Siblings. Such a Balancing Act

                                                          3. Siblings.

Such a balancing act.

As I have begun to reset my feet on hard ground with Kath’s diagnosis I realize that although I have tried to make sure I was still ‘there’ for my other kids, I didn’t spend as much time as I should really thinking about what having a sibling with a disability meant for them. I know MY world was rocked. I went from not being prepared mentally for a fourth child to feeling guilty about my stray thoughts regarding how much my life changed especially since she was a child with special needs to being thankful for my role as Kath’s mom. But I didn’t spend enough time considering how it changed and impacted my other children even though it did shift everything around for them as well. 

It took me a long time to come to grips with how exactly Kath’s diagnosis affected me as I was struggling with the daily demands of a child with a disability and spending any extra time trying to understand what it meant for her. I realize now that it shifted my balance in my pace of movement in life. It altered my balance of thinking and movement in my career and it shifted the balance in all of my friendships and relationships. And the ripples from these changes had to rock my other children, but they also had their own real reactions, which I could not even consider or even think to ask. Until now. Almost 6 years later. 

First a little background. Chris is now 25. He was 19 when we got Kath’s diagnosis, the same age I was when I was lucky enough to become his mom, and he was on another continent as part of his college’s Study Abroad program. Nick is now 24. He learned about childhood stroke and cerebral palsy with us when he was a senior in high school, and one year after his own horrible head injury due to a sports accident. Alex is now 9. She was only 3 when she learned that her sister was “different,” and has lived with Kath’s reality for her whole cognizant life, during her intensely important developmental years. 

To understand their feelings about being siblings with a different-abilitied sibling, I asked each of them 4 questions. I told them I wanted their answers but I’d understand if they didn’t want to give them. They all answered. Here’s what they said, in their own written words:

Q: When Kath was first diagnosed what did you think? Feel?

Nick:     First thought was, “Why does this sort of thing happen to someone who hasn't spent a second on this planet yet?” Felt jaded by the way nature works. A newborn can have this handicap, yet some people can get away with murder and live happily, where's the justice? When it comes down to my thoughts on Kath, my first thought was "Okay, so your sister might have a small disability, let's do what we can to let her know she's doing great. Gotta try to keep her spirits high while I learn the least stressful ways to interact with her, so that life is as easy as possible for her. She unfairly has it harder than the rest of us, but that doesn't mean life needs to be bad for her.

Chris:    When she was first being diagnosed I was, at first, in Nicaragua. I was focused on how miserable and insane I felt at the time. That kind of leads into my response to the second question, because I have always felt guilty about how self-involved I was then. You were trying to talk to me about it and I would say something like, “I’m sure she’ll be fine,” and then pivot to The Misery of Chris: Volume III (I think I’m up to volume thirty-something now). I was kind of messed up then, so when I was told I really didn’t feel anything at all. At first. It just sounded like someone had mentioned she was blonde. I think I remember thinking something like, “Alright, this is now the case. What does this change? At the moment, nothing.” That is the level of damage-control I was operating at. 

When I began therapy after getting back from Nicaragua, I started to work through it. I began by reevaluating my answer to that question. It really didn’t change anything, for me. It was not like she had suddenly had a stroke and been hurt – she was born like this – so my relationship with her would be the same regardless of the diagnosis. However, it meant that you, Roger, and Alex would have to reorient your lives. You would have to begin therapies for her immediately, struggle with schooling, and rework all of your expectations for her life.

I really didn’t process the enormity of her diagnosis until much later. Maybe I’m still not entirely done reacting to it. My first impulse is always to comfort. To offer help, advice, encouragement. It ain’t always useful, but it’s probably a lot more for me than for you all. I’m as much comforting myself as I am you. Through therapy I got to admit that her diagnosis made me sad. It was something I never wanted to admit – she’s my fucking sister, and nothing about her is less than perfect. She has this problem, she’ll figure out a way to lead a happy life. I just fucking hate how hard it will be for her, and for you guys, to get there. It ain’t easy to begin with. So, yeah. It made me feel sad. Eventually. 

[When Chris says he was miserable and such, he was going through a very difficult time with health and personal issues. Dealing with a negative reaction to his malaria immunization without access to his usual health care options, including me, in this faraway third world country demanded much of his mental focus.]

