Note - I wrote this at the end of 2019 and somehow it never posted. I came on today to write a new post and it was there...in full draft form! Oh well! Best of intentions! I did back date the post so I appears I published it on time!
So it's the end of 2019. It was a pretty good year. It had lots of ups including our first family vacation (that actually started at the end of 2018 and had us away for New Years) and a few downs including watching some family members cope with unexpected loss and watching my own in laws come to another stage in their lives and, eventually, live apart for the first time in 65+ years. I came across this article the other day and decided I would like to reflect on 2019 more than focus on goals for 2020. It's not that I don't want to focus on the future but I think you can't go forward if you don't remember where you've been and what you've learned there then going forward is going to be a very slow process.
1. What makes this year unforgettable?
In 2019 we took our first family vacation and I got to see the world through my kids eyes in a way that I never had. Their amazement at places like The Grand Canyons (even though it was all covered in snow) and cacti was really awesome!
2. What did you enjoy doing this year?
Getting back to daily workouts and feeling the energy that comes with hard earned sweat was likely the thing I enjoyed the most this year. It became something I craved. So much so that even while on vacation in the summer I got up early to go for walks and on the only night I came home mid vacation I set my alarm to get up to work out!
3. What/who is the one thing/person you’re grateful for?
Not a who but a group of who's...whom???? My family. Without them I would have no idea what my purpose is. While I realize that life can change in a heartbeat and anything could happen to 'my purpose', but I know that my family is my greatest mission field and my greatest purpose in life right now.
4. What’s your biggest win this year?
Without getting into to detail, late this year I finally came to place where I could draw a line in the sand on some areas of my life that I wasn't willing to compromise on and to another person I was able to voice that their lack of communication was very hurtful and threatened to destroy relationships. While I don't know if my courage to voice these things would spark change, I do know that a weight lifted from my shoulders and the burden of keeping it inside for years was gone.
5. What did you read/watch/listen to that made the most impact this year?
I finally watched The Shack and then reread the book. So much of what I believe about God was expressed in that book and movie. It was wonderful to feel like a famous movie/book 'got me'! Now if only I could get to blogging through the study guide I bought! Maybe a goal for 2020!
6. What did you worry about most and how did it turn out?
My in laws, their health, where they would need to live...all definitely things that consumed the worry spaces of my brain. We, as a family, were definitely working as a team, which was so awesome to see, and we learned that there was much to learn about the affects of health on aging, that things aren't always as they seemed, that the best laid plans would sometimes go astray. In the end we learned that the thing that worried us the most concerning long term care planning was something that wasn't even on the radar, and that being forced to live apart would actually be the best thing for both of them.
7. What was your biggest regret and why?
My biggest regret of 2019....not trusting myself enough, not loving myself as God made me enough, not trusting God enough. I need to call on Him more, ask him for wisdom, for confidence, for self love more. I am vowing to lean on Him more in 2020 and to see my heart more and celebrate my successes, not criticize my failures.
8. What’s one thing that changed about yourself?
I don't feel like I changed much, feel like there's so much more to do but I think I can at least feel like I began to change my habit of sitting back and not speaking up to some important people in my life about things they do that hurt me and those I love the most.
9. What surprised you the most this year?
I was going to write about something that was a disappointing surprise that relates to point 8 and 4 but I don't want to focus on the negative, on the disappointments. Instead I want to focus on a surprise that happened on the very day I last posted on the blog...on Cole's heavenly birthday. That day we went to Mt Sinai as we always do. Not only was I surprised with a beautiful card and touching gift but I was also shocked to learn that Dr. Ryan had actually said he could not fit a cheque presentation into his day on Dec. 13th, on his clinic day and asked for it to be rescheduled. When his assistant told him who the cheque presentation was with and why it needed to be that day he immediately changed his plans to fit us in. Surprising and very touching. I felt so valued and so touched.
10. If you could go back to last January 1, what suggestions would you give your past self?
Let go and let God. Just let Him breath into your life Jodie. Let Him fill you with the confidence and self love that you lack. Let Him guide you instead of you trying to figure it out. Trust Him!
