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.
Thursday, November 28, 2019
Where Does Your Joy Come From
A few days ago some online friends and I were chatting as we tried to work through a problem in a group we're in. The topic of joy came up and it lead to a conversation online and then with my husband about how joy is connected to the trials of life and how our mindset can determine if we become selfless or selfish in the aftermath of a crisis.
We've all been there at some point or another...down a path of life that isn't what we expected, definitely isn't what we wanted and where retreating, rerouting or jumping off seems to be a far preferred path to take than the one in front of us. But we trudge through it and make our way to the other side. We sigh a deep sigh of relief to be through it and then we look around us and things look different. We look in the mirror and sometimes we don't recognize the person staring back at us. Many people feel unsure of how to go forward and emotionally they are struggling, emotionally there's a whole new path to take and it's not one they navigate well.
For those who came out of the crisis in what people would identify as having won, having beat the odds against them, the default emotion is most often erring on the side of positivity. They feel successful, proud, victorious, hopeful and filled with joy. Sometimes those emotions are wrapped in an awareness of gratitude and of graciousness, with a humble respect for those who took the same journey but didn't have the same positive outcome.
And sometimes that graciousness and humble attitude is missing.
And that's where my friends and I met in our chat group...at the point of realizing that sometimes people are so filled with joy at their own success that they develop a mentality that pushes the attitude, in the words of one of my friends (who does have a ‘success’ story), "Because I did it, you can too!" or "Everyone needs to be happy for me and my outcome because I am." It's a form of unaware selfishness. They do not look outside themselves, outside their bubble of success. They associate most with those who had a similar journey and similar outcome and are often highly offended by those who challenge the words they chose to use or the motives behind their presence or participation.
They can’t see that their attitude is so hurtful to those who long for this to be their story. They can’t see that posting photos of their surviving twins in a group where every outcome imaginable exists triggers a sadness in those who wish that their story had ended differently. And when this is pointed out to them, when they are asked to edit their post, always with an explanation of our desire to keep our group welcoming and comfortable for everyone, they will remove their post or even use words like ‘you are stealing my joy’, ‘you’ve made me feel guilty and uncomfortable’. To a loss mom who feels uncomfortable so much of the time this is pretty offensive.
It’s made me think of the reasons I have continued to be part of groups where so many triggers can be present. Triggers like photos but also success stories...stories of doctors who monitored their patients every 2 weeks and caught TTTS in time, stories of more serious situations at the time of diagnosis that still resulted in 2 survivors and sometimes even just stories from the mono di twin group that I help run that involve 2 babies being born healthy at full term. Why am I there? How much of my ‘joy’ is stolen from me by seeing these things?
And the answer is….NONE! None of my joy is stolen from me by these experiences because I have chosen to take my journey and use it to help others which in turn fills me with joy. Something I've always wanted to be with my presence in all the twin groups I am connected to is a 'proof that you can find hope in all situations', that you can find joy no matter what your outcome is. I’ve always wanted those newly diagnosed to see that no matter what happens, you will make it through this and you will find people who can relate to you and your journey, that you aren’t alone. I’ve always wanted those who don’t have the outcome they longed for to know that there are people out there who understand the heartbreak and have made it throught the darkest of times. Doing this, providing hope for others, gives me joy. Sharing Cole and Cam’s story with others gives me joy. Fundraising in Cole’s memory gives me great joy. Spreading awareness and helping others to understand the risks, empowering them through this awareness to seek the best care they can for their unborn babies gives me joy. Knowing that Cole’s journey, ultimately the outcome of our TTTS journey and essentially Cole’s loss of life was not in vain.
Last week I spoke to one of my favourite parents at my work and shared the line ‘either it makes you bitter or it makes you better….and I’ve chosen to have it make me better’. This can apply to so many situations in life but most especially to unexpected loss. I could have chosen, like others I’ve sadly encountered over the years, to live in sadness, regret, anger and hopelessness. Or I could choose to do what I’ve done and find a way to make the best, the most hopeful, the most joyful outcomes come out of our situation and in that, to find peace.
Something else that I really feel I must share is that, in my opinion, being part of a support group after the 'crisis' has passed and you aren't in 'need' of support has to include a mindset like what I mentioned above, or what is the point of you being there. I don’t mean to say that everyone who isn’t in the throws of a diagnosis or the early stages of coping after delivery or loss should not be present in a support group. By no means. There is no linear format to trauma or loss and let’s face it, no matter what your outcome is, a crisis like this is trauma and loss producing in some way. But a support group should not be there to build you up AFTER you’ve successfully overcome the crisis. To me that is a form of selfishness...perhaps unaware selfishness, but selfishness all the same.
So my message to anyone still reading this is to make life better, not bitter. To take all that life offers you and find a way, somehow, to find your hope again. Make your joy come from all you can do to help another person walk a path you once took. And in that the journey becomes so very worth it!
Saturday, September 28, 2019
Living in the Shadow of Loss
Have you ever thought that you are living in someone's shadow? Have you ever thought that you carry more baggage then you should have to, then is really yours to carry or wondered at the heaviness that seems to be a part of your heart and aren't even sure how it got there? Have you ever looked at someone else oh, maybe even your own children, and wondered how they are going to make out with the hand life has dealt them? I ask these questions because in the last few years I've had a few encounters with friends who've lost a child and, in watching their grief journey, in remembering our own grief journey, I often wonder about the siblings, especially the surviving twin sibling, and how our grief manifests in them.
