Listen to your body and not to other people. Other people don’t need to get better, and it makes them feel uncomfortable to have you suffering. People will try to rush you through the grieving process, but the one thing is to listen to your body and be true to yourself. If you’re tired, you rest. If you feel like crying, you cry. If you feel like laughing, you laugh.
Mother
Never take anything for granted
Our child, Paulina, has taught people to love their children and appreciate them every day and never take anything for granted. That’s a big thing. To really appreciate what they have. That’s an amazing gift. People get so wrapped up, and caught up in life, and Paulina made them come back.
Mother
It’s their journey
I think Paulina has given me the gift of knowing death in a way, and knowing that as hard as it is to let your child go, it’s their journey. She’s taught me that just because she isn’t here in person doesn’t mean that she’s not still with me every day in my heart. I talk to her every day. When I go out and I see a beautiful sunrise and a butterfly fluttering in the wind, I just say “Hi Paulina.” It’s getting to that time of year that poppies are around and growing, and it’s beautiful. And like the flowers, Paulina was hearty, and defied the odds, and grew up in rugged conditions where you’re not supposed to thrive. They’re so strong, even though they look so fragile.
Mother
Getting out of the house
I had worked part time from the time he was six months old until the last six months of his life. The work, for me, getting out of the house three days a week really helped in that period of time because I was able to pursue things for myself that were important to me and for my career from a professional standpoint. The benefit that I got from being out of the house and have a life outside of what we were doing with him day to day was really helpful.
Mother
Recently, on Mother’s Day, I wrote to a friend who lost a daughter. It was about a month after her daughter’s passing, and I said, and I truly mean this, I’ve come to a place where 90% of the time when I think about my son, I’m extremely happy. I feel this happiness because the memories of him are happy memories. I’m not in sad grief anymore. I still have times of sadness and loss, but then most of the time it’s a happiness I feel when I think of him. He’s with me every moment of every day. He is a constant part of who I am. I wouldn’t say that I consciously think of him every moment of every day, but that he is a part of who I am.
Mother
Take the time to sit with your grief
First, take the time to sit with your grief. I think that although it is painful and difficult, in the long run you’ll benefit from the living you can do after. The second thing would be to have an open channel of communication with those around you, whether with your husband, your children, your parents, your siblings, friends, just be able to be as clear and as honest with them about what you need, what’s helpful, what’s not helpful, in your hour of need.
Mother
Counseling
To really be able to have that one on one frank conversation with a third party through counseling is invaluable. It was for me. I went into counseling while my son was alive and I was fighting it. My best friend actually said to me “I can’t talk to you anymore, you need professional counseling.” To me that created a lot of anger, a lot of hurt, yet it was the best thing she could have ever done for me. I didn’t think that I needed it. I absolutely 110% benefited every day from it, from being able to enjoy my son while he was here and to understand what I was feeling after he was gone.
Mother
Communicate with others
The last thing I’d say is the people who are trying to comfort you, is to not let their comments be hurtful. I think that one of the things I benefited from with having the counselor was being able to say “I really hate when people say to me…” or “the most insulting thing happened to me today…” and just being able get that out there in a free and open environment, knowing that I wasn’t hurting others. And then to be able to say to those people “I know you think it’s helpful to say ‘I’m sorry,’ but it’s not helpful.” Empower yourself to be able to communicate with others and not just to hole up.
Mother
You will be OK
I found great comfort in talking to other families whose children had died because they were laughing again. They were smiling. They were clean and well dressed. They weren’t basket cases. I found tremendous comfort that you do survive and you live on. You absolutely, positively will be ok. I’ve used other families as beacons that I, too, can be ok.
Mother
After your child has died you should expect very little of yourself for the first year and especially for the first five months. The first five months are just a haze, so don’t expect anything. I had a huge amount of fear approaching the one year anniversary of her death because I didn’t want to be on the other side of the year. I wanted to be inside a year. I wanted to be close to her death. I didn’t want to be separated from her. The anniversary came and went and it was fine. The passage of time is a meaningless construct in terms of how close you are to your child. With the passage of time your child becomes less of a tangible thing and more of an idea. That’s a little upsetting sometimes. At the five year mark I burst into tears. I do most of my crying in my car. I got very upset at the five year mark when I realized that I was having trouble remembering the specifics of my daughter and that she was becoming more of an idea than my living feeling child. That was very upsetting but I also recognize that that’s the nature of death and grief. Time moves on and the way you hold something changes.
Mother
Respect their presence through rituals
It’s good to have rituals around their birthday, the anniversary of their death, their favorite day of the year, or their favorite holiday. Rituals that incorporate your child into your life allow you to feel that you’re always respecting their presence.
Mother
Allow yourself to grieve
Allow yourself to grieve. The world tells you that you’ve got to be over it in a couple of weeks and move on. You can’t. You need to be around people who will allow you to grieve for months and even years. Having somebody to resonate with in a celebratory way and to be able to talk about the person you’ve lost is really important. The hardest thing is when people ignore the person you’ve lost. We have plenty of people, even family members, who’ve chosen to do that and that really hurts. Be with people with whom you can talk about your child.
Mother
Take pictures
I have some advice pre death. Take pictures. I am so sad that even though there was nothing much to take pictures of that we don’t have pictures of her lying in bed before she died. We miss our really sick daughter. We’re still thinking of her in the ICU and I wish I had pictures of that.
Mother
I don’t want to presume that I know what another bereaved parent is feeling. Everybody is so different. I hated when people tried to give me advice. It would push the wrong buttons.
Mother
Death itself is not a scary moment
My number one piece of advice for parents whose children are near the end of life is that death itself is not a scary moment. There are ways to manage the pain so that final hours can be very peaceful; so that it becomes a genuine and emotional “letting go” as opposed to a “holding on.” I think that if you can let your child go in a calm fashion as opposed to a white knuckled holding on, it makes all the difference in those last few days.
Death is not something to fear. Cameron’s death was very peaceful. I wasn’t scared of it. My husband had seen his nephew die five months prior and was able to tell me “I’ve seen it. I’ve done it. It’s not scary.” That made all the difference for me because it meant that going into the last week of her life I wasn’t scared. That allowed me to relax into what was happening.
Mother