A Mother's View of Sibling Caregivers

We are honored, grateful, and excited to share a touching blog post this week from our Mom. Our Mom, Sue, is an amazing mother of five girls, a wife of 42 years and counting, a pharmacist, an avid Green Bay Packers fan, an excellent chef, a loving grandmother, and a patient beagle owner. She was our sister Colleen’s primary caregiver and she showed us what true strength and unconditional love look like. In honor of Mother’s Day, she shares her personal perspective on sibling caregivers and losing a child. This post only gives us further proof of how fabulous and resilient she is - to have experienced the greatest loss, and yet not only keep going every day, but also have the courage to write down some of her wisdom. Happy Mother’s Day to this Super Mom.

I'm so proud of my girls starting this website in order to help other siblings deal with the loss of their sister or brother. When we got the results of some tests in October 2014 that meant Colleen was engaged in her biggest fight ever, and within 24 hours all four siblings were here with Colleen from across the country, I marveled at their dedication and tenacity. My first reaction was no, we're fine, I can handle this. But it was transforming in that it gave Colleen a clear message that she was not going to be in this fight alone. She kept saying, "they're ALL coming here?" I said, "I guess they are!"

Mom and Daughters

Siblings can provide so much comfort and so much care, it's amazing to behold. From that very first weekend, they decided they would alternate weekends (and sometimes weeks) so that someone would ALWAYS be here, and I was not to worry about the comings or goings. In fact, they never wanted me to know too many details, but on Thursday or Friday someone would show up—sometimes alone, sometimes with a grandchild or two in tow, usually by Uber. I guess I thought I could handle it, but really? Looking back, I don't know how I could have. I was managing the day to day with Colleen and her family—helping with meals, preschool, doctors' appointments, etc.—but when the end of the week arrived, we needed help. It was such a relief for her dad and I to see a new face and a different perspective. It gave me time to do everyday chores (cooking, laundry) and relax a little, and it gave the girls time to spend with Colleen. Some of our best memories are of a visiting sibling watching a playoff game, HGTV, or a movie, or going out for a walk or a latte. It was good to have company and, even more important, for Colleen to have one-on-one time with her siblings. And it gave us a lot of fodder for conversation the following week... Colleen would say, "What do you think of this move to Kansas City?" Or, "Why do you think she wants to take a weaving course?" Or, "Why would she even consider choosing NYU?" Or, "Do you think her kids should be skiing blues at their age?" Colleen always had an opinion about everything, but then, she was the oldest. It also makes clear the strength of sibling bonds. She was dying of cancer and she took every event in her siblings' lives so seriously.

As a parent, I felt this was a true testament that we had done something right. We may have some crazy history—weeding requirements and telephone limits, no MTV or video games, too many dogs and too much football—but if your children end up with these kinds of bonds, you know SOME of your parenting skills were successful.

We have a large extended family who rallied around us. I was from a family of five children, my husband from a family of four children. Her aunts and uncles were devastated by her illness and did all they could to help. Colleen had 18 first cousins. They were wonderful to her—sending gifts, letters, emails, funny cards. She always remarked on how lucky she was to have cousins who cared about her and kept in touch.

We have wonderful friends and so did Colleen, who were there for us all along the way. They were there 24/7 with prayers, food, wine, hugs, and love. There were childhood friends, college friends, long time neighborhood friends, work friends, who all were supportive and lifesaving. Their many prayers lifted us up and gave us strength we never knew we had.

But it came to a point where Colleen only wanted her siblings and family around her. They were there no matter what. They knew her better than anyone. With them, she didn't have to put on a show. If she wasn't feeling good or didn't feel like talking, or even felt crabby, she could let her true feelings come out. This is what siblings provide in Caregiving. We all need to realize and appreciate their importance, foster these bonds from birth, and be grateful they want to fill this role.

As Gloria Vanderbilt said in her recent documentary, "I have heard it said that the greatest loss a human can experience is the loss of a child. It doesn't just change you, it demolishes you. The rest of your life is spent on another level. Is the pain less? No, just different. It is there forever, until the day you die. The rainbow comes, Wadsworth wrote, and boy was he right. It always does come back. You have to believe it will, even in the darkest of times."

I've thought about this a lot and I don't think you need to "get over it"—it's part of me now, and I need to learn how to live with it. Especially on Mother's Day. I feel so lucky to have had Colleen for 39 years and hopefully my other daughters for many more than that.

Looking for the rainbow! But so grateful to the Sibling Caregivers.