Every time I heard myself finding something ‘good’ that had come out of Nicholas passing away, I caught myself: how can something good possibly come out of this cavernous loss?
But the truth is that, if we look hard enough, we can always find a sliver of light in the darkness. It doesn’t mean we wouldn’t prefer to have Nicholas here. It certainly doesn’t mean that we’re glad he’s gone. We can’t bring him back, as much as we’d desperately love to, and we do have to continue living, as hard as that can be, so instead we try to find as many little bits of joy to focus on as we possibly can. And, in this kind of darkness, we cling to any sliver of light we can find.
I knew it probably seemed like a bizarre request, asking people whether they’d experienced any positive impacts in their life after Nicholas had died. It was difficult to convey in written words, so I even made a video so that I could ask this difficult question ‘in person’.
It seems fair that I have to answer the question first, before I share some of the stories that have been so graciously been shared with us.
Okay, here goes.
One impact of Nicholas’ death has been that I feel like my relationship with Charlie has strengthened as we have spent more quality time together. As the middle child between two brothers who have required more time and attention over the years with medical and therapy needs, he possibly didn’t get as much of me in the past. And that was okay and Charlie was absolutely fine, but our bond has definitely been more forged over the past 15 months. Another positive impact is that Ben and I were able to ride together in Thailand for Hands Across the Water at the beginning of the year (no, I still haven’t written about that but, yes, I will, eventually). The original plan was that I was supposed to ride and Ben was going to stay with the three boys. Perhaps we would have somehow worked out a way of both getting there, even with three boys to take care of, but it certainly enriched both the experience and our relationship for us to travel and ride together, and that plan evolved after we lost Nicholas. And the third positive impact I have experienced after losing Nicholas has been being regularly reminded how loved and missed and remembered he is and the presence of the community that continues to wrap their collective arms around us in our grief.
I love this beautiful community, and I knew there would be a response to my request. But I could not have foreseen the depth and breadth of the responses, the parts of the world we’d receive them from, and the impact they would have on me.
It was so healing for this grieving mother’s heart.
I knew that our beautiful, infinitely cheeky and delightful son Nicholas had touched lives in his four short years, but it wasn’t until I received those responses that I realised just how many people he has impacted, in his short and dynamic life but also through his death.
We have received over a hundred messages in response to my video request, so I’d like to share just a few snippets with you here. I’m sorry I am not able to share all of them, but I am deeply grateful for all of the responses. Because people shared such personal stories, I decided to remove any identifying features in order to protect their privacy.
“Next weekend it will be three years since I lost my Mum. My beautiful, loving, supportive Mum. My best friend. The person helping me raise my daughter after my marriage failed. I’m not ok. I freely admit that. I will never be ok with not having her here. But something happened, nearly a year ago that broke my heart but gave me strength at the same time. I started seeing posts that others had commented on or reacted to about a beautiful little soul who had passed away. I usually avoided such things because I was already sad enough on my own. But it kept coming up, so eventually I decided (with tissues at the ready) to see what the story was about. I found not just a story of loss, but a story of love. A wonderful little boy smiling up at me from so many pictures, surrounded by a family that simply adored him. A family that through all their grief, could focus on the blessing of having him be a part of their lives in the first place. Not just talking about what was gone, but the love that remained. I wondered how anyone could have that kind of strength. I took a close look at the face of his Mum, hoping to find some inspiration, some clue to unlock the secret of how she keeps going. This was something I’d tried before but never with any success. I couldn’t connect with anyone, they weren’t a part of my life so how could they possibly influence me? But here was someone who could. Because I was looking at the face of an old friend. A wonderful, kind friend who I hadn’t seen since high school. So while we haven’t spoken for twenty years and it’s under the most heartbreaking circumstances, my old friend is helping me, inspiring me, reminding me to focus on the good. All without even realising it. Thank you Annie. And I’m so very sorry. Xxxx”
“When dear Nicholas was sick, our house was going through a very stressful time brought on by my husband and father of my children being unfaithful. It was consuming, breaking and destroying both me and our family as we knew it. My husband had all but checked out of the house. Nicholas’ passing certainly made us put our own issues and selfishness aside, and gave us a new perspective on life – making us appreciate that the little things in life, which are actually really the big things, matter most. It made us rethink our life and make steps to repair as a family for which we are stronger than ever now.”
