Thursday, May 13, 2021

COVID and Grief

Have you even wondered why you are feeling so sad?  So unproductive?  So foggy?  Why you are feeling such a loss during the pandemic??  

Are you struggling as much as I am??

I think we all feel it in one way or another and at different times, and my good friend shared with me a podcast that made so much sense to me, and might for you too.  

David Kessler and Brene on Grief and Finding Meaning on spotifiy.  Take a listen and let me know what you think. 

It couldn't have come at more of a perfect time for me as many of you know I find Alyssa and Jessica's birthday, which was yesturday,  bittersweet.  

This podcast normalized grief for me.  I remember writing a post called the Warrior in Me many years ago and talking about the 5 stages of grief and how they were presented in my Twin Twin Transfusion bereavement package.  I was or had been through them all and still feel some of them.  Because there isn't really an end to grief as many of you know who have lost someone you love. 

These are very similar to the 5 stages of dying that Elizabeth Kubler Ross wrote about in her book Death and Dying back in 1969. 

Denial, Anger, Bargaining, Depression and Acceptance.  Many years later David Kessler, and Elizabeth cowrote Grief and Grieving and talked about the stages of grief being similar to dying, but how they are not linear, they are not a pattern or scaffolding.  As he said "these stages don't prescribe, but describe general patterns"  Because there is no 5 easy steps to what we feel when we lose someone, but they can help to normalize what we are feeling.  

David took it a little further after he lost his son pushing acceptance stage into a 6th step of Finding Meaning - individual and collective grief.  When we are going through a loss, we don't talk about what stage we are in, we may think about this later.  Although I felt the stages I didn't really look at them until later, I talked about how much I missed my daughter at the time.  

Because there really is no end to grief, it's so hard to accept our biggest losses so finding meaning can help us move forward.  Jessica's life mattered.   Finding meaning is not in her death but it is within ME and what I create from it.  This made perfect sense to me.  When she passed away, I wasn't grateful, I was angry and sad and hurt and felt crazy.  Getting out of bed was a chore, showering and going back to the hospital to be with Alyssa were big wins at the time.  Spending time with Emily was hard.  

But in time, after I let the pain sink in, I had to feel it all - then I felt gratitude that I was able to meet Jessica.  I was able to hold her, hold both of my girls together in my arms when things could have been different.  Gratitude I had her for  that month.  I felt gratitude for the nurses who cared for our girls and for us.  They were our rocks.  Gratitude for the other mom's in the NICU who listened to me and helped me get through some of my darkest moments.  

Then I found meaning in her short life, to do something to hopefully bring people together and to help other families who are in similar situations at the IWK by starting the IWK 5K - In Memory of Jessica.  10 years was amazing, and it helped me with finding meaning.  And then it stopped.  And I struggled for the past two years because I felt like I wasn't doing enough.  I always want to do more.  

So now bring us to COVID-19.  David talks about grief as being the death of something, whether it is our loved one, our marriage, our job....or the collective loss of the World as we knew it.  

No wonder we are feeling this heaviness, we cry out of the blue and don't seem to be as productive as we used to be.  The world we were used to is gone.   Soon we will be reminiscing about life before the pandemic.  Remember when we used to shake hands with everyone when we first met?  Remember how we hugged our friends and our neighbors when we were excited to see them? Remember blowing out your birthday candles and not worried that your spit would go on your friends piece of cake?  We've had SO many losses.  Loss to our routine, loss of physical touch, loss of  dinner dates and social gatherings.  We often don't know what we have until it's gone.  I'm a touchy feely person, and love hugs and I touch my clients on the shoulder all the time or my friends to comfort.  This has been hard.  

So he talked about naming this feeling we are having so we can truly feel it.  Name it for what it is.  He also talked about the importance of not comparing your grief with others.  Which I think is so true with any loss.  I remember going to bereavement classes and I felt like I didn't fit in because although we had all lost I was the only one who had twins.  I felt like people in the group felt my grief was less then theirs because I still had a living child.  Don't compare your grief.  He talked about how the stats for divorce after losing a child was high, not necessarily just because of the loss but because we both grieve differently and it is challenging to fill up your partners empty tank when you are empty yourself.  

Keith didn't go to bereavement sessions and at the time I felt like he wasn't grieving enough.  That was so unfair of me.  Because we ALL grieve differently.  I cried, I ran, I was very public about my loss, and he held things in.  But there was nothing wrong with how he grieved it was just different.  And not I'm realizing I was judgy.  And as David says "Judgment demands punishment"  So when we judge someone, for anything really, we are going to hurt for doing that or we are hurting them.  It's a miracle we did stay together, because we were both on empty tanks.  But we found our way.  