And now off to 2020 I go. As am typing this I am listening to KLOVE online and hearing the song Confidence. May this be my mantra for 2020!
Give me faith like Daniel in the lion's den
Give me hope like Moses in the wilderness
Give me a heart like David, Lord be my defense
So I can face my giants with confidence
I'll face my giants with confidence
Tuesday, December 31, 2019
Friday, December 13, 2019
The Reality of 11 Years
The house is quiet this morning as I sit here writing my annual post, as I sit here thinking, remembering, feeling...and crying.
Other years I often have thought of and even wrote down part of what I want to say this anniversary day. Not this year. This year has been different. This year has been easier for some reason. We decorated the tree a few weeks ago and I hung all of Cole's ornaments on the tree without any tears. I've talked about him, about our journey and about TTTS so much lately and felt little sadness. It's been very interesting, like a grief maturity, and I wondered if this year's anniversary would be different too, not so hard, not filled with sobbing as I remember, as I feel.
Going to sleep last night I knew that wouldn't be the case because for the first time ever in these 11 years, I had vivid flashbacks of the weeks and weeks of my twin pregnancy, of telling people I was pregnant, of sharing ultrasounds, of shopping for our double stroller for weeks on end (incidentally the only thing we'd purchased by 23 weeks when diagnosis happened....and incidentally one of the things I thought of as I lay in the room where the news was delivered to us...how I never wanted to see that stroller again). I remembered so many things all at once and it seemed to end with remembering going to bed after having the surgery so full of fear and yet of optimism too.
So I decided this morning that I just needed to remember and to feel. I read back through this account of that day and sobbed and then just sat back to remember and to feel...
And literally it was a memory of a physical feeling that triggered such a strong emotional reaction. I remember waking up that morning, likely at a similar hour to this. It was quiet and dark and I couldn't sleep any longer. And then I felt it. Strong and powerful kicks from the left side of my uterus, from Cole's side of my uterus. I was filled with joy, with a reassurance that he was alive and ok.
Hours later I would learn he wasn't ok, that everything was not ok nor would it ever be that version of ok again. I learned that Cole's heart was not beating and I knew that my heart would never be the same again. I lost a bit of my mind in those moments, understandably so, but I also lost a piece of my heart and a piece of myself that I know I'll never get back.
The memories of that day are so vivid....the words the doctor said, Geoff crumbling into the wall, me rolling away from the doctor and trying to curl up and let the wold swallow me up. The memory of feeling like my heart just broke into a 1000 pieces and that I could not go on.
And this morning it was the memory of that strong kick, that final goodbye from my sweet son Cole that did me in. My hands rubbed my stomach, remembering that kick and almost begging it to happen again, to have him kick again and then keep on kicking in that time, in the days to follow in 2008 so that the course of my life would have changed, that his life wouldn't have ended on Dec 13th and instead I would have felt his kicks for weeks to come and welcomed him alive and kicking with his twin brother some 11 weeks later.
But that's not my reality and the reality is, the reality of 11 years without my precious son, is that, despite that last few weeks and even days being much easier than other years, today is hard. Today I miss my son. Today I wish I was soon planning to wake up my twins for school instead one of them for our annual trip to Toronto to honour the other one.
My dear, sweet Cole....oh how mommy misses you. I miss all that should have been and I miss all that could be. I feel so lucky to be your mom, to know you and feel you every day. I wish you were here and yet I know you are...in my heart and in all that you inspire in all of us. Thank you for being you, for giving us all you have.
I love and miss you sweet boy...today, tomorrow and forever.
Other years I often have thought of and even wrote down part of what I want to say this anniversary day. Not this year. This year has been different. This year has been easier for some reason. We decorated the tree a few weeks ago and I hung all of Cole's ornaments on the tree without any tears. I've talked about him, about our journey and about TTTS so much lately and felt little sadness. It's been very interesting, like a grief maturity, and I wondered if this year's anniversary would be different too, not so hard, not filled with sobbing as I remember, as I feel.
