“She died”

 There comes a time when, inevitably, we have to teach our kids about loss.  I’m not talking about a beloved action figure or that perfect pillow, although I realize the loss of those things can be devastating, but how do you explain to your kids about death of a loved one?

Our first experience with this was last year when we had to put our dog down.  We were completely torn up over it because we practiced our parenting skills on that dog and our ASD son grew up with her.  The first thing he’d do when he woke up or came home from school was look for her and play chase.  He’d spend hours in the backyard with her teasing her from the top of the clubhouse with one of her chew toys.  He’d laugh and laugh while she barked and jumped around trying to get it back.

The boys were at my mom’s when we took her to the veterinarian to be put down.  We were devastated about our dog, but the idea that I had to explain to my children that she was gone and not coming home was too much for me to bear.  We told them that she had gotten sick (she had dementia and would snap at us on occasion) and the doctor couldn’t fix her so she died.  They asked to see her, which made me feel guilty that we couldn’t afford to have her cremated.  I explained that we can’t ever see her again, but that she’s in heaven, happy and playing with other dogs.  That lead to the discussion of what heaven is.  Ugh!  I’m not really sure how our ASD son processed it all, but our NT son was devastated.  He couldn’t sleep for weeks and kept telling me things like, “God can’t have her…she’s MY dog!”

We struggled with the idea that we didn’t tell the kids the right way, that maybe we needed to be gentler about it with the 3-year old and more direct with the 8-year old.  Months later, when our youngest was mostly done grieving, our older son seemed to realize that his dog really wasn’t coming home.  He walked up to me one day looking sad and said, “She died.  Dixie died.” He sobbed off and on for days.  It broke my heart all over again.  I was happy that it clicked for him but crushed that he had to go through the pain of realizing that his dog was gone.

Fast forward nine months.  My aunt had been having some health issues and found out she had stage four lung cancer that had metastasized to the brain.  Now this was a confusing time for me.  The doctors were saying she could live 6-12 months but how soon do I tell my boys that?  In general, I couldn’t believe this was happening to my aunt and was devastated that my cousin was losing her mom.  My aunt would spend many summers at our cottage helping my mom replant trees, tearing out landscaping and replanting other things.  My kids saw her a lot in the summers and my younger son adores her grandson.  I had no idea what to tell my boys, nor when to do it.

February rolls up and my aunt’s hair began to fall out from the radiation.  My uncle came in from Omaha for my mom and grandmother’s birthday with a freshly shaven head, and did the honor of shaving the rest of my aunt’s hair.  She was so happy, full of life and seemed proud of her bald head.

We had a get together for the birthday girls, and my aunt came with paint for the kids to paint her head.  Knowing she was going to be bald, I told the kids that she was sick and the medicine made her hair fall out.  Our older boy avoided her all night and refused to paint her head.  My younger son was a bit more serious than normal, but took great care when it came time to paint.  I was really pleased with how things went. My older son handled the chaos of a family gathering in my grandmother’s small condo, but I was still worried about how he was processing it all.

In March my aunt had a setback, and I asked the kids if they wanted to make ‘get well’ cards. My older son, in his nervousness, declined.  We sent off a card from my younger boy while I spent a great deal of time juggling life; juggling everything except my kids’ understanding of what was going on.  Between work, going to school, and driving between states to visit with my aunt, I hadn’t sat down with them yet to tell them really how sick my aunt was.  It bothered me, but I guess I kept thinking I had more time.  By the time my aunt was released from the hospital, she was put into hospice care.

The weekend she passed, I happened to be in town at my in-laws without my husband or kids.  Instead of going home, I decided to go visit my aunt and to see my cousin.  I’m so glad that I did because she passed that next morning, about an hour after I left.  I guess now I really needed to sit down with the kids and figure out how much I want to expose them to death.  I explained that, like our dog Dixie, my aunt was too sick for the doctors to fix, so she died.  I explained about what the process was going to be, that we were going to the wake, and that she’d be there in a casket. We’d have to be quiet and there might be a lot of crying.  I also read the book I Miss You: A First Look at Death, by Pat Thomas and Leslie Harker, to them hoping that would help.

They did well at the wake and I didn’t push them to approach the casket, but they did observe me go up.  Eventually my little one went up to say goodbye to her but my oldest still kept away.  He did ask at one point, where the “other” aunt was and thinking I knew the point of his question, told him that the other half of her (her soul) was up in heaven.  That’s when my youngest chimed in “with Dixie”.  My oldest eventually walked past the casket and looked at her; he did all right.  I was definitely proud of my boys that day, but so sad that it was over the loss of my aunt.

