Change the world
2:33 AM
I am hard wired with an innately oversensitive awareness of justice and a compulsion to correct the injustices. I have been this way since I was a toddler worried about the homeless having to sleep outside on the cold winter nights and the children who had no one to love them. My special passion is for children in need, children cast aside by society, children without a chance, children in desperate poverty, children abused and sold as objects. The problem is that the problems are so big and I am so small. It is very easy to get overwhelmed and think that it is impossible to do anything. I want to change the world, to purchase a house in one of the many poverty and AIDS ravaged countries and take in as my own the children no one wants, to change laws and policies, to build schools and shelters and safe places to be a child. Yet for some reason God has decided that, at least for now, I am not going to be in a position where I have the financial resources or health to do all the life saving, life changing things I would do if only I had access to money. Instead I am at a place where I can change the world in smaller, more personal ways. I can change the world for three little girls. I can occasionally support orphans with special needs at Sarah's Covenant House. I can give a little to Reeces Rainbow so that a child can be rescued from a life in an institution. I can do little things with great passion.I can change who I am to be a more open, responsible, dedicated, unafraid to advocate person and that too can change the world. Simple love can change the world.
I Have a Dream
5:35 AM
I could never write a speech as eloquent, as rich in truth, as powerful as those written by Dr Martin Luther King Jr. He led the way to changing our society and he did it without violence or hatred.
In honor of the day set aside to honor him I wanted to write my dreams for our country and our world, the call to action I would set forth for society were I in such a position to be heard.
I dream of the day when no child dies of the effects of poverty. A day when every child will have enough to eat, clean water to drink, and homes that shelter during the storms.
I dream of a country where health care is a right and not a privilege. Where we recognize that as part of our constitutional rights of life, liberty, and the pursuit of happiness we have a right to access medical treatments that will extend our lives, give us liberty, and allow us the opportunity to pursue happiness.
I dream of the day when discrimination based upon disability is vanquished. The day when society will not observe an individual with a disability and automatically come to conclusions about their quality of life, their abilities, and their value. A day when we will be seen for the people that we are and not the disabilities that we happen to have.
I dream of a day when all children from all socioeconomic levels will have equal access to quality education. When children of every race, every nationality, every religion, every ability will sit together in our classrooms and be engaged and challenged by teachers who are supported and properly trained.
I dream of a day when children can just be children. When they will be safe from becoming child soldiers, when they will be protected from the gangs that attempt to recruit them, when they will have the mentors and parental guidance they desperately need. A day when all children can play together without fear.
I dream of a day when all religions learn to respect one another, to honor each other instead of committing horrible atrocities in the name of their God. The day when the unifying message of God is Love is given life and breath.
I dream of a better tomorrow, of a world where everyone has enough, of the end of racism and sexism and ableism, of the innocence of childhood, of peace, of coming together instead of tearing apart. I have a dream.
In honor of the day set aside to honor him I wanted to write my dreams for our country and our world, the call to action I would set forth for society were I in such a position to be heard.
I dream of the day when no child dies of the effects of poverty. A day when every child will have enough to eat, clean water to drink, and homes that shelter during the storms.
I dream of a country where health care is a right and not a privilege. Where we recognize that as part of our constitutional rights of life, liberty, and the pursuit of happiness we have a right to access medical treatments that will extend our lives, give us liberty, and allow us the opportunity to pursue happiness.
I dream of the day when discrimination based upon disability is vanquished. The day when society will not observe an individual with a disability and automatically come to conclusions about their quality of life, their abilities, and their value. A day when we will be seen for the people that we are and not the disabilities that we happen to have.
I dream of a day when all children from all socioeconomic levels will have equal access to quality education. When children of every race, every nationality, every religion, every ability will sit together in our classrooms and be engaged and challenged by teachers who are supported and properly trained.
I dream of a day when children can just be children. When they will be safe from becoming child soldiers, when they will be protected from the gangs that attempt to recruit them, when they will have the mentors and parental guidance they desperately need. A day when all children can play together without fear.