Very early in my loss journey, probably within the first 6 months or so, a relative of mine contacted me with concerns about how much I talked about Cole. She spoke from the heart because she grew up under the shadow of loss herself. Her sister was killed in a car accident and life in their house was never the same again. Not surprising, how could life ever be the same after you lose a child or sibling? But her concern wasn't really about life not being the same but rather about my own children growing up feeling like they were being compared to their sibling that had passed away. It's sort of that comparison that can leave the person feeling like they're just not enough.
At the time I was a little bit hurt and yet really appreciated the wake-up call. It made me reevaluate how I presented things to my kids and it made me more cautious about how Cameron perceived his twinship.
I think I've done a good job but it's also been a 10-year project in the making. We've always been very cautious and how we talked about TTTS to Cameron and and how Cole’s illness, the cause of his death, is presented to him. For those of you who don't really understand what happened in TTTS, in mono di twins the babies share a placenta. As that placenta was formed, vessels grew across it connecting one baby to the other. In about 80% of the cases this is not a problem, although the babies are connected, the blood stays circulating within each baby side of the placenta and there are no issues. But in 20% of the cases something happens and the blood begins to shunt from one baby, the donor, across the placenta and into the other baby, the recipient. And that's what happened with my boys. Cameron was giving up blood and it was travelling across the placenta into Cole. It made his heart work harder, which made him urinate more, which increased the fluid that he was swimming in, which made his heart work even harder. I guess just a vicious circle. If we presented that to Cameron, in the wrong way, he could have grown up believing that he caused his brother's death but giving him his blood. Or if he'd been the recipient, the Cole in the situation, he could have grown up believing that he took so much from his brother that he caused his twin's death. So we've always been really cautious on how we presented it.
But that's not the only reason we were cautious. We also have never wanted Cameron to grow up thinking he wasn't enough. We've always wanted him to understand that he was his own person, and although he is a twin, he is not half, not a portion, not an incomplete part. He is an individual and he is awesome. And while we wish his brother was here, that doesn't take away from who he is and what he has become. We celebrate how awesome it is that he has a twin brother, that God chose them to grow together right from the start. But we stop it there. We separate it at that point and choose to celebrate the amazing gifts God gave each of our kids and make sure they know how proud we are of them. We let them know they are wanted, loved, cherished and valued individuals and members of our family. We want them to know that they are enough.
All children need to grow up feeling this way but I think it’s especially important when they are growing up after the trauma of losing a sibling...even if they were too young to remember. I am not saying that they should not grow up knowing about their sibling. The exact opposite actually. They need to know about them, to hear about them and feel the love you have for them so they can connect with them too. But they also need a healthy balance between life and death, between gentle loving reminders and constant connections. A balance between some tributes, photos and mementos and visual reminders in every room. A balance between their name spoken occasionally and their name being part of every conversation. A balance between celebrating the milestones they are achieving and grieving over the fact that their twin isn't their to celebrate this milestone.
The biggest reason for this, in my opinion, is because they need to feel that they are important, that they are enough, that you are delighted in them. They continued to live and build memories. Their life didn’t stop. They need to see that celebrated. They need to feel that celebration with all the positive, life giving energy you’ve got. Their photo wall gets to keep growing. Their shelf of things that remind you of them keeps expanding. They keep getting bigger and that means the shadow they cast should also keep getting bigger. They shouldn’t be growing up under a shadow and they won’t be if they are celebrated for the joyful blessing that they are. Let their milestones and achievements be theirs, let them have their birthdays, their first steps, their first haircuts, their first day of school or sports be theirs and theirs alone. In your heart you can weep for what should have been but our surviving twins and our surviving children need to feel celebrated without any shadows over them!
Friday, September 27, 2019
Who You'd Be Today...Who I'd be Today
Today is the 13th birthday of an online friend's twin boys. Only instead of celebrating with 'sweaty, fighting, confident, scrawny teenage boys' she went to the cemetery. Instead of their whole family celebrating these boys becoming teenagers together, her ex-husband went to the cemetery himself and she and a friend are taking her girls.
She wrote about how much life changed because of the hand they were dealt 13 years ago today. She wrote about about how much things changed for the worst 13 years ago today. She talked about how much things have changed and how much courage she has now after living life after loss. And she wrote about how different she is now, how life before and life after are just so different.
And as I read her post this song popped into my head.....
I've thought of this song often over the years because I do often wonder 'who' Cole would be today. We all do. We talk about it sometimes. Would he be talkative, loud and energetic like Cam or would he be more reserved. Would he live life as big as Cam or would he take a back seat to Cam's antics and sometimes dramatics? Maybe he'd be a deep thinker and feeler like Brycen. Maybe he'd have a rebellious streak like Zack. Who knows? I could spend a life time feeling wishful and wanting to know....but I turned most of that area of my brain off years ago. It just hurts too much to think of that sometimes but more than that, it doesn't do justice to the boy that Cole did become...the one who inspires passion, dedication, caring and a supportive nature in the family he left behind.
