Saturday, March 9, 2013

First

Everything in disarray. That is how I would describe the last what year and a half I guess. So many lessons I have learned.  Something like a sick child really forces a person to see truths in their lives.

I think the biggest thing I work on everyday is a my marriage.  Besides financial issues we largely brought on ourselves up until December 15th 2011 our life was rather easy.   I don't think our marriage has or will ever experience the strain this illness has brought to it.

We are 2 different people and in most instances that works.  We enjoy the way we can give our children such a varied view of life and
Ideas.  Grief,anger, and sadness is a whole different beast.  It's different for me. I have a lot of guilt that I don't think anyone else around me gets. I mean I know I did nothing wrong that it's just extremely bad  coindence or luck but I can't help but feel responsible. Shelby doesn't have that particular guilt.

I know it kills him to see me when guilt takes over. He can't make it better. Men like my husband make it better when he can't he feels more helpless.  I am not saying the man is made of stone just my guilt and his guilt are different and sometimes it feels like we are each on separate but wholly visible deserted islands

I think for a long time trying to not add to my burden Shelby internalized and sucked down his own feelings in order to be strong for me. For all you men out there seriously we girls can handle more then you think.  It was a move that a lot of times made me feel very alone and like I was somehow like doing something wrong. Then one day it came out in a spectacularly unShelby move.

In a way I think his momentary I can't take this anymore,rip off the band aide, and make a huge change was the best thing he has ever done for us. I needed to know I wasn't the only one that was a crumbly mess. 

I think the last 2 weeks have put us onto a road of healing we desperately needed.  Being honest I was really sucking at the mommy/wife role. He was enabling me and I was letting him take over, basically being a passenger. I was also creating an environment where he was seeing me fragile every second of every day and he couldn't or wouldn't add to my burden.

Marriage is always work. If it's not you probably aren't doing it right.  It's important work, sometimes easy work but still work.  We love each other in the forever, toe curling, fireworks way there's no doubt I will always be his and he mine. That being said when you promise sickness and health you think of each other but when it's a child, the product of your bond I can't explain what that does to a person.

Our relationship  has to be good.  We have to put it first so that we are a united strong front.  Sometimes that means sitting down and saying "Look we are f***ing this up." I am so glad to report we are finally at that point. That in the mini crisis we are currently in we have found a way back to the basics.

Friday, March 1, 2013

What if? And What is.

Every once in a while I will see a mom and her kids.  Usually it's a boy older then Robbie and he's running or lugging groceries for Mom, or even carrying a younger sibling.  I stop and I realize that I will likely never have that w/ my son. I know I shouldn't wish for another's problems yet I can't help but wish that was my life. My boy that gets to grower stronger instead of weaker.

What if he was just 6?  What if there wasn't a mutation in his genes? What if I didn't have to worry about his gym class being too much for him? What if I could watch him race his sisters and win? What if he could walk flat footed, climb stairs, and run?  How I wish he could run. Robbie would love running.

Of course I know what a dangerous path those thoughts lead me down.  I know to be grateful for what I do have that somewhere someone is wishing for my life.  I cant help but envy those that will never walk this path.

I miss peace. At least I think I do. Life has been hell for us. I see Robbie's disease progressing and I mean it's too soon. It scares me. I just am not sure that I am strong enough to lose my baby. I mean every single damn day I pray for a cure, a treatment,anything.  Every night I go to sleep knowing today wasn't that day.  I just fear the day it's too late. The day I pretend wont come but I know will come if something doesn't change. I fear goodbye.

I am not doing great. Shelby is not doing great. We are living our own personal hell. It never stops. Life just won't give us an inch. Not a moment of peace. We couldn't even have a nice normal Disney trip.  I feel like everything we touch gets broken.

I love my kids so much.  I need to find my inner strength. I need to fight through this cloud hanging over us. I need to find a way to embrace what is. I need to be able to love today even w/ tomorrow hanging over me. I just wish I knew how.