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Mercy angel

My mother asked me yesterday how I cope with speaking about Ben in my interviews on TV and on radio etc. How I was doing with holding it all together, especially in public.  She told me a story about a woman she had met at a function the previous week.  This woman had lost a baby 20 years ago.  She told my mom that although she had other children since, and was very happy, sometimes a memory would sneak up on her, at the strangest times, when she was cleaning, or driving, and that pang would resound once again in her heart.  Quite intensely, just for that moment.

 It gets easier. Although you don’t believe it, or even want to hear it when you are the darkest moments of your grief, time really is the proverbial healer.  The pain gets less overwhelming, the wound less raw. And then it just becomes part of who you are.  It’s sad, but you live comfortably with that sadness. 

 Like the woman who lost her child 20 years ago, I too am happy now. I don’t spend a lot of time being sad about Ben. I still miss him. In fact I made myself look at photos of him yesterday.  I say ‘made’ myself because it still is a little raw for me, but I wanted to burn his face into my memory again. I wanted to search his face for any features that his brother or sister might have.  He looks a little like Kate. A mixture of Adam and Kate actually. I stared at the photo of his face and wondered again, for the millionth time, what he might have been like as a little boy.

 I really am fine. I am able to talk about Ben with breaking down.  I am even able to look at his photos and remember back without the searing heartache.  Mostly because I prepare myself ahead, a mental version of taking a deep breath and squaring one’s shoulders. But like the woman who lost her child so many years back, it is when I am not expecting it that it hits me hardest.

 I got an email in my inbox today from the nurse who took care of Ben while he was still alive, who prayed over him while he lay there fighting for his life, and who prepared him so gracefully for his death.  She is the nurse who gently removed all the IV lines, the ventilator tube; who carefully wiped away the bits of stickiness left over from the Band-Aids and sticky tape, and who dressed him for the first and last time in a little yellow baby sleeper.  She placed him in my arms so that I could hold him for the first, and last time. And once he had died, she took him from me again and prepared him to be taken away.  

 After Ben had died, she was so gentle and kind and helpful.  She helped me with the terrible details of where his little body should go, which funeral home would collect him etc – the horrendous admin of death.  She honestly helped me so much. She gave my son and I dignity in his death.  I will forever be grateful to her for that. I thought of her often in the year after his death

 Imagine then my reaction when I saw her again at the NICU where Adam spent the first twelve days of his life.  A totally different NICU, far away from the one where Ben had died.  I could never have gone back there again. I was so pleased to see her, even it was a very emotional time.  When Adam was eventually discharged twelve days later, she was the nurse on duty.  She helped me dress him in his outfit; she removed all the tags and signed him out.  And she said to me “I am so glad that this time the little boy I am handing you is going home with you, happy and healthy”.  It was such an incredibly poignant moment. For both of us. It felt so fitting that she was the nurse discharging Adam.

 So when I saw her email in my inbox today, I was immediately transported back to the days when Ben was in the NICU, when he died… For the first time in a long time I cried.  I miss him; I miss what could have been. 

 “I don't know if you remember me but I will never forget you and I believe that I am amongst the privileged people to have been able to share a small part of your journey. I looked after Ben at xxxxxxx then Adam in xxxxxx…”

 Of course I remember her!  She is such a beautiful person. Young. I think she was in her very early twenties at the time, but so full of grace, so mature.  And she meant so much to me, both with Ben and with Adam.

 I sent her a note back

 “You will never know just how much you meant to me, or how important you are in my life. You gave me a gift that will stay with me for the rest of my life. I will forever be grateful for the way in which you took care of my son and more importantly, the way you handled the situation that allowed him to die in dignity and allowed me to say goodbye in a dignified way.

 Honestly, I wish there was an award I could recommend you for, or a prize I could nominate you for. You were an excellent NICU nurse, not only because of the way you cared for the babies, but the way you treated Marko and I.  Thank you thank you thank you”

 She is no longer working as a nurse, which is such a pity.  She is such an excellent one.  She was really excellent with the babies and with the parents, which is SO important when you have a sick child.  Nurses do one of the most important jobs in the world, and in this country they get paid so badly, it is a disgrace. An absolute disgrace.

 Thank God for people like this amazing young woman, I am forever grateful for what she did for me and my sons. I hope that life rewards her richly.

