Sunday, August 4, 2013

Having a child with a disability is going back to Start, over and over and over again.

(Possible chapter?)

When you first find out there is a problem with your child, whether flesh and blood or adopted, your whole world stops.  It shakes itself and resets itself, and you. And while it will take your entire life to fully adapt and shift, there seems to be certain side effects of a diagnosis which make it so your world has a very challenging time staying upright. It’s like one of those old fashioned hand held water games they had when I was growing up, where you tilt the game so you can maneuver the ball in the slot through the water, but if you shift too much the ball bypasses the slot, and ALL the other balls you already got in the slots before pop out and you have to Start all over again. Having a child with a disability is going back to Start, over and over and over again.

I asked my fellow hemi moms on our closed Facebook site what they have experienced as the side effects of disability. They all mirrored what my family has been going through: financial problems, relationship problems, career issues, sibling troubles, deciding whether or not to have more children, faith lapses and more that fit into sub categories of these big umbrella topics. 

I don’t often proclaim the value of money but we’ll Start with that, the financial side effect.

One step away…
They say most American families are one medical emergency away from bankruptcy. Having a child diagnosed with a disability certainly qualifies as one medical emergency. That was our youngest of four children, Katharina, who was diagnosed with having survived a massive in utero stroke, cerebral palsy, cognitive delays and vision issues. 

But life doesn’t always conveniently stop at one medical emergency. My family had three. None of them reach the level of Kath’s, but it is typical of the life-complicating problems that intensify to seemingly insurmountable levels in a family with a disabled child. And some families have it even worse than mine. I know of several who have had to move (more than once) as their families relocated to find employment, some who have lost their homes due to financial pressures, some who have divorced due to the strain that one disability can place on a family, and a few who have had one parent quit their job to provide full time care for their disabled child. I realize that these issues can plague any family in our society today, not just those with a physically or cognitively challenged child, but those without the extra challenge can struggle and find a new job or a new home or a new spouse and restart in a new life for yourself and your family. A disability doesn’t go away. The struggle is always there, in the forefront, and works on a family in insidious ways, undermining their confidence and ability to help themselves, much less their disabled child and their other children. Essentially, struggling through a disability with a child can make a parent feel somewhat disabled as well. Let me explain by telling my own family’s story.

Once upon a time, life was flowing along for us. I had recently divorced my first husband and married Roger in 2002 in a fairy tale wedding in which Roger surprised me with a horse -drawn carriage ride from the church to our backyard reception. We were both young in our teaching careers, paying bills, and had bought a house for my two middle-school aged boys, Chris and Nick, to do their finishing-growing and for our growing old together. We had two cars that worked well, with only the usual minor maintenance required, and everything was moving forward quite nicely, thank you very much. We seemed to be living the life that matched the sign one friend had given us as a wedding gift that said, “And they lived happily everafter.”

Two years later, along came baby Alexandra. The idea of leaving her in childcare made me sick, so we decided that I would cut my work schedule to part-time as part of a job sharing agreement that would allow me to keep my hand in my hard-earned dream career while still caring for Alex. Money got tight maintaining a family of five while being down to 1½ salaries. Alex had a few minor health scares and issues from the beginning, but we had good jobs, eventually I would be going back full-time, and we knew that although it would be tough financially for a couple of years, we’d catch up eventually. It’d be okay. We were good people who worked hard … of course it would be okay.

Then we Started on a Spiraling Tour. Nick had a terrible accident in his high school phys ed class in February 2006 that eventually would lead to him being diagnosed with a Traumatic Brain Injury. Spending five days with him in the hospital, including a stay in the Pediatric Intensive Care Unit, made me think I’d lived through the worst. Fortunately, Nick went back to school a few weeks later. My next visit to the hospital in November was more pleasant with the birth of our fourth child, our beautiful Katharina.

Things seemed to be fine for a while. The doctors said Nick and Kath both looked fine. I asked about Kath’s development since she wasn’t meeting her milestones, and then in February 2008, I remember vividly hearing the doctor tell me what they found in Kath’s neuro tests: “massive brain abnormalities from a massive stroke.”

My world spun.