Alex:     All Those Little Moments with the Most Wonderful, Lovely, Confident, Stroke Survivor. I don’t remember when she was first born and how I felt about her diagnosis. All I remember is loving her to death and eating the cutey. Hugging her neck off, probably making her think ‘Enough already!! Is this how humans act!!?’ I still do.

Q:  Do you ever feel guilty, even as a stray thought? Share?

Alex:     Sometimes I feel like she gets a lot of attention. But I don’t like those emotions. When I feel those emotions a little voice speaks in my head ‘No. That’s not true. Don’t think of that way. It’s not true.’ I never share these thoughts because I don’t like them. I feel really guilty about these thoughts. I feel silly when I feel these thoughts because I think to myself ‘I’m 9!!! Not 2!!’

Nick:      Every rare so often, I find myself getting aggravated at something small that she does, but that's only because I forget for a bit that she has any sort of differences. I feel that otherwise, I've got a good, conscious head on my shoulders, so it's never anything sinister. She can be just as crazy as any other kid her age, but never really much more than that, so I've never had to worry about thinking dastardly things. Call it good parenting.

                [Nick used to pick up Kath from her special education preschool program every day for several months and was her sole caregiver for a few hours every day while I was working – all after she had an exhausting day at school. This made things additionally difficult for him, on top of the fact that Kath was still having difficulty with transitions and he was diagnosed at this time with his TBI.)              

Chris:    I am never there. That’s the root of all of my guilt. I went to New York rather than DC [after college] in part because I would be closer. But then I wasn’t, anyway. I get caught up in my own stuff. My recent girlfriend. School. Work. Lack of work. Lack of money. Procrastination.

She ain’t my kid, so I never did that whole imagine-her-whole-life-while-she’s-in-the-cradle thing. Thank god. I’m not sure I could totally recover from the crash of those unmet expectations. I don’t feel guilty thinking that, though. Kath will do what she can and what she wants. You guys will do your best to help her do that. Maybe she’ll overcome all hurdles and achieve amazing things – she wouldn’t be the first person with CP to rise to fame or fortune (http://www.disabled-world.com/artman/publish/cp-famous.shtml). Maybe she’ll be happy doing something else. Not everyone can be president, and not everyone wants to be. She’ll be great regardless, and that’s always been my position. She has a strong support network and a happy home. She’ll do fine.

Q:  How has it effected your relationship with her, me, Roger, your other siblings? Other people?

Chris:    I’m not sure it has. Like I said above, it’s not like this was something that happened to her. It’s who she is. Couldn’t be otherwise. So, my relationship with her is the same it would be regardless. With you, I couldn’t say. We might be closer because of it. You’ve broken down a lot of the walls that were between us, but that might have happened anyway as I got older. I am of the opinion that stressful circumstances bring people together, but not having really been there at all might be skewing my opinion.

Roger and I have the same relationship, I think, that we would have had otherwise. Al and Nick, I would say, are the same. Relationships are individual things and Al and I, Nick and I, Roger and I never really had to do anything with the diagnosis. Each of us, individually, did. But never as a unit.

The relationship that changed the most for me because of Kath was probably my relationship with one of my old girlfriends. I was struggling with my guilt about never being home and I blamed some of it on my girlfriend, I think. I don’t know. I tend to deal with things subconsciously, and whatever I am working out will usually manifest itself in how I treat those around me. My girlfriend was often around back then. 

Alex:     It hasn’t made my relationship with anyone, different. In the morning I just want to read. Honest.

              [Alex often wakes up and stays in her room in the morning, not as a way to avoid she’s saying, but because she loves her books.]

Nick:     A friend of mine said the other day that he thinks that any child with a known deficiency (as he put it) before birth should be required to be aborted. Instead of choking him out in the middle of the room, I furiously went for his throat verbally until he understood, "That's my family, my sister you're talking about. Don't ever F*** with my family." Mostly, it's a subject that I only push when it's already been brought up by other people, but many people (who I'm not ready to beat to death because of their dumbfounded opinions) begin to see why I say things like, "It's really not that big a deal in the long-run." 

As for our family relationships? It's hard to put a finger on that exactly. With Kath herself, I feel like I have the same feelings for her that I would any other sibling of mine, I care just as much about her as I do Chris and Alex. There can be tough times, but there can be great times. With Chris, it is an unspoken agreement that both of us would commit murder if she were ever hurt by anyone, and with Alex I believe she understands that I try to give her a tad bit more leeway. As with you and Roger, I feel it's pulled us all a bit closer together. We're all in this together (with poor Kath getting the worst of it) so we work together to make it happen. Since I'm only human (and a loudmouthed one at that) I complain every so often, but mostly about how unfair fate can be.