Ben's webpage

 

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Huge hugs Tertia. Time is indeed a healer. Though my pains were not even close to what you went through (cancer at 24 and an early miscarriage), I can now talk about it without a breakdown most of the time.

You're an amazingly strong person for all you had endured. *hugs*

I am fortunate not to have lost a live baby, but it does seem to me that the sensitivity shown to the parents at the time of the loss of a child, be it stillborn or a later death, can have a huge impact on how they cope with the death later. I know a couple whose only daughter was born anacepahlic 36 years ago, and died after half an hour. They were not permitted to see her, hold her or even have photos of her. The only photo they have is an x-ray taken shortly before confirming the babys problems, which the photo their gp had to fight to obtain. The parents' grief is entirely unresolved, the mother in particular still suffers daily from the loss of that child, despite the time that has passed and their four healthy sons. I just feel that if she had been at least allowed to hold her baby and say goodbye, she might be more at peace now.

It is a shame that your nurse is leaving the profession- not all medical staff are that sensitive.

You got me crying at 8:30 in the morning. This is such a beautiful post. The nurses at the NICU were the only silver lining to that experience and we still go back at least once a year to visit them at the NICU reunion (the hospital holds a carnival for all children who have stayed in the NICU) and then any time we're at the hospital for another appointment. I still get emotional when I see them. I don't know if they have any idea how much they meant to us and how grateful we are for not only the care the twins received, but how they took care of us emotionally. You've inspired me to write the NICU nurses another letter today.

I know that you are past the searing heartache, but I still cannot imagine how you cope with the loss of a child. I look at my boys (and my girls) and think about how each of them were born early and the risks involved - and how unbelievably lucky we are and I thank God (which I typically don't do). I credit the doctors and nurses involved in my and their care both before and after they were born...amazing what a difference those people can make.

We also had an amazing nurse who helped us through the scary and difficult first days. The nurses at our hospital only work 3 - 4 days in a row, but somehow that same nurse managed to be on shift for all the major developments with our daughter. She was the one who called me and told me that they were moving our little girl from the level 1 NICU to the level 2 NICU. She wished us all the best and I thanked her profusely for all her help. She was so excited that Maya had graduated and was a little closer to going home.

After a couple more weeks in the level 2 NICU we were finally cleared to take our daughter home. When arrived at L2 NICU for our meeting with the doctor's prior to Maya's release we were shocked to find our original L1 NICU nurse there. She said it had been close to 2 years since she'd been given a shift in L2, but by a total fluke there she was on Maya's release day. It was a very special gift to have her there to share it with us.

omg. I had tears in my eyes.

My mother lost two pregnancies: one a little girl with a nuchal cord, and a boy born at 28w. Both losses took place 35+ years ago, when women were basically put under for delivery. She was never able to hold her baby girl, but she thinks she may have gotten a glimpse of her - after forty years, she still dreams about the little girl's face.

I'm so glad you are able to remember some positive things about such an awful time.

am crying just reading your beautiful post. thanks for sharing.

*sobbing*

I'm glad you were able to reconnect with this young woman. I hope you keep in touch - perhaps she will reconsider her career choices, and resume her position in the medical field. Compassion like hers is in short supply.

Ben will never be forgotten.

Speaking as a nurse, I feel I can say without a shadow of a doubt that the fact that you remembered her and offerred her those kind words was a gift she will never forget.

People are busy, obviously, when there are health issues with a family member. Nurses don't expect or even aim for thank you notes and appreciation so when it does come, especially from a patient you felt very connected to, it is very touching. I have every note of appreciation I ever received.

I adored my NICU nurses. Give me a nurse any day, over a doctor. Some doctors, I should say.

I am so glad you had such an amazingly caring NICU nurse for your experience. Sadly, I had an opposite experience with one of them who I will always remember as hard and mean. The world needs more nurses like yours, particularly in the NICU where parents' hearts are just as fragile as babies' bodies.
I cried when I read your special post about this young woman. {{{{{{{{HUGS}}}}}}}}}}}}.

I have just looked at Ben's site again, something I havent done since I found your site over a year ago. And it was so much harder now I am a mum myself - he was such a perfect boy, I cant imagine what you have been through.

Looking at the close up picture, you can see so much of Kate and so much of Adam.