We chose not to bring them to the funeral thinking it was going to be too much to handle.  For me that is.  Later I realized that my oldest really wanted to go.  He seems sad about her passing and brings her up often.  So while we’re in town for Autism One, we’ll be sneaking away from the conference and visiting her at the cemetery with the boys.  Only time will tell how he is processing this, but I think that going through the process with our dog and my aunt gives them a foundation for the unfortunate time when we will have to go through this with someone they’re truly attached to.  We just hope we did the right things, said the right things, so as to not add confusion to such a heady topic considering their age.  All things considered, I think we did all right, and am not sure what I would change.

~ Cupcake

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8 Responses to “She died”

  1. Money says:

    You beautifully navigated such a tough life experience!

  2. Kendra Pettengill says:

    Savage…funny I forget that they are my losses too sometimes. I have to be strong for my daughter, my mom, my sister-in-law, my brothers, my sister, many autism families I have mentored through the years. I have been at this for 11 years now. My daughter will enter High School next year even if I am not prepared for that, even if she is only 4’11” and 80 pounds. She did just tryout for cheerleader and we found out she made it on the varsity squad. She was awesome. I tell her they just want to throw her tiny body in the air. Like many of you I write every day, it is my sanity, it is how in a tiny way, while I always seem to be helping someone else, I can help myself too, even if just a little. So many of your blog stories spur me to think, remember, and to write. Thank you.

  3. Kendra Pettengill says:

    I could not believe the timing of this beautiful writing. My daughter has unfortunately been surrounded by death and illness far too much in her short life. At 18 months old her cousin, my niece, my only sister’s daughter passed away at only 15 months old. We were going to raise our little girls together, and I was soon to face an autism diagnosis for my daughter, but could not allow myself to grieve in any way, after all, at least I still had my daughter. Even at that age she kept patting everyone on the back, seemingly confused why everyone couldn’t stop crying.

    Then almost on top of her autism diagnosis, my brother was diagnosed with melanoma and would fight the next 8 years before losing to the disease. We fought autism and cancer together, often finding similarities and common sources of information. But in the end he was on home hospice and seeing him physically and mentally shrink away was devastating for her and she refused to talk about it for many years even as she was recovering.

    Then we watched my Mother as Type I diabetes caused her heart to fail, she battled breast cancer, and ended up with a pace-maker. She is still with us and my daughter and I care for her but it is hard and she doesn’t get around very well any more. My daughter still orders her to live forever.

    There was my Aunt, another cancer fatality, another slow death, another funeral.

    And finallly, my father, my daughter’s father figure whom she called Papa passed away a few weeks after her 12th birthday. Since we all live on the same property, we were around each other every day, shared chores, shared meals, laughter and love. Cancer came swiftly and between diagnosis and death we had 9 days. Like my brother it was home hospice care and his only nurses were my brothers, my sister, my in-laws and the now “hospice family expert”, my widowed sister-in-law who is an angel sent from above to comfort and help all who need it. But my daughter did not cry and I worried about her and how it all was affecting her.

    She is working on a project at school right right now call “Who am I”. And she must write a lot of answers to questions. When she was asked to write about an event that dramatically changed her life, she wrote about my Dad passing away. She talked about how funny he was and how many things he taught her and made for her in his wood shop. Then she wrote “I don’t cry like other people do, instead I feel this horrible physical pain inside of me that I cannot explain. That is what I feel for Papa and why I still cannot talk about his death because that pain comes back.” And yesterday as I was reviewing new writings in her project and I came across this……….”If I were to die, it would be best if it would happen in a hospital. My Mom would be there, my Grandma, my Aunts and Uncles, my Cousins, and my Aunt Lisa. I would rather have them not cry but to just think about me and be happy.” I started crying and she laughed at me. I could not be happy ever again if that happened, and no Mother should have to contemplate her own child contemplating her death before your own. But all this has given such insight into the workings of her amazing mind. And how so much death around her has affected her, even if she didn’t seem to react at the time. Is her difference a curse or a blessing when it comes to dealing with death? While she appeared unfazed, uncaring, unmoved by these deaths, from her writings now, it is obvious there was far more going on with her than we ever imagined or understood.