Going to sleep last night I knew that wouldn't be the case because for the first time ever in these 11 years, I had vivid flashbacks of the weeks and weeks of my twin pregnancy, of telling people I was pregnant, of sharing ultrasounds, of shopping for our double stroller for weeks on end (incidentally the only thing we'd purchased by 23 weeks when diagnosis happened....and incidentally one of the things I thought of as I lay in the room where the news was delivered to us...how I never wanted to see that stroller again). I remembered so many things all at once and it seemed to end with remembering going to bed after having the surgery so full of fear and yet of optimism too.
So I decided this morning that I just needed to remember and to feel. I read back through this account of that day and sobbed and then just sat back to remember and to feel...
And literally it was a memory of a physical feeling that triggered such a strong emotional reaction. I remember waking up that morning, likely at a similar hour to this. It was quiet and dark and I couldn't sleep any longer. And then I felt it. Strong and powerful kicks from the left side of my uterus, from Cole's side of my uterus. I was filled with joy, with a reassurance that he was alive and ok.
Hours later I would learn he wasn't ok, that everything was not ok nor would it ever be that version of ok again. I learned that Cole's heart was not beating and I knew that my heart would never be the same again. I lost a bit of my mind in those moments, understandably so, but I also lost a piece of my heart and a piece of myself that I know I'll never get back.
The memories of that day are so vivid....the words the doctor said, Geoff crumbling into the wall, me rolling away from the doctor and trying to curl up and let the wold swallow me up. The memory of feeling like my heart just broke into a 1000 pieces and that I could not go on.
And this morning it was the memory of that strong kick, that final goodbye from my sweet son Cole that did me in. My hands rubbed my stomach, remembering that kick and almost begging it to happen again, to have him kick again and then keep on kicking in that time, in the days to follow in 2008 so that the course of my life would have changed, that his life wouldn't have ended on Dec 13th and instead I would have felt his kicks for weeks to come and welcomed him alive and kicking with his twin brother some 11 weeks later.
But that's not my reality and the reality is, the reality of 11 years without my precious son, is that, despite that last few weeks and even days being much easier than other years, today is hard. Today I miss my son. Today I wish I was soon planning to wake up my twins for school instead one of them for our annual trip to Toronto to honour the other one.
My dear, sweet Cole....oh how mommy misses you. I miss all that should have been and I miss all that could be. I feel so lucky to be your mom, to know you and feel you every day. I wish you were here and yet I know you are...in my heart and in all that you inspire in all of us. Thank you for being you, for giving us all you have.
I love and miss you sweet boy...today, tomorrow and forever.
Tuesday, December 10, 2019
Broken by Mourning to Find Hope Again
Yesterday a friend shared this experience and her epiphany from it and it resonated with me…
GRACEFULLY BROKEN!
I was in Dollarama last night and there was a lady and two kids behind me in the LONG line. One was a big kid, one was a toddler. The bigger one had a pack of glow sticks and the baby was screaming for them so the Mom opened the pack and gave him one, which stopped his tears. He walked around with it smiling, but then the bigger boy took it and the baby started screaming again. Just as the Mom was about to fuss at the older child, he bent the glow sticks and handed it back to the baby. As we walked outside at the same time, the baby noticed that the stick was now glowing and his brother said "I had to break it so you could get the full effect from it." I almost ran because l could hear God saying to me, "I had to break you to show you why I created you. You had to go through it so you could fulfill your purpose." That little baby was happy just swinging that "unbroken" glow stick around in the air because he didn't understand what it was created to do which was "GLOW". There are some people who will be content just "being" but some of us that God has chosen, we have to be "BROKEN". We have to get sick. We have to lose a job. We go through a divorce. We have to go through so call friends talking behind our backs, people who try to break your character all while smiling in your face, but GOD! When we have to bury our siblings, parents, best friend, or our child because, in those moments of desperation, God is breaking us but when the breaking is done, then we will be able to see the reason for which we were created.. so when you see us glowing just know that we have been broken but healed by his Grace and Mercy!!!