Q:  Has it changed you?

Nick:      When we first found out about the CP, I blamed myself until about 2 years ago. I created a lot of stress right around when she was born and with my vague understanding of the human body, I assumed that could be the only cause for such an issue. More recently I've taken the approach that you cannot pinpoint one thing that creates a disability like that, so I cannot individually take all the blame, nor should I be looking to point any fingers about the matter anyway. In a time when I've had to relearn how to do a lot of things [because of my own head injury], she single handedly taught me to stop, take a deep breath, and think about what I'm doing/saying. On the other side, it hasn't stemmed the quick development of my cynical side. As alluded to above, the entire concept of an unborn child developing a situation that makes her life much more trying just isn't fair. You could say it helped ruin me, religiously. I knew that the idea of a conscious and caring all seeing God was complete bulls*** for sure. Maybe there is a God, but if there is, he messed with my sister so I'm obligated to kick his ass. I will also mention that it helped me learn a lot about my own disabilities. Something could be bugging me about my brain or the way my body works now, and I'll see her dealing with something exponentially harder. It just makes you sit back and say, "Oh...that's how she does it...that makes tons of sense!"

            (Nick mistakenly thought that his accident at school, which caused his Traumatic Brain Injury, and the after-stress was what caused me stress while I was pregnant—he thought that caused Katharina to have her stroke. It did not.) 

Chris:    I’m sure it has. A man is an amalgamation of his experiences, actions, and beliefs. Kath being born definitely had a bigger effect on my life, but Kath’s diagnosis changed me as well. Aside from the basic, yeah-I-know-more-about-CP-and-in-utero-strokes bit, I imagine it has made me more patient and understanding with people. You never know what issues they’re working through – physical, psychological, etc. New York may have beaten that out of me. 

More intimately, Kath’s diagnosis has made me think harder about what kind of person I want to be with. The ability to roll with the punches was not really something I thought about before her. Part of the reason a recent girlfriend and I decided not to get married was that I insisted that the person I eventually settle down with be someone who could see themselves trying to rise to that challenge, or at least someone resilient enough to bounce back from it. She was, in her own words, too selfish to put someone else before her career (I’m not judging – she’s young and she wants to do that first and I completely understand). So yeah, I’m looking for a superwoman.

But I think the diagnosis has changed me much less than Kath has. The kid is six and she is just living. I’m twenty-five and I have a tough time getting through the day sometimes because I hate not waking up with my old girlfriend next to me. Kath has much larger problems (a “crazy hand,” [her stroke-affected right hand] for example), and she just does. I lay my head down and give up at difficult tasks. She freaks out sometimes when things get too frustrating, but she’ll come back at it. The girl floors me. 

It always sounds stupid when I say stuff like that. I remember my father telling me a story about my uncle. Dad visited him in the Dominican Republic a while back and got upset when he saw a kid playing with an old tire. He said something stupid, like “Oh that poor kid, he has so little he has to play with a tire.” My uncle responded with something equally stupid, like “The worst possible thing you could do to that kid would be to give him a Nintendo. Look at him, he’s happy with his tire.” Dad was stupid for approaching the act of a kid playing with a Western mindset (you have so little you must be miserable). My uncle was even worse for glorifying the child’s poverty, because if that kid is out playing with a tire, he’s probably not in school, not vaccinated, and not going to live a long, healthy life. Cultural dissonance, excess TV watching, shallowness, and the like are all problems that people with Nintendos can afford to have. They are first-world problems. Let’s solve the real issues first, ya know? Get the kid some goddamn shoes or something before you worry about corrupting his culture, because ringworm hurts more than Hollywood’s influence. Point is, I really am not glorifying her CP. I am glorifying the way she deals with living with a disability. Which may be equally pretentious, but I’m pretty secure in it. She is too young to really understand the full extent of her disability, and it will only get harder to cope with as she gets older. But if she continues to approach it the way she is now – stubborn and with an eye on play – I think she’ll be fine. 