But that doesn't mean that songs like this don't cut deep.... read the words and think about someone you've lost far too early...
Who You'd be Today
Sunny days seem to hurt the most
I wear the pain like a heavy coat
I feel you everywhere I go
I see your smile, I see your face
I hear you laughing in the rain
I still can't believe you're gone
I wear the pain like a heavy coat
I feel you everywhere I go
I see your smile, I see your face
I hear you laughing in the rain
I still can't believe you're gone
It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today
Would you see the world, would you chase your dreams
Settle down with a family
I wonder what would you name your babies
Some days the sky's so blue
I feel like I can talk to you
I know it might sound crazy
Settle down with a family
I wonder what would you name your babies
Some days the sky's so blue
I feel like I can talk to you
I know it might sound crazy
It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today
Today, today, today
Today, today, today
Today, today, today
Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know I'll see you again someday
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know I'll see you again someday
Someday, someday
It's impossible not to feel some pain.
But now I want you read those lyrics again and think of yourself, the person who loved and forever lost a part of their heart when their loved one left them far too soon.
Do you wonder who you'd be today if it hadn't happened?
I know I do. Often. in difficult moments, I wish the old me could come back. The old me who was more innocent, less passionate, who wore her heart on her sleeve less. The old me who thought the friendships she valued would be there for life, the girl who thought she'd experienced the worst life had to offer when she lost her boyfriend to cancer, said goodbye to a special friend who died in a car accident, helped a special family she worked for say goodbye to their very special little boy. The old me who didn't get triggered by a variety of images, memories, smells, sounds and words.
I wonder who I'd be today more often than I want to admit. Sometimes it's with a sad heart when I think of all that got lost on that fateful day, of the girl who got left behind. I wonder about friendships that didn't survive the loss. Of a marriage that has never been the same. Of goals and plans that never got realized when priorities suddenly changed.
But then I also wonder if I would be who I am today, the person I am actually sometimes proud of, if my heart hadn't shattered that day. If I hadn't had to pick up the pieces of that broken heart and try to figure out how they could fit back together with a big piece missing, would I have appreciated my kids as much as I do and valued their uniqueness? Would I have found a way to put the feelings that come with loss on paper and been able to offer them as a comfort to others? Would I have a passion for helping others, would I care so much, invest so much of myself in being there for people I've never even met? I wonder if I would have ever gained the knowledge base about babies, pregnancy, complications, procedures, ultrasounds, doctors and clinics etc
Death tore the pages of life as I knew it away and, while I sometimes miss who I was, I love who I am. I live for the hope that salvation gives me, the knowledge that I'll see my son again in heaven. Maybe the old me will be found there too and then I'll be fully complete and whole. But since I don't know someday will be I will, instead, live for today and make the very best of what I have been given.
Tuesday, August 27, 2019
Inspirations and Legacies
About a week ago my extended family lost one their own in a tragic and unbelievable accident. This second cousin of mine, Amy, was a few years younger than me and grew up on the farm next door. In a community as small as the one I grew up in, it was inevitable that you had cousins in your class, cousins on your bus, cousins in your church, cousins on your sports team....cousins everywhere.
But given I left that community over 25 years ago, it's also inevitable that you don't speak to most of these second cousins for years and years. And while I did see many of them a few weeks ago at our town's homecoming reunion that happens every 10 years, I didn't actually talk to anyone from this branch of the family. But that doesn't mean we don't stay somewhat connected (thank you facebook) nor does it mean my heart doesn't hurt for all of them...her kids and husband, her parents, her siblings and all her aunts, uncles, cousins and her grandma....the last matriarch in that generation of the family tree.
I found out she passed when I saw this photo posted by her sister and then read all the comments of condolences, and, well, shock. No quote could be more fitting to this situation than this one. No one could have ever predicted this happening but something I heard yesterday when I went to her visitation made me wonder if maybe she did sense life was about to change.
You see her dad made a point of sharing with me and my parents that just two days prior to her death she had a deep and spiritual conversation with him. She told him that she had such a sense of peace and contentment in her life right now. She told him that she didn't go to church often any more but that almost every Sunday morning she would go for a run or a walk and she'd talk to God. She said she felt like her life was exactly where God wanted it to be right now and she was so content with everything, so at peace. His eyes met mine as he said that and I was filled with such a sense of peace too. But more than that, I was filled with words to share. I shared with him that I felt God gave her that moment with him and that those were the words he needed to hear and the memory God wanted him to have at that moment. He had no idea that he didn't have much time left with this oldest daughter of his but in that moment he was given such a gift from her.
And as I shared those words with him it became my turn to give him a hug and offer my words of condolences. I found myself overcome with tears as I hugged this dad who was missing his child so much but I had no idea that I was about to be moved to tears even further. Her dad stepped back slightly from me and looked me in the eyes and he said "Don't stop doing what you do for others. Don't stop sharing your heart. Don't stop helping other people the way you do. I read everything you share online and how much you put your heart out there. Don't stop that. People need it, need you, more than you know."
Wow. Just wow.
