F@&! Pity

Naomi changed from public school to catholic school in August of 2011. My dad was in the hospital at the time that school started, and he died right after school started. To say the least, since we joined the community there, my life has been in a bit of a downward spiral. I have not made a huge effort to try and meet people.  This community is very tight knit.  They take care of each other.  I have had people we hardly know offer to help us.  We have felt welcomed and loved.  More importantly, my kids have BEEN loved.  People take care of them and nurture them there.  And they pray for us. 

We also go to Mass there. I had to go to programs at Christmas time.  With a walker.  I have my braces now, but I get looks.  I get looks at Mass as well.  Smiles and looks.   I know I look weird.  How many people have you seen with bilateral AFO's walking around?  I worked with people who had a chronic illness, and I cannot remember seeing anyone.  I have taken an informal poll.  No one has seen anyone with these braces. 

I feel the looks of pity in the eyes of the other mothers when I pick up my kids from school.  I have to walk to get Gabe.  I could let Naomi pick him up and bring him to the car, but he is always so happy to see me.  I see looks of pity at Target from other mothers doing their shopping.  Looks of pity at the park. 

I understand.  I smile.  I know.  I would be looking you the same way. 

How I can relate to Oscar Pistorius

DISCLAMIER:  I am by no way saying that he is not guilty.  He may have done this horrendous killing.    The story is shocking and sad no matter how it happened.

How does an overweight, 36 year old, mother of 3 relate to an Olympic Athlete?  This summer, we watched the Olympics.  It was so good to watch Oscar Pistorius.  We talked to the kids about him.  If this guy can qualify for the Olympics, you can do anything!  He is inspiring. Look what he has overcome.

When I got fitted for my braces (before his arrest) and I was feeling so bad about my life.  Brett reminded me about what we had said to the kids.  I know the situation is different.  But I did think about it.  I can do this.  I can do anything. 

Then after his arrest, I was watching some news program laying out the events of the story.  In some interview, they said that he did not have his blades on at the time of the shooting.  And that he felt vulnerable.  That has stuck with me.  I know how he feels.  

Brett starts his travel season soon.  I have never liked it when he is gone.  I feel alone.  And  vulnerable.  And now more than ever.  I was trying to figure out a way to sleep with my legs on. I can barely walk without them.   I cannot get up quickly if something were to happen.  Sick kid.  Fire. Tornado.  Someone breaking into the house.  Maybe I should time myself and see how quickly I can put them on.  Maybe that would make me feel better.

 Maybe…..

F@&! cancer

I miss my Dad.  So much some days it hurts.  I had a dream about him the other night. My therapist (who I have recently broken up with when she told me that possibly I got this disease because my body was trying to tell me to slow down.  WHAT THE FUCK?!?!?  There are lots of people who are way busier then me that do not have this crazy rare disease.  She pissed me off, and made me feel like this was my fault.  Maybe this was some projection because I DO feel like this might be my fault.  Way too much psychology for me.  Maybe this is a separate blog post.)  and I were talking about how to get through the process of getting stuck with the IV.  My blood pressure goes really high when they do this  I can feel myself getting anxious as I get out of the car.

She was wanting me to go to the place I love best.  I went to backyard of my parents house in Estes.  I can feel the summer breeze, smell the air, and I see my dad on the back porch waving at me. I practice visualization before I go to sleep at night so that it easy to achieve while under stress (it really works by the way.  My BP was super high the first time around, the second time after the visualization, so much better.)   In the dream, I could see him, telling us to come up for dinner.  He was grilling hot dogs and chicken.  I was sick in this dream, and I was trying to get to him.  I was struggling to get to him.  I was using my cane and having trouble in the backyard going over the rocks.  I was yelling at him to come and help me and his back was to me and he would not come.  I know, more psychology.  I get it.  But I still hate it.

I just want to call him and get his advice.  Advice on how to deal with our new life and how to pay for all of this.  Advice about work and where to live.  He was so good at listing and helping send us down the right path.  He would never really tell you what to do. He would just nudge.  Like when I wanted put off going back to college for a  year after my freshman year.  He said that I should go back, if I did not, he was worried that I would not go back.  That is what he did.  He said he would always go back and he never did.

He spent 31 days in the ICU. I was only there for 12 of them.  They were hard days, and I was not there for the hardest.  The last day I was there, my dad was having a hard time getting comfortable, and I was trying to help put a pillow under his hip.  I asked him what hip he wanted the pillow under, he said he did not care.  And I yelled at him.  I told him to start caring.  He was sort of out it that day and he never acknowledged my outburst.  Nick walked in moments later, I kissed my dad goodbye, told him I would be back over Labor Day and I would make him some chocolate chip cookies.  And that was it, the last time I saw him alive.  I was back over Labor Day weekend, but it was for his funeral.  No cookies. 

