Saturday, October 21, 2017
Sunday, October 8, 2017
Summer has officially left us and it was another good one. I rediscovered some things that I had forgotten, and ran across some skills I thought I had lost. I found out that some people will never stop surprising me, and realized I could still surprise myself. These songs were with me along the way...
John Legend, Love Me Now
The Chainsmokers & Coldplay, Something Just Like This
ItaloBrothers, Summer Air
Ed Sheeran, Castle on the Hill and Thinking Out Loud
Rag 'n' Bone Man (Calyx & TeeBee Remix), Human
Infamous Stringdusters, Gravity
Thursday, July 6, 2017
There seems to be something about July 5th that sends my life in a new direction.
It was that day six years ago that Tony first went to a doctor about his symptoms, two days before Louise was born. That appointment was the first of many, and my life was changed forever.
I have been reflecting a lot about where I am these days. It's been two and a half years since Tony died. Sometimes, it feels a life time ago... but just a few weeks ago, the thought that he was gone hit me so hard while driving that I nearly had to pull over. So, I'm doing better but I will still spend the rest of my life adjusting. The enormity of that has become apparent.
The girls continue to be amazing, and they are growing so fast. We are lucky enough to have so much love in our lives, and they show the benefits of that. They are friendly and outgoing, and are hopefully learning to appreciate all that they have. That doesn't erase all that they have lost, though. Losing Jake is another hard blow. Every parent wishes they could protect their children from pain and heartache, and I'm no different. Obviously, I can't change the circumstances of their loss, but hopefully I can help them live with it.
So even though we've started to emerge into the light, each new development rocks me. I feel unsteady on my own, and second guess myself constantly. I have learned that I need to allow myself a lot of time to make decisions, it seems to help and hopefully I eventually arrive at the right choice. But I suppose this is the struggle of life; no matter what your situation, things are often not easy. That's okay... struggle and stress is more than a fair trade for all the gifts of life.
This July 5th, my life changing event was signing a contract to return to teaching at Lylburn Downing Middle School. I am nervous about whether I will have the energy to teach and be a single mom, but I'll certainly give it my best shot. I've already tried to come to terms with the fact that I'll have to let a lot of things go... I just won't be able to do it all. Sometimes life hands you things before you are really ready... but it would be boring any other way!
Monday, July 3, 2017
Last weekend, we had to say goodbye to Jake, Tony's loyal service dog. He was diagnosed with kidney failure a few months ago, and he had been hanging in there. He had special food, and medicine, and I was even giving him IV fluids for awhile. He had gotten very skinny and had lost a lot of his energy and pep. He couldn't jump in the back of the car or drag me along on a walk, but he still greeted me with a waggy tail. At the end of last week, he couldn't really keep any food down, and that was enough for me.
I can't say enough about what Jake meant to us and how much he helped Tony. He made it possible for Tony to work extra months when his arms were getting very weak, and he helped us skip the lines at Disney World. He threw away dirty diapers, opened doors, and even brought my lunch to me one day at school. More than anything, he was Tony's buddy and was perfect at his job. We miss him so much. He was a wonderful dog, but his job was done.
I could go on and on, but it'll only bring even more tears. Please, pet your own pets tonight and tell them you love them... maybe give them an extra treat. And please check out St. Francis Service Dogs who trained Jake and then taught Tony how to keep up with him. They provide dogs to veterans, and children and adults with disabilities and they are incredible.
Here's a few pics... now I've got something in my eye again.
|Teeny Jake early in his 2 years of work to be a service dog|
|with baby Louise right after he partnered with Tony|
|Unofficial mascot of VMI Men's Soccer|
|Sharing the couch with his favorite humans|
|goofball in the snow|
|last pic with his adopted sister, Gemma|
Wednesday, May 24, 2017
Our family has received help from Medicare, Medicaid, the National School Lunch Program, and Social Security Disability. It's probably easiest to break this down by program, but first, a little summary of our story.
My late husband and I did all the things that upstanding, tax-paying Americans are supposed to do (reminder that he wasn't a citizen, but he had hoped to become one)... we graduated college, worked our way into good paying, professional jobs, and made our payments on time. By the time we were 32, we were home-owners and parents of two. We had a life insurance plan, and a bit of retirement savings through work, but we did not have much put away for emergencies. I would guess that makes us pretty typical too, most families with young children are just getting by, not sitting on a big nest egg.
That same year (2011), my husband was diagnosed with Amyotrophic Lateral Sclerosis (ALS), which comes with a expected life span of 2-5 years. He had to leave his job in 2012, and I had to leave mine in 2013. He died in 2015. I have remained a stay-at-home mom since his death, and our girls have just finished kindergarten and third grade. I hope to return to full-time work in the next months.
