Sunday, January 31, 2010

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.

Monday, January 25, 2010

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'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!

Wednesday, January 20, 2010

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!!!

Monday, January 18, 2010

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.

Thursday, January 7, 2010

Hope Quotes

I just finished reading 'The Christmas Hope' by Donna VanLiere. She is the author of 'The Christmas Shoes' which is now a movie....and a song too!
It was filled with awesome quotes that I just felt I had to post here and discuss. Before I get to that though I wanted to point out that I've added my entire TTTS history and journey on the very first posting on this August. I wanted to be sure that everyone who was looking to find our story could as I am planning to shut down the caring bridge site that I posted it on soon.
Hope you find these as inspiring and insightful as I did:

Hope is not the conviction that something will turn out well, but the certainty that something makes sense regardless of how it turns out. - Vaclav Havel

I never realized what Hope really meant despite living by this quote last winter until I read this the other day. I was so full of hope I guess...certain that it would and will make sense some day. And 'some days' that is hard to accept but all in all I think I am doing a good job.

If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream. - Martin Luther King Jr.
So very true...and so easy to do. I was in this mode at times, especially before we knew that Cameron was going to be okay and then again right after my water broke. But then I'd feel him move, I'd catch my reflection in the large tummy and glowing skin, I'd hear one of my older boys laugh or say something I love you Mom!...and it would all be okay..not great but okay.

Hope never abandons you; you abandon it. - George Weinberg

Speaks for itself...and see comments on last quote....kind of one in the same.

We have to go into the despair and go beyond it, by working and doing for somebody else, by using it for something else. - Elie Wiesel
Did she read my mind??? This is exactly where I am at. I figure God has given me this loss for a reason, he's given me grief for a reason and he's given me Hope for a reason. I don't know for sure what it is. I know that I am desperate to find a focus for my grief and to come up with some way to make all that we lost and all that we learned and gained, something that will bring attention to the need for better monitoring and testing
of identical twin pregnancies as well as raising funds for research, treatment, support and care of those going through it. I've got some ideas but seem to lack the focus to move ahead with them....but I'll get there, I know I will. And this leads me to my next quote...

You can't help everybody; but you can help a few. It's that few that God will hold us accountable for. - Bob Pierce

These are the hardest times, especially when those who are younger than you take their leave, and there are times when I forget and permit myself to think that I am in the midst of death. But this is not so. It is life that surrounds me. Life. Life that is meant to be lived, its riches to be extracted. No, the Lord's promise is not for those who give up, but for those who forge ahead... - Leonora Wood
This is so true. God did not wish us to give up and die when life gets tough. It is at those times that He is there, picking us up, dusting us off and moving us ahead. Life is for the living, we can't change who's gone before us but we change how we live before we go. My son died before his time, he died before I got to hold him, touch him, kiss him.....but not before I got to love him. There is no way that such an innocent being would wish for me to be in Heaven with him instead of here with his twin brother.

....each day of the journey is precious, yours and mine - we must strive to make it a masterpiece. Each day, once gone, is gone forever. - John Wooden
The day Cameron was baptized by my dear friend Theresa she did an amazing job of including Cole in the service by giving a sermon on worrying. It is so hard not to worry, it is so hard not to focus on the future and where you are going. But you can't focus on the unknown because if you do you lose sight of the present and you miss out on what is with you right now. Once a day is gone it is gone forever. I felt my pregnancy was like that. I worried so much about how I would deal with being the mom of two newborn babies and of the stresses that brought that I didn't appreciate the miracles inside of me. I noticed all the growth, the movements and the wonderment of their little bodies on the ultrasound machine but I did nothing to remember those moments or live in them. I couldn't take that back once Cole was gone, it was too late to take pictures of my belly then, too late to start writing about how I felt about them and the dreams I had. You'd think I would have learned but when my water broke and I was rushed back to Toronto and then London I didn't live in the moment and enjoy Cameron's movements and life, I stressed and worried. I have no pictures of the places I called home for 8 weeks of my life or of the doctors that saved my son, took care of me, welcomed my boys into the world.
I needed to put those worries with God and let Him look after's His job.
And so I try my best to live in the present with my family. I try to only look at today and all the wonderful things they do today....not what they aren't doing yet compared to others and not most importantly, I try not to live in the past, in the world of 'what if'. Those days can't be changed,they are gone forever.

Tuesday, January 5, 2010

Thinking of Miracles

Happy New Year to everyone! It's a new year and for me I am hoping it brings my new version of the 4-H motto...Health, Happiness, Hope and Healing. As I ponder these things I am reminded of all the things 2009 brought us and can't help but remember where we were a year ago right now...having been rushed to Toronto by ambulance as my water had broke and everyone was pretty certain that one Mr. Cameron Tummers was very soon going to make his arrival. As the tests progressed and more was discovered we became more and more concerned about this tiny miracle inside of me. Everyone was so sure that Cameron was coming very soon and we were so very worried. Worried that he was so small for his age, worried that I'd be having a baby born in Toronto and worried about what was happening with our big boys at home.

I wondered if he was born this early how delayed he'd be....would he sit on his own when he should....


but would he crawl on time...would he have trouble with motor development.

Well it's taken abit of extra work but....check!

And I worried that he might not be able to survive...60% chance of survival with no complications...10% chance he might now survive at all. And just how tiny would he be, how hard would it be to grow and gain.

Looks like he's doing well on the gaining and growing...and the survival thing, well that would definately be a CHECK!!!

For you created me in my inmost being;
you knit me together in my mother's womb
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Psalm 139:13-16

I worried then what it must be like for him to be in there wondering why his brother wasn't moving and growing anymore.

Blessed are those who mourn for they will be comforted. Matthew 5:4

And although Cameron seems to have a hard time being alone and has an intense and focused look about him at times, I think he's making the best of things!!!

And so are we. Cameron is the best sign of a miracle that I've ever seen. God has blessed our family....we are so very lucky! His smiles can light up a room and we constantly get comments from strangers, family and friends about how happy he seems to he always like this? Well yes, most of the time. Sometimes he is so intensely sad in the middle of the night and I think that's when my boys play together most....and who would want to be waken and lose those moments of play with the brother you miss so much. But all in all Cameron is blessed with the most joyful spirit I've ever seen and you can't help but to feel God's presence when you are around him. I truly believe that he wouldn't be who is today if Cole had survived. He is who he is because of the love and life of his twin and although I will always wonder what life would be like if Cole was here I know that it would be a completely different world that we would be living in.
Thanks for being my miracles sons Cole and Cameron!
Praise God for He is Good!
Thank you Lord for blessing our family with this little miracle here and the little one you enjoy in Heaven. They truly are gifts from you that our family needed so desperately. I may not understand why things have happened the way they have but I know that you are with us and will guide us to Heaven to see Cole again. Kiss my baby for me....he is so very precious!