He went to tell me that so many people had shared with him the impact his daughter had on their lives and he was sure she had no idea what an inspiration she was. She changed lives by sharing boldly and by helping others and he told me that I do this too. He reminded me again to not stop being me, to not stop sharing what's on my heart because I just don't know who needs to hear it.
It made me realize that we just don't know. We don't how much we are impacting others. We don't know who hears our words or reads our thoughts. We don't realize that so much of what do in life impacts others in ways we may never hear about. I don't think when I write a message of support or write a blog post of the impact it may have. I may do it to help other people sometimes but often I just start writing, like I am today, without any real thoughts on who will read it, where I am heading with it or what people might think of what I am saying. Sometimes I write to support others. Sometimes I write to offer others who might be walking a similar path some words they can relate to or, even better yet, share to help people in their own life understand them better. Much of the time I start with a tiny idea that seems to explode, often in a direction that I wasn't even planning. Someone once told me that God is using me, that the Holy Spirit is speaking through me. That's pretty cool. And it makes me realize that my cousin's dad (guess that makes him my cousin too) is right. I can't stop sharing because it's what I'm supposed to do. And I can't stop because I don't know how long I have left in my life to do this.
We don't know how much time we have on this earth. As Dean Brody says (check out the end of this blog for his song....speaks volumes, trust me) ' The trouble is you think you have time. You think tomorrows always coming down the line. And then one day you wake up and you find the trouble is you thought you had time'
We always think we have time to do this 'one thing', that we can get to it tomorrow. But Amy didn't get a tomorrow and maybe I won't either. Maybe this is all the life I've got. Amy's brother in law, who I've known since I was a little kid, made a comment yesterday that he didn't think he'd have many people come to say goodbye, many people who would miss him. He said he didn't think he'd made much of impact on the world but that Amy sure had. I have no idea if he's right but I think not. I think many of us might be amazed by the impact we've had on others. I was sure taken by surprise yesterday.
And I guess that's where my title of this blog comes in. We don't know who we inspire and we don't know the legacy we'll leave behind. And that's ok...I don't really think we're supposed to know that. We just need to live our lives to the fullest, share our lives with others, share our hearts with others. And what we need to make sure we do while we are on this earth is to cherish those who've inspired us and whose legacy we are a part of.
Sometimes those who inspire us, whose legacies we transpire to fulfill weren't even a part of our earthly lives for long or perhaps weren't even someone we lived life with in a physical way but rather their footprints were left on our hearts in some way by their spiritual presence. For me there are many people who inspire me and a few legacies I want to ensure are as valued to others as they are to me.
Of no surprise to anyone, my son Cole has inspired me in ways I could have never imagined and left a legacy behind that I vow to fulfill for the rest of my life.
And since we never know how much time we have left to live a legacy, to be inspired, to leave a legacy and inspire others then I just will promise to not stop doing what I'm doing ,to use the gifts God gave me and be all that I can be.
But given I left that community over 25 years ago, it's also inevitable that you don't speak to most of these second cousins for years and years. And while I did see many of them a few weeks ago at our town's homecoming reunion that happens every 10 years, I didn't actually talk to anyone from this branch of the family. But that doesn't mean we don't stay somewhat connected (thank you facebook) nor does it mean my heart doesn't hurt for all of them...her kids and husband, her parents, her siblings and all her aunts, uncles, cousins and her grandma....the last matriarch in that generation of the family tree.
I found out she passed when I saw this photo posted by her sister and then read all the comments of condolences, and, well, shock. No quote could be more fitting to this situation than this one. No one could have ever predicted this happening but something I heard yesterday when I went to her visitation made me wonder if maybe she did sense life was about to change.
You see her dad made a point of sharing with me and my parents that just two days prior to her death she had a deep and spiritual conversation with him. She told him that she had such a sense of peace and contentment in her life right now. She told him that she didn't go to church often any more but that almost every Sunday morning she would go for a run or a walk and she'd talk to God. She said she felt like her life was exactly where God wanted it to be right now and she was so content with everything, so at peace. His eyes met mine as he said that and I was filled with such a sense of peace too. But more than that, I was filled with words to share. I shared with him that I felt God gave her that moment with him and that those were the words he needed to hear and the memory God wanted him to have at that moment. He had no idea that he didn't have much time left with this oldest daughter of his but in that moment he was given such a gift from her.
And as I shared those words with him it became my turn to give him a hug and offer my words of condolences. I found myself overcome with tears as I hugged this dad who was missing his child so much but I had no idea that I was about to be moved to tears even further. Her dad stepped back slightly from me and looked me in the eyes and he said "Don't stop doing what you do for others. Don't stop sharing your heart. Don't stop helping other people the way you do. I read everything you share online and how much you put your heart out there. Don't stop that. People need it, need you, more than you know."
Wow. Just wow.
He went to tell me that so many people had shared with him the impact his daughter had on their lives and he was sure she had no idea what an inspiration she was. She changed lives by sharing boldly and by helping others and he told me that I do this too. He reminded me again to not stop being me, to not stop sharing what's on my heart because I just don't know who needs to hear it.