Alex:     It has changed me. I know more. I know how to act. It makes me understand diagnoses. I get pieces of how her life is. Other people talking about their sisters and brothers at Bus Stop Club [a local nonprofit support group for siblings with disabilities or illnesses] and it makes me see pieces of how her life is going. I love her soooooooooooooooooooooooooooooooooooooooooo oooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooomuch. So much I have to hug her head off and squeeze the pudding out of her. I have learned how to be a good big sister. I know how to act with things. She has taught me many things to use in life.

Nick:    The most important thing this entire experience has taught me is that a human being is a human being, regardless of the differences they may have. Her brain is literally shaped differently, yet she still harbors the same things that are the quintessential human properties. She cares, she loves, she is happy, and she knows we'd do anything for her. She harbors love and companionship and really isn't very different from any of us. If I weren't trained as a prose writer I would have used the word 'condition' to replace every word like 'disability', or 'handicap' because she isn't less a person or worse than anyone, she is just built differently. She isn't that little girl with an issue, or the one to handle with oven-mitts (although everyone is that person on occasion), she is one thing above all others to me. She's my sister.

When I read their answers I was blown away. I didn’t know what to really expect though I think I had maybe expected some blasting of me as a parent and how I didn’t do what I should have for each of them, during their times of need. I almost expected that whatever I received would probably be painful to read and hear. I expected to cry. And I did.

But for a different reason. 

When I read each one I was overcome by a common thread. Of course I always knew my kids were amazing human beings (I’m their mom after all!), but they each have such a depth of compassion and an ability to see past Kath’s disability to her abilities and strengths. They seem able to find a strength through her.

They also seem to have found a way into understanding and connecting with others that I think will make them better humans.

Through Kath they each seem to have found way into themselves in deeper way, they see themselves and try harder.

Through their eyes and through their words I am able to see something they may not be able to see, until they each read the others’ words, and that is that they are stronger than they know and they each wrestle with their own feelings of lacking something. But when they each read their siblings’ words they found a strength and admiration of one another.

They never realized what the other one was going through. Maybe I should have encouraged and set up a therapy session for them, individual and as a group. Maybe if they each had time to talk to someone as a family they could have leaned on one another in a different way. I was so focused on Kath, day-in and day-out that when I had time with them I tried to separate out and have individual time with them each. And since they were already separated by age and local they didn’t have that time to really sit and talk. (Insert more mom-guilt here.) They each went through some pretty major events at the same time as Kath’s diagnosis. And Kath’s diagnosis rippled them. 

But it all turned out okay regardless. Both boys even mentioned they felt closer to me, despite what I thought were my failings.

The ripples didn’t affect them in the ways I expected or even imagined. She made them reflect…more. She made them step up in their own lives…more. She made them re-evaluate their own limits and strengths…more. She made them question who they were, what they were doing, where they were and who they wanted to spend their time and future with…more. She made them look at a bigger picture. She made them consider that ‘normal’ looks differently than they first learned. She made them step up for those who don’t have a voice. She made them step aside and accept. She made them accept their own ‘special needs.’

I have begun to say that we need to treat everyone as if they have a head injury. And I don’t say that to be flippant, but we really don’t know what anyone is dealing with or how they are really dealing with the load they have been dealt. 

Sometimes we get a peek inside when we just ask. 

And that is pretty amazing and a great start to rebalancing.

Dreams Deferred. Identity Shift.

                                                                2.

You have this dream, this idea of how your life is going to go. Maybe you think it will be a life where you get married, have kids, work hard at your job, relax on the nights and weekends. There is a plan, maybe you will even write a book or 7. 

You already know that planning for that future Dream is silly because things sideswipe you every day. But you go forward and pretend anyway.

Then you get a call, a diagnosis, that makes it so that in one day you watch as your Plans pack a suitcase and walk out the door without you. You will never again be the same person. You will never again fit into the world in the same way or place you did before. You will never again have the same relationship with the person you married. You both will be in denial and acceptance at different times. Or you will become a super hero-like team which will glue you both back together. 

But your identity will forever be changed and by that identity change there will be a change in your life path.

There has to be.

What you thought was so important a year ago or yesterday, is now nothing compared to what you need to do in order to get your child the help, the therapies, the doctor appointments, the services she needs. You now have to lay a path for her so she can learn. You can’t teach this child the same way as your other children. You simply can’t. So you read books and articles, with any luck you find a support group like I did with CHASA (Childhood Hemiplegia And Stroke Association http://www.chasa.org) and you find other people who are deferring their dreams also.

