How'd I do...

Hmmmm....good question. How'd I make out surviving the first birthday of my sweet boys...the day I remember with such bittersweet emotions, the day I said hello to two and goodbye to one.
Well it was actually not too bad. My emotions were high in the morning but my mom called and came, with my sister in law and nephew to spend the day with us. We went and got Cameron's birthday pictures taken and then had lunch.
Lunch probably had my only other emotional moments but they were kept entirely hidden. You see my nephew was born 3 weeks after Cameron. My mom, and entire family, planned for these THREE babies to share close birthdays and grow up together. I say my mom because she was the shopper Grandma who bought 3 of everything for her grandbabies. At lunch Cameron and Joel sat together and made a huge mess!!!! It was hard to watch them together and awesome too.
When we had cake that night...see photos below...I expected to tear up, expected to have trouble singing Happy Birthday. But that didn't happen, not then and not when we've had cake and singing any of the 3 times we have for this special birthday. I had thought I'd NEED to send a sky lantern up to Cole in Heaven for his birthday but it just didn't seem as important as it did back in December.
I don't know why this is but I suspect it is because we lost Cole 11 weeks before his birthday and though I know that this should have been his birthday, should have been the day I welcomed them both into the world with great joy I think my heart really feels like Cole never had a birthday. We never got to plan for a joyful arrival day, we knew for 11 weeks that we would welcome our still and silent son. It hurt so much but it was reality. So many of my TTTS mommy pals did welcome two babes into the world, they did have 2 birthdays to celebrate...and unfortunately a few days later they have an angelversary to celebrate.
Part of me will always have some sadness on my twins birthday but I think the joy outweighs the sorrow. Cameron brings sunshine and happiness to everyone he meets and has brought immense joy to my life. I need to celebrate his day for the miracle it is. It came so close to not happening, and so so so very close to not happening in February for sure. The progression of the TTTS was so rapid that another 3-4 hours without the surgery could certainly have meant death for him. It definitely would have meant permanent disability....there were so many large vessels connected our boys that the drop in blood pressure would NEVER have produce anything but catastrophic results. Cameron was severely anemic after the loss of Cole...this too could have had horrible outcomes but was caught and fixed right away. My water broke 3 weeks later when Cameron was definitely at micro-preemie size (he was 650 grams...not even really on the charts yet for growth). Had he been born then he would have been on intense breathing support, he would have endured trial after trial in the NICU and would very likely have had some negative outcomes.
But God is good and his (and our)angel Cole is good...and Cameron was absolutely and perfectly fine when he arrived 54 days later. God is amazing and performs such amazing miracles. He rewards us for our faithfulness and trust. He promises to be with us, to protect us and to bring us home to Him and all our loved ones in Heaven...all we need to do is believe.
Well I believe, I have Hope and Faith, and I know, one day, I will celebrate this birthday in Heaven with this perfect son of mine after having celebrated years of birthdays with this perfect son of mine on Earth.

Happy Birthday Sweet Miracle Boys!

Wow, a year has gone by since we welcomed our boys into the world. I've read through all the posts from last year at this time and it, of course, brings tears to my eyes. I am so very emotional today but also so filled with joy and hope for us all. Cameron has brought joy to so many people and Cole has brought Hope for so many.
Of course I just wish I was making cakes for two, buying cute matching outfits for two boys to get their one year photo taken in and really wish that I was sitting here thinking 'where did the last year go, I was so busy with my twins that it's all a blur and I don't remember much'. Instead I am trying to find a way to include Cole in the cake (an angel food cake with butterfly candies on it), am taking Cameron today for his photo, alone, and can remember clearly so many of the moments in the last year because I treasured each and every one with this little miracle who endured so much and came so close atleast twice to not being here with us at all.
Just as I started typing that last paragraph Cameron yelled and cried from his room where he's supposed to be napping. I went in and picked him up...and began to cry. He snuggled in and wrapped his arms around me (he never snuggles like that) and kept looking up at me and putting his hands on my tears. I wish I was holding them both but I am so grateful to God that I am still holding him and that I can appreciate life so much more now.
My sons have taught me so much about myself and life. I am so very blessed to be the mom of twins, the mom of Cole and Cameron, the mom of a pair of twin miracles!!!
Here's something I wrote to honour this day;

Two Miracle Sons

One year ago I welcomed you into the world with tears of joy.
Your loud cry breaking my heart
Your sweet face touching my soul
Your tiny, active body making my arms ache.

One year ago I welcomed you into the world with tears of sorrow.
Your silence breaking my heart,
Your still face touching my soul
Your broken body making my arms ache.