It made me realize that we just don't know. We don't how much we are impacting others. We don't know who hears our words or reads our thoughts. We don't realize that so much of what do in life impacts others in ways we may never hear about. I don't think when I write a message of support or write a blog post of the impact it may have. I may do it to help other people sometimes but often I just start writing, like I am today, without any real thoughts on who will read it, where I am heading with it or what people might think of what I am saying. Sometimes I write to support others. Sometimes I write to offer others who might be walking a similar path some words they can relate to or, even better yet, share to help people in their own life understand them better. Much of the time I start with a tiny idea that seems to explode, often in a direction that I wasn't even planning. Someone once told me that God is using me, that the Holy Spirit is speaking through me. That's pretty cool. And it makes me realize that my cousin's dad (guess that makes him my cousin too) is right. I can't stop sharing because it's what I'm supposed to do. And I can't stop because I don't know how long I have left in my life to do this.
We don't know how much time we have on this earth. As Dean Brody says (check out the end of this blog for his song....speaks volumes, trust me) ' The trouble is you think you have time. You think tomorrows always coming down the line. And then one day you wake up and you find the trouble is you thought you had time'
We always think we have time to do this 'one thing', that we can get to it tomorrow. But Amy didn't get a tomorrow and maybe I won't either. Maybe this is all the life I've got. Amy's brother in law, who I've known since I was a little kid, made a comment yesterday that he didn't think he'd have many people come to say goodbye, many people who would miss him. He said he didn't think he'd made much of impact on the world but that Amy sure had. I have no idea if he's right but I think not. I think many of us might be amazed by the impact we've had on others. I was sure taken by surprise yesterday.
And I guess that's where my title of this blog comes in. We don't know who we inspire and we don't know the legacy we'll leave behind. And that's ok...I don't really think we're supposed to know that. We just need to live our lives to the fullest, share our lives with others, share our hearts with others. And what we need to make sure we do while we are on this earth is to cherish those who've inspired us and whose legacy we are a part of.
Sometimes those who inspire us, whose legacies we transpire to fulfill weren't even a part of our earthly lives for long or perhaps weren't even someone we lived life with in a physical way but rather their footprints were left on our hearts in some way by their spiritual presence. For me there are many people who inspire me and a few legacies I want to ensure are as valued to others as they are to me.
Of no surprise to anyone, my son Cole has inspired me in ways I could have never imagined and left a legacy behind that I vow to fulfill for the rest of my life. And since we never know how much time we have left to live a legacy, to be inspired, to leave a legacy and inspire others then I just will promise to not stop doing what I'm doing ,to use the gifts God gave me and be all that I can be.
Thursday, August 22, 2019
Thankful for the Scars
I have a scar. I have a scar that means so much to me. It is a scar that I've had for a long time, a scar so faded that sometimes I can hardly find it. But this scar is so tied to some other scars that no matter how much it fades, I'll always know it's there. The other scars, the ones that it's tied to, they're on my heart. And they are scars that will be with me forever. And for that I am thankful.
Over time it has slowly healed, slowly mended. But as with any injury, any serious injury that is, there's always a scar.
I came across this song a few months ago and downloaded it. I listened to it a few times without really reflecting on the words at all. And then a few weeks ago, while out for a walk of solitude, reflection and worship; my God time; the words completely resonated with me and stirred this blog post in my heart.
Have a listen. Read the words. Let them resonate with you too.
Have a listen. Read the words. Let them resonate with you too.
"Scars"
Waking up to a new sunrise
Looking back from the other side
I can see now with open eyes
Darkest water and deepest pain
I wouldn't trade it for anything
Cause my brokenness brought me to You
And these wounds are a story You'll use
So I'm thankful for the scars
'Cause without them I wouldn't know Your heart
And I know they'll always tell of who You are
So forever I am thankful for the scars
Waking up to a new sunrise
Looking back from the other side
I can see now with open eyes
Darkest water and deepest pain
I wouldn't trade it for anything
Cause my brokenness brought me to You
And these wounds are a story You'll use
So I'm thankful for the scars
'Cause without them I wouldn't know Your heart
And I know they'll always tell of who You are
So forever I am thankful for the scars
Now I'm standing in confidence
With the strength of Your faithfulness
And I'm not who I was before
No, I don't have to fear anymore
So I'm thankful for the scars
'Cause without them I wouldn't know Your heart
And I know they'll always tell of who You are
So forever I am thankful for the scars
I can see, I can see
How You delivered me
In Your hands, In Your feet
I found my victory
I'm thankful for Your scars
'Cause without them I wouldn't know Your heart
And with my life I'll tell of who You are
So forever I am thankful
My physical scar is located on the side of my abdomen and is the spot that marks where life changed forever for me. It is the spot where are hero, Dr. Ryan, entered my womb to save the life of my children. And it truly is very difficult to find now. I've lost and gained so much weight over the years that I have a lot of stretch marks and it blends in very nicely.
But I can always find it, I can always feel it. And that's because it's so closely tied to the scars that are on my heart. Those scars were formed the day I learned that Cole was no longer with us. My heart shattered that day and I didn't know if it would ever be put back together again.