There is a poem that most of us direct newcomers to called “Welcome to Holland” by Emily Perl Kingsley where having a child with a disability is compared to planning a visit to Italy. You buy the books, you learn the language, you plan your tour, and you are going to meet your friends there. However, when the plane lands, the stewardess says “Welcome to Holland.” ‘No,’ you say, ‘not possible. I am supposed to be in Italy. I don’t know the language here, I don’t know anything about Holland. My friends are in Italy!’ But the plane won’t leave, here you must stay. You must learn a new language. Learn a new lay of the land. And make new friends.

For me the first few years were the hardest. I mourned. And the guilt of mourning a child who slept peacefully in my arms is enormous, let me tell you.  She took my time away from my other three children. I couldn’t remember things I was supposed to do for any of them, my husband or my friends. I couldn’t focus on my teaching and my writing was non-existent. As mentioned in a previous post, I certainly couldn’t remember the bills I was supposed to pay either. Everything that had been important shifted.

I felt alone. No one seemed to understand me. Roger and I are going through the phases of denial to acceptance at different paces and different turns.

I would go to the park and Kath would fall every five seconds, other moms would look over at me as if I wasn’t doing enough. Which of course, I already thought and felt. It was stressful. After a while I stopped taking Kath to the park. I was exhausted from trying to have conversations (because I was trying to talk and find others similar to the ‘new’ us, or some kind of acceptance) and having other moms nod their heads but never ask to exchange numbers for a play date. 

Kath and I weren’t play date material. 

And my poor Alex, she was stuck with us. And even the few good people who did want to set up play dates couldn’t know how painful it was to see their younger children doing things my older Kath still couldn’t and might never do. And my poor Alex, she was still stuck with us. 

I tried to have times where I would give each of my kids some time, but I’d spend most of my time talking about Kath with my older sons because I was in obsessive mode and I’m the kind of person who has to talk something out and to death in order to wrap my head around it, no matter how unwieldy. And for Alex I found myself signing up to be a Girl Scout Leader so I could have an activity that was ours, our time together, knowing that although my head might not be completely focused right then, that as the girls grew I would get better and it would work out. When I signed up, I signed up knowing it was a 12 year commitment. Sadly it didn’t work out because the moms did not, understandably so, have a 12-year patience. They wanted their Daisies to be doing things I could not lead through, yet. I couldn’t do things like camping and selling cookies in front of stores with Kath being so young and Roger working two jobs, so more friends dropped away. And it isolated Alex too. More guilt. More isolation.

In the beginning it felt like a molting of friends and because it was never very easy for me to make friends to begin with (I can TALK to anyone, but real friendship is harder) any loss is painful. Even at school, the girls’ and mine, there were some people who would ask me how I was, how things were going and since I was still in my Word Vomit Phase I would spill my guts and they would nod and shake and not make the mistake of ever asking or of talking to me again. I was isolated even at work, except by a few brave souls who stood beside me, gave me cards of encouragement, words of kindness and checked in, always asking and listening and then even asking questions so they could understand more. 

Our families live 200 miles away in Easterly and Southerly directions, so we didn’t have the benefit of having a local family support system. We do have a couple of good friends who would come by and watch the girls for a few hours so we could grab a bite to eat to regroup our sanity. We don't have anyone who can help with the therapies or even just be a constant in the kids’ lives, to pick up where I am failing. And for many years it’s been very hard for us to travel, not to mention expensive (see previous blog, chapter about finances).

I have always wanted to write books, novels. But sitting down to write for even 15 minutes at a time was impossible for many years. I couldn’t leave Kath unattended, ever. Every waking moment for her was a type of therapy--and a safety issue--whether it was giving her as much speech to hear so she could practice or moving her hands and legs through the motions of movement so her brain would learn the action and work with her muscles or whether it was trying to get Kath to think and see more deeply in her learning. By the time Kath went to sleep I often fell in a heap alongside her or didn’t have any brain cells left to think a coherent thought, never mind write a sentence or two.

And then there was the intense guilt of not being there for Alex or my older sons, Chris and Nick. That could take another blog all by itself, but not visiting my sons at college as often as I would have liked or not sending them letters or baked goods was a heavy weight of guilt and then not even knowing what Alex was doing at school sometimes or what her homework was really tipped the guilt scales.