I dream of a day when all religions learn to respect one another, to honor each other instead of committing horrible atrocities in the name of their God. The day when the unifying message of God is Love is given life and breath.
I dream of a better tomorrow, of a world where everyone has enough, of the end of racism and sexism and ableism, of the innocence of childhood, of peace, of coming together instead of tearing apart. I have a dream.
Odd Skills for a Resume
11:49 PMI was thinking, because I have been having chronic insomnia and there is nothing better that I could be doing, that I have some incredible skills that would be the glory of any resume.
I know exactly how many matchbox cars will flush down an industrial grade toilet.
I know how to pick a lock to rescue the child who accidentally locked themselves in the bathroom/bedroom/closet.
I have the book brown bear, brown bear memorized. And each peach pear plum. And if you give a mouse a cookie.
I can do the hookey pookey and believe that really is what life is all about.
I can fit a weeks worth of groceries into two reuseable bags on the back of my wheelchair.
I can make special education equipment out of pool noodles, velcro, and duct tape.
I can have entire conversations in my sleep.
I can skip long security lines in a single bound.
I can sign most major curse words.
I can change a diaper, with kid standing, in about 30 seconds.
I can piss off authority/superiors before I even meet them.
I know all the verses to the wheels in the bus, and that bus driver needs a raise!
I can look at fourteen children and blatantly lie by saying it is raining because it is too freakin hot to breathe outside.
I speak toddler.
I am fluent in Pig Latin.
In German I can ask for beer and a cheap prostitute.
I can hold a bucket for a vomiting child with one hand while spoon feeding a child with the other. Never mix up the two hands.
I am not ashamed of doing my best runway walk down a school hallway after letting three year olds put "make up" (face paint) on me and then dress me in butterfly wings, a princess tiara, red velvet elbow gloves, and high heels.
I can fall up stairs.
I can puree anything. Pizza - done it. Chicken strips - done it. Salad- done it. Some foods actually look better pureed than whole like school vegetarian lasagna.
I can hold negotiations with a toddler that would befuddle most SWAT team negotiators and embassadors.
I can rate the accessibility of most public restrooms within 2-3 miles of where I live. And most of the stores.
I can burp the entire alphabet.
I can pass for 18. I am 30.
I can totally bullcrap my way through essay questions on exams and usually hit on enough correct points, even by accident (a blind squirrel finds a nut once in a while) to do fairly well on the exam.
I can take 14 children age 5 to the large science museum in Pittsburgh with only the help of a brooding teenager and return with the same 14 children intact.
I can tune out the sound of a child having a tantrum even as they throw themselves over my feet in mass hysteria.
I always have something odd yet useful in my purse.
I speak medical. Sometimes I even dumb it down for the doctors.
I can recognize poison ivy and am smart enough to wear long pants and long sleeves when near it. Can't say the same for the other two prissy girls working with me on that missions trip.
I can fill up an entire blog post with this list of random meaningless abilities.
And Stella Makes Three
11:52 AM
Yes, I am crazy. I adopted one more little girl to sponsor as I had a feeling that something was left undone, that someone was waiting. That someone was Stella, an 8 year old orphan in Uganda who lives with her grandfather. Her chores are many and include washing clothes, cleaning the home, buying and selling in the market, and carrying water. Like most little girls she enjoys playing with dolls, playing hide-and-go-seek, jump rope, art, and storytelling. She is in the equivalent of Kindergarden and is doing above average in her schooling. I do not have her full sponsorship packet yet, but I wanted to share my newest (and last - at least for the foreseeable future) little girl. Please pray for her as she has already had a very difficult life.
Holding on to Hope
10:11 PMMy "words" that I want to live out with passion this year are faith and hope. Faith includes believing that the Lord will provide in all circumstances exactly what is needed without fail. Hope is the joy that comes from faith, the belief in something more, the intangible that you hold on to when all seems lost. Faith and Hope are meant to be shared, and so I would like to introduce to you two very special little girls that are now my very special little girls.
