Sunday, April 15, 2012

Coming up for More than Just Air

Just a few photos that were taken over the past month and a brief explanation as to where I have been hiding.  Even in the midst of mostly joy, life can be very messy and sometimes we must spend some time trying to clean it up.  More about that later...
Angel Daughter Number Three turned 20 on the first day of spring.  She is becoming such a beautiful and mature young woman with such a great head on her shoulders.  I am prouder of this child than I can even express.  She has been through some rough times but instead of becoming jaded and delving inward, she reached out and in doing so, has shown a level of maturity beyond her two decades.  I can only see her life getting better and better as she continues to grow into the lovely woman that she is.
My oldest and my youngest.  There are six years between these two(with two other sisters in between) and sometimes, it is as if they grew up in different worlds.  We often talk about the differences in the things that AD1 was allowed to do when she was AD4s age at various points in time, and there are some huge differences!  That being said, they are both wonderful girls with so much to offer the world.
I am such a lucky momma.

And Mark is such a lucky dad...

Okay, so my 20 year old is a little bit taller than I am.  She is also wearing heels that double the difference!

Angel Daughter Number Two congratulating her little sister after her dance competition in Long Beach.  It has been a great season!

So here it all is in a nutshell:

On March 26th a very unexpected crap-storm came flying at me from what seemed to me to be out of nowhere.  Actually, it did come out of nowhere for me because I had not been privy to the conversations which were taking place over the course of a couple of months.  It blew in from the mouths of those I love and trust most in this world, forcing me to stand mostly on my own, confused, frightened and in immense pain.  I felt like a cornered animal who was being forced to explain fangs and claws and venom while trying to protect myself.  Chronic illness, chronic pain, and chronic fatigue are symptoms that I am forced to live with because of an illness that will more than likely be a part of me until the final day of my life,  but they are also enemies of the people who I love.  Aside from the life that this illness has attempted to take away from me, it has also robbed my husband and my daughters of the very vibrant person I was before the focus of my days became staving off the constant pain and lethargy, trying desperately to conserve the minimal reserve of energy that I am left with after fighting a daily, hourly, momentary battle with something that even I, myself, do not fully understand.  I understand their frustration.  I am sensitive to it and do my best to remain cheerful and positive in the face of the physicality of feeling like hell much of the time.  But having lived with this mysterious illness throughout some of my younger twenties and then again, after a long remission, for the past decade during my forties, my acceptance of what is apparently appears to be complacency to my husband and daughters.  I readily admit that it is often easier to give in to the physical pull to remain inactive physically so that I can be emotionally present for the people who are so important to me, yet it is difficult for them to comprehend what it is like to live with constant, chronic, nagging, sometimes severe physical pain.  I get that.  I do not dwell on it too much which sometimes creates a false veneer over the truth of what I go through.  Maybe this makes it harder to comprehend?  I forgive them for their chosen approach.  I know that it came from a place of worry and concern.  I do, however, wish that things had been handled very differently.  Feeling ambushed is an extremely lonely and helpless feeling, especially when the individuals who were helping to fuel the charge knew nothing about me personally and had a huge financial gain as their main interest.  This is the one part that I am having trouble not resenting.  Strangers should never, ever have been involved.  I think that we have reached a point of understanding.  I am making some changes in my medications which might enable me to feel less sleepy during the day(under my doctor's care).  I am also increasing my activity levels so that I can better keep up with these five, very energetic, very healthy people who I love so much.  I may or may not choose to write more about this in the future.  It has been extremely painful for me.  If I do, it will be to inform and assist others who might be in the same sort of position that my family and I are in.  Having a family member who is chronically ill is not an easy thing to cope with, but being that family member is always worse.  Please be gentle with those you love, but also be gentle with yourself.

11 comments:

Renee said...

I have wondered how you were due to your absence on the web. Sorry to hear you have been going through such a struggle...emotionally and physically. Chronic illness takes its toll on everyone but especially the one who lives with it on a daily basis. Gentle hugs for you Deb and prayers that all the changes make for a better quality of life.

Ginny said...

Debra-

You have such a beautiful, beautiful family. I am sorry to hear about your heartache and pain. As I read your words I could totally relate. I was just thinking the other day -how I used to be so bubbly, vibrant, and happy and now- I have to fight for that...for me. It is hard to relay to family and loved ones how we truly feel. I do better in my blog than I do with words, even with my husband and parents. I came across this link a little while ago. It helped some of my close family and friends understand. I hope you will enjoy it too. Praying for you and sending hugs your way.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Deb Colarossi said...

Wrapping your soul in love Deb.
This too will pass.

Look at those babies. And don't stop.

Angella Lister said...

Dear Deb, I am sorry you are in physical and emotional pain. One step at a time, my friend. You are so loved.

Ness said...

My dear, sweet Deb, my sister in CFS, fibro, pain, depression, etc.

I pray for you and the Angel Family nightly. I have those, too, who are related to me that tire of me being in my recliner, needing a lot of alone time and the list goes on. But with 1 daughter choosing to leave as a result of something she did to her sister, I have discovered my boundaries and those left in my house are very, very understanding and would take the suffering for me. Know that I understand and I love you with all my heart. Your Angel Daughters are so very lucky to have a mom like you that tries to be there for it all. Hang in there dear friend.

Kathleen Botsford said...

Love you and miss you! My "boys" are in LA all next week....Maybe an afternoon or evening on the phone????

Anonymous said...

Thank you Deb for your courage to share this. It means a lot me. Sorry you have had to endure this. Gods's blessings and healing love,
Another friend of the pain of suffering club,
Susie H.

Miss A said...

I've come around a lot this past week to read your words and try to make sense of them. What I gather is that perhaps your loved one haven't been as sensitive to your medical condition as they should. It's not a criticism. We are only but human. I do hope whomever is leading them in that direction will stop (or be stopped).
One of my good friends out here also has the same thing and there are weeks when I don't see her because she is at home in the dark. As a result she cannot work. Noone is very supportive of her, including her parents who have declared her lazy (she's 40). It's just baffling how empathy for some only works according to their terms.

I hope you feel better, both physically, and emotionally. Take care of yourself.

Laura said...

oh dear one...I hear you and my heart hears you, your frustration, theirs...it is not easy for them to imagine being on the other side of the bridge, having never lived the chronic illness experience...

sending love as you all find your way to healing in the midst of pain...it is possible to find that balance...at least some days.

Peggy Payne said...

I'm so sorry about the bout with pain, Debbie. I hope the whole thing will go into remission again. And stay there.

And thanks for all the Revelation love.

RottenMom said...

I'm really sorry that I missed this and am not responding until now. I was kind of wrapped up in my own struggle, as you know. I can't imagine what it is like for you to live with chronic pain, I do know what it's like to try to be so present in the moment, and just not being able to get there on my own. Thank you for the sweet kind comments on my blog, I appreciate knowing that someone else understands.

And finally, my goodness, YOU ALL ARE ONE DANG GOOD LOOKING FAMILY!

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