One year ago I ached to be allowed to hold you and say hello.
One year ago I ached as sobs racked my body when I held you and said goodbye.

In the last year I have watched you, a baby, born too soon and too small,
Grow into this strong feisty little boy
Who is so full of joy
And truly has the heart and soul of two.

In the last year I have gathered with friends and family
To say goodbye to you, a baby who touched so many hearts
Without ever meeting anyone
And have tended a garden built out of love to honour you.

In the last year I have learned that joy and sorrow can go hand in hand.
In the last year I have learned that it truly is better to have loved and lost
Than to have never loved at all.
In the last year I have learned to appreciate every ounce gained, milestone met
And every single minute with my children.
I have learned I am strong,
I can help and inspire others,
And I will not hide from this grief.

One year ago I became the mother of two identical miracles
And I will forever be thankful for all you both have given me.


I love you both so much, Happy Birthday boys!!!

The Ups and the Downs

I had no idea what to use a title for this entry. It’s been a few weeks since I blogged and the last time I did I was writing about the possibility that maybe my desire to help others and obsession with all things TTTS was maybe not the healthiest thing I could be doing.
And then I seemed to disappear from the face of the earth…well the cyber earth anyway. I’ve been back to work for 2 weeks and am home today for a specialist appointment for Cameron and then the weather got crappy so I came home instead of going in this afternoon.
And so hear I am at the computer again and I have so many thoughts in my head.
It’s been an okay transition back to work. I am doing a good job I think and feel valued and successful there. But the stress level of managing things here and working has been a bit high…but we’ll get through this.
The stress level at work was high last week too….and I had part of an afternoon full of tears and emotions. I was sitting in one of the classes I support when I realized that there very likely was a set of twins in the class as there were 2 girls celebrating their birthdays on Friday (the 19th). As I looked around the room hoping to figure out who these two girls were I identified one of them but couldn’t find the other. The first one left the room and a few minutes later I saw her enter it again…. And then a few minutes later she entered again???? Yup you guessed it, not just twins but identical twins.
I spent the next half hour staring at them, watching them interact with each other and with their friends and teacher. I was full of emotion and trying so hard not to lose it. I finally gave in and left the room and had myself a big ol cry in the staff bathroom. I felt stupid and embarrassed and so very alone. It is so hard to be in a new place where no one really knows you and none of them ‘lived’ it with me like my old staff. I had no one to turn to, no one to give me a hug when I really needed one. In the end though I did okay. I talked to the teacher later and she was so wonderfully kind and understanding…and totally expects that it’ll happen again…and she’s cool with that.
Knowing that was my reaction, I know that I am going to be filled with emotion on Friday when I celebrate the day I welcomed my sons into this world….and therefore plan to stay home and protect myself and my mental health….and enjoy the moments with my kids.
Ironically I have to add this info to the twins who just had a birthday...they were born Feb. 19 and weighed about 4lbs. They were due April 3rd. Where is the irony??? Cameron and Cole were born on Feb. 26th (one week later than the girls) and were due April 9th (one week later than the girls due date) and Cameron weighed 4lbs 1.5 oz. Bizarre eh!!!

And now back to the positives…the ups. I have discovered one of the reasons I am drawn to TTTS mom’s and the sites I visit….because I do make a difference and so do my boys and the story of their journey. A few months ago I connected with a woman in England named Tara through facebook. Her boys were not doing well, she was only about 22 weeks and had had the surgery but it was believed to not be a success. It looked like TTTS was reversing and it also looked like her donor, Noah, would not survive. When we first connected (she requested my friendship) I had no idea what to say to her or to her comments. She was blunt about how hard my life must have been and still is and that she didn’t know how she’d go on if and when she lost Noah. She didn’t understand my faith and didn’t really believe in God. She felt that He couldn’t be great if he allowed these things to happen to us.
I explained how my faith grew because it HAD to. That I had to believe that Cole was in God’s arms, that he was at peace and that I would see him again. I told her that I knew Cole had kept Cameron safe and that I felt that Cole and God wanted me on this TTTS journey.
We continued to chat frequently and really connected. Last night we chatted on facebook and she told me that she plans to name her donor, her little baby who needed the help of my angel, Noah Cole. And yup, I cried, and I am crying now. And right now, at less than 29 weeks gestation, Noah and Jack are likely on their way to the world as Tara went into labour a few hours after she told me this heartwarming news about honoring my little angel.
And so that is why I am the TTTS mommy I am. I need to be there, I need to make a difference and I know my angel son does too…he has a purpose and a job too!!!

