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  • Writer's picturePaula Ciampini MacDonald

My Iceberg

Updated: May 3, 2021

Today’s blog was inspired by the overwhelming response I received after posting “The Spark”. I was hopeful that my story would resonate with someone out there, but I never could have imagined the number of people who have reached out to me since. I heard from people who lost wives, husbands, parents, siblings, children, and friends. I was so humbled by their kind words, their truths and their hopes for the future. Their words resonated with me and I felt compelled to share more of my journey with them…. my journey with grief. I realized I was not being truly authentic if I left this piece out and owed it to my readers who trusted me with their stories. I have kept my grief VERY private and have only shared my grief with my children and a rare few. It has taken me months to write this blog because sharing my grief journey has made me feel vulnerable and exposed. Put it this way, it would be way easier to post a naked picture of myself on Instagram. I almost published it (my blog, NOT the pic) a few months ago but I scrapped it and started over. I wanted to do it right, so it has been a long process.


Today I am living a life I love, a life I am super proud of, but it hasn’t been without its hardships and heartache. For those of you who do not know, my first husband Dean passed away in September 2016 from ALS, better known as Lou Gehrig’s disease. ALS is a terminal and ruthless illness. The patient and their family experience/witness little deaths everyday. So much so, you are almost desensitized to the dying process that there is nothing scary about it. You see the person you love slowly wither away each day. After a lot of therapy and self work, I know now, my grieving started the day we received Dean’s diagnosis on December 11, 2014. Dean changed that day…and he never came back. He was forever changed, how could he not be? I was 22 months into my grief journey when Dean died. Please read that again and take a second to let it marinate. 22 months of grieving and mourning before Dean took his last breath. I genuinely believe this anticipatory grief, as the professionals call it, gave me the opportunity to find meaning, peace & gratitude while Dean was still alive. The good, the bad, the ugly, all of it helped me. ALS robbed us of so much but the one thing it gave us was time…time and opportunity to seek help and support for the kids and me while I cared for Dean. It gave me, “Paula the Planner”, the opportunity to PLAN how our lives would play out during the time we had left with Dean. Those who know me best know this saved me...as I was able to regain some kind of control when the rest of my life was skidding out of control. It gave me time to plan special family trips, meals & events. It gave me time to say everything I wanted to say, time to make funeral arrangements, time to get our affairs in order but most importantly it gave the kids and me time to say goodbye. It might sound strange to someone who has not walked in my shoes, but when Dean took his last breath, I was flooded with feelings of peace and relief. Relief that he was free from the shackles of ALS. Relief that he could finally stop pretending and smiling for everyone else. Relief that he died with dignity, on his own terms, surrounded by his loved ones. His fight with ALS was short lived, exactly how he wanted it, so in my books, he won the battle!


I struggle with feelings of guilt when I hear stories of a sudden loss of a loved one. I know our lives would be so different if the kids and I did not have the time we did with Dean. All death is painful and tragic, but sudden or unexpected death is way more traumatic in my opinion. Grief is so personal, and we all need something different. A perfect example, a reader lost her husband suddenly and though our losses were similar our journeys through grief have been quite different. She spoke about struggling with all “the firsts” ….the first Christmas, first anniversary, first birthday without her hubby. She explained how dark and difficult these once happy occasions were for her and how she dreaded them. I remember feeling the same way but for me it was all “the lasts”. The last family Christmas, the last NYE, each of the kid’s last birthdays with their Dad. These were some of my hardest times and some of my best Oscar worthy performances. I hosted the parties, roasted the turkeys, baked the cookies, wrapped the presents, etc.…all with forced excitement and a fake smile. Leaving the room to cry when needed knowing these moments as a family of 5 were slipping away forever with each passing minute. I spent months mentally preparing for all the firsts that would inevitably come but never once anticipated how brutal the lasts would be.


In the meantime, I worked my way through Elisabeth Kübler-Ross’s famous five stages of grief (Denial, Anger, Bargaining, Depression, and Acceptance). Initially I thought I could check off each stage like a task on my “To Do” list….a tad embarrassing to admit but that’s how my brain works best. But I learned (sometimes the hard way) that grief is not linear, there is no recipe for healing and there is definitely no timeline. When I look back now, it is clear to me when I reached the “acceptance” stage. It was not a moment in time rather it was a feeling. A feeling of hopefulness, excitement for the future, for the holidays and then unexpected feelings for a friend of mine named Blair :0). I did not realize it then but accepting Dean’s death did not mean I was “over it” or “over him”, it meant my heart transitioned from mourning his death to honouring his life. I knew what Dean wanted for the kids and I, he told me personally and he wrote it in a letter so I would not forget. Living each day and living our best life is how we honour Dean.