Similarly we can't compare our losses with Covid in one area to the next.  My friend was telling me the other day she was talking to someone in Ontario for work who actually sounded happy to hear that Nova Scotia was in lockdown like the rest of the world.  Don't be judgy.  We are all going through this pandemic together and although some places are hit harder then other, we are all collectively feeling this loss in one way or another.  So instead of comparing who has it worst, lets support each other in what ever way we can.  I love his long spoon story.   

"The worst loss is always YOUR loss" .  So when we think about our kids who have not experience a whole lot of loss yet, missing school, their friends, their sports and social activities is THEIR worst loss.  So maybe we need to be a little more patient with our kids, try and understand how big of a loss they are feeling.  In our eyes, we know this is not forever, the pandemic will end, but to them what they are feeling is real.  

When Jessica first passed away.  I ran.  That's how I dealt with my grief.  I ran all the time.  We all need a way to deal with this grief we are experiencing.  And it is super challenging now when we can't socialize and help each other through it together because we all have empty tanks.  I've been injured since November and feeling like I need an outlet during Covid.  I haven't had the event to plan, and I haven't been running.  I'm a bit of a mess to be totally honest.  I NEED to run for my head.  So today I did just that.  I ran.  I ran hard, and fast, only for a couple of seconds, then walked, then did it again, many times.  Man I needed that more then I realized.  

What are you doing to help yourself or your friends/family to get through this?  

Saturday, June 3, 2017

Knowing where your money is going.

It's been a while since I wrote on this blog.  Today I was feeling inspired to write because of the Brigadoon Wine and Dash happening tomorrow.  

I love the idea of Brigadoon Village. It took several years of great ideas and fundraising to make this happen, but in 2011 they opened their doors for their first camp for kids with inflammatory bowel disease. They have several summer camps for chronic diseases such as congenital heart issues, epilepsy, lung disease, blind and visual impairments and many more... so that kids can be surrounded by other kids with the same issues. I think it's a wonderful idea. Take a look at their website - http://brigadoonvillage.org/camp-schedule/ Tomorrow is their 3rd Annual Wine and Dash which looks like a fantastic event, just wish they didn't schedule it the same day as our event, because I'd love to support this one too.

When we were in the hospital 9 years ago with our girls, losing my babies wasn't an option in my mind. They were born May 12th, 2008. They survived delivery at 25 weeks and were stable, although from multiple brain scans showing severe Periventricular leukomalacia and grade 3 and 4 bleeds and discussion with Dr Vincer, we knew 1 or both girls would have major disabilities. We were starting to prepare for this, and the wheels were turning in my head for running in a large event to help kids with severe disabilities, Brigadoon Village was not around then, because I remember looking into an event through the Sunshine for Kids which is for kids with severe physical disabilities or life threatening illnesses. That's all could think about...how can I help these kids, knowing that my daughter was going to be one of them.

But then things changed drastically, and Jessica was no longer stable. June 9th we found out Jessica wasn't going to survive without the oscillator (high frequency ventilator), and the medications was the only reason she was still alive. Life changing. Heart breaking. Devastating. We had accepted all the challenges we were going to face with severe cerebral palsy, from her brain damage, but it wasn't only that anymore. She had heart damage, she had severe lung damage and severe bowel damage and all of that together was too much. This was the first time in the Neonatal Intensive Care Unit, the thought of losing a child became a reality. We had to make the choice of a) keeping her alive on the machines, knowing that she is suffering, in pain and as the Dr said will eventually start bleeding out of all her organs or b) withdrawing care, but being able to control her pain level as care is withdrawn and stop her suffering. Both options sucked to me. And they still suck in my mind. We will never know if we made the best decision because we don't have a crystal ball, but we made the choice that our brain and hearts told us. And it really wasn't us making that decision as our nurse Sharla said...it was Jessica making that decision by not being able to fight anymore.





These pictures were the only pictures we had of Jessica and Alyssa together. They were too sick to take them out of the incubators together, but our amazing nurses gave us this opportunity on June 11th when we knew our time with Jessica was coming to an end. Imagine knowing your child is passing away and the privacy you have between the next incubator is a small curtain. The only family picture we have is without our whole family. Emily was so young and although she visited the girls, the visits were short because you can't tell a 15 month old to stay in one little area and not go visit all the other babies.