One last thing…a quote I found…
The true voyage of self discovery lies not in seeking new landscapes but in having new eyes. Marcel Post.

Misguided Me.....????

I've had numerous conversations with others lately about what some might call an obsession...personally I call it a compulsion....seems a nicer word don't you think???
Anyway, this compulsion seems to take me back to near the start of this blog and the topic of hiding from your loss. I realized when I went back and read the first and second devotions that I did that I really haven't moved very far in my desire to heal and move forward....and yet I am so far from where I was back then.
You see the problem seems to be that I spend hours (and yes I do mean hours) reading blogs, talking to online TTTS moms, dads and specialists. I research treatments, I follow others journeys and I never go more than a few hours without checking the message boards where new moms just diagnosed go for help. I made a comment to Geoff that I can't seem to stop doing it, that I want to go there and find others that I can help by telling our story to them. His response...don't you think it's odd that you feel you need to share our story over and over again.
No, I don't....well not until someone else points it out to me.
Another mom who also lost one of her twins but isn't part of my 'online' group of friends...rather she's a real life friend who doesn't grieve as publicly as me...and seems to have moved on so much better than I have... said that she thinks returning to work is the answer...cutting myself off by eliminating the time in a day that I have for this kind of behaviour might be what I need.
Sometimes what I think I need is a good stiff drink...and a good shot of reality. Because reality is what brings us back to earth. It centers us and helps to guide us to what really matters. My family is suffering because of my online obsession and likely so are my friendships. This may very well be the reason that I am struggling with connecting with my friends so much....because they seem so lacking in the understanding compared to those online. But the online ones can only help me so far with reality. They aren't here to help me get kids ready for bed when I've been online too long, they can't rub my sons back when he's upset because mommy hasn't picked him up...she's too busy typing. And they can't give me hugs and hold me as I cry on a bad day...they can reach out all they want but they can't physically be here when all I need is a hug.
And so it is time to say goodbye, somewhat anyway, to that life. I love facebook too much to walk away from it but it is going to be limited. The message boards have been deleted from my favourites list... if I want to go to them I will have to spend the time to go looking for them. I will, I know, but it won't be as easy nor will I allow myself to do it anywhere near as often.
But the trouble is I am not sure if this is what I am supposed to be doing. Don't get me wrong, I know my family needs to come first, I know I am not giving enough to them sometimes. I have one week left of maternity leave and it needs to be all about my kids this week. But like I said, I'm not sure if this is what I am supposed to be doing.
I read a book to Brycen the other night called Bagels from Benny. The story is about a little Jewish boy whose Grandfather makes the best bagels and always says to those who thank him for them "why thank me". This confuses Benny until his Grandfather explains that all the ingredients in the bagels come from God and so people should thank God for bagels. Benny tries to thank God for the bagels but he isn't sure that God understands or hears him so he comes up with a great but secret plan to thank God for the bagels. Each Friday he takes a huge sac of them and places them in the Holy Ark at his synagogue. (now not being Jewish I can only assume that this is similar to the tabernacle in a Catholic church...a sacred and holy place that only the men of the cloth and those chosen by them are to touch). He tells God that he's brought him some bagels to thank him because "I know you make them but you never taste them because Grandpa sells every last one". He comes back on Saturday hoping that God had liked the bagels and is delighted when every last bagel is gone from the sacred Holy Ark. And so he continues to bring him a bag of bagels each Friday for weeks. Eventually he learns that a poor man living on the street has been eating them. This man comes in and thanks God for providing these bagels for him, for helping to feed him when he was so very hungry. He tells the Lord that he is grateful for the help the Lord gave him and he promises to help others. Benny made the world a better place by thanking the Lord.
And this is what I mean by not knowing for sure if walking away from the message boards and the people I've helped (and I know I have, they thank me all the time for the advice I give, the words of inspiration I share and the hope I instill in them) is the right thing to do. People helped me get through the worst time of my life. People like Tammy and Lonnie at Fetal Hope, like Kim and so many others at the TTTS Foundation, and Alicia, Angy, Kim, Jessica,Ali, Bethany, Michelle, Joanne, Shelley, Holly and so many others on facebook. Those people held my hand through cyber space, they gave me cyber hugs and they gave me hope. They showed me that all is not lost, that there is a future, there is HOPE! They helped me and now I feel I must help others. I want to thank the Lord for all that He has given me, I want to make the world a better place by thanking God.
Finding the balance is the key...finding the perfect number of bagels to give and the right amount to keep at home for my kids and family...well I guess that is a secret that only God knows. I just hope He helps me to find the answer.