Sometimes we are totally happy on our journey through life, totally unaware that we aren’t living our best life and that there’s so much more we could be doing. We’re happy carrying around our unbroken glow stick and think we’ve got this perfect life, that we’re right where we need to be. And then our life’s rug gets ripped out from under us. We lose a loved one. We or someone close to us gets seriously ill. We lose a job. We get divorced. Our house burns down. We get in a car accident…. The list could go on and on. Suddenly we are just broken beyond anything we can comprehend and we don’t know how to put ourselves back together. We can try on our own to get through it, and those without faith might appear to have done that. But my feeling is that it’s God who puts us back on the right track. As my friend said, you can almost hear God saying, ‘I had to break you to show you why I created you. You had to go through it so you could fulfill your purpose’. It’s awful and it hurts but she’s right. When the breaking is done, then we will be able to see the reason we were created. When the breaking is done, we can see the purpose that was to come from it, the purpose God has for us.
Today I was struck again but this same idea as I read one of my devotions and amazed at God’s impeccable timing.
Isaiah lists powerful ways that the Lord will bring hope and healing to us. Which have you personally experienced?
This was part of the scripture they referenced....
He has sent me to tell those who mourn that the time of the Lord ’s favor has come, and with it, the day of God’s anger against their enemies. To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the Lord has planted for his own glory.
Isaiah 61:2-3 NLT
In this week of memories, of reflection on the time where my mourning began, where I began to learn about the hardest kind of grief and from there learned about the best kind of hope... yes, definitely God's impeccable timing for this devotion. There were other powerful ways that Isaiah listed as ways God would bring healing and hope but there is no way more powerful than what I’ve learned through mourning, through loss, through the brokenness of losing a child. For all who mourn, he will give a crown of ashes, a joyous blessing, praise instead of despair. I had to be broken to find this hope but wow what a hope it has been and continues to be.
Today marks the anniversary of my final day of innocence, of naivety, of carrying my unbroken glow stick and not knowing that I could not get the full effect of my life and my purpose, I could not find my hope, without being broken and without knowing loss, grief and mourning.
Today I celebrate my glow stick that shines bright, broken, with the full effect!
GRACEFULLY BROKEN!
I was in Dollarama last night and there was a lady and two kids behind me in the LONG line. One was a big kid, one was a toddler. The bigger one had a pack of glow sticks and the baby was screaming for them so the Mom opened the pack and gave him one, which stopped his tears. He walked around with it smiling, but then the bigger boy took it and the baby started screaming again. Just as the Mom was about to fuss at the older child, he bent the glow sticks and handed it back to the baby. As we walked outside at the same time, the baby noticed that the stick was now glowing and his brother said "I had to break it so you could get the full effect from it." I almost ran because l could hear God saying to me, "I had to break you to show you why I created you. You had to go through it so you could fulfill your purpose." That little baby was happy just swinging that "unbroken" glow stick around in the air because he didn't understand what it was created to do which was "GLOW". There are some people who will be content just "being" but some of us that God has chosen, we have to be "BROKEN". We have to get sick. We have to lose a job. We go through a divorce. We have to go through so call friends talking behind our backs, people who try to break your character all while smiling in your face, but GOD! When we have to bury our siblings, parents, best friend, or our child because, in those moments of desperation, God is breaking us but when the breaking is done, then we will be able to see the reason for which we were created.. so when you see us glowing just know that we have been broken but healed by his Grace and Mercy!!!
Sometimes we are totally happy on our journey through life, totally unaware that we aren’t living our best life and that there’s so much more we could be doing. We’re happy carrying around our unbroken glow stick and think we’ve got this perfect life, that we’re right where we need to be. And then our life’s rug gets ripped out from under us. We lose a loved one. We or someone close to us gets seriously ill. We lose a job. We get divorced. Our house burns down. We get in a car accident…. The list could go on and on. Suddenly we are just broken beyond anything we can comprehend and we don’t know how to put ourselves back together. We can try on our own to get through it, and those without faith might appear to have done that. But my feeling is that it’s God who puts us back on the right track. As my friend said, you can almost hear God saying, ‘I had to break you to show you why I created you. You had to go through it so you could fulfill your purpose’. It’s awful and it hurts but she’s right. When the breaking is done, then we will be able to see the reason we were created. When the breaking is done, we can see the purpose that was to come from it, the purpose God has for us.