In short, we were not prepared for the impact of a terminal illness (not that anyone is) and we have only made it through the past years because of government safety net programs.
The day after Tony stopped work, we applied for Medicare. He was eligible because ALS made him unable to work. There is a waiting period for disability applications, and thankfully his short-term disability insurance from work covered him through that six month period. Medicare paid 80% of Tony's healthcare costs for the rest of his life. When he began Hospice care in February 2014, Medicare paid for that as well. We had visits from Hospice aides and nurses 4 times a week, and they made it possible for him to remain at home.
In summary: there is NO WAY we could have paid for Tony's medical care without Medicare, even if I had remained at work. He had hospital visits, surgeries, clinic appointments, and lots of very expensive drugs.
Thankfully, the President's proposed budget does not cut Medicare.
Tony's insurance was covered by Medicare, but the girls and I were not. With no income from work, I applied for Medicaid for the three of us. I did not qualify, but the girls did under a program called the Children's Health Insurance Program, which covers kids in low income homes. That program still covers them today, and means I do not have to pay for their coverage and our co-pays are low. I had to purchase insurance individually, and that was before the Affordable Care Act (ACA or Obamacare) was passed. I had a prescription for Xanax at the time because I had trouble sleeping. I was a mother of two young children with a terminally ill husband, I had a lot of stress. That was a pre-existing condition though, and my insurance was therefore more expensive. After passage of the ACA, my insurance payments were lower, but they were still between $250-$300 a month. This is another part of our lives that will be impacted by the President's agenda, but that change remains to be seen.
In summary: healthcare for my two daughters (now 5 and 9) has been covered by a government safety net for the past 5 years. The President's budget includes cuts of $616 billion over the next decade to these programs.
National School Lunch Program
While Tony was alive, our oldest qualified for a reduced price school lunch. In our area, most children qualify for this benefit, although I never expected my kids would. Although our income now is only through Social Security Disability, they no longer qualify.
In summary: this helped us by lowering food costs for her during school.
The President's budge proposes a 21% cut to the budget of the Department of Agriculture, which funds this program. His budget director also said "There's no demonstrable evidence they're actually helping results, helping kids do better at school." I guess it depends on what study you look at, but I think it's incredibly hard to argue against helping kids who don't get enough to eat at home.
Social Security Disability
Again, the day after Tony stopped work, we applied for this program. There is a waiting period of up to several years for most disability claims, but ALS put Tony on a fast track of 5-6 months. He began receiving payments in 2013, and our girls received them as well as minors of a disabled parent. Tony had some long term disability insurance through work, but Social Security (SSI) was our main source of income when I stopped work. Thankfully, we had a lot of financial help from friends, because it wouldn't have been enough. The girls will continue to receive those payments until they turn 18, and after Tony died, I began to receive survivor's benefits as well. Since I left work to care for them, I am eligible for this payment until Louise turns 16. If I make more than $15,000 a year from another source, I become ineligible. This year, SSI pays us each $1045 a month. This extra time off of work has been invaluable. It has helped me to manage my grief and help my children through theirs, and that has been priceless.
In summary: if we had not had this safety net, we would have had to sell our house and I would have had to remain at work. It would not have been possible for me to make enough to cover our expenses, and Tony would not have been able to remain at home. We would probably have ended up in subsidized government housing, and on food stamps, with Tony dying in a nursing home. We would have probably gone bankrupt, and possibly bankrupted our families as well.
The President's budget proposal plans $70 billion of cuts to Social Security Disability programs, although I am not sure if the cuts would effect the survivor benefits we receive. Regardless, I hope to return to work soon and therefore become ineligible for my benefit.
I could easily describe the events of the last few years with the word "catastrophic." We did all the things we were supposed to, but if we had not had help from these government safety-net programs, it is hard to even imagine how much more catastrophic it would have been. I am beyond grateful that when we were hit with terminal illness, our government took care of us. I would never want another family to lose the support we had. While no program is perfect, and there are people who abuse every program, the vast majority are just people who have no other options. These programs help people through the darkest parts of their lives. Before deciding whether to support the President's budget proposal, reach out to the people you know who benefit from these programs so you understand what the cost will be.
Side note: I have wanted to write about ALS Awareness Month, but I could never find my topic. Last night I concluded that I am still just too mad. I'd like to go beat the shit out of ALS, but I'd also like to curl up in bed and never emerge. I hope I can do more in the future, and maybe next year I'll be able to speak out more. Until then, this more than enough to get my fingers typing away.