With Hope

With Hope - Steven Curtis Chapman

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father's smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home
And now you're free, and ...

We have this hope as an anchor
'Cause we believe that everything
God promised us is true, so ...

So we can cry with hope
And say goodbye with hope

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope


Does this song not just say it all? I found it by accident online and listen to it many times a day. Each time I feel so close to Cole, I feel his touch and his breath on my skin...it's that comforting. It's just what I needed right now.
I've done a lot of thinking since I was so negative last week. I realize so much how unfair I've been by blaming others and feeling so abandoned. WE make our journey, not other people. If people can't take this journey with me than it is THEIR loss, not mine. I will miss them but I need to focus on the here and now, not the past and my wishful feelings that I could live in a time where those friends were there with me. Nor can I change the past and keep Cole with me. I also can't live for the future and worry about it. That's for God and Jesus to do...worry for me, to take my worries and comfort me. I can't change the future either though I can affect it by my actions now. I can make people feel uncomfortable and unconnected to me by how I act now..which chases them out of my life in the future.
Instead I must live for now, for the love of my friends each day NOW. For the love of my family NOW and most of all for the love of Zack, Brycen, Cameron and Geoff NOW.
Now in saying that I will live for one part of my future...the Hope I have for the time when I will see Cole again, hold him in my arms and tell him how much he was and is loved. I can tell him that each day too, he hears me, I know he does. He feels my love in the extra hugs and kisses his twin gets from me. (okay so the kid might be a bit spoiled, what can I say). The life I live here on earth will reflect my journey back to him and to God. Being positive, helping others, finding a focus and purpose for the journey Twin to Twin Transfusion put us on will bring me closer to him.
I can and will live my life 'with Hope'.
Love you baby boy!

Goodbye Pity Party!!!

Okay the pity party is over and I am regretting posting that last post. Well maybe not regretting the venting as it made me feel better to get it off my chest but regretting making anyone feel bad and even regretting making myself feel bad. It was a bad day….a bad few days that were heavily aggravated by sleepless nights. Cameron has been up a lot lately and yesterday we found out he has pneumonia. Scary somewhat but the doctor wasn’t too worried about him as we caught it quickly and his chest x-ray looked good. But lack of sleep always makes me feel sorry for myself and emotional.
I know that I grieve very publicly and it works for me in a way and is awful in other ways. I want to thank Jennifer (see comments on the last posting) for her insight and her support. She is so right…I am afraid if I stop talking about Cole that everyone will forget him and I know that I need to find a way to make everyone remember for the right reasons…not the crazy mom who lost her baby and can’t get on with her life reasons!!!
Before I do though I want to let you all in on something….well those who read this but have never met me. My online life is the place I am the most open and honest with my grief, well atleast I think so. I am actually quite happy at home and would guess that many of my friends might be surprised if they read some of the stuff I post. When I am out and about and talk about our journey it is pretty rare for me to cry or even tear up…I think I could count on one hand the number of times that I have done that in a good 6 months. When I am here with the boys..well sometimes they find me crying and Brycen often asks when he hears me play sad music, watch videos (ours or other peoples) if I am sad and he gives me a lot of random hugs to ‘make ya feel better mom’…so I know that I am somewhat sad here. Those that read the stuff on facebook often comment, concerned about me. On the surface I think I am doing okay. And deep down I think I am okay too…it’s the area in the middle that suffers.
You see I think that I am supposed to be horribly sad that I lost my son. I think the world expects me not to say that I am so happy with my life at times. I worry about how everyone perceives me so much that I am not the true me very often. I do wish this hadn’t happened, I do wish I had Cole with us but really and truly….I am so very proud of who I have become and of my survivor, Cameron and none of that would have happened if Cole had lived. But I am afraid to say that I am okay with Cole passing away for fear that people will think I am a horrible person and heartless. So instead I talk about him all the time, I bring our journey up anytime people talk about being pregnant, I remind people all the time of what happened to us. I am certain it makes people uncomfortable and I think Jennifer is right, I do it because I don’t want anyone to forget what has happened. Selfishly I am certain I like the attention and deep down maybe I believe I need people’s pity.
But I KNOW I don’t need their pity. By telling the story all the time, by mentioning our loss I am encouraging people to think of me with sadness. I know that God doesn’t want this and I am certain that Cole never wanted this for his mommy.
Finding a way to keep his memory alive, to tell our story so it evokes happy thoughts and encourages others and finding a way for people to feel comfortable and inspired by me is what I want and what I need.
And how do I get there….any thoughts???
I know one thing I have to do is stop my obsession with TTTS stories and at the same time finding time to support those who can learn from my journey. I need to find a balance between my online friends who’ve been there and ‘get it’ and the real people in my daily life who want to help but don’t know how. I need to find a focus in my desire to honor Cole and raise funds and awareness for what Dr. Ryan and others do for fetal distress disorders. I want people to hear the name Cole Tummers and Jodie Tummers and think ‘now there’s a success story born out of a tragedy’. I have great plans for some fundraising but seem to be unfocused in getting there…and enough is enough. Today I am putting it on paper and getting to work.
And last thing…I need to put this here so I see it and you see it and maybe then it will be what really starts to be the reality for me…the image I portray, the inner me, the outer me and the middle me….. I am not glad that I lost Cole but I am so glad that TTTS entered our lives and I was given the chance to experience everything that I have. I know the joys and sorrows of a multiple pregnancy…it may not get to be the life I live but it could be worse and deep down I will always be the mom of twins and I will always tell people that I am. I am so glad to appreciate the amazing medical world we live in…that part of our story doesn’t get told enough…all that was done to save Cameron… he should be the focus in this because he is the HOPE!!! I am amazed at the amazing people in my life…new friends that I met in hospital (medical, patients etc.) new friends online, and most of all new friends and closer friends in real life. I focus too much on the negative side of what losing Cole gave to me…but Cole gave me a second chance, a new focus and something I didn’t know I had…the ability to inspire others through my words, my actions and my love.
If you have any thoughts on this, any recommendations for me in how to do this best, how to help Mt. Sinai and Dr. Ryan and how to move forward without losing what’s behind me PLEASE put a comment here. I appreciate it so much! I’d love to know who really reads my babble!!!