Today I was struck again but this same idea as I read one of my devotions and amazed at God’s impeccable timing.
Isaiah lists powerful ways that the Lord will bring hope and healing to us. Which have you personally experienced?
This was part of the scripture they referenced....
He has sent me to tell those who mourn that the time of the Lord ’s favor has come, and with it, the day of God’s anger against their enemies. To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the Lord has planted for his own glory.
Isaiah 61:2-3 NLT
In this week of memories, of reflection on the time where my mourning began, where I began to learn about the hardest kind of grief and from there learned about the best kind of hope... yes, definitely God's impeccable timing for this devotion. There were other powerful ways that Isaiah listed as ways God would bring healing and hope but there is no way more powerful than what I’ve learned through mourning, through loss, through the brokenness of losing a child. For all who mourn, he will give a crown of ashes, a joyous blessing, praise instead of despair. I had to be broken to find this hope but wow what a hope it has been and continues to be.
Today marks the anniversary of my final day of innocence, of naivety, of carrying my unbroken glow stick and not knowing that I could not get the full effect of my life and my purpose, I could not find my hope, without being broken and without knowing loss, grief and mourning.
Today I celebrate my glow stick that shines bright, broken, with the full effect!
Saturday, December 7, 2019
Awareness 365 days of the year
So today is World TTTS Awareness Day. It was started by one individual who walked through TTTS and felt a very strong desire to help others through this terrible disease. I believe, but I may not be correct, that it is the birthday of her twins... One who celebrates here on Earth and one who celebrates in heaven.
And I respect this day, I respect the month of awareness that she has created and the desire for awareness to be spread.
Personally, however, I won't reserve my spreading of awareness to one day or even one month. This disease affects lives every single day. There's much that has been learned, especially in the last five years, about this disease but there's still much to be learned. While the doctor’s who treat it are often actively researching, attempting new procedures, working together to improve surgical methods and diagnostic testing, it’s the parents who’ve struggled through it, who’ve worried, cried and mourned, who can push for things to improve with a passion no doctor can even really, truly, understand. And it's those parents who can impact the lives of the yet undiagnosed, the future babies. Those parents are passionate and they're part of communities where mono di parents hang out. They run support groups online with parents who just found out that they are expecting mono di twins. Those parents are sponges, wanting to know everything they need to know, wanting to be the best advocates they can for their unborn babies. And that's where a parent who has been down this path can really make an impact but that can only happen if they're actively spreading awareness all year round. Some of my closest online friends, and I guess myself included, are incredibly passionate about learning what we can and sharing what we know. We reach out to doctors to learn information and in turn share that information with the rest of the TTTS community and many of us even share bits of information that we've learned with the doctors we are close with who were part of our own team.
We share the research, we share statistics on certain doctors and certain treatment centres so that those who are newly diagnosed are going to the right place, the best place, to help save their babies. We are passionate about saving babies and that passion exists 365 days of the year.
But TTTS Awareness Day or month and even those 365 days of the year that many of us are passionate about, cannot be just about awareness for those newly diagnosed or those to be diagnosed in the future. It also has to be about creating an awareness that support is available. It has to be about creating an awareness that you are not alone. There must be an awareness shared that you will get through this and that these new online friends will walk this path beside you.
So make those 365 days count. Walk through each day beside someone who needs your help. Walk each day in honour of your children. Take the steps that maybe they didn’t get to take through this amazing way of honouring them.
That is what awareness encompasses to me.
If you would like to make a difference in TTTS support in Canada or in fetal interventions across our entire country...or just want to offer my family your support, love and help us honour our sweet heavenly son, please consider donating to our annual event. We will be traveling to Toronto on Cole's heavenly birthday, Friday, to make a presentation to Dr Ryan and we'd love to include YOU in this presentation.
https://mountsinaihospitalfdn.akaraisin.com/PersonalPages/Participant/Home.aspx?seid=6777&pid=2985485&mid=66#.XYKZB2mRqGM.facebook
Friday, December 6, 2019
The Unintentionally Oblivious...will they ever get it?