With the strength of Your faithfulness
And I'm not who I was before
No, I don't have to fear anymore
So I'm thankful for the scars
'Cause without them I wouldn't know Your heart
And I know they'll always tell of who You are
So forever I am thankful for the scars
I can see, I can see
How You delivered me
In Your hands, In Your feet
I found my victory
I'm thankful for Your scars
'Cause without them I wouldn't know Your heart
And with my life I'll tell of who You are
So forever I am thankful
My physical scar is located on the side of my abdomen and is the spot that marks where life changed forever for me. It is the spot where are hero, Dr. Ryan, entered my womb to save the life of my children. And it truly is very difficult to find now. I've lost and gained so much weight over the years that I have a lot of stretch marks and it blends in very nicely. Over time it has slowly healed, slowly mended. But as with any injury, any serious injury that is, there's always a scar.
And my scars, well they tell a story. A story of heartache, of hurt, of sadness, of some deceit and mistrust, and of what it took to put it all back together. The story of who it took to put it all back together. They tell the story of my Redemption, my salvation.
I'm not sure that is what this song I would say to other people. I think that the artist was really talking more about the scars of Jesus not the scars of the person singing or listening to the song. But for me, while I am very grateful for those scars too, I am just as grateful, maybe even more grateful, for my own scars.
It was my scars that led me to search for answers. And as I wrote earlier this week, the answers aren't really important, but searching for them leads you to the what. The what does Jesus want me to do, the what is the purpose of my life, the what can I take from this journey and make it something miraculous.
And so my scars led me to that. They took me on a journey to find my way to some sort of redemption. I'm thankful, as hard as it is to say that, as much as it brings me to tears as I write this, I am thankful for the loss of my child. Without that loss I don't know that it ever would have found Jesus the way I have. I don't know that it ever would have meant what it does now, if life would have ever had the purpose it has now. If I ever could've even begun to grasp what Jesus came to this earth to do, ever could have understood the little bit that I actually understand.
And the thing is, that it is a really hard thing to come to, being thankful for that particular scar. It is really hard to be grateful for the loss of your child. And as I write this I'm weepy because it's such a hard place to be in. How do you come to terms with the fact that it's a good thing, a redemptive thing, to have lost a child? And yeah, I'm not going to lie, I don't always feel that. I'm not always able to put myself in the place of gratitude for the fact that my child is not growing up here with me, alongside his twin brother, alongside his older brothers, in my house, with my husband and I. Sometimes, that's a really not okay.
But most of the time, I can look at it as a blessing, I can see it with a thankful heart. My scars, the scars that I'm grateful for, they led me to find greater purpose in life. 'I wouldn't trade them for anything cause my brokenness brought me to Jesus and these wounds are a story he'll use.'
I'm not sure that is what this song I would say to other people. I think that the artist was really talking more about the scars of Jesus not the scars of the person singing or listening to the song. But for me, while I am very grateful for those scars too, I am just as grateful, maybe even more grateful, for my own scars.
It was my scars that led me to search for answers. And as I wrote earlier this week, the answers aren't really important, but searching for them leads you to the what. The what does Jesus want me to do, the what is the purpose of my life, the what can I take from this journey and make it something miraculous.
And so my scars led me to that. They took me on a journey to find my way to some sort of redemption. I'm thankful, as hard as it is to say that, as much as it brings me to tears as I write this, I am thankful for the loss of my child. Without that loss I don't know that it ever would have found Jesus the way I have. I don't know that it ever would have meant what it does now, if life would have ever had the purpose it has now. If I ever could've even begun to grasp what Jesus came to this earth to do, ever could have understood the little bit that I actually understand.
And the thing is, that it is a really hard thing to come to, being thankful for that particular scar. It is really hard to be grateful for the loss of your child. And as I write this I'm weepy because it's such a hard place to be in. How do you come to terms with the fact that it's a good thing, a redemptive thing, to have lost a child? And yeah, I'm not going to lie, I don't always feel that. I'm not always able to put myself in the place of gratitude for the fact that my child is not growing up here with me, alongside his twin brother, alongside his older brothers, in my house, with my husband and I. Sometimes, that's a really not okay.
But most of the time, I can look at it as a blessing, I can see it with a thankful heart. My scars, the scars that I'm grateful for, they led me to find greater purpose in life. 'I wouldn't trade them for anything cause my brokenness brought me to Jesus and these wounds are a story he'll use.'
My scars led me to look into what I could use the gifts that God gave me for. My scars brought me to a place where I sought out other people who understood. And then I sought out other people who needed to understand, who needed to know that people out there understood. It led me to look into what information was out there, what could I learn about all that it happened to us, how could I use that to help someone else.
But maybe more than that, my scars led me to just be thankful. Be thankful for everything we have, the blessings there is in my life that I live here on Earth. My scars led me to love deeper, to live life fuller, to appreciate, give, to have, to hold, to be present in this life. I'm thankful for the scars for without them I don't know who I would be. I'm thankful for the scars for without them I would not know Jesus. I'm thankful for the scars for without them I would not know who Cole is, I would not know his heart. I'm thankful for my scars because without my scars I would be without Cole and I would be without Cameron.