I'm so glad that the nurse emailed you, and you had the chance to thank her. What you wrote was truely beautiful. x

Once again you have touched my heart with an entry. What a wonderful story about that nurse. How wonderful for her that she was able to see you go home with a little son who was healthy after your first experience. It doesn't surprise me in the least that she would remember that. She sounds like she was a very special person and a wonderful nurse. I'm sorry she' not working as a nurse anymore, but I hope that her reasons are happy ones (children of her own?). We need more people like that in the nursing profession.

Just an aside.... when my mom had each of her 3 children, the same nurse was the one to check each one of us out of the hospital. She even came in on her day off to check my sister out of the hospital. In both my sister's and my case we had been in the hospital for a month (both of us low birth weight babies, me premature, my sister with health issues). I always thought that was such a sweet story too. I need to ask my mom what the nurses name was again and record it. Granted that was 40+ years ago.

What a beautiful post, Tertia. I'm sitting here crying from reading it and just had to call to check on Jake, who is staying with his uncle for the weekend while I recover from dental surgery and TJ is out of town. I can't bring myself to go to Ben's website just yet, but I will sometime soon. Thanks for sharing. How amazingly lucky for you to have this amazing nurse to take care of your precious babies in both situations.

Oh Tertia - I'm brought back to this moment right along with you and it's hard to think of without tears. What a wonderful woman that nurse was - how sad she's no longer in that profession.

Thank you for your blog, really and truly I am sure there is a reason I found you!
Losing a child is probably one of the hardest things a person can go through. I know what you mean when you say it gets easier, but I still have moments of stabbing pain when I think about it--even holding my beautiful newborn girl in my arms as I type this, thoughts of my son are always with me and my husband.
Tertia the impact of your writing is far reaching, don't spend another minute doubting how you are changing and affecting the lives of others. Our time here is much to short--if you have made one life easier, or made one person not feel so alone it's all worth it.
And you have done that for me! :)

oh Dear Tertia; I am so sorry for what you have been through. I am fighting tears right now for you, Marko and darling little Ben. I am so very glad you have dear little Kate and Adam now. You so deserve them. Sending you great big hugs.
xxxx

Please stop making my cry at work! If I had my own office it might be a bit better, but I am almost in a passageway, so I have to turn my head away from approaching people!! What an image to paint!! Chat soon, kid!!

Dear Tertia

I.Had.No.Idea

I bought your book. I had been putting off reading it, waiting for the perfect moment to start reading it. Last night was the night. I read for hours, couldn’t put it down. I managed to read up until page 188. This morning I couldn’t resist, wanting to read further, but scared that I would not be able to stop reading and be late getting to school & work. Oh, what a wonderful book. Thank you so much for writing this book, you have no idea what it is doing to me. I cried so much last night; it brought back so many memories, things I had forgotten about my own story. I also laughed on a few occasions, but the main thing was the fact that I recognised myself so much in your story. I have however never had a tragic experience like you had with your beautiful son Ben and cannot even try to understand what that feels like. I always felt that I know you, even referring to you as my friend from Cape Town (is that OK?), but I never knew the details, the way you describe them in your book. How do you manage to remember everything? I had 4 IVF’s and although I remember the figures (blood tests, eggs retrieved, transferred, etc..), I can not remember all the emotions. Your book brought back a lot of memories, probably pushed to the back of my head, but obviously still there.

I feel tired today, because of the late hours reading it and the crying, but I know that when I pick your book up again later today, I will finish it.

Thank you dear Tertia.

X Pascale

How wonderful that she remembered you in such a special way, also. I'm glad she was there for you.

Tertia,

You make me cry... especially when I read about your beautiful son, Ben...

You probably don't know that your blog, your writings, your thoughts have touched so many hearts. And that includes mine.

This is a very beautiful post... and I don't want to miss it. I really love it. Please come over to my blog, because you are my BLOG OF THE WEEK, Tertia.

Thank you, thank you... for sharing this with us.

Love,
Adwina

Tertia, you amaze me. At how you have coped with everything that has happened to you. Your life now. Ben. The twins. Just everything.
It's so special to know that she was touch so deeply by Ben

love you.

Oh Tertia, you have me crying now....thinking of you my friend ...and Ben of course.

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