I Started to lose track of regular everyday things as I focused on learning and understanding the medical vocabulary (hemiplegia, vision field cuts, hippotherapy, aspirating, midlines and more) associated with a diagnosis of stroke and cerebral palsy and on “fixing” Kath. Everyday regular things like paying bills, remembering family and friends’ birthdays, food shopping, etc., all were just more.than.I.could.manage. I felt like I was in mourning. Then I felt guilty as I mourned a child who was right in front of me, smiling. The Plans and Future I had dreamed and imagined with her birth took a drastic dip to the side.  And I felt immense guilt because I hadn’t been ready for her from the Start.

Roger Started a second job, delivering newspapers at 2 in the morning seven days a week while still working a full-time teaching job and continuing classes for leadership and school administration. His withdraw from the day-to-day, so he could get enough sleep for his jobs and classes, further spun me. I felt alone.

Just after starting the second job, and two weeks after getting Kath’s diagnosis, Roger rolled his car into a ditch during a snowstorm and suffered a concussion. Now, more than half of our family had a form of TBI. And, we had just paid off the car, now totaled, and had taken the collision insurance coverage off to save some money. And we needed to get another car.

We really started to sink. Not just financially but mentally; we were being bombarded on every side.

We took Kath for a second opinion at Boston Children’s Hospital that summer of 2008, and it was a worse prognosis than the first. The doctor gave us a very dark prediction of Kath’s future. “No chance of doing higher math,” “will need severe IEPs (Individualized Education Plans),” “no chance of college,” “will never have a normal life” are among the dire phrases that stand out. And as Kath slept on the three-hour drive home, after having eight vials of blood drawn as part of the proscribed tests, we decided never to go back to that doctor. Instead, we clung to the hope our first neurologist prescribed: “Never limit her.”

To make matters worse, my own health was suffering. I had a scare with female complications and signs of cancer. Fortunately, that all turned out okay.

For years, I was in survival mode, as in I could make sure everyone ate, was dressed and Kath made her therapies, and for the hours I was at school I focused on teaching, but that was pretty much it. Bills were late and lost. My organization skills were non-existent. I had less support because Roger was working the two jobs, and despite the extra income we almost lost the house more than once because the out-going funds far outweighed the in-coming.  Everything collapsed on us. No money in savings. Used credit cards to pay bills. Maxed out credit cards. Borrowed from our retirement. Borrowed money from family and a friend. 

And we tried to keep going. House repairs fell behind. Our marriage strained and cracked several times. Friendships fell away. We could not keep up with the deluge of bills. The doctor appointments increased, the co-pays added up. (At this point, 5 years later, we range from $160-$250 of out-of-pocket medical expenses a month, for a healthy month! Putting that into perspective, that amounts to almost $3,000 a year. No wonder it was hard to keep a budget.) The therapies increased. At one point, Kath had 13 therapies a week at our house which I had to schedule and maintain. I chose this path for Kath instead of sending her to a school all day, away from me, because I wanted to know what therapies they were doing so I could continue to work with her. This was also a time when she especially struggled with transitions. Fortunately, this didn’t put a further dent in our struggling finances due to being covered by Early Intervention services. But this left cracks elsewhere. The boys didn’t get care packages at college. Nick struggled with his TBI and I never knew. Our cars broke down. Roger was putting about 50,000 miles a year on his car with deliveries in addition to his 45 minute commute to school. We didn’t have the money, so we had to borrow again. He bought his fourth used car in five years to maintain the second job, while we continued making payments on his previous car, which sat in our driveway with too many costly fixes needed to get it working again, all the while crossing our fingers that our two remaining high-mileage vehicles held out without needing even a minor fix, which we could not afford.

No longer were we sure we could get out from under. Being good people obviously wasn’t a good enough reason for everything to work out.

If you have ever fallen behind with credit cards you know how they can get to scary proportions very easily, especially a few years ago before there were any regulations on credit card companies. The companies changed due dates and increased percentages, without notice. They decreased limits, then charging for over-the-limit balances. We ended up owing double and triple, in a couple of cases, than we ever charged. Double and triple! On top of everything else. And every time we tried to pay off one thing or accept a debt settlement, a new fee or tax complication appeared and sucked away any gain we thought we'd have.