I'm thankful for Cole's scars too. His scars are as a deeply a part of me, of my heart, as my own. They are what ties me to him. His damaged heart that never received physical scars of healing will forever have spiritual scars of divine healing. His heart surely has scars of his own desire to have been able to grow up here with us family and how his energy left him to dwell in us so that he could. His scars are the kind that make your heart beat faster, your senses to tingle at times when you reflect on the journey that has happened because he existed, because he moved people to do things in his honour. 'I'm thankful for his scars 'cause without them I wouldn't know his heart and with my life I'll tell of who he is....So forever I am thankful'
That scar, that faded one on my abdomen... yeah I'm very thankful for it and I'm very thankful for what it ties to on my heart.
But maybe more than that, my scars led me to just be thankful. Be thankful for everything we have, the blessings there is in my life that I live here on Earth. My scars led me to love deeper, to live life fuller, to appreciate, give, to have, to hold, to be present in this life. I'm thankful for the scars for without them I don't know who I would be. I'm thankful for the scars for without them I would not know Jesus. I'm thankful for the scars for without them I would not know who Cole is, I would not know his heart. I'm thankful for my scars because without my scars I would be without Cole and I would be without Cameron.
I'm thankful for Cole's scars too. His scars are as a deeply a part of me, of my heart, as my own. They are what ties me to him. His damaged heart that never received physical scars of healing will forever have spiritual scars of divine healing. His heart surely has scars of his own desire to have been able to grow up here with us family and how his energy left him to dwell in us so that he could. His scars are the kind that make your heart beat faster, your senses to tingle at times when you reflect on the journey that has happened because he existed, because he moved people to do things in his honour. 'I'm thankful for his scars 'cause without them I wouldn't know his heart and with my life I'll tell of who he is....So forever I am thankful'
That scar, that faded one on my abdomen... yeah I'm very thankful for it and I'm very thankful for what it ties to on my heart.
Tuesday, August 20, 2019
Caught Up in the Why
We often miss out on the amazingness of God because we're caught up in the why. We're stuck trying to figure out why something happened...did we do something to deserve this, is there a plan in this, who made the mistake that brought this etc. In the head spinning that we're doing trying to sort it out, as often miss the other miracles happening, we often miss what we could do with what we know and understand now.
I don't think this is any more or less applicable then when a parent loses a child.
I heard a 'sermon' (what an antiquated word) last month that really made me ponder this so I'm going to expand on the 'sermon notes' and explore it through the lens of a loss parent, specifically a parent who lost a twin.
I heard a 'sermon' (what an antiquated word) last month that really made me ponder this so I'm going to expand on the 'sermon notes' and explore it through the lens of a loss parent, specifically a parent who lost a twin.
In John 9 we read the story of a blind man who meets Jesus.
John 9:1-2 MSG
Walking down the street, Jesus saw a man blind from birth. His disciples asked, “Rabbi, who sinned: this man or his parents, causing him to be born blind?”
The disciples were consumed with who sinned to make him blind. There must be a reason. They didn't think about the fact they were with a man who performed miracles but rather, why did it happen?
Walking down the street, Jesus saw a man blind from birth. His disciples asked, “Rabbi, who sinned: this man or his parents, causing him to be born blind?”
The disciples were consumed with who sinned to make him blind. There must be a reason. They didn't think about the fact they were with a man who performed miracles but rather, why did it happen?
We do this too. We focus on the why and miss what's really happening and miss the miracle in it. We are stuck at the why and can't move forward to the awesome things God has planned for us. I think when you lose a twin you tend to focus on the loss, at least at first, and not the miracle of the life that remains. In our case it was miraculous that Cameron was not sick, at all, when they were diagnosed. It was miraculous that the diagnosis happened when it did and that surgery happened as quickly as it did. It was miraculous that only Cole rapidly declined in health, miraculous that Cameron wasn't more affected by Cole's passing. But it was do hard to focus on that in my grief. Later it was miraculous that Cameron wasn't born at 26 weeks and miraculous that he wasn't affected by all he endured inutero. But again, it was hard to focus on that when my heart was so broken.
John 9:3-4 MSG
Jesus said, “You’re asking the wrong question. You’re looking for someone to blame. There is no such cause-effect here. Look instead for what God can do. We need to be energetically at work for the One who sent me here, working while the sun shines.
Jesus jumps in and tells the disciples that no one sinned but that it happened so the works of God can be displayed in this man. Now to some they could say this, or perhaps twist this, to suggest that this happened so God could show off so to speak. And it's easy to understand why people might think that way when you think about people in your life or in the public eye who do this…who promote the good works they've done, who jump in to a situation and genuinely do make a positive impact on it...but are sure to make sure everyone knows the good they did.
But that's not how God works.
John 9:3-4 MSG
Jesus said, “You’re asking the wrong question. You’re looking for someone to blame. There is no such cause-effect here. Look instead for what God can do. We need to be energetically at work for the One who sent me here, working while the sun shines.
Jesus jumps in and tells the disciples that no one sinned but that it happened so the works of God can be displayed in this man. Now to some they could say this, or perhaps twist this, to suggest that this happened so God could show off so to speak. And it's easy to understand why people might think that way when you think about people in your life or in the public eye who do this…who promote the good works they've done, who jump in to a situation and genuinely do make a positive impact on it...but are sure to make sure everyone knows the good they did.
But that's not how God works.
Regardless we can't search for why something happened but rather just need accept that it just happened. Does it make sense? No. Do we wish it would have happened to someone else? Not really but we sure wish it didn't happen to us. Did we deserve it? No.
