A mother's heart

Summer break is nearing it's end for my kids.  I am trying to show them a good summer while still working my butt off at my paying job. The problem is that kids just don't understand the financial burdons of trying to raise a family on a limited budget while trying to save for what is to come when one of the parents has a chronic painful disease.
They want to go, go, go. I want to sit or sleep. I just can't seem to find the energy to do what they deserve to be doing as children. It breaks my heart to tell them they can't go somewhere or do something because we either don't have the money or I just can't find the physical strength to do it. I am letting them down!! They will carry this with them for the rest of their lives. Some day, when I am dead and gone, they will be sitting together at a holiday or something and discuss how they never had the money to do anything fun or mom never wanted to play with them.
How do I explain to them that I fear for the financial future of this family. That I can barely make it through my shifts at the hospital as it is and that as my disease progresses it will only get worse and I won't be able to work at all. How do I explain to them that we could lose everything just because I have the fortune of having a chronically painful and dibilitating disease? They should not have to understand these things. They are children!!
Many people who have chronic diseases find themselves asking "why me, this is just not fair". I went through that phase for like a day. But I am way over asking "why me" and find myself asking "why them"? My disease is just not fair to them. The fact that I have to say no to them because I am sick sucks beyond anything I could ever imagine. The pain in my heart when I have to say no to them all the time is beyond any pain this disease could ever inflict on me.
So, when I say that I wish there was a cure for this disease, it is not for me. It is for them!! They don't deserve this. This may be my karma, but it is not theirs!! This disease affects way more than just the person with the tragic luck of getting it. It affects all those that love and care for them. It breaks a mother's heart every time to have her children watch her fall apart.



I understand what you are saying......I do. I hurt for and with you.....hugs! When I look back at my own childhood.....my Mother was seriously ill and my Father raised five children.....she was hospitalized most of my life. We did not have much if you base it on things.....we didn\'t have fancy trips or designer clothes, we didn\'t have a lot of money period. We did have a home, a lot of laughter despite the trials and tribulations....we were loved...our needs were met....there wasn\'t always money for our wants, but did it hurt in the long run? No.....we made fun and memories by being a family....we ate out once in a verrrrrrrry blue moon. We ate at home/had picnics with bologna or peanut butter and jelly sandwiches....we played board games/we studied together.....we had a lot of family time where we all did the work together. We all had responsibilities to our family to take care of the yard, the home, each other and do our best each day to do what it takes to do each day. My Dad used to say we all work until the work is done and that\'s how it went. One kid pushed the mower, another pulled weeds, one picked up apples off the ground to make way for the mower, we took turns with that thing that pulled the dandelions up by the roots. We all worked in the garden, another person raked and so on. There was a joint responsibility and a joint effort....period. Same thing with the house, we all had to help...one person dusted, another vacuumed, someone else swept and then another would mop or gather up the laundry. We had to take turns making the grocery list and on and on it went. We learned about how to run a home together. There was not a lot of money for extras....I remember eating crackers with milk and sugar when we didn\'t have cereal. It was an adventure...didn\'t even know we were that poor despite how often my Dad said we would end up in the poor house. Our yard was our primary entertainment and we used it....played ball, croquet, badminton and made games with leaves (houses and piles to jump in), there was a lot of tree climbing and bike riding and basketball ....an old hoop on the garage with a gravel driveway. We did chores dirt cheap for neighbors or babysat for 50 cents an hour or worked with Dad just to get to be with him.....we checked out books from the library.....we had to live a very simple life but despite hardships it was happy.

What I am getting at is this.....you are doing the very best you can. You are doing more than you physically should and I\'m always in prayer for you.

You and your family can build character, integrity and love together by being a close knit unit that can do what it takes.....they don\'t have to know everything, but don\'t think that the absence of things is a deal breaker....it\'s not. It won\'t hurt them do do without fancy clothes or things.....they need love, support and the basics.....they need encouragement to become independent human beings. They need you to set guidelines of right and wrong, to care about themselves and to care about each other, that includes you/their father as well.

I care about you, I know you are grieving and it is hard to grieve your loss of abilities and some of the wants you have for them.....but don\'t forget the greatness of love and being together as a family. Their needs....the basics are more than good enough if they have your amazing love, your wonderful support.....exactly as you are, that love is unconditional.....they are capable of helping you and still having time to be kids....I know we did.

It didn\'t hurt us to do some hard work for our family\'s care and keeping.....that foundation gave me/my siblings what was needed to work hard for our goals in life.....whatever the challenge or circumstance. Your kids would rather have you.....when I was growing up it never occurred to me to ever say I hate you to my parents....never. My children have never said anything like that to me or their Dad. What we had was made stronger by our reality....we didn\'t snap or break....because we had each other.

Love is the tie that binds......the other day my daughter said to me that it is hard, she would love for me to be well, for their to be a cure....but that is not the hand we were dealt. She knows that love is more important...that\'s a bottom line with her and with my son.

I have grieved what I couldn\'t do or bring to the table....that\'s normal and so very human.....but the love we have is more important than being perfect, healed or whole....we are the best Mom for the job exactly the way we are.... please give yourself a huge amount of credit for all you do, all you have and mercy me you do so much!!!!!!!!! I have faith in you.....to sort this out, figure out the best way to do this life journey and know that you love your family very much......for whatever reason we have these conditions we have them.....and we have to find a way to keep our tanks fueled with gas....if your tank is empty then you need to stop and refuel....let me encourage you and lend you support.....sometimes we can drive ourselves to distraction with guilt and grief......look at what you do have and what you can do and use some of your time to get guidance regarding all options available to you......your long term health is so important.....how you spend your time now will have a huge impact on your health in the future. I wish with all of my heart that I had been brave enough to figure out how to stop working all those years ago....I was so stubborn and so afraid.....that I never really explored any other options than what I was used to doing.......it has come at a very dear price to me.....and mine....because I didn\'t slow down....I pushed and battled and grieved for a really long time. I think you are an amazing woman and I think you should know that about yourself.....you are more than your conditions...you are so precious and have such love for them......they need your love more than anything else my friend......sorry for going on and on...babbling and rambling......I have a real desire to see things get better for you....the heart and soul of you......you have a real spunk, a feistiness that is so amazing....you have a great sense of humor...you have such determination and even when you are hurting there is such depth, intelligence and grace.........I know you want so much for them.....and love, they want and need you first and foremost........you are the sun, moon, earth, stars and wind to them.......gentle hugs.....so tired now, nap time for me!