Sunday, 8 November 2015

November 2015

This is always a hard time of year for us. This time 4 years ago I knew something was wrong with Harry. We had been told he had a virus, having been to AGH twice for overnight stays, I felt like I was being labelled as the neurotic mother. I was trying hard to sit tight and ride out this virus as I had been told that it could take some weeks even months to pass!

Though witnessing my Harry so lifeless and in pain was the hardest thing ever. I felt helpless. The calpol and intermittent ibuprofen was not hitting the spot. Virus or no virus I felt Harry had been left to suffer, no one really caring except myself as I was off work, managing him 24/7. 

As the week progressed this  time 4 years I started investigating how to get a private ultrasound as I needed more clarity on what was wrong with Harry and needed to know we had ruled everything out. 

On 11.11.11 Harry was more lifeless than the previous days so I took him in my arms to see the G.P. and she was shocked to see Harry in the state he was. Finally we were taken seriously and went home to pack for a stay in LGI. On the 12.11.11 Harry had 2 ultrasounds at LGI and the massive tumour was identified in his abdomen. Cancer was discussed as the most probable diagnosis.

I have been asked how I felt when I heard those words. Well initially I was relieved at being taken seriously and I wasn't neurotic. However, I did not really know what it all meant and how it would affect our lives. The week that followed enlightened me as we were quickly transferred onto the oncology ward.

Harry had several tests that week that required anaesthetics, starvation, blood tests and a biopsy which left him with a 9 inch scar. He had his first blood transfusion, started chemo as he was slipping through our fingers and had his first nasal gastric tube fitted! 

This was a taster as to how our lives would be for the next 2.5 years! As that first week unfolded I realised the enormity of what neuroblastoma cancer is and the effect it would have not only on Harry, but all of us.

The enormity did not hit me until Saturday 18 th November, when I ventured into Leeds to get a new mobile phone. I'd forgotten Christmas was on thd horizon and seeing the coca cola lorry with the fake snow, the shops with all their festivity and all the people frantically shopping for Christmas, I felt like I was stood still looking in on a world I did not belong to. My fear was that Harry would not make Christmas. I nearly fell in a crumpled heap in the entrance of marks and spencer, but managed to knock onthe  window of a nearby police car and sat in the back for a few moments to gather myself back together! From that moment it was sink or swim and I chose swim. 

Now we do not have Harry on this earth with us I still choose swim. Though do have some sinking days, particularly this time of year.

'Take a break' magazine are going to feature a story in their next edition of Harry's illness from Callum 's perspective. I have heard the story verbally and it is in 'take a break style' so a little twee in places, but overall I feel it highlights the plight of siblings and details Harry's treatment and relapse. In light of the story that is unfolding on Coronation street and the decision to play down the neuroblastoma story of Hope, since the cancer has not spread, which is not typical of those diagnosed with neuroblastoma, I hope our story is read by many and the true depiction of what can happen is understood further. 

I also want to share a very useful arcticle another bereaved parent shared, as it depicts an accurate analysis of the life of a bereaved parent.

By Angela Millar 

7 Things I’ve Learned Since the Loss of My Child

by Angela Miller

Child loss is a loss like no other. One often misunderstood by many. If you love a bereaved parent or know someone who does, remember that even his or her “good” days are harder than you could ever imagine. Compassion and love, not advice, are needed. If you’d like an inside look into why the loss of a child is a grief that lasts forever, here is what I’ve learned in my seven years of trekking through the unimaginable.

7 Things I've Learned Since the Loss of My Child

1). Love never dies.

There will never come a day, hour, minute or second I stop loving or thinking about my son. Just as parents of living children unconditionally love their children always and forever, so do bereaved parents. I want to say and hear his name just the same as non-bereaved parents do. I want to speak about my deceased children as normally and naturally as you speak of your living ones.

I love my child just as much as you love yours– the only difference is mine lives in heaven and talking about about him is unfortunately quite taboo in our culture. I hope to change that. Our culture isn’t so great about hearing about children gone too soon, but that doesn’t stop me from saying my son’s name and sharing his love and light everywhere I go. Just because it might make you uncomfortable, doesn’t make him matter any less. My son’s life was cut irreversibly short, but his love lives on forever. And ever.

2). Bereaved parents share an unspeakable bond.

In my seven years navigating the world as a bereaved parent, I am continually struck by the power of the bond between bereaved parents. Strangers become kindreds in mere seconds– a look, a glance, a knowing of the heart connects us, even if we’ve never met before. No matter our circumstances, who we are, or how different we are, there is no greater bond than the connection between parents who understand the agony of enduring the death of a child. It’s a pain we suffer for a lifetime, and unfortunately only those who have walked the path of child loss understand the depth and breadth of both the pain and the love we carry.

3). I will grieve for a lifetime.