Meet sweet Miangeda! She is six years old and lives in the mountains of Haiti. She was chosen to be ours by my mother and I as she just captured our hearts. She looks so solemn for such a little thing. I have not yet received the full sponsorship packet for her, but I do know that she loves reading and playing with dolls, and is doing above average in school. Please add this little one to your prayers!
I would like to introduce precious Monique! She is nine, going to be ten in August (her birthday is only 5 days after mine!) and lives on the flatlands of Burkina Faso, one of the poorest countries in Africa. I fell in love with her and can not wait until the day I receive a picture of this sweetheart smiling! I do not have her full sponsorship packet either but I do know that she has few if any toys and instead enjoys playing with boxes. Boxes, it just breaks my heart. She too is doing above average in school despite all obstacles. Please add her to your prayers!!
This is the Bethelehem Child Survival Program in Bory. Haiti. Haiti's maternal mortality rate is 630 per 100,000 while the infant mortality rate is 86 per 1,000. The Child Survival Program provides monthly health screenings for pregnant mothers, a monthly food kit of healthy nourishing food, immunizations and health screenings for infants and young children, education, parental skills training, and job skills training. Please pray for the mothers and children who receive care here.
Yes, I live on a very limited budget. Yes, I could use the money elsewhere. But elsewhere is not where I am called to use it and elsewhere is not going to make a difference in the lives of two beautiful, precious little princesses who already look so weary. Elsewhere is not going to provide immunizations to babies, elsewhere is not going to feed pregnant mothers, elsewhere is not going to educate a community of young mothers on how to meet the needs of their child - simple things like hygeine and avoiding infections to how to read a book together. Elsewhere and Some other time are always going to be there. These children are here, now and they can't wait. I believe that living with passion means giving until it causes sacrifice. I can not change the world, but for now I can change a few lives. God will provide the rest. And I get to share with these little ones the fact that they are in fact true princesses of the Lord, real princesses and instead of being forgotten they were chosen and so loved!! It all comes down to faith and hope!
Hope
6:51 PMHope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
E.D.
My last post was written on one of the most difficult nights of my life, as I was helpless as my mother faught for her life following emergency surgery. For six long days she was on life support and all I could do was hold her hand and be her voice to make sure she got the care she needed and the dignity she deserved. For seven more days she required high level medical care, and I spent every single day at the hospital with her (minus two when she was on life support and I was sick). When the doctors wanted to send her to a nursing facility in the area to recover not only did Mom refuse but I politely informed them that they could do so only over my dead body and wheelchair thrown in front of the vehicle. So Mom came home with "skilled" (oh the joke!!!) home nursing care, physical therapy, and a nursing assistant. Before she left the hospital I learned how to do everything the nurses were doing for her, things I never could have imagined being able to do but love speaks another language and God provides strength enough for what you face. Its a good thing too because that "skilled" nurse was only good for providing the medical supplies we needed. It is now seven weeks later and it has been a journey of faith. Faith and hope have been our sustenance, and a wicked sense of humor that allows us to laugh at even the "tragedies" in life. God broke through Mom's stubbornness to allow me to call 911 just in time - another 30 or 60 minutes might have swung the outcome to fatal. God lined up the best surgeon, the one who uses the most modern and aggressive infection fighting techniques. God prevented her from going septic. God prevented pneumonia or blood clots as she has a clotting disorder and laying unmoving is a huge risk factor. God knit her back together from the inside out. God guided her through a process where 60% of patients die within 30 days of surgery. We are blessed. At times one or the other of us gets weary, frustrated, angry, etc. But then we remember all of the blessings, we remember how faith has fortified us and hope sustained us.
This Christmas we were unable to enter into the material aspects of the holidays. No cards were sent, no presents purchased. We did put up the two trees - a 4 foot tree and a table top 18" tree- and decorated them because Mom loves the lights and we both love the memories of the ornaments. By not geting swept up in the commercialism of this season we were able to really see all of the presents we have received - the love of family and friends, the gift of redemption, grace, mercy, hope, faith, life, memories, health, all different kinds of healing, joy, and an abundance of blessings.
