It seems to be so easy for some folks to tell another how to manage loss. This interesting thing is that those doing the telling or suggesting are those who have not experienced a significant loss. I try so hard to be nice and accept the suggestions I am given with grace because they are coming from good hearts who mean well- do more; do less; spend more time with the kids; give them more space; work on the house; let it go for now; enjoy time with Casper; be careful what I am doing; go slower; work more; work less; more activities; fewer of them… it goes on and on and on. I’ve left work early a couple of times after telling my boss that I am going to have to wear a black mantilla and drape my space with black crepe to convince some folks that I am grieving enough to meet their needs and expectations.
Losing Linda was a life changing experience in so many ways. But it was and is intensely personal. My kids all experienced it in their own ways, and each expresses it differently. We have moments where we cry together, but more where we laugh when we think about Mama. That’s because we all knew, for years, that this time would come. The kids heard Linda saying “But Jillie, you have to (whatever Linda wanted to do or buy) because I’m dying.” They watched her go from Tickle Monster to a wheelchair and oxygen. We watched her taking care of others who did not live close to us or see her daily by putting on a brave face and pretending to be better than she was- then we all picked up the pieces as she was told that she looked really good and could not be that sick. The kids and I doled out meds when Linda could not see them well enough or was too out of it to take the right ones. We all knew where the emergency oxygen supplies were taped around the house- because if the tank runs out or the power goes out and you need a tank, you also have to have a teeny tiny washer on it or the air all escapes. We had emergency supplies in the car, the Spyder, and 3 places in the house, as well as my purse and Kerry’s purse. Chloe could hook up the tank on the Spyder and help get Linda on and off without Linda realizing she was being helped. The reality we all lived with was gradually helping Linda as her disease progressed, and adjusting our lives as the inevitable began to occur.
The day Linda and I saw her doctor in October when he finally told her she had to retire and would not live another year we went out to the Mission Inn for her first glass of wine in five years. We texted the kids because neither of us could call without crying. All we said was that we were taking some time out and would be home in an hour. Within three minutes they both texted back saying “It was the bad news we thought, wasn’t it? Mama’s dying.” Linda and I spent that time remembering happy times, and she started her list of things I was supposed to do before and after she died. That’s how I spent the next six months- grieving with Linda. Grieving the loss of my marriage. Taking care of three grieving kids. Supporting friends and family who were losing someone incredibly special. I made the calls, did the emails, updated Facebook. Linda and I talked every single night about her death. She wanted and needed to. She needed to take care of me as I was taking care of her. She knew she was not going to be here in person, but she intended to take care of me as much as she could before and after her death. It was exhausting for me- I was up late taking care of the house and kids, then talking every morning from one to three am because Linda could not sleep and could not breathe. I would sneak out of work so I could take her out on the days she had enough energy. A trip to the mall was a big deal. She was so happy she got to pick out the kids Valentine’s Day cards this year. Then we headed back home to bed.
I am so lucky I had that time. I am profoundly grateful I had the time with Linda to say goodbye as many times as I did. I got to curl up with her in the hospital bed the week she died. It was the first time she had been able to hold me in several years- she could be elevated, and had enough oxygen flowing that she could breathe enough to have my head on her chest. That was a gift I will always treasure. Heart failure and pulmonary fibrosis not only steals your loved one’s life, it steals the ability to hold each other close because you can’t breathe. But it makes holding hands and looking into each other’s eyes incredibly special and valuable, and a true expression of love and commitment.
Linda wanted the kids to know they needed to take her love and memory into their new lives where she was not here with us in person. She wanted me to be happy. She knew exactly what she wanted for each of us. She did not believe in prolonged grief. She said if you loved someone you should be grateful you had them in your life, and live your life as a monument to the lessons you learned from them and with the love they left with you. I am doing that. I do miss her- more than almost anyone knows. But I know how much she struggled- more than anyone. I have no doubt that I will see her again. I have no doubt that she is glad I am following her instructions. I am sure she is here with us. I am sure she is staying close to our children as well and glad that they are having a busy summer so they are not here. We have lots of chances as it is to compare this year and last year. Being gone and busy creating new memories is necessary this year. My grief, as it is, has been with me for three long years. Years filled with love, but also with exhaustion, and heartache, and supporting Linda while we worked, dealt with illness, raised kids, and as I gradually took over the running of the household. I would not change a minute of it. I am glad I had that time. I wish those watching and needing to have their say could try to take a step back and realize that until you have walked in the shoes of a spouse caring for a loved one who is chronically and then terminally ill, especially someone being left with children to finish raising, you cannot understand. Not really. It’s not the same as losing a parent or a beloved niece or nephew. I wear a bracelet I bought last October. It says “It is what it is.” That’s how I have to live. My life has changed. I hope those around me can allow me the grace to do what I need to do as I move into a new life, and understand I am not leaving Linda behind. She is walking with us in her own way. Just as she always did.
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