The redevelopment of the new Neonatal Intensive Care Unit will allow this. I would have loved to have a picture with my entire family. The new NICU will give you this privacy to allow your younger kids to have that space they need. You will have a door to isolate you from the rest of the world during difficult times. It sounds so small, but when I think back, it is so huge.

The IWK staff did everything they could at the time to support us and provide as much privacy as possible. We had a family room where Emily could come and stay, but we couldn't bring Alyssa out of the NICU because she wasn't well enough.





The pictures above were our last day in the parent room. Emily was giving Jessica kisses. I want everyone to know where their money is going by participating in our event. By supporting the IWK 5K - In Memory of Jessica specifically for the past 2 years - that $50,000 has gone directly to improving the NICU so families in the future will truly have the best care. What I love about the IWK, is they listen. They listen to the patients and the families on how to improve care and to provide the absolute best care. Because of all of you, things are happening. The rest of the money raised this year and every other year goes to the IWK Foundation which provides the necessary funds to continue to provide the best possible care with the newest equipment and research. Last year the IWK Telethon funded 2 CADD pumps for patient comfort to allow patients to control pain and comfort, leading edge technology stools for surgeons during complex surgeries, life saving equipment such as patient monitors to alert staff of vital signs and threatening conditions and stronger families by funding for loungers for a second family member to stay with their sick child.
I always want to say all of this at the event, but I don't have the courage, or the time, so like to share here.

The IWK 5K - In Memory of Jessica has many dimensions. We bring community together. We promote active living within our families setting a great example for our kids. We remember Jessica, and we really help Maritime families receive the best possible care, the care they deserve.

Friday, May 13, 2016

7th Annual IWK 5K - In Memory of Jessica

There are some things in life that will stay in my memory forever.  It doesn't matter how much time goes by, I will always remember my complicated Twin-twin transfusion pregnancy, multiple times going into labour and multiple times having it stopped.  The fear I felt everyday and also the hope I held onto.  I will always remember my delivery and the joy I felt knowing Alyssa and Jessica were alive.  I will always remember our long road in the NICU, the ups, the downs, and everything in between.  And of course I remember so distinctly our last day with Jessica.  It is so hard letting go of the people we love.  Especially little people who we really didn't have the chance to know, but the love and support we received from our family and friends will always be remembered.  

When Alyssa was ready to leave the IWK, I left with the feeling of despair, loss and great sadness. We made plans for two babies, but only one was coming home.  But I also left feeling love, hope and gratitude.  Love and gratitude towards the people.  The people who looked after our babies, and the people who looked after us.  I remember a lot of the medical information but I also remember the back rubs, the listening ears, the shoulder to cry on, the birthday cake for my 30th birthday, and the footprints made for our girls.  Besides the life saving duties...these little acts of kindness are so important and go a long way for families who are struggling. 

It is these acts of kindness along with all the care we received at the IWK that ignited the passion for starting the IWK 5K - In Memory of Jessica.  7 years later, $130, 000 donated, that passion is still there, but there is also a strong hope that we are making a real difference to help families like ours, so when they leave the hospital, the only feelings they have are love, hope, gratitude...and relief. 

The IWK 5K - In Memory of Jessica is to remember Jessica of course, but also it is to provide hope for all the survivors like Alyssa, and so many kids who have left the IWK happy and healthy.  

This year the IWK 5K – In Memory of Jessica is very excited to help fund a very special once in a lifetime project. We have committed to raising $50,000 to the redevelopment project in the Neonatal Intensive Care Unit (NICU). This donation will be made in memory of Jessica and a patient room in the new space of the NICU will be named in her honour. The NICU was the only home that Jessica ever knew, so it only seems fitting. 

This large donation is a combination of sponsor donations/promotions, registration fees, online donations, door to door canvassing, Westjet ticket sales, Wine Survivor donations etc.  Every dollar helps!

You do not need to be an elite runner to take part in this event, we welcome everyone of all ages and physical abilities.  Because it is for the IWK, we especially love our kids events (500m and 1K) and want it to be a whole family affair.  

Please join us, along with c100 FM and Izzy's Bagels at DeWolf Park on Bedford's beautiful waterfront June 5th at 9:30 for the 7th Annual IWK 5K - In Memory of Jessica!  Walk, run, skip...do it for yourself, and for all the kids who need and deserve world class care at the IWK.  




Register online: https://www.events.runningroom.com/site/?raceId=12888
Online Fundraising page:  www.iwk5k.kintera.org
for those who like to win great prizes! 
Follow us on facebook and twitter for updates leading up to the event.