Where did they all go?

Where did who go right? Well the last few days I have been filled with feelings of being lost, detached and unconnected to my friends...or atleast those who I thought were my friends. And for any of my 'real life friends', I apologize if this sounds hurtful...if you are reading this you likely aren't who I am talking about! And just a warning this entry isn't full of hope and optimism like I often write about...I am very down today and just need to vent.
This all comes about after some conversations about the changes in relationships in my life and why those changes happen. I know that over time our friendships often change but right now I feel like I don't have any friends. Not often does anyone call just to chat, no one ever invites us/me over for a visit, a drink, a coffee, a BREAK!!! The people who we spent so many weekends with a few years ago...well with some of them it seems that if I don't call them then we never talk and others it just never works to get together.
I don't know how else to describe this self pitying feeling I have other than abandoned. A year ago I had people who called, sent messages and came to see me everyday. Now I am lucky if I hear from people other than my husband for days or weeks on end.
Another friend, when telling her about this feeling, said that when she had her miscarriage she found that once she stopped talking about it first thing people talked to her more and eventually talked to her more about it when it fit into the conversation.
Well that's a great and fine and dandy but unfortunately my loss stares me in the face each and every day. He looks at me with adoration, he smiles and laughs, hugs and snuggles and loves me for everything that I am still...a wonderful mommy. But he is also the not so gentle reminder that I lost his beautiful identical twin and that I don't know where I fit in anymore...and no one seems to care!
Yes I am feeling sorry for myself today and I just don't care who knows it. Why do people have to change? Why do we have so many friends when were in the midst of a tragedy...why does a crisis draw a crowd that disappears when you still need them?
I just don't know how to make or keep friends right now. I am so sorry that I want to talk about my sons and the miracle that they are. I am sorry that I can't stop talking about my son in Heaven, I am so sorry that I am sad sometimes, worried about my sweet survivor others and still obsessed by all the things twin. And just in case you missed the sarcasm...I am not sorry one damned bit. I just HATE that I am so lonely right now and if I knew for certain that I'd find real friends if I could let go of those feelings than maybe I'd be able to. But I'm not sure if that's what the problem is.
I still can't read the stories of survivors without cringing or simply walking away and not bothering. Why can't I just be happy for those who don't have to go through this? Why can't I just be happy that I am not part of the group that lost both their babies? Why can't I just be happy period???
Why do I have to feel so all alone?
God I know you are listening, you are always my friend, always here no matter what my mood is. And it's wonderful that you are but I am asking today for some help in finding my way back to 'normal'. Help me to reconnect with my friends, help me to find those who do understand that some days are just horrible and please send some sign or someone to help me feel connected, loved and happy once again.