The stress was blinding. I started to have racing heart symptoms, weight gain, depression, female issues and health problems. Not to mention what it does to one mentally.

The lack of confidence one has when money is a struggle is unbelievable. People try to be understanding and empathize, but they can’t. Even the most well-meaning, even family and friends, because they haven’t been through it. They can’t understand the constant worries about having enough money to put gas in your car to go back and forth between work, therapies and doctors. If you have enough food on your table or enough for the next day. If you can’t make your mortgage where will you go with your kids and pets? The constant dread every time you swipe your debit card at a store and hope you don’t get the “I’m sorry but it was declined” speech from the cashier. The avoidance of doctor and dentist checkups for yourself because you can’t afford the co-pay or may need the money in case the kids have a problem. Oh, and the obsessive worrying leading to insomnia! If you have gone through this you know you go through a time of not feeling like you are worthy. Of friends. Of going out. Of new underwear. Of complaining. Of laughing.

Then you hear people say things like, “Oh, if people didn’t overspend they wouldn’t need to be ‘bailed out.’” (I hope you are never in such dire straits if you truly believe that.)  You hear people say things like, “You should come with us; all you have to pay for is the gas.” (Not true, there is the cost of food and car upkeep and the million unforeseen costs that are too embarrassing to say you can’t afford. “Sorry, maybe next time” is easier, although too many of these start to limit the future offers and increase that isolation.) You hear, “You have insurance, they take care of that.” (Another fallacy, no matter how good your insurance is, there are bills, sometimes big ones, and not everything is covered).

And on top of all of the money worries is the worry that you can’t fix the people you love who have been broken or who have an injury. It really does mess with your sense of worth and your sense of value.

Your whole world stops rolling in the normal way when you have health issues in your family; you are consumed by how to ‘fix’ things. Every waking thought is what to do and how to do it. And how to afford it. And how to have time for it all when only one parent is actually able to be present for the appointments. And how to remember it all when you feel like you are breaking apart. And did I mention, how to afford it?

When those feelings of self-worth and self-doubt are intertwined with constant collection calls and watching your credit score plummet, it is quite the climb out of the ravine that you must accomplish in order to get back on your feet. The creditors talk to you differently and their tone makes you wonder if indeed it is your own fault that you are in this mess, that you should have done things differently,  that you are not the good person/spouse/parent that you thought you were before this started, that you don’t deserve anything better.

But all this can change.

As I look back today, I see and BELIEVE that it’s not that we were bad people. Or that we did something wrong. One thing that helped us in this new Start was putting things into perspective. There was simply a lot we had to deal with in just a few years. We went into my job-sharing situation with minimal savings. Our spending increased, mostly due to circumstances beyond our control. We had two pregnancies. We had three TBIs. We had credit cards, too many in hind sight, but they were manageable, until the domino affect cascaded and suddenly they weren’t.  And then there are our student loans (we both have our own loans from before we were married, getting master’s degrees which are necessary in NYS is very expensive) which when added to the credit card debt totaled up to more than our NY state mortgage on a 4 bedroom house on 5 acres. We had two boys in college and we have most of Nick’s loans in my name and a small one for Chris. We all had a myriad of health issues. And our youngest survived a massive stroke. Way more than one medical emergency at the same time as our financial struggle. 

But, as difficult as it is, we keep reminding ourselves that we’ve been able to manage. Sometimes just barely, but manage nonetheless.

Another thing that helped us in our new Start was being proactive. It takes so much longer to fill in the hole after it is dug, the dirt doesn’t seem as easy to top off once there is a prior hole. But we seemed to have slowed it down. We pared down our budget, no cable, no house phone, no trips, no new clothes. I went back to work full-time. Roger’s second job helped hold the seams together. We have turned towards one another instead of away, most of the time anyway.

In the five years since this all started, we have paid down a credit card/medical/loans debt of over the equivalent of 1/3 of what our home is valued at. That’s a lot of debt. A lot of debt. As I said, most of it was because our many of our debtors were not honest business people, but rather people who took advantage of us in a difficult situation and doubled and tripled our amount due balances.  Sounds like an excuse but that doesn’t mean it isn’t true.