Ah, then there was teaching. My love for teaching has always been one of my identities. During this time I felt like my teaching was not the best it could be (how could it be?). Many of my kids from those years have stayed in touch, but I have never been brave enough to ask them specific questions about what they got from me and my class during that time. I do remember one of my more quiet students telling me in response to my own reflection about my teaching that I “needed to have more confidence in myself and my teaching, that I was good” and I wondered if maybe I was pulling it off, if maybe people at school couldn’t tell how deeply wounded I felt. But then I was called in about my teaching of writing (of all things!), and without my admin ever coming into my class and seeing how I taught or asking me for lesson plans they pulled me out of teaching in the honors program the following year. I felt I was losing all parts of my identity.

My marriage was shaky at best, my other children were falling away and not as close as I wished, my family was too far away to help (other than some financial aid), many of my friends were busy in their own lives or too overwhelmed by me to be able to be there, I wasn’t able to write and now my teaching was questioned and parts that I truly enjoyed were taken away from me.

My dreams were gone or leaving or just in ruins.

However, this part of my life is much more resilient than the financial issues.

At least for me.

I will always consider myself one of the luckiest people on earth because I know Donna Sousie. No matter how long it is between actual face to face visits with Donna, I know I can text her anything, even something defeating sounding and she will never judge me, nor send me some sugar coated upbeat quote (like I might). She always hears me out and helps me see the good, the positive, the humor, or at least the least-sucky, but always in a way that does not degrade or poo-poo my angst. Donna’s sense of humor continues to carry me through many a panicked night. 

Donna also has a daughter with health issues. Her daughter was born with HLHS (hypoplastic left heart syndrome ) and she has gone through more medical crisis than anyone I know. She has seen the ups and downs of more life choices than I ever will. And yet she keeps her sense of humor. And her sense of self. She is always rock solid, even when she doesn’t think she is. That doesn’t mean she doesn’t sob in the shower like the rest of us or have to pull over on the side of the road when the tears come without warning, it means that she has courage and gets back in there every day. And she inspires me to get back in there and never give up.

Everyone needs a Donna (but you can’t have mine). Donna is my lifeline when even my husband can’t figure out what to do for me. We have had days where we met for early brunch and didn’t come home until late afternoon. But after those days I was back on track to being the mom and person I needed to be. She also keeps reminding me that it’s okay for me to want to still do the Dreams I had in mind. 

See, my life path is severely off the path I created for myself. It’s not the first time my dreams have swerved, I was the girl who a year out of high school, (secretary of honor’s society, writer for the school paper, French club member, co-leader of Students for Social Responsibility, blahblahblah and so on) had her first son and a year and half later had her second. With bullheaded determination I continued to take classes one at a time. When people would say, “By the time you finish your degree, you’ll be 45!’ I replied, “At least I’ll be 45 and doing what I like and want! And my kids will know what it's like to work for something they really want.” That bull-headedness is still there, except that now my path is much more inclusive. I don't just have a family to strive for, but I have one that includes a child with different abilities that I do need to consider in each and every decision I make.

Roger and I are rebuilding after pretty much living separate lives for the past few years when his schedule was the opposite of the rest of ours and he is working on understanding Kath better. Though my boys don’t need me to send them college care packages anymore, I do manage to stay in touch, keep up on their lives and let them know I am always here for them. My friends who remained in my life and in touch are amazing and if I call them I know they will be here. My family may not be able to be here the way I need but that’s okay, we all do what we can do, and it's all good. 

Thankfully I have found a way back into my writing which has started to help me to be able to breathe better and through my writing I have met quite a few other writers who have slowly and steadily become friends (I haven’t scared them off yet). My teaching has been strengthened through my writing and through this strength I find that I am reaching not just the honors kids but I am making a difference with the kids who need me the most, regardless of ability. 

All of these things are gifts.

Gifts I never would have had without Kath and my dreams being deferred. 

All of this is my new dream, my everyday living.

It sure as hell is not easy and I lost my rose-colored glasses, but I am growing where I was planted. Finally.

I read somewhere once that having a child with a disability and living in that world is a bit like being a scuba diver. People with ‘normal’ children swim on the surface of the ocean and see the pretty fish, occasionally getting nipped at by a crab, in the azure blue water, and climb back out onto the beach to rest but go back in and come back out pretty fluidly. Much like real people who get to go shopping with their children and not have to make Plan Bs if a quick escape is needed, or get to go on vacations, or can have a glass of wine with friends without wondering what chaos they will go home to. 