It is hard to do, but I choosing to not to remember those days when he was sick.  I remember my dad holding my babies.  I remember working with him at Big A.  I remember one day I hit the building with the old white beat up truck we had.  He ran out, and just started laughing at me.  I can still see his face in the rear view mirror laughing.  I can see him when Nick is sitting on my couch, crossing his legs.  I can see him in Gabe.  Gabe shares his way of wanting to figure out how things work and how to make things work better. 

So fuck cancer.  Fuck it.  I want my dad back.  My healthy dad. 

3 women

I spent time with three of my friend this week. On Monday, I spent time with the newest friend. Although I feel like I have known here forever. I met her and things in my life sorta started to fall apart (I promise I don't blame her for any of it!). She stuck by me. She has called, sent flowers, and watched my kids. She has made us meals and offered to clean our house. She is wonderful and kind and makes me want to be a better person.

Wednesday was my middle friend's birthday. She and I met at work. She was newly engaged and I had just moved in with Brett. We got married a year apart and started our families around the same time. Our kids have grown up together. We have been through a lot together. Deaths of parents, births of babies, and the cleaning up of middle school showers after a MS 150. You never know how close you are to someone until you have picked up pubic hair covered soap with them. She is sarcastic and funny and shares my passion for baking.

And Thursday was spent with the one I have know the longest. College was a wild time, and that is where we met. She knows more about me than Brett does. The 3 times I have been to see male strippers have been with her. She has a new marriage and a new baby and she is full of life. She has a passion for children and she loves kettle chips and she is so thoughtful.

The best part about these three is that they remind me that I am still the same inside. It is easy with all of them. And I love them all. During this time, it has been very easy to hide. I can say I need to stay home because I am too tired. It is hard to take my kids (especially Isaac) places by myself. These women won't let me hide. I am so lucky to have them by my side. This week, I did not feel alone.

Mothering

For the first time since November 1, I am mothering my children alone.  Back to the way things used to be before.  Except not.

My mom was here a very long time this winter.  I spent a lot of the time she was here sitting.  Checked out in the chair in my living room.  I got out of bed every day (except the day I had the lumbar puncture, and maybe the day I was diagnosed).  But she mothered my children.  She loved them, read to them, went to school functions, did it all.  When Brett got home, she stepped in there as well.  She helped with dinner and homework.  All the while, she watched me go through the pain and the lack of a diagnosis.  I cannot imagine watching my child suffer.  But she did.  My mom has been through hell, to say the least.  I know she will come out on the other side.  To say I love you and thank you seems far too simple.  

My brother was here.  My inlaws. My sister.  They were all here for a short time.  Now it is all up to me.  And, I do not want to count my chickens before they have hatched, but we all made it through alive.

It was not the week I was worried about, it the long haul.  We are looking at moving closer to family. Brett is tired.  I am tired.  We will need help getting through the treatments.  I have always been a planner.  This disease is making it very difficult to plan our life.

But today, and tomorrow, and forever, I am being a mother.

F@&! my legs

It is time for shorts and skirts and dresses and capri pants.  And I have these ugly leg braces.  I have a choice to make.  Do I want to be hot all summer and wear jeans?  Or do I not care?  My legs sweat with the braces on.  I was wearing long socks to help the rubbing on my shins, but I was way too sweaty now that it is warm.

We put away the jeans and got out the above mentioned clothes. I got ready for work and put on a knee length jeans skirt.  I look so silly.  These braces look like soccer shin guards.

Yesterday morning, we were headed to softball practice.  I put on capris and was looking in the mirror.  Naomi came in and asked me what I was doing and I told her that I was looking at myself.  She said that she thought that I looked good.  And I said that I did not think I looked good.  She said that the leg braces mean no walker, right!?!  So who cares Mom!  She gave me a big hug and left, unfased by whole conversation.  She is wise beyond her years. 

I have to be ok with walking around like this.  I need to find some new shoes.  I need to get some clothes that fit.  But for now, for today, I am going to be ok with this.  I am going to show my kids that being sick is nothing to be ashamed of.  I went to practice, and I got stared at, and I just smiled.

So here I go, I am coming out, legs blazing....

(notice my husband has GIANT pruning shears on the step? I think he may be trying to kill me.) 

And here is a picutre of me and Brett and Isaac just because they are just too cute....

Update

It has been a long week.  My treatment went well Monday and Tuesday.  I overdid it on Wednesday.  I am tired.  I have to work this weekend. I had a mental breakdown yesterday at physical therapy.  Heidi, my PT, was wonderful.  She let me cry and got me some tissues and some water.  I stretched through the breakdown.  She made me laugh by saying that she was impressed that I was stretching though the tears. 

I sorta thought about running away.  I know it would not help, but there is something about driving that helps sometimes.  I did not have a great plan.  I did not run away.

My sister and nieces have been here.  She cleaned our house.  She helped me put away our winter clothes and put our flannel sheets away. 

Isaac is back with us.  He promptly made himself at home and ate the heads off all of everyone's Easter peeps.

Kids start back to school on Monday, Isaac and I are on our own. 

Life carries on...