Monday, March 25, 2013

Rest in Peace sweet Cayson

Cayson Sailor Page died on Thursday March 21, 2013, he was 7 months old and a little over 9lbs.

I have never met or even spoken to his mom Liz, but the connection I have with her is unbelievable.  In fact, the bond I have with all my TTTS parents is so near and dear to my heart.  I often worry about the time I spend online "with" them, BUT it's also the BEST therapy for me when it comes to Cullen.  I've said it before and I will say it again, Cullen gave me the gift to help others in this horrible similar situation.  Most times, I can accept this.  Cullen has given me more of an appreciation to life, my children, my husband, my family...

The ability to 'be there' for another mother in a similar situation is such a gift. Cullen has given this to me.  I now have hundreds of people in my life that I would have never had if Cullen hadn't died. Don't get me wrong....It would be WONDERFUL and AMAZING to have him back. BUT, that being said, he's given me the gift to find out more about myself.

You never know how your life will change, how events will change you, shape you.

Tuesday, March 19, 2013

it's always there....

I am wearing a pair of shoes. 
They are ugly shoes. 
Uncomfortable shoes. 
I hate my shoes. 
Each day I wear them, and each day I wish I had another pair. 
Some days my shoes hurt so bad that I do not think I can take another step. 
Yet, I continue to wear them. 
I get funny looks wearing these shoes. 
They are looks of sympathy. 
I can tell in others eyes that they are glad they are my shoes and not theirs. 
They never talk about my shoes. 
To learn how awful my shoes are might make them uncomfortable. 
To truly understand these shoes you must walk in them. 
But, once you put them on, you can never take them off. 
I now realize that I am not the only one who wears these shoes. 
There are many pairs in this world. 
Some woman are like me and ache daily as they try and walk in them. 
Some have learned how to walk in them so they don't hurt quite as much. 
Some have worn the shoes so long that days will go by before they think about how much they hurt. 
No woman deserves to wear these shoes. 
Yet, because of these shoes I am a stronger woman. 
These shoes have given me the strength to face anything. 
They have made me who I am. 
I will forever walk in the shoes of a woman who has lost a child.

This was a post on Facebook the other day. THIS is my life. I've not written since December, I've wanted to, but haven't. I mean, how many different ways can I say I HURT, but I go on each day.

Cullen has forever changed me, not for the bad or the good....I'm just different. 

With all the people I now know all over the world because of his death, I am surrounded by reality. This reality is REAL and frightening and ugly.  DEATH.  

Death surrounds us. People go on each day like it doesn't exist. 
I can honestly say I know lots of BABIES that fight for their life before they are born.  I know LOTS of mothers who wake up each day not knowing if the babies they are carrying will live or die to see their Birth day.  This makes me hurt so much.  

The journey certainly doesn't end once the babies are born either.  I have a friend who has her 7 month old baby boy FIGHTING for his life RIGHT NOW.  Baby Cayson was born weighing just over 1 lb. ONE POUND! He's fought his WHOLE life and now as I write this he is fighting to stay alive.  I can't even fathom how his family is dealing.  

Proper care during twin pregnancies MUST happen.  Proper procedures NEED to be in place to minimize intrauterine death, pre-maturity and long term health problems.  

 I just don't understand why there are no SET parameters for twin pregnancies.  

Did you know, (because I didn't) that some women get ONLY one ultrasound for their whole pregnancy?! that point, between 16-20 weeks, one or both babies could have been diagnosed and TREATED, but instead one or both die?  Poor OB care and the actual KNOWLEDGE some of these doctors have about TTTS is OUT-DATED.  

A friend of mine is trying to CHANGE the standards of care for twin pregnancies, these changes can make a difference between LIFE and DEATH of babies.  

PLEASE PLEASE sign this petition and help mothers pregnant with twins get the BASIC care needed to help save lives.