Tuesday, May 11, 2010

Deal With It

I follow the blog of a woman named Jennifer who was pregnant with spontaneous triplets….a fraternal and a pair of mono-di twins. I think I may have mentioned them before. I began following her blog after she posted something on facebook and I sent her a message because I was so moved by the feelings that came with reading her story. You see her TTTS story is so very different from mine, all of her babies survived the disease inutero but were born at 28 weeks. When I first encountered them the boys were 5.5 months old. Her fraternal and her recipient baby had been home from the hospital for months but her donor continued to struggle. At this point he had been given a tracheotomy and was breathing with the assistance of a ventilator through this. He struggled with his health and was still months away from coming home. His ‘twin’ brother was also struggling as it was apparent that he had brain damage and would likely have severe cerebral palsy. Thankfully the remaining baby seemed to be right on target in all areas.
I sent her a message to tell her how much their story moved me and how much it made me think. I was honest (though very diplomatic) in admitting that I always thought it was so hard to lose one or both of your babies to this horrible disease but reading her story made me realize that surviving it wasn’t all sunshine and roses either.
And then about 6 weeks after I began following their story devastation hit and their donor baby passed away from the complications of severe lung disease. I was amazed at the strength these parents showed, how absolutely dedicated they were to their faith, how honest they were and how much they did not let grief take over their lives.
I continue to watch their blog and was very moved by an entry she wrote last week as sleep evaded her and she dealt with the feelings about her grandfather’s very near death from cancer and how her mom is coping. She made me recall some of the feelings I had and have when people talk to me about how I cope, how strong I am and how I’ve accepted all the God has given me. And in four words… I Deal With It. In the words of Jennifer:
I dealt with it. I stood strong. I have faith in our God that he is home that he is where he is suppose to be. I have peace with this. Though my flesh yearns for his presence. My body aches to hold him. I feel like my mind is erasing him and every time I see his face in a picture the burning pain comes back. I shake it off and move on. I take care of my children. I do what I have to do. I don't drowned the pain in pills, cigarettes, massive quantities of alcohol. I'm not out getting high and I'm not sleeping my life away. I have something to live for. I have 3 children who need me. A husband who loves me and most important a God who loves me.

Things are different for us both…I do not have the daily stresses of raising a child with significant special needs but then again, I did not get to meet Cole, I did not hold his squirming body in my arms, I could not breath in his scent and I cannot picture him except to picture a mirror or Cameron. But I also did not have to watch him suffer, I did not have to run back and forth from the NICU for months and prepare mentally every few weeks that I may have to say goodbye to him. But we both deal with it and similarly we deal with it by turning to God to gain strength and writing about our sweet angels.

As Jennifer says, life sucks sometimes but it’s not a matter of bad luck or the injustices of the world. For me it’s about learning about myself and others through a long and hard journey, a rocky road to travel. When things get bad you have to turn to God and continue to praise him…it’s the only way to make any sense of it. When others say to me that they don’t know how I did it or that they wouldn’t have been able to do it…well I just shrug it off because I think “well what else could I do”. But I also think that I had so much to live for, so much good in the world and in my life that I can’t talk about the negative, the injustice, the sorrow. I can’t wonder what there is to live for because I know what there is to live for….they greet me with hugs each day and tell me how much they love me! And so I deal with it, I cope, I live with the Hope that I’ll see my son someday again. And I sing the praises of a Lord who gives us such amazing blessings, love and gifts. We are truly a blessed world!

Friday, May 7, 2010

Ordinary Days

My friend Melissa posted this amazing video on her blog of a woman reading from a book about the daily life of a mother. I was going to repost the video here but it's long and really I just wanted to comment on this part....
The Gift of an Ordinary Day by Katrina Kenison
If motherhood teaches us anything it is that we can't change our children, we can only change ourselves. So instead of wishing the children could be different somehow you spend each day trying to see what is already good in each of them and to love that.
My kids amaze me each and every day. Today Zack amazed me when he pulled out books and just stared reading to Brycen...just for fun, just because he could. Now Brycen, he amazed me for his internal knowledge of just how much Mommy needed a hug after I got home from Cameron's surgery. That and his hilarious comment about the water that came into the basement during this crazy rainstorm we had.... we were talking about the need to 'suck it up' (with the shop vac) when Brycen told us he could suck it up. When asked how, he answered 'with my mouf silly'. He amazes me with his ability to make me laugh!
Cameron amazed me today with his endurance after his surgery...he was so very agitated after the surgery and he became so upset that they had to give him sedatives. He fought and fought for 2 hours before he finally succumbed to sleep and during that time he amazed me with his ability to give me what I needed to see and feel most...the ordinary little boy I love so much...his usual laughter, usual babble, usual busy-ness and usual snuggles and love.
Ordinary days are really the best...and after months and months of un-ordinary days I think I can appreciate those moments so much more. Normal is good, ordinary is even better!
There are days that I do wish my kids could be different...that they could listen better, use quieter and gentler voices and not complain about all they things kids complain about...the food I cook, the toys we don't have, the things we don't do and the things they have to do. But I think I remember more than some, appreciate more than some, that celebrating what they are doing is so much more important.
This Mother's Day I am determined to celebrate the joy my kids bring me, the joy that being a mom brings me. I want to remember all those ordinary moments, cherish the joy that they bring me and remember how easily it can all be taken away. I know that many mom's of angels can relate when I say that Mother's Day is one of those brutally bittersweet days where you celebrate the joy that being a mom brings you and yet at the same time you are so painfully aware that one of your children is celebrating Mother's Day in Heaven.
So today I am promising myself that I will try harder to not wish my kids could be different....that I could change them somehow and instead look at them and celebrate all that is good and wonderful about all 4 of them. I am promising that no matter how frustrated I am with Zack, Brycen and Cameron I will remember the struggles we've had to have this family intact the way it is. I will also remember that although I wish with all my heart that my fourth child could be here and that I could change that situation, I also must find good in it too and love it just the same. I am who I am today because of all of my kids but most especially because of Cole and I will do what I can to honour him by seeing the good in his brothers and not trying to change anything about them or about him and his journey.
Happy Mother's Day everyone!