Period. The end. There is no “moving on,” or “getting over it.” There is no bow, no fix, no solution to my heartache. There is no end to the ways I will grieve and for how long I will grieve. There is no glue for my broken heart, no exilir for my pain, no going back in time. For as long as I breathe, I will grieve and ache and love my son with all my heart and soul. There will never come a time where I won’t think about who my son would be, what he would look like, and how he would be woven perfectly into the tapestry of my family. I wish people could understand that grief lasts forever because love lasts forever; that the loss of a child is not one finite event, it is a continuous loss that unfolds minute by minute over the course of a lifetime. Every missed birthday, holiday, milestone– should-be back-to-school school years and graduations; weddings that will never be; grandchildren that should have been but will never be born– an entire generation of people are irrevocably altered forever.

This is why grief lasts forever. The ripple effect lasts forever. The bleeding never stops.

4). It’s a club I can never leave, but is filled with the most shining souls I’ve ever known.

This crappy club called child loss is a club I never wanted to join, and one I can never leave, yet is filled with some of the best people I’ve ever known. And yet we all wish we could jump ship– that we could have met another way– any other way but this.Alas, these shining souls are the most beautiful, compassionate, grounded, loving, movers, shakers and healers I have ever had the honor of knowing. They are life-changers, game-changers, relentless survivors and thrivers. Warrior moms and dads who redefine the word brave.

Every day loss parents move mountains in honor of their children gone too soon. They start movements, change laws, spearhead crusades of tireless activism. Why? In the hope that even just one parent could be spared from joining the club. If you’ve ever wondered who some of the greatest world changers are, hang out with a few bereaved parents and watch how they live, see what they do in a day, a week, a lifetime. Watch how they alchemize their grief into a force to be reckoned with, watch how they turn tragedy into transformation, loss into legacy.

Love is the most powerful force on earth, and the love between a bereaved parent and his/her child is a lifeforce to behold. Get to know a bereaved parent. You’ll be thankful you did.

5). The empty chair/room/space never becomes less empty.

Empty chair, empty room, empty space in every family picture. Empty, vacant, forever gone for this lifetime. Empty spaces that should be full, everywhere we go. There is and will always be a missing space in our lives, our families, a forever-hole-in-our-hearts. Time does not make the space less empty. Neither do platitudes, clichés or well-wishes for us to “move on,” or “stop dwelling,” from well intentioned friends or family. Nothing does. No matter how you look at it, empty is still empty. Missing is still missing. Gone is still gone. The problem is nothing can fill it. Minute after minute, hour after hour, day after day, month after month, year after heartbreaking year the empty space remains.

The empty space of our missing child(ren) lasts a lifetime. And so we rightfully miss them forever. Help us by holding the space of that truth for us.

6). No matter how long it’s been, holidays never become easier without my son.

Never, ever. Have you ever wondered why every holiday season is like torture for a bereaved parent? Even if it’s been 5, 10, or 25 years later? It’s because they really, truly are. Imagine if you had to live every holiday without one or more of your precious children. Imagine how that might feel for you. It would be easier to lose an arm, a leg or two– anything— than to live without your flesh and blood, without the beat of your heart. Almost anything would be easier than living without one of more of your precious children. That is why holidays are always and forever hard for bereaved parents. Don’t wonder why or even try to understand. Know you don’t have to understand in order to be a supportive presence. Consider supporting and loving some bereaved parents this holiday season. It will be the best gift you could ever give them.

7). Because I know deep sorrow, I also know unspeakable joy.

Though I will grieve the death of my son forever and then some, it does not mean my life is lacking happiness and joy. Quite the contrary, in fact, though it took awhile to get there. It is not either/or, it’s both/and. My life is more rich now. I live from a deeper place. I love deeper still. Because I grieve I also know a joy like no other. The joy I experience now is far deeper and more intense than the joy I experienced before my loss. Such is the alchemy of grief.

Because I’ve clawed my way from the depth of unimaginable pain, suffering and sorrow, again and again– when the joy comes, however and whenever it does– it is a joy that reverberates through every pore of my skin and every bone in my body. I feel all of it, deeply: the love, the grief, the joy, the pain. I embrace and thank every morsel of it. My life now is more rich and vibrant and full, not despite my loss, but because of it. In grief there are gifts, sometimes many. These gifts don’t in any way make it all “worth” it, but I am grateful beyond words for each and every gift that comes my way. I bow my head to each one and say thank you, thank you, thank you. Because there is nothing– and I mean absolutely nothing– I take for granted. Living life in this way gives me greater joy than I’ve ever known possible.

I have my son to thank for that. Being his mom is the best gift I’ve ever been given.

Even death can’t take that away.



Angela Miller is a writer, speaker and grief advocate who provides support and solace to those who are grieving the loss of a child. She is the author of You Are the Mother of All Mothers: A Message of Hope for the Grieving Heart, founder of the award-winning community A Bed For My Heart, writer for the Open to Hope Foundation and Still Standing Magazine. Angela writes candidly about child loss and grief without sugar coating the reality of life after loss. Her writing and her book have been featured in ForbesPsychology Today,MPRBlogTalk RadioOpen to Hope Radio and Writerly, among others. When she’s not writing, traveling, or healing hearts, you can find Angela making every moment count with her two beautiful, blue-eyed boys.