We still have a lot of debt to go. The chain reaction took a long time to stop, especially since we (mostly me) were frozen in fear and stress of health issues for a while before we realized how bad things were. The cars always need help (my van died in the driveway this week), the house always needs repairs, and there are always the school trips and enrichment opportunities that we try to make sure both girls can do. And copays, always copays.

But while we have stretched to keep our heads above water, we know from hard experience that we have the strength to continue the struggle as long as it takes.

Another new Start for us was realizing that we could no longer afford to neglect ourselves. My mother passed away last summer after a quick (too quick) bout with cancer. Her financial planning for her children helped us pay some bills, but more importantly helped us afford a three-day family vacation in the Adirondacks for less than what other people spend on their cable and phone bills in a month. It was our first vacation in six years. Not only did it give Roger some time off from his 365-day-a-year second job, but it helped fill some of the holes we had neglected in our relationship.

My mother’s death also made us realize that life is too short to take your health for granted. I finally went to the doctor to check why I was feeling so tired. I thought it was the usual psychological stress, but found out it was a thyroid issue. I’m now on medication to treat that and feel much better. Our doctor told Roger when he took the second job that the lack of sleep would shave years off his life, and I kept guilting him by asking if he wanted to live long enough to see his daughters grow up. He had started to be treated for health issues that lead to stroke and heart attack. I was finally able to convince him that while the second job had helped us, and while we still hadn’t reached our “Okay, we are caught up” place, it was okay to quit because it was more important to the kids to have us alive than out of debt.

The biggest reason for our new Start was that I maintain a positive attitude that things can and will change (Roger wanted me to make sure I said that). That has sustained me for at least the last year. And now I see the light at the end of the tunnel. The light is that next month when pay from the extra work we did this summer and teaching paychecks Start to come in, I know we will be on sturdier ground, once we catch up from the summer, that is.

I do feel more confident. We still struggle. We still have doctor bills and copays like most families with family members with health issues. We have large pharmacy bills since Alex also struggles with asthma. We don’t qualify for the state health programs because we do make good salaries (debt is not taken into consideration for these programs, only for loans when we try to consolidate). But my confidence is returning. I’m writing. I’m teaching. I’m part of a writing group. We are on the right path. I don’t feel so alone.

The day-to-day financial struggle tears at your family fabric in insidious ways. It is one of those bare faced realities that highlights that although we are not in a caste situation, we are. People with money can get good loans, and work their way out of debt faster. People with money can have access to higher quality or more therapies and enrichments for their children. People with money can pay their bills and go out to the movies with their kids and out to dinner with their husband in the same month. In the same day even.

People who need financial help don’t get help from financial institutions. We are seen as a poor risk. Despite how hard we work. Despite how good we are at being good humans.

Money makes it so you can say yes to friend gatherings and feel like you can contribute. Sounds minor, but it is a big deal. Especially when one feels so isolated in the world of disability.
Fortunately what we also found out is that it’s not all about money. We found out we can hunker down and make ‘it’ work. We can set goals and meet them, even when we get hit with car repairs that mean we can’t pay our mortgage for a month. It just means our ‘vacation’ looks different than many of my traveling Facebook friends. It means that while my car slowly rusts, I can appreciate that it (usually) starts every day and gets me where I need to go. It means that there are more library visits, more discovering ‘what’s in the playroom,’ and more crafts and board game times. It means more home-cooked meals and more at-home movie nights. It means getting back to healthy choices in food and movement and thoughts and realizing how important it is that we take care of ourselves, so we can stick around to take care of our kids and one another. It means appreciating our marriage and caring for one another again, being a team.

It means that although it is taking a long time to recover from the financial and health issues that could have knocked us down and out, we are Starting to make it through and we can again see that we will make it. Once we survive summer anyway (a little lottery win would be nice, haha). But we will plug along and still do what is best for our family. Even if it takes us longer than we hoped to dig out and Start again. Although money makes life ‘easier’ and is needed, we also know that we are worth so much more than that. Finally, we know that fact for real. It took a long time to remember that. Although money makes it easier, it does not dictate how you love and care.  And now that I am here, in this world with Kath and the rest of my little family, and all of our financial issues, I am more positive that each time I restart I learn a little bit more and get a little bit better and get a little bit smarter. But I would really like to not have to KEEP restarting, it sure is tiring.

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