Tag: love

My brother recently married the woman of his dreams.  He brought 3 kids to the table and she has 2.  They’re the real life Brady Bunch that so many of my friends have.   Continue reading “Adrian & Susie Wed!” »

Nantasket Beach in Hull Massachusetts

We’ve been in Boston (well, Hull Massachusetts overlooking Nantasket Beach) since Sunday and have seen so many people we love and miss.  Friends and family.  People who have seen Rachel decline since 2009 and were able to hide their sadness after seeing her decline of 9 months (since we moved) better than I expected.  I have only cried once since being here, maybe twice.  Not bad, all things considered. Continue reading “Hull, Massachusetts trip during Easter 2015” »

To put it as directly as possible: my oldest daughter is dying, I’m a single Mom and life is a bit tough at present.

I realized that I was due for a magnificent stress relief yesterday. I was at the bus stop putting my daughter on her bus with my Mother at my side. It was not a regular moment, my Mom was in from Boston visiting myself and my children. I had let my daughter stay home all week from school so she could spend every waking moment within fingers’ reach of my Mom. Continue reading “Grief Released” »

For Thanksgiving we had a great time at the Schnelker household who graciously offered their home for Thanksgiving:

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License PlateI’m at a point in my life where I believe that people who don’t struggle on a daily basis with at least one major issue aren’t in touch with life.  Who they really are, what they really want, how they really feel. I have been struggling with my internal feelings of being worthy and being good enough and have been thinking about this struggle a great deal.  This really expands on my life long belief that states “everyone has something.”


I have realized in my quest for understanding that people who struggle with that beautiful feeling of believing they are good enough, believing they are worthy… These people also struggle with feeling vulnerable.


I do an impressive job of looking like I have my life together despite some very tragic details.  My husband and I have been separated since July, my oldest daughter is dying from a genetic disease that I had hidden inside of me and I live with the guilt of marrying my oldest’s father after knowing him only a week (a detail which would have prevented this disease in my daughter). Guilt over being depressed, guilt over not finding some way (although it is truly nearly impossible) to help my 3 other children foster relationships with kids their own age.


Sometimes I struggle with leaving the house. I have always hated being confined to the house so this struggle is ironic since I can’t leave my house very often due to work, a sick child and a small vehicle.


I don’t really trust anyone to take care of my children except for me and I really don’t believe I do a very good job.  This is all deep down inside stuff.  If you asked me, rationally (and I am a rational person above all else), “do you think you’re a good mother” – I would say “yes!” and feel completely confident that dozens of people who know me would gladly stand up and say the same.


I have provided my children with some amazing life experiences.  Knowing what I know now I would have done more but this horrible disease called Batten Disease came along in 2009. Road trips, Make A Wish, Disney World, meeting distant relatives, putting a pool in the backyard, chickens, camping, thanksgiving dinner every week.  The list is impressive and yet I still feel like I am not good enough as a mother.


How can I really believe that I am not worthy as a mother with what I have accomplished?  I compare it to a licensed physician not feeling worthy to be a doctor.  


I have spent some time lately really considering myself, my life, my relationships.  My failures.  My successes. I have spent a lot of the past couple of weeks in tears.  It has been hard and I am so unbelievably far from myself but I wanted to come clean. On a blog. This is as close to a confessional booth as I will ever be.


I am capable of love and loving, even when there are no guarantees that my love will be returned. Most importantly I declare that I am worthy of love.


Happy 2014.  I am glad to be here. I started this year off with an airstream in my driveway which needs more work than I have any idea how to do, with 4 children asleep in their beds and with a promise to myself to live my life as emotionally naked as possible. With true authenticity I believe my dreams will come true and the good people will stay in my life and those that leave will be replaced by more authentic people who are worthy of MY love and time.

crazytimeEarlier this year I read a book called Crazy Time, it was recommended to me by my husband (who I am currently separated from) to help get through the emotions / motions of separation, divorce or whatever label you want to put on where we are at.  Here is a link to the book on Amazon, its actually a pretty good read that explains a lot about relationships (not just romantic ones).


Crazy Time: Surviving Divorce and Rebuilding a New Life


The funny part about the book in relationship to my life is that you really can’t just build a new life when you have kids, have a dying child and work with your spouse.  Splitting up is easy enough to do, just have some wine or whiskey on hand for when the nights get lonely.  But its the aftermath of the split that you have to be super careful with when you have children.  It’s especially hard with a sick child, and having a special needs or terminally ill child will often bring families to the edge of divorce.  Loving my children means loving their father, he hasn’t done anything to me or our children that makes our damage irreversible.


It is be so easy to hate the other parent.  It is so unbelievably easy to feel angry and resentful.  I was honestly in that place for several weeks.


In the space between my spouse and myself I have learned about self discovery. And within my period of self-discovery (which is thankfully still ongoing) I have found within myself the gift of love and of forgiveness.  To forgive myself, to forgive my husband, to try and see past the negative aspects of my life that have brought me to where I am right now.  To love, to forgive to live despite some pretty miserable circumstances and to see the light in my life when there is a lot of darkness.


My life is certainly not where I want it to be.  I’d like a Norman Rockwell life.  But really, I ask you, does that kind of life actually exist?  On TV we are being sold a false bill of goods that is absolutely unattainable and leaving people feeling low, like they have fallen short.  I won’t feed into the media, into the mainstream and judge my life against what society / media  tells us life should be like.


If I can love my children, their Dad, my life in a deep and meaningful way I know I can truly sleep at night with peace in my heart. This is probably the hardest thing I have ever done (change the way I think on a primal level) but it is proving to be the most rewarding change I have ever made.


As one of my favorite musicians ever, John Lennon, said it best with the song “All You Need is Love.”


It’s the most simple, clean truth there is.


My life *IS* crazy time but I live with 4 young children and the oldest is blind, can barely walk and has dementia. Imagine old lady dementia in a hormonal 13 year old.  It is pretty horrible, truth be told. Approach my kind of life with fear and anger and the results are unbearable.  Approach it with love, a sense of humor and a light attitude and the rewards can be endless. Crazy Time.  Embrace it no matter what “Crazy Time” means to you in your life.