Thursday, May 6, 2010


Amazed…have you ever really appreciated that word for all that it can mean. I mean truly and utterly amazed. The dictionary defines it as
1. To affect with great wonder; astonish
2. To bewilder; perplex
3. filled with the emotional impact of overwhelming surprise or shock

My life has caused me many occasions to be filled great wonder and astonishment and most certainly to be bewildered and perplexed. But right now amazement is coming in the form of being filled with the
emotional impact of overwhelming surprise or shock.
I have just spent the last little while finally printing off the pages from our caring bridge site that we used during the time I spent in hospital keeping Cameron safe inside and coping with the loss of Cole as best I could. I decided to print the guest book as well and that is where the AMAZED feeling came in. Do you want to guess how many pages were there….how many entries??? 95 pages…NINETY FIVE!!!! And as I read them over I was amazed and filled with emotion. (and just to put it into perspective, the entries I made..that were typical of me, wordy, totaled about 60 pages when printed). Reading what I wrote in the journal is hard and emotional but it doesn’t begin to touch on the feelings I get when I read what people wrote to me. People who love me and can care for me and my family spoke about how much my writing affected them…but those who hardly know me touched me almost as much. I can’t even begin to cut and paste the ones the touched me the most…there are just so many. I am so truly blessed to have had so many great supporters. The words that were shared with me are…well amazing. Encouragement, prayers, stories and updates and most importantly words of love and support. Wow…just nothing else I can write about it and that says so much in itself!
The journey seems so long ago now…well that part of it anyway. But the amazement…that just never goes away. I am amazed in the bewilder and perplexed manner too much still…..I still can’t understand why this happened to us and why it’s so hard to let go of. I don’t think that part is ever going to go away, the hurt has diminished…that I will admit. Now it’s just kind of dull ache that comes on most when I read things like this, see ultrasound pictures of them both and share our story. There’s a hint of sadness in everything I do and some days I just hate that and other days It’s just a wonderful reminder of the son who has given us so much.
Most of all I am amazed in the great wonder and astonishment sense though. My family and friends amaze me with their support for us in our fundraising efforts. I can’t wait for the event, I can’t wait to share the joy and hope that Mt. Sinai gave us with others. I can’t wait to be amazed at the dollar value on the big cheque that we will present to Dr. Ryan.
And when I read the guestbook entries I continue to be amazed at how many people care, comment, know our story and supported us… and continue to do so. When I have a bad day and reveal it, someone is always there to help me pick up the pieces. Some of the most amazing supporters who amaze me the most are the other TTTS moms like me. Now that is an amazing group of women.
And I guess I would be lying if I don’t’ admit that I amaze myself too…in both the great wonder and astonishment kind of way and the bewilder and shock kind of way. I read the things I wrote and I think…wow, I can really write and express myself. I think, wow, how did I survive that intact and sane. I think, wow, I really impacted a lot of lives. And I am amazed at my continuing desire to help and serve God through what I truly feel is His plan for me in all of this…to share my story, my journey of faith through it, my ability to help others and raise funds and awareness and to grow and be stronger.
But most of all I am amazed at the amazing little boys that Cameron and Cole are. Cameron has survived so much and is just such wonderful, joyful child to be around. And to me, that is a testament to who Cole is as well…there is so much to Cameron that I know for certain that Cole lives there inside of him too. And tomorrow, as Cameron goes under anesthetic (for tubes in his ears) I know that the amazing child that is my Cole will protect his brother and keep him safe. I am so very blessed to have this reminders of God’s amazing miracles!

P.S. I’ve been told I should write a book and I just might do that….but have no idea where to go with that so any comments or recommendations…well they are totally appreciated!