I remember when my boys were babies and we were still brand new to this spectrum thing, I would often look out the windows of my house and see steel bars. Not literal bars but they were as real as the bars on any prison window. Every stay at home mom of small children can at times feel house bound but when you are a caretaker for someone with special needs the reality is often you are chained to your home. A caretaker is not necessarily someone who has a child with special needs. It can be someone who is caring for an aging parent, or caring for a loved one who is fighting cancer, or an invalid spouse. A caretaker is someone who is responsible for the care and wellbeing of someone who is unable to care for themself for an extended period of time. The amount of effort and expense it takes to find someone to fill your shoes for just a few minutes makes the simplest outing feel as impossible as a trip to the moon. People are quick to tell you "Oh honey you need to take a few minutes for you. It isn't healthy for you to be cooped up all the time." After about the dozenth time of hearing this, you just smile, nod and move on with your day. It isn't that you don't want to get out or that you are too stubborn to take a break; the truth of the matter is you can't. Even the well-meaning who offer help soon become overwhelmed and just disappear after handling only a fraction of your daily existence. So now what you’re left with are concerned friends that add yet another layer of guilt on your already unbearable load because you aren't taking proper care of your own needs.
This is a very real problem in our community. Burn out, depression, and loneliness for caretakers makes the day to day life seem overwhelming. Even extended family members have no idea how to help you. The truth is often caretakers feel like Job, abandoned by God and man, except for the "friends" who always are there to point out what you should be doing differently. It isn't that people cease to care but it is heart wrenching. It is often easier to turn our back on the situation than it is to continually be faced with such heartbreak. Even the church is guilty of this. We judge, we rationalize, we get busy but rarely do we stop our daily lives to help.
I spent years in this place. I was so desperate for help that I once wrote a note asking the Mormon missionary girls who were constantly in my neighborhood if they would be willing to babysit my kids (for pay) once a week while I cleaned my house. I stuck the letter on their windshield (they always parked on the street in front of my house). I figured I could deal with a little proselytizing if it meant I could do the dishes without someone getting hurt or melting down. They never came back to my house. I'm pretty sure they were convinced I was some sort of freak or an axe murderer. In actuality, I was desperate. It wasn't that we didn't have a church or family. We did but for whatever the reason, and there were a myriad of reasons, there was no help for to be had.
We have been blessed the past 4 years to be in a community where we are surrounded with friends that are a true support to us. I never knew what it was like to have this kind of support; I didn't know it was even possible. I am beyond grateful for the friends who now walk this road called life with us. But oh how my heart breaks for my fellow sojourners on these roads that are still walking alone. I know your road well. I know how your shoulders ache at the end of the day from the load they have carried, I know how you cry alone in the night (when no one else can see the tears), I know how there are days when you would trade all you had just to go to McDonald's and grab a cup of coffee by yourself. To just sit there for ten minutes without a thing needed from you. It isn’t that you resent what you are doing, it isn’t that you love the ones you are caring for less. It’s just that you are so very tired.
Yesterday I was privileged to attend a conference held through a national Christian organization that ministers to women. I love this ministry and see the huge amount of good they do. However, when I asked if they had any ministry geared for caretakers I was told no. They were very open to hearing my ideas but as of now they have nothing. That answer broke my heart. Caretakers are a large demographic of our society yet they are so easily over looked and disregarded.
So today I am publicly acknowledging a problem and I am asking you my fellow sojourners for your input. Tell me how a ministry could best reach you, how could they lighten your load enough so that you can for one day be around other believing women and be strengthened. Please tell me what this would look like to you. Comment below or if you prefer email me at firstname.lastname@example.org. I really need to hear from you. I want to put together a comprehensive plan that details out what is most helpful to you.
To you my friends who are not a caretaker, I challenge you today to look around you. I challenge you to open your eyes to the ones that are easily over looked. I challenge you to give of yourself, of your time, of your resources, of whatever you are able, to make a difference in just one person's life. Those 30 minutes you sit with the children or the aging parent could be a lifeline to drowning person. You have no idea how very much 30 minutes of your time could change the entire week for someone. For me 30 minutes to clean my kitchen would have made a world of difference. I love you all so very much. I do not write this to condemn or to point fingers. I write this because we are called to the least of these and sometimes the least of these are the people we think are the strongest. Sometimes the least of these are the ones who carry the world on their shoulders. Lots of love-Kristine
- I am the crazy mom of five boys. Four of my five boys are on the autism spectrum. Neuro-Diversity rocks!!! I cook, I clean, I blog, I breathe. Yup that is about it. If you want to catch a glimpse of our crazy world you are more than welcome but don't say I didn't warn you.
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