A special needs parent has to put on special equipment, a wet suit, an O2 tank, etc., more equipment than just that mouth piece, because when we go in the water we sometimes have to go further down, and for a longer time before we can come back on the shore. There is no way to know how long or how far down we will have to go. However, most special needs parents can also appreciate the exotic and different fish we see and experience, which only come out and show themselves in the deeper darker black water. The different shapes and sizes, the glowing, the vibrant ones. Despite the sharks and the poisonous exotic fish, we swim and swim and swim. That's what we do. Much like when above water, the special needs parent takes notice of a smile, of a child’s new awareness of their environment, of a new word, a new skill. When the special needs parent comes out of the water and drags herself/himself on shore, she might not even bother to take off that heavy equipment but might lie on the beach panting knowing that any second she may need to go back in.   

My dreams may have slid off course. But in all honesty I can’t imagine my life without my Kath, especially not with what I have learned as a person, as a mom, as a teacher, and as a writer. With each of my children I learned different lessons, who knew that my fourth child would still have new tricks to teach this old dog? But as challenging as this has all been, this is where I am supposed to be. And sometimes I even feel sorry for some other people who complain about something silly in their life that they think is a big deal. 

To them I think: Try having a child who you had to make sure she swallowed correctly as well as all of her food, because not only did she pocket her food in her cheeks without knowing it, but she still does forget to swallow and can therefore choke to death on anything she eats. Try having a child who doesn’t sweat and dehydrates faster than you get thirsty and it wreaks havoc on her system. Try having a child whose bowels are partially paralyzed by the impact of the stroke and cerebral palsy, so she doesn’t always know when she needs to get to a bathroom and send her off to 1^st grade. Try having a child who doesn’t always understand, who doesn’t get the idea of right and wrong, of bad and good people, and send her off to school with her long blond pigtails and huge smile and tell me your heart isn’t outside of your body until she’s in your arms again at 3:10. Try having a child who has to go through testing to see if that activity was a seizure and then trying not to worry that if seizures do start they can erase all those years of hard work. Try having a child whose balance is precarious and as you watch her play your heart is in your throat but you have to let her play, despite the scars and deep bruising on her legs. 

But that same kid is also the one whose smile is as bright as the sun and resets my world. My girl is one of the bravest people I have ever met and she is six and she calls me her mom. My child laughs with her belly and her toes. She is also the one who picks up the pencil, the crayons, the scissors and tries every single day, even though she also forgets and has to relearn every single day. She hugs strangers to her because I am talking to them and therefore they must be friends and good people (I wish). She is also the one who has dragonflies land on her that make her giggle. My girl sees the blue sky with one white trail through and says that the clouds have been rolled up, but she wants the clouds back. My girl who yells for me to notice the beautiful butterfly, then jumps two inches off her seat when it flies right at her face but exclaims, “MOM! He almost knocked me right OVER!!” while laughing and squealing.

My dreams were deferred, but they have lead me to a world where I see a depth, Matrix-like, but more beautiful and real than you can ever imagine unless you live in Holland with me. I have met some of the most amazing and inspiring people. I have found a depth to some of my friendships that we never would have explored or needed. It is still lonely at times, and I wish I had a commune…not one solely filled with my special families,… I’d like those true friends and my writer friends there too who have wiggled into my heart and have embraced my chaos. I wish that at the end of the day we could all sit on my front porch with a glass of wine and some buttered, sea salted popcorn and celebrate the simple act of surviving the day and other days we could just celebrate the dragonflies, butterflies and exotic deep water fish.

My dreams are the same but different then when I first imagined them. I had no idea that through a child with a disability I would grow to be the human I am and I thank the heavens and God for her every day. For some reason the oxygen turned off for her while she was still in my womb, she had her massive stroke, but the oxygen came back on and I have Kath and the world she has taken me to. Holland.

I may never be near to being a ‘good’ mother, but I never give up. I may not be the best wife, or even a very good one, but I am still here, trying. I may not be a very good friend, but I have Donna and some others friends who keep me going. I may not be the best teacher for all kids or the best writer, but every day I wake up and I get back in there. Every day I get back in and work at those dreams, mine and Kath’s. And that has to count for something. Kath has taught me that much.

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.

1.

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.