    • SavageTMR says:

      Thank you for sharing your story with us Kendra. I’m so sorry for all of the losses both you and your daughter have experienced. Your daughter sounds like an amazing little girl 🙂

  4. Sugah says:


  5. Cupcake says:

    mtngtmom that was so beautifully written. What a heartfelt tribute to your friend and teacher. Thank you for sharing that story with all of us.

  6. Guilded Thinker says:

    Death is a really hard one to explain to our little ones. I don’t recall my parents ever having a talk with me about it, though. We had lots of animals when I was growing up and as a matter of course, some died. I was probably about 6 when I held a sick kitten as it drew its last breaths.
    We lost my husband’s mother in October, 2010 and my grandmother in September, 2011. In the middle of all this, my mother had two separate strokes, almost exactly one year apart, that left her completely changed. The boys knew their grandmother and great-grandmother, so there were some questions, particularly from my 3 1/2 yr old. We were honest with them. Both of them were strangely quiet and well-behaved at the funerals. My mother-in-law had chosen to be cremated, and honestly, I think it made it easier for all of us. Instead of a casket, there was a lovely photo of her. My grandmother chose the traditional route. Though the boys did not “view” her, it was just more unsettling for everyone. Still, I do not think they fully understand the “finality” of death. My 3 1/2 yr old still asks about G.G (my grandmother) and still refers to any gray-haired elderly woman as either G.G. or Grammy G (my mother-in-law).
    Thank you for this post, Cupcake. You have a beautiful way with words.

  7. mtngtmom says:

    My son and I lost our dearest friend 2 years ago, his first teacher who taught us BOTH how to LIVE and learn and love in the midst of ASD diagnosis. She became our godmother for the next 7 years. Below is what I wrote the day she died. I do believe that writing is therapy, for us and our kids.

    My friend Ita died today. But it seems like she is with me now more than she has been the past 5 days when she couldn’t speak. I have heard her voice all day, “Hello my dear” in that soft warm Irish brogue. And so I am grateful, because we’ve had too many good talks to stop now.

    And I am grateful that her passing was peaceful after her 16 day fight for breath. Her lung cancer suddenly put her in the hospital, and the treatment quickly destroyed her body. Her powerful and vital spirit couldn’t be dampened right away. She held court at her bedside on St. Patty’s Day, in the ICU no less, where we all had to disinfect and gown up and wear masks to enter her presence. But she had on her green: beads, ribbons, shamrocks pinned to her gown, and she inspected all her guests for their own loyal show of green. Eyes twinkling, her daughter had done her hair and make-up early that morning, she was making introductions between her friends and family and folks that drove down from other towns – as if this were a familiar pub we were all hanging out at.

    But a few days later, she was barely making it through the night and had to hold another bedside court. This time she called – or rather commanded – her family to her side to make the final awful decisions. Still in charge, and still impish, she confided to me that she would be gentle with them, however she would wear her crown so they would know who was in charge. That was my Ita.

    But she was afraid, too. Her lungs were filling with fluid and the daily radiation was burning her throat and she knew her death would likely be one of suffocation. The radiation and the drugs tore her down faster than I could ever have believed.

    Only 3 weeks ago, my son and I had “tea” with our Ms.Ita at the Barnes & Noble bookstore, shared dutch apple “purses” and relished the sugar high, burned our tongues on too-hot tea but that didn’t stop our story-telling! My son would share his latest musical or academic accomplishment with his first and favorite teacher. She always beamed. She who encouraged me to let him try, give him wings, believe.

    We always exchanged gifts, no matter if it was days or months til the next holiday or birthday. She invariably had a snowglobe for my son, good strong Irish tea from home for me, and a real English Cadbury chocolate (“not that imitation stuff made in Mexico!”) to share with my husband if it ever made it home. I shared books – always – as she had many long hours at chemo. And bright pink anything – her color. She was in high spirits, whisking through the store, having just run a program at her church, and with a long list of errands and people to meet the rest of her day. Unstoppable, indomitable, positive and loving, always taking care of everybody.

    And so I believe God took her home the best way possible. Sixteen days. Long enough to say her goodbyes, for her sisters to fly in from England, Holland, and Ireland to be by her side, to be surrounded by her loved ones in her daughter’s home, but not long enough to say everything that the next 20 years would have given us.

    And that is why I am grateful that our last words were significant and not about the weather or the economy or the …. No. She was teaching until the end. Her last words to me were, “I think about you all the time. I love you.”

    So please make your words significant. All we can do about this life is take care of each other, love each other, use the power of our words to build up and encourage and comfort.

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