In November, Em first wrote here in a guest post about an incident in a grocery store with a woman who harshly judged the food she was buying with SNAP….for her chronically ill daughter. She shared her family’s story and their struggle  with disabilities and poverty. I related to one aspect of  Em’s story, in particular. Like myself in worse-off times, she had to go hungry to feed her kids.

You can read Em’s post from November here: 

“Its hard being poor in America. When your kid is sick enough that you can’t work but disability doesn’t pay the bills, it is crushing. “

Then, an update from December here.

Now I’ve asked Em to give us another update.This woman kinda amazes me. All my conversations with her are so filled w/ hope,love, and gratitude. I keep putting myself in her situation and I’m not sure I could be so strong. Em and her family’s situation have me thinking a lot about how we care for and support families with disabled children in the U.S.

———————————————————————————————————————————————————————————————————————————-words

So, an update.

Everyday, first thing in the morning, I spend 10 or 15 minutes counting the blessings, finding the hope and otherwise working to keep a positive attitude that I find so important to survive this life. I have 3 amazing kids and the best wife I could ever hope for. My marriage has not only survived but strengthened throughout this ordeal. We have heat and power and running water. My parents recently gifted me a new cell phone that allows me to keep in touch with the world. And, I had the chance to get an education and to educate my kids. Yes, I am truly blessed in so many ways.

Yet, at the end of the day, I worry as I drift off to sleep. I worry about utilities, transportation and all of our health. I worry about what will happen to my disabled kids when I am gone. So many things have gotten better but so many others have gotten worse.

This year has sucked. It really and truly sucked. Every time I think we are getting our heads above water, we get sucked back under. After my daughter got home from the hospital in November, our house suffered major structural damage. It became unstable and was later condemned by the city. We became homeless and lost almost everything we had.

We had to stay with family for a time and, because they were out of county, we lost our food stamps and had to reapply when we moved into our new house. We applied to get the food that we lost in the house replaced and were denied. The appeal was also denied. Recently, we got the food stamp situation fixed.

Also, in early January, my wife was laid off for a while. We were slowly saving to replace our dying refrigerator and stove and get a used washer and dryer to replace the ones we lost when we had to leave our home but were forced to use that money to eat, keep utilities on and otherwise survive. Hopefully she can go back in April or May and we can begin saving again. I just cross my fingers that it lasts that long. For now, we will continue washing the laundry by hand and hanging it around the house.

To top all of this off, we had some serious car trouble this week. Thankfully, my wife is handy and she was able to make it roadworthy for now. Unfortunately, at this point our 20 year old van is mostly held together with a mixture of bubblegum and duct tape. Well, ok, not quite…but we are constantly trying to rig it together to last a few more miles. It has 210,000…so, it can’t last forever…but we have 5-7 doctors appointments each week. Busses are out (germs!) and we’ve already used our transportation benefits for this year.

But, my biggest worry is what are my kids going to do long-term. I have come to terms with my own illness. I have treatments monthly with daily meds as well. My life expectancy is only slightly shortened but I am susceptible to illnesses and otherwise have to take care of myself. My fear, though, is for my kids.

My daughter’s syndrome causes episodes of brain swelling, low blood counts and other scary symptoms. They suspect that she also has seizures and these episodes cause her to struggle academically and socially. Each episode causes her to step a little further back. She is also Deaf and struggles with language skills. Her brother has a mental illness and is on the autism spectrum. My little guy is also on the spectrum and is incontinent and struggles with maintaining his weight and has other issues.

I will care for them for the rest of my life but then what? I fear they will be placed in a facility, nursing home or group home. Those places are mostly ok but they aren’t home…they aren’t love. I want them to always know love.

But, in the thick of all of it, the amazing folks here came through and helped us with money, gift cards, food, clothing, dog treats and so many other things. We had just lost all of our stuff when that happened so it was such a huge blessing. We only recently bought pull-ups for the first time and we will have carnation instant breakfast for a long time yet thank you!!! A couple of other bloggers helped with a late Thanksgiving dinner (First meal in our new house!), some Christmas presents and Christmas outfits for the kids.

It helped so much! I still look back on those posts and comments for hope in those words, deeds and other things. Thank you, all of you, for giving us that hope!

All my love, Em

There is a donation page set up to help replace items lost in the house when the chimney collapsed HERE but since then…a reliable vehicle and grocery money is a huge priority.
Em has also set up a Facebook page to help keep people updated on her daughter’s health : Makenna’s Signs of Peace, Love and Hope

Advertisements