“I know that you don’t know me but as a fellow T21 mom, I was halfway across the world praying you through every phase. When your sweet boy died, I was going through a particularly difficult stage in my parenting. I have 4 small kiddos, including one with DS, and it all felt like too much. I decided that I wasn’t enough for any of my little ones. I just knew I’d never be good enough. It was keeping me up at night and I had a constant list of my shortcomings running through my head. Then sweet Nicholas died and everything shifted. I held my babies as I let go of the guilt and shame of not being perfect. I remember laying with my then 3 year old when reading that Nicholas had gone to Heaven and I sobbed and snuggled my son so close. I realized that I love my kids so well, and that’s truly all they need. Nicholas’ death brought me back to the truth that even if I’m not perfect, my love is enough. They feel loved everyday. Thank you for sharing your precious boy with us all.”
“When Nicholas died, and your story was shared via loving friends and then of course your memorable and heartfelt blogs, I reflected fully on my role as mother, more deeply than I ever had before. Of course I loved them and wanted the best for them, but was I giving them my best? I think this moment in time led me to start to formally reprioritised my boys so much so that I left my job for a year to be ‘their mum’. It’s been such a special and life changing time, I feel privileged to be able to do this (financially etc) but more so I feel privileged to have you somehow in my circle of life. We may not know each other well, but I want you to know I admire and love you for the way you choose to live your life and share it so freely.”
“It can be hard days when I am not coping with my kids, I see Nicholas’s face and I tell myself that we are ok. It can be in the cuddles and smiles from my boy that remind me why we met Nicholas. I cuddle my kids for longer now and am conscious of not rushing through little moments with them. It is the vivid memories of Nicholas’s funeral and the most beautiful tribute to a 4 year old boy who had a profound impact on so many. I often reflect on that day and the grieving faces in the packed church, it reminds me that we can all be like Nicholas if we try hard, that is good. I am more aware of how precious life is and the single biggest bit of good would be letting go of what doesn’t matter and packing life with as much fun as possible, just like Nicholas did. I am really grateful for the good your boy did while here with us and now in spirit. Nicholas, you will always be a game changer, little man.”
“I cried for you Anne, for your loss of your beautiful boy who was such a precious gift, for the loss of a child that I had never met, for the heartbreak of a mother who I had never met… it took me a week or so to stop crying every time I spoke of Nicholas, every time I spoke or thought about Down syndrome, every time I let myself think of the future with my son, but the tears did stop and I then started to admire the strength you had and how you even though you were in pain you posted pictures and heartfelt stories about life still continuing and taught me to cherish each and everyday. You taught me to take lots of pictures of all of my children and to record everything.. I now try to take a photo of my children as often as possible without being weird. LOL. I record laughter, I record milestones and I record love ❤️… because of you my phone is running low on memory LOL .. Anne you and your family inspire me to love more!! Love lots !! And love often … to take each day as it comes but cherish each and every moment as it is presented . And Nicholas has taught me to look at rainbows 🌈 to see everything in a new and wonderful light.”
“I don’t like to equate his passing with anything good. It doesn’t work in my mind. What would be good is if he was still here. So I guess I can just say what I took from his passing. And I took a lot. What I mostly took was that I stopped taking. I stopped taking things for granted. I stopped thinking what I had could be better. I stopped thinking improvement is always best and maybe living is good instead. I thought, ‘gosh, here is a kid who represented the joy of living and so why don’t I just do that?’ I think what I got by giving up taking is that Nicholas propelled me like a positive force to stop taking and start just being. And I didn’t learn that from his passing, Annie. I learnt that from his living.”
“One of the reasons we decided to continue my pregnancy and to keep our baby girl who had a prenatal diagnosis of T21 was because of Nicholas 
When I first came across the mummalove blog we had just received her diagnosis of both T21 and a complete AVSD. Unfortunately Nicholas had been hospitalised by this time. But, as I looked through the blog, I saw a joyful, fun loving boy. One deeply loved and fully embraced child. So it gave me great hope for my own child to be the same. Some of the things in particular that touched me during Nicholas’ passing was how you and the family loved him deeply and completely, as was evidenced through the blogs, and also how the T21 community came around you family with complete support changing all their Facebook profiles to ‘hello sunshine’.”
“But then a picture of Nicholas showed up in my feed wearing Easter bunny ears. And I realised I hadn’t even had time to organise eggs for the kids this year. And I also, in an instant remembered how incredibly precious time is, especially with the kids, especially while they’re little. So, on Tuesday I resigned. As awful a situation yours is, your little man has helped me focus in on what is truly important. I have no idea how we’ll manage financially. But I also know I’ll forgive myself for taking an extra year or two to climb out of debt but I could never forgive myself for consciously missing more time with the kids for the sake of a few bucks.”