So, as some of you may know, December is TTTS Awareness month. It's always a time when some TTTS groups on social media seem to be very active, heavily bombarded with messages and photos, just a very active presence of many members.
Half of the groups I belong to are strictly for those who have lost one or both of their twins. The other two groups are for general support.
This week in a group that I'm a member of, though not a group I help with or am very active or involved in, there seems to be a huge bombardment a photos of survivors. And I get it. I get that in this month of awareness we want to celebrate those who successfully fought this battle and won.
But looking at those photos bothered me. Not that it bothers me to see photos of survivors, not at all. It bothered me that in this group that should be there to support everyone, there was this huge presence of healthy living children and a large gap of stories and photo tributes about/for babies who did not win their fight. And so I posted this photo that I created and this post.
This is a photo tribute to my boys Cameron and Cole. Cameron blesses us with his energy, zest for life and deep emotions daily. Cole watches over us from above and is always with us, guiding us, motivating and inspiring us.
I've been thinking about what to post in this group all day. It's been sitting heavy in my heart because there are members of this group who have no photos to share, have no survivors to celebrate. It's the side of TTTS that all too often is overlooked and perhaps even kept from the newly diagnosed and that's such an injustice, so unhelpful in my opinion.
We need to celebrate that we made it through this hellish journey and found joy again, found hope again, made forever friends, found a side of ourselves we didn't know we had. We need to celebrate that we survived!
All of us...no matter what our outcome is and if we have photos to share or not.
And it was well-received, with some supportive comments. I had really hoped that it would make people think about posting more photo and encourage more people who lost to post something.
But the photos continued to fill this group and very few of them were photos of just one survivor. They just seemed so oblivious of the hurt that these photos can cause, of the divide they create between those who 'won' and those who 'lost'.
And so I posted this post
Today I'd like to encourage those with a TTTS angel, a child who lost their fight to this dreadful disorder, to please share a tribute photo to them. They deserve to be honored and celebrated too!
with these pictures
in hopes that other families who had lost one of their or both of their babes would share and celebrate the journey that they had taken. It received about half of the likes and reactions that some of the other posts received and no one followed suit.
Now don't get me wrong, there were a few posts from people who had one survivor but no one seemed to want to post any sort of tribute to their baby in heaven. And it really made me think about it. Why are we reluctant to share this? Why are so many people so eager to share photos of their healthy living children, so eager that the posts that have to do with loss seem to be pushed further and further down the wall?
And I think I figured out something. For so many who have suffered a loss feeling welcome can be hard. Reminders of what could have been, what should have been, are really hard to handle at times. When you don't feel comfortable or even welcome then you tend to retreat. And so what I realized about this group and a few others I've been in over the years....there aren't very many loss families there. They left. They don't feel welcome, supported, like they have a purpose.
Half of the groups I belong to are strictly for those who have lost one or both of their twins. The other two groups are for general support.
This week in a group that I'm a member of, though not a group I help with or am very active or involved in, there seems to be a huge bombardment a photos of survivors. And I get it. I get that in this month of awareness we want to celebrate those who successfully fought this battle and won.
But looking at those photos bothered me. Not that it bothers me to see photos of survivors, not at all. It bothered me that in this group that should be there to support everyone, there was this huge presence of healthy living children and a large gap of stories and photo tributes about/for babies who did not win their fight. And so I posted this photo that I created and this post.
This is a photo tribute to my boys Cameron and Cole. Cameron blesses us with his energy, zest for life and deep emotions daily. Cole watches over us from above and is always with us, guiding us, motivating and inspiring us.
I've been thinking about what to post in this group all day. It's been sitting heavy in my heart because there are members of this group who have no photos to share, have no survivors to celebrate. It's the side of TTTS that all too often is overlooked and perhaps even kept from the newly diagnosed and that's such an injustice, so unhelpful in my opinion.
We need to celebrate that we made it through this hellish journey and found joy again, found hope again, made forever friends, found a side of ourselves we didn't know we had. We need to celebrate that we survived!
All of us...no matter what our outcome is and if we have photos to share or not.
