Helping Ben & Em through disability
Emma and I find ourselves on the cusp of homelessness.
As you may know, beginning in October, Emma's health began to decline. I lost my job, largely because I missed work to care for her.
In January, Emma started a series of hospitalizations which continue to this day. Basically, every other week she's been in Mass General Hospital with recurring drug-resistant pneumonias. She'll start treatment with one medicine, and seven to ten days later a bug resistant to the meds she's on moves in,and we start the cycle again.
In April, Emma got a new diagnosis: Plastic Bronchitis. Her lungs make thick plugs that block her lungs and rob her of oxygen. When she coughs them up, they plug her throat and trach and cause an emergency. Last month she spent several days in the intensive care unit after one of these episodes.
Up to 30% of people with this disease die from it.
Emma can't speak, and these episodes occur any time of the day. I have had to be with Emma at the hospital every moment. When she's not inpatient, she has many outpatient appointments every week.
So I can't work. Anyone who knows me knows that I am not lazy. I'd love nothing more than to go to an office every day and have a healthy child. I can't now, and I don't know when I will be able to again.
And today, I find my landlord has been evicting me. I didn't know, because the address on the forms is not where I live. I just came from court, and the judge didn't care. Basically, his answer was "too bad."
We've applied for many benefits. I am continuing to do so. So far, we receive none. If I were disabled, we'd be ok. If Emma was an adult, we'd be ok. There is very little help for parents of disabled people.
The hospitalizations have cost me thousands in parking and meals alone, and my small resources are exhausted.
Ultimately, I'll need to move very soon. I'll need to prepay some rent. And I can't. I have virtually no income. And I am out of options.
Any help you can provide would be so gratefully received. I hate myself for even asking. I feel like the deadbeat who can't provide for his daughter, and it is killing me. I'll work for it, if you have work I can do. Sharing this with your social networks will help too.
Thank you. Thank you. Thank you.
For some of Emma's history.
Monday and we are back at the hospital for a planned change to a new kind of trach. Emma has been feeling well, but is still coughing blood and developing ulcers in her trachea.
I've started writing the promised short stories. For every $100 raised while we're here, I'll write a short story. The collection will be made available for free to all donors as a gesture of my inadequate thanks.
If you're inclined, you can read a piece I wrote about our last hospitalization by googling "Ben Jackson saving Emma." WBUR, our local NPR affiliate published it last week.
Keep us in your thoughts, friends, and thank you so so much.
Hi friends. First of, please accept our sincere and heartfelt thanks for your generosity. Your support, check ins, well wishes all matter now than you know.
Also, FYI, Emma has given the OK to write about this, in case you were wondering.
Last week, Emma why to the OR I have the trach she's known her whole life replaced with something called a larry button. Coming out of anesthesia, Emma panicked at the change and required a whole lot of sedation to try and calm her down. It took a while to catch up with her, but when it did it briefly stopped her breathing. Doctors and nurses quickly bagged her and breathed for her, but for a moment, I thought I had watched her die. She was screaming and fighting, and then she was suddenly unconscious and blue. She was there, and then she was gone. It was terrifying.
Since then, it's been rough. Emma is in pretty constant pain that is poorly controlled for a variety of reasons. She hates the button both for the way it feels and for it feels and the way it looks. Both Emma and her dad are feeling spread thin, and there is no end on the horizon.
But your thoughts help. Send Emma animal pucss on insta or Twitter to cheer her up. Your support here keeps us fed, and I can't thank you enough.
Better times soon, yeah?
Emma Update: Tomorrow we head back to the OR for another bronchoscopy and to trial another new jobs and of trach. Emma loves change as much as I do, so we are trepudatious but hopeful it will allow her trachea to heal and stop bleeding. We will likely move to the ICU again for this trial. So long, bed, hello cot.
We've now raised enough for a six story collection. Thanks you all so much! For every $100 raised while here, I'll write a short story and make the collection available to all donors. Keep me writing! Your contributions go toward meals, parking, and the expenses of every day life ai have no way to meet while we are here. Thank you so very much!
Yesterday, Emma had a biopsy of her trachea. Hopefully, we'll have some results tomorrow or early next week. Emma continues to have bleeding issues, but remains in good spirits. She even selected her first high school classes today from the hospital!
We're still raising funds, and your generosity is so appreciated. This goes to giving meals, parking, and the expenses of day to day life which have not stopped over the past month despite not being able to earn. I'll be writing a short story for each $100 raised while we are here, and an eBook of these stories will be provided to every donor. So far, we're up to five stories! Keep me writing, folks.
Ben and Emma
Ben, The experience you and your daughter are enduring is absolutely gut-wrenching. I, for one, could easily say, "There, but for the Grace of God, go I." Know that you are not alone in your plight. Your situation is not unique. In addition to my contribution, consider asking Patient Services representatives at the hospital if they are aware of a hospital hospitality house in close proximity to the hospital. If your daughter is under 18 years of age, a Ronald McDonald House might be available to you. Either one would be a low/no cost accommodations option for you and your daughter. Here are a couple of links I found: http://hosp.org/need-housing www.healinghearthouse.org http://www.nahhh.org/ http://www.christophershaven.org/ http://www.hosp.org/ http://www.ronaldmcdonaldhouseboston.org/ http://www.ronmcdhouse.com/ You and Emma are in our prayers.
Ben: Your plight was brought to my attention by a mutual friend of ours. While I am personally unable to assist monetarily (due to my own medical issues), I have friends who may be able to, and also some acquaintances & friends who may be able to help with brightening your lovely daughter's spirits. I would like to get some information from you, so that I can see about getting this ball rolling. Please feel free to contact me through my Facebook at your convenience.
Ben, I heard your story on WBUR and love the way you write. I've been following your family's story on the site and have some freelance writing I need to hire someone for. How do I get in touch with you to see if you would be interested (other than through this site)?