Did I do something wrong to deserve my child leaving before I ever met him? Did my sins and transgressions finally catch up with me? Did God feel I couldn't handle raising twins? Heck my biggest question was similar…'God if you never meant me to bring 2 babies home in the first place, then why make me pregnant with twins in the first place?' The answer to all of those first questions is a resounding NO. The answer to the last one...well when we stop asking why and looking for a reason, we can move onto what God wants to do with what is happening, not what happened.
When we stop searching for answers to why our child passed away, why they got the illness that took them, why the mistakes happened in the medical field, why the accident happened, why this is our life ...when we stop looking for answers to the why we can start to see what is happening, what God is doing with our journey.
Romans 8:28 NIV
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
What if we stop asking why and ask what instead? I know I can't understand why this has happened but what do you want me to do God?
I’ve asked this, in my own way and in my own time and the resounding answer is to help others through it, to use the brokenness my heart experienced to empathize with others. To use the information that I HAD to have, had to understand, about everything that happened to us to walk alongside another family and offer them support. I’m not going to lie, that was really hard to do times and it looked a lot different, had a much different purpose I think in the beginning. Initially I shared my story a lot in various groups because I wanted, no needed, to talk about Cole and I needed to keep reliving the boys journey as a way to hold on to him and, perhaps, to draw attention to myself. Transparency at it’s best here folks!
Did I do something wrong to deserve my child leaving before I ever met him? Did my sins and transgressions finally catch up with me? Did God feel I couldn't handle raising twins? Heck my biggest question was similar…'God if you never meant me to bring 2 babies home in the first place, then why make me pregnant with twins in the first place?' The answer to all of those first questions is a resounding NO. The answer to the last one...well when we stop asking why and looking for a reason, we can move onto what God wants to do with what is happening, not what happened.
When we stop searching for answers to why our child passed away, why they got the illness that took them, why the mistakes happened in the medical field, why the accident happened, why this is our life ...when we stop looking for answers to the why we can start to see what is happening, what God is doing with our journey.
Romans 8:28 NIV
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
What if we stop asking why and ask what instead? I know I can't understand why this has happened but what do you want me to do God?
I’ve asked this, in my own way and in my own time and the resounding answer is to help others through it, to use the brokenness my heart experienced to empathize with others. To use the information that I HAD to have, had to understand, about everything that happened to us to walk alongside another family and offer them support. I’m not going to lie, that was really hard to do times and it looked a lot different, had a much different purpose I think in the beginning. Initially I shared my story a lot in various groups because I wanted, no needed, to talk about Cole and I needed to keep reliving the boys journey as a way to hold on to him and, perhaps, to draw attention to myself. Transparency at it’s best here folks!
Later on I couldn’t handle ‘helping’ anyone who had 2 surviving twins, couldn’t walk beside those who’s surgery was successful. So I offered my support mostly to families who’d experienced loss.
In time I felt a nudge to enter back into uncomfortable places because I knew that it was great to help those with broken hearts but maybe I could help others to not experience broken hearts.
John 9:4-5
While it is daytime, we must do the works of Him who sent Me. Night is coming, when no one can work. While I am in the world, I am the light of the world.”
We only have so much time on this planet and what we do with our time matters. It was time I walked into uncomfortable places so that, hopefully, less families would walk the path we walked. Now I walk comfortably in the world of mono di twins and share openly what I know and, often, a bit more guardedly, our story. I don’t hide the reality of TTTS but I don’t start the conversation with it either.
We are here. We are in the world and we can be the light. God always works in partnership with humanity. God will send you if you are hurting, broken, hungry, poor, lost etc. It might feel ridiculous but it is what God called you to. Sometimes you have to do something a little bit ridiculous for God to do something a lot miraculous.
Let’s go back to John 9. After the blind man meets Jesus and has mud and spit put on his eyes he has to crawl down hundreds of stairs to wash in the pool of Siloam and he can then see. Picture that….you are a blind man who’s just encountered a man rumoured to be a healer. Your world is dark and you live by sounds, smells and touch. So some man you’ve never met just spit in the mud, rubbed it your face and told you to walk hundreds of steps to a bathing pool. You do that and you can see!
The blind man tells everyone he meets and the story sounds so ridiculous that no one believes him. They ask his parents and they say ask the man himself. Essentially he tells them, again, what happened and that he does not know who the man who healed him is, if he is a sinner or not. He does not know why he can see but what he knows is that he can see.
As the pastor I heard speak on this says “We just have to know what we know and not worry about what we don't.''
I don’t know why my son died. I don’t know why my twins didn’t get to grow up together. I don’t know why this is the path of my life. What I do know is that God is walking it with me, that Jesus came and met me in a few different ways, in a few different places and brought me stories, people and information out of nowhere….all of which gave me hope. What I do know is that God has given me a gift to write and the Holy Spirit breathes words into me that I can share that may help others find that hope too. And what I also know is that someday we will all be reunited again. Someday the answers to the why’s will be clear….or perhaps clearer. For now I will focus on what….what I can do with what I know, what I experienced, what I see, what I sense and what I feel. For now the what is all that matters.
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