“I found out I was pregnant last year in the beginning of May. It was BIG surprise for us, because we had been trying to have a baby for long time and after many unsuccessful IVF attempts, we decided not to do another cycle. We thought it was never going to happen so we sold and gave away all our baby items. It was a miracle for me to fall pregnant naturally. Due to my age, the possibility of having a baby with Down syndrome arose but we decided not to do any testing. Because we KNEW we were going to accept this baby. Because Nicholas was such an angel, a beautiful boy, and because you and Nicholas were such a big inspiration for us. If we hadn’t met you and your family, I believe my time of pregnancy would be totally different and I would have been more uneasy but I was able to be calm and positive with this pregnancy. I feel like even Nicholas helped me to get pregnant, and also helped me to get through it… I think it was meant to be happen that we met the LOVE Family.”
“When Nicholas died, I felt a huge opening in my heart and on the day of his funeral, a lifetime’s worth of grief and fear poured out in a river of tears. I found myself feeling backed into a corner, I knew that to not open my heart fully to my son would be a tragedy, no matter how scary it felt, because there was a woman in the world who didn’t have her son anymore, who would do anything to have him back. I could see through the relationship you shared with Nicholas that it’s imperative we love every day as though it were our last, because none of us know what is going to happen tomorrow. You loved Nicholas fearlessly every single day. He lived knowing he was loved and you are living without him now, knowing that you couldn’t have loved him more. I realised that this love you share is eternal and sustaining, even in the midst of heartbreak.”
“When you and Ben lost Nicholas, it really made me try to focus on the positives of parenting. Some days with multiple little children it’s so easy to get weighed down by the neverending fights and repetitiveness. We have a bunch of co sleepers here (all of them, it’s a tight fit in our bed!) and it’s always been a battle here. I think around the time you lost Nicholas it was one thing we really just let go. To appreciate they are only little for this time and it’s something they might need right now.”
“I remember thinking to myself, I had so much to be thankful for, my baby had lived against the odds, yes we have so many hurdles ahead but I have him to love in my life. It made me stop dwelling on the sadness that had taken over our lives for the past six or more months and to think about being grateful for what we had instead. At times I find myself dwelling again about what isn’t fair as we continue to receive poor diagnoses for our beautiful boy, but then it is like you know today is that day a reminder and Nicholas’s beautiful smiling face pops up in my newsfeed and I remember that I am lucky.”
“I found out about your blog and facebook posts around the same time I was diagnosed with triple negative breast cancer. Then a couple of weeks later is when I read that your beautiful boy was unwell and then passed on. Reading about you and your family’s loss allowed me to, I guess, cry… I think up until your post about Nicholas passing I hadn’t really allowed myself to express or feel any emotions and clearly this isn’t great. I started to write in a journal about what I was feeling and started to express this to my family. Holding it all in was becoming exhausting and keeping a smile on my face was getting harder to achieve on a daily basis. Up until Nicholas’ passing I was just going through the motions of everyday life, not really allowing myself to feel and express the complete range of emotions that comes with a cancer diagnosis. So, you expressing your emotions about your life and its ups and downs has opened up about my thoughts and feelings. I found it a little easier to express myself to others going thorough a similiar trauma or diagnosis of cancer.”
“‘The Nicholas effect’ has been far reaching in our lives. However this is certainly not just in his passing. Since he was first born and we met him, both he and your whole family, brought increased understanding to us all. An openness was created in communications about differences in all humans. I found myself becoming an advocate for knowledge around prenatal testing. So many women in my work setting really had no knowledge around why they were having antenatal testing – or what choices the results presented them with. I chose to focus on individual choice and focused on positives rather than having a more clinical view as is common in the medical world.
As Nicholas grew, my worldview changed and even more so after his death.
He affirmed something I had hoped, but had never seen with such strength and force.
The length of our lives and the manner we live them, means nothing of their impact on those around them.
Love is the only answer.”
Indeed, love is the only answer.
This little project made me realise how important it is to share our stories, because we never know what impact our words will have on those around us. Our words matter. We may be completely winging it in this grief journey of ours, but it was nice to hear that our willingness to share our grief and to continue to share Nicholas with the world had made a difference to others’ journeys too.
To anyone who has lost a loved one and is grieving, don’t be afraid to ask your tribe how much your loved one meant to them. I lost count of the people who began their responses to my video by saying that they had been meaning to share their story with us anyway, but really appreciated being invited to do so. You might just be surprised what you learn if you ask.
Thank you to everyone who sent such incredible messages and shared your hearts with us. Thank you for reminding us that Nicholas’ life mattered, and his death mattered too. We are deeply honoured that you took the time to respond.
Your words are an absolute gift and we will treasure them.