Like I have said before, grief is different for everyone and everyone progresses through their stages at their own pace. Sadly, one thing that is rarely discussed is the judgement surrounding grief. Losing a loved one is hard enough as it is but to be judged on how you go about your grief process is just plain cruel. There are all kinds of statistics out there on divorce rates for parents who have a lost a child; additionally, similar statistics exist measuring the dissolution of the extended family unit when someone remarries. In a David Kessler podcast (an expert on grief and loss), I learned grief does not cause divorce or splinter relationships, but it is the judgement of someone else’s grief that causes the breakdown. I have experienced judgement and I have heard many stories of judgement. Here are some classics.


“Can you believe she moved on so quickly”, “it has been months and he still won’t date anyone”, “it is so uncomfortable she posts nonstop”, “he doesn’t post anything, I guess he didn’t really love her”, she didn’t give herself enough time”, “he must be rebounding”, “she looks too happy”, …and the list goes on.


When a person hears these types of comments from relatives and friends it is a punch in the gut, it feels like such a betrayal. Sadly, the result…more loss. Whether it comes from a place of concern or projection, it is still damaging. Normally, those making the harshest judgements are those who are suffering the most with their own grief. Some relationships mend, and some end. Not everyone stays in your life after a death, and I have learned that’s ok. The most important message I hope to convey is the way someone chooses to grieve is no one else’s business and it should not be judged. We are all doing the best we can. I love the iceberg analogy…“Grief is like an iceberg. From a quick glance, an outsider will only ever see the tip, but they have no idea what is hidden beneath.” So be kind and ask questions instead of rushing into judgement.


Children do not face the same type of judgements or criticisms for their grief process, and I am SO thankful they don’t!! Over the last 5 years I have heard a lot of, “I can’t believe how happy your kids look”, “your kids are doing so well” & “they seem so normal”. No one has ever doubted their love and loyalty to their Dad because they are happy and thriving in his absence. Early on, I would receive “how are the kids doing” texts/calls on Father’s Day or Dean’s birthday. When I would say the kids were doing well and we had fun celebrating Dean in which ever way we did, it felt like I was not believed. Some of the most well intentioned and caring people in our lives just do not get it. They do not understand that we all grieve differently. Why aren’t the kids crying in a puddle on Father’s Day?? It is hard for them to reconcile since they themselves are sad or crying for my kids on that day. I have learned most people do not understand childhood grief. Children and teens grieve differently than adults, their grief is short term, and it can be explained like peaks and valleys. My kids miss their Dad everyday, not just on special occasions. It is normal to think a special occasion would be harder, so please understand I am certainly not criticizing the concern, just explaining it. As a family, we choose to infuse these occasions with “everything Dean” and so we laugh, we joke, and we remember…and we don’t normally cry.


Dealing with my own grief has been one thing but “mothering” my 3 children through their grief has been THE MOST challenging and heartbreaking experience of my life. Their grief has been just as unique as their individual personalities. Again, this may sound weird, but I feel so blessed that I have been able to support my kids and walk hand in hand with them through their grief journeys. Even though I was prepared for Dean’s death it did not make the loss any easier rather it made me stronger, more resilient, and better equipped to help my kids. Grief is super sneaky….it rears its head and hits so randomly especially for children. For one of my kids a “valley” moment happened on an early morning walk on a beach. And just like waves crashing at our feet, a wave of emotion hit out of the blue with “I miss my Daddy” followed by sobbing that still makes my heart ache. For another, it was the whiff of a stranger’s cologne as we walked by in a store….no words were said, but we both knew, then the eyes filled with tears, the hand grabbed mine and squeezed so tight it left marks. Scent is said to be the strongest emotion evoking sense. For the kids and I it is the moments we are not anticipating or preparing for that hit the hardest. I would do ANYTHING to take my kid’s pain away but since that is impossible to do, I have learned to just “sit in the dirt” with them. Sometimes my words help, and other times sitting in silence is more soothing than words. We ventured through many valleys, and each time Luke, Grace & Sophie emerge from the dirt, they have grown more resilient, they walk a little lighter and quickly move on to the next thing. As their mom and fellow traveller, my heart is a little worse for the wear as it takes me a longer to rebound from their heartache…but nothing a hot shower and good bottle of red can’t soothe!


The death of loved one leaves you forever changed. It changes how you love, how you hurt and how you live. To all of those travelling the road of grief, be kind with yourself, allow yourself the freedom to blossom into the new version of you. There is no end to grief, but my kids and I have learned firsthand that grief and joy can live together.



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Attilio Ciampini
Attilio Ciampini
May 05, 2021

Love you lots! Dad

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patullip
patullip
May 04, 2021

Thank you for sharing. I relate to a lot of what you went through and especially that you are forever changed.❤️❤️

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Grace Stock
Grace Stock
May 04, 2021

so proud of you ma❤️❤️

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ciampinic
May 04, 2021

Love you forever, Paula. 💗 Zia C.

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rjkn
May 04, 2021

Thank you for sharing your journey Paula. ❤️

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