And it was well-received, with some supportive comments. I had really hoped that it would make people think about posting more photo and encourage more people who lost to post something. But the photos continued to fill this group and very few of them were photos of just one survivor. They just seemed so oblivious of the hurt that these photos can cause, of the divide they create between those who 'won' and those who 'lost'.
And so I posted this post
Today I'd like to encourage those with a TTTS angel, a child who lost their fight to this dreadful disorder, to please share a tribute photo to them. They deserve to be honored and celebrated too!
with these pictures
in hopes that other families who had lost one of their or both of their babes would share and celebrate the journey that they had taken. It received about half of the likes and reactions that some of the other posts received and no one followed suit.
Now don't get me wrong, there were a few posts from people who had one survivor but no one seemed to want to post any sort of tribute to their baby in heaven. And it really made me think about it. Why are we reluctant to share this? Why are so many people so eager to share photos of their healthy living children, so eager that the posts that have to do with loss seem to be pushed further and further down the wall?
And I think I figured out something. For so many who have suffered a loss feeling welcome can be hard. Reminders of what could have been, what should have been, are really hard to handle at times. When you don't feel comfortable or even welcome then you tend to retreat. And so what I realized about this group and a few others I've been in over the years....there aren't very many loss families there. They left. They don't feel welcome, supported, like they have a purpose.
And that is not okay. We need those stories, we need that reality. We need to share all the outcomes so that people are prepared for what can happen.
And so I will continue to do what I do. I will share both of my children and I will share our story over and over and over again. Hopefully someone who reads it will feel a lot less alone. And hopefully by sharing my story and being present in the groups where 'the oblivious' are present they will start to think about what they can do to help everyone.
And so I will continue to do what I do. I will share both of my children and I will share our story over and over and over again. Hopefully someone who reads it will feel a lot less alone. And hopefully by sharing my story and being present in the groups where 'the oblivious' are present they will start to think about what they can do to help everyone.
Thursday, December 5, 2019
I Am Who I Am
I am who I am because I've been where I've been.
Jodie Tummers 2019
Think about that for a few minutes. Just ponder it. It's very true for all of our lives, but I think it's especially true for those that have been through a crisis and taken what they've learned from that and used it for growth, for the betterment of those who take a similar walk, to create a legacy or tribute to the situation or person that was most closely involved in the crisis that you had.
A backstory on this quote of mine. Earlier this week I approached my supervisor to let her know that I will not be at work next Friday. For those who haven't looked at the calendar or don't know me very well, next Friday marks, as I told my supervisor, the 11th anniversary of what I call ‘the worst day of my life’. It's not a day that I can be at work. Especially not in the location where I work, where there are many, many sets of twins.
In my discussion with her, we talked about where I reside in my journey, how hard this day still is. While the conversation could have been taken two different ways, I've chosen to take it as a curiosity rather than a judgement on how you cope in the years that follow the anniversary of a very traumatic day.
I told her that I really felt that most of the 364 other days of the year I do really well with my grief, with my emotions about this event, this tragic loss. But this one day, this particular day, it's never, ever going to be okay. It's a lot better than it used to be, it's a day I've turned into something honouring, sort of a celebration, a day to honour Cole. But it's still a difficult day and it's a day I need to be surrounded by my family. It's a day the tears come easily, it's a day of memories and, still, a day of heartache.
But the rest of 364 days.... They're pretty amazing to be honest. And I feel really good about what I've done to honour Cole’s precious little life. I've taken the sourest of lemons and turned them into the sweetest of lemonade as per a quote from This is Us.
So as I said to her, I am who I am because I've been where I've been. And that is true.
If I had not taken this journey, if I had never gotten pregnant with mono di twins, I wouldn't be who I am today.
If I had never had TTTS, I wouldn't be who I am today.
If I had not suffered such a devastating loss of my dear sweet Cole, I would not be who I am today.
If I had not experienced many, many weeks away from the rest of my family, I would not be who I am today.
If I had not met hundreds of other parents walking path, I would not be who I am today.
If I had not learned what I could about this disorder, I would not be who I am today.
If I had not taken what I learned and used it to help other people, I would not be who I am today.
I am who I am because I've been where I've been.
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