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!!!
This comment has been removed by the author.
ReplyDeleteHi Jodi, I have been following your story since I joined the message boards at fetal hope. (becsbabies) It's nice to connect with fellow Canadians on this topic. My babies both survived their TTTS and we live to tell people about it. Unfortunately most people just don't get it ... they don't understand the seriousness of the condition. We are often asked if they are really identical because of the size difference between them. That opens the door for me to tell our TTTS story.
ReplyDeleteI don't know what our lives would be like had we lost either of them. I understand your need to tell people about Cole. People that know me also know that we have had our share of pregnancy battles I had 2 miscarriages before our first daughter that pregnancy was hard because the ultrasounds showed something wrong with the heart. It healed itself thank god. then 2 miscarriages and then had the twins with TTTS. My 3rd miscarriage was extremely hard I was 3 months along and learned that baby had been dead for about a month and had what is called a missed miscarriage. So I had been carrying a dead baby for a month and had morning sickness weight gain and all that stuff. The physical pain was the worst I have ever felt. I thought I was going to die. I went to the hospital and they gave me drugs and put me in a bed and said to ring them if I passed anything. Anyway you won't want to hear the rest but it was bad. So my point is ...you never forget your children. I used to tear up about it. Now I don't mind talking about it because there are so many people who lose babies. I lost my first the day after I found out I was pregnant and it hurt just as bad emotionally as that 3rd one. I barely had time to grieve the 4th and I was preggers again. WOW. all that in 4 years. I am soooo done.
I love that you are promoting TTTS awareness. Dr Ryan is a hero to my family. I am so happy he was able to save Cameron's life ... enjoy every minute with him.