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 1st 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.