My own medical issues and needs were put to one side as much as possible as I have been engaged in assisting with Mom's recovery. She is still weak, still healing. And she will undergo another surgery sometime in 6-9 months. I ran on pure adrenaline and some adjustments to my medications for far longer than I imagined. The adrenaline is now gone and I am a disaster, dealing with the effects of now and the effects of weeks ago and untended medical issues. As things get stable, I will be getting the medical services I need and trying to regain some ground I have lost. Another concern, although I am choosing to have faith in God to provide (prayers are always welcome), is that my COBRA insurance runs out the end of February. My Social Security appeal is at court level but can take 9-18 months to be determined which rules out medicare. The medicaid program I qualify for has no funding. I can afford to purchase a single person policy but there is no pharmacy coverage and you are limited to 2 dr visits per year. I do not qualify for the Obamacare Pre-existing condition insurance because I have had insurance, and you must be without insurance for 6 months prior to qualifying. I can not go 6 months without insurance. I can not go a month without prescription coverage without a high risk of mortality. Thankfully God is a God of impossibilities and moving mountains.
Now that I have a bit more down time I will try to keep my journal updated and write more. I hope everyone had a Christmas full of the gifts that are too precious to be bought, and enters into a New Year that provides them with enough of everything they need but never so much as they forget to appreciate it!
For Which There Are No Answers
11:46 AM
I grew up a child of a seriously ill parent. My mom had her first stroke when I was in preschool and has gone on to have five more significant strokes, not counting TIAs. She has Lupus and Antiphospholipid syndrome. Her left knee has been eaten away by arthritis and it is starting in on her hands. Her heart caused frequent issues. I knew how to call 911 before I knew how to dial a friend's phone number. I should be used to medical emergencies. But she is also my best friend in the world, the one person I have who understands me without the need for words, the person who is always there when I need someone, the one who has faced this monster along with me. She literally fought to help me learn to eat again, fought for me to not give up in finding adequate care, fights to keep me walking around the apartment as long as possible, refuses to accept anything less for me. And I fight for her.
So now when she is lying in an ICU bed on a vent with more lines running into her than I can count and an open abdomen from emergency surgery that they could not close due to infection and swelling my heart is breaking and my world is turning upside down. Never before has she been so sick that I couldn't talk to her, and I would give anything to hear her voice. I have cried myself to sleep the past two nights. I have fallen on my knees before God and cried out in prayers, many that had no words to them. She made it through the first two days without going septic, so that is very important. She shows her temper when they mess with her and gets royally pissed off when they move her or change her bandages, which lets me know she is still there. She seems to be calmed by my voice when she opens her eyes in panic, and that means the world to me. Today the doctor is taking her back in to surgery in an attempt to close her abdomen. This is not going to be a sprint but a marathon, and I pray for endurance - for her body and mine. Stress does not do nice things to dysautonomia. I took this morning off (my brother and sister in law are with her) and will go up to the hospital for her surgery. I just want to know why, and I know there is no answer. I want to know if God thought that we didn't have enough to deal with, because I am not strong enough for this. Most of all I need my Mom to be okay.
So now when she is lying in an ICU bed on a vent with more lines running into her than I can count and an open abdomen from emergency surgery that they could not close due to infection and swelling my heart is breaking and my world is turning upside down. Never before has she been so sick that I couldn't talk to her, and I would give anything to hear her voice. I have cried myself to sleep the past two nights. I have fallen on my knees before God and cried out in prayers, many that had no words to them. She made it through the first two days without going septic, so that is very important. She shows her temper when they mess with her and gets royally pissed off when they move her or change her bandages, which lets me know she is still there. She seems to be calmed by my voice when she opens her eyes in panic, and that means the world to me. Today the doctor is taking her back in to surgery in an attempt to close her abdomen. This is not going to be a sprint but a marathon, and I pray for endurance - for her body and mine. Stress does not do nice things to dysautonomia. I took this morning off (my brother and sister in law are with her) and will go up to the hospital for her surgery. I just want to know why, and I know there is no answer. I want to know if God thought that we didn't have enough to deal with, because I am not strong enough for this. Most of all I need my Mom to be okay.















