyone she met.  Not by preaching words, not by any achievements. Not by anything she did, but just by who she was, and loving others well. She exemplified 1 Corinthians 13:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.

Love never fails.

Maureen’s life strengthened all of our faith. From a very young age, we had a constant counterpoint to our culture’s message that worth comes from success, advancement, achievement, beauty, wealth or power. She was one of the gang, cherished and loved for just being who she was. Her unique qualities: her belly laugh, her love of the silly, her razor-sharp wit, and her ability to navigate to a person’s heart, to what matters and always reveal so clearly what does not, made her one of the most inspiring people I will ever know. The really remarkable thing about her was that she was just always her essential self. She had none of the things that trip most of us up – ego, doubt, fear – just peace and love.

The thing that’s so hard about losing Maureen, even though I am so happy she is out of pain, and I know she is a saint, is that we’re going to miss her example. Her reminder to just be who God made you to be.

But as I hear Ronan on the monitor, waking up with giggles, I am so thankful God sent us another reminder. He knew we would need it.