
Kan U Git a Bigur Wun? Kthxbai
I suppose there is some kind of hypocrisy in making life decisions that are nonconforming and then complaining because people are upset or uncomfortable that you don’t conform to something they can understand. I can’t run away from my own disability, but I could–I suppose–have arranged things so that I married an able-bodied man from Nebraska and had a house in the suburbs with 2 kids and a dog. Instead, my elevator speech about my life has developed into something like this:
I spent my 20’s and early 30’s pursuing my education and career in education and did not date a whole lot. In my thirties, I found myself single and wanting children with the old biological clock ticking, so I decided to persue fertility treatments as a single mother by choice. When discussing guardianship and other issues with my friend since grad school, D, who is quadriplegic, he asked if he could adopt my twin boys and be their father and my parenting partner. After much discussion, I agreed and that has worked well despite some health challenges along the way. In the meantime, for some odd 16 years, I have had a friendship and off and on relationship with N, a blind Swede ex-pat who lives in Canada. Due to circumstances like immigration issues and others, we have not as of yet been able to live in the same country, but are working on it. I became unexpectedly pregnant with N’s child this year, and us three parents are working well together to find solutions so all the children are cared for and have access to all of their parents. We are a funny-shaped family, but we are foremost, a family. (Time permitting, I may add that there are really FIVE parents involved, mutually working together to take care of FIVE children…but we still are, albeit very blended and geographically and culturally diverse, a loving family.)
OK, so complicated? Yes. Confusing to people at first? Ok, I can see how it would be. But is it really that weird? Is it really that freaky to understand?
Because what I get from many people, is this bit of a skeevy vibe. Like, I first of all am some kind of sexual freak with a fetish for disabled people. (Because disabled people dating disabled people is weird or wrong or disabled people being in relationships at all that result in children is icky.) And/or like they have in their head that D and I were married and I went out and had an affair with N because D can’t have sex (he can, btw…we don’t, btw) and/or too also since we all get along and often travel in a pack, we must be having some kind of kinky threesome. I have a feeling that people would accept us and understand us better if we were all in some sort of bitter custody dispute and hated each other. At least that would make sense! Because whatever it is that we are doing now, its just weird on some level they can’t explain.
But here is the other thing that adds layers to people’s freak out. It is actually many people’s main freak out. Is that we are all three disabled and there are all these children (FIVE! with FIVE! disabled parents…oh, and note that they are FIVE! healthy, smart children with no known disabilities. Disabled parents are only allowed to have disabled children, you know), we can’t possibly know what the hell we are doing. Even though, due to our geographical challenges (some of which are caused by policy discrimination because of our disabilities…not our inherent life decisions) we are all being–not perfect–but MUCH MORE mature than most parents would be in this situation, we must simply be doing it wrong.
So this pregnancy is getting harder. Little A and I had a cold last week that lingered in me for days, every coughing fit causing a Braxton-Hicks contraction. I’m huge and all my muscles hurt with the weight of the baby. I have days where I cannot walk without a cane because of my pelvic injury, I strategize before taking every step. My face is puffy, I have GERD, I have poop issues, I sleep erratically on a pile of pillows and get up 40 times a night to pee, I am exhausted all the time and have orthostatic hypotension, my kidneys sometimes hurt and I am tired of being constantly in pain and not being able to take any drugs for it. And, yes, I get sick of hearing myself complain about all this.
I live alone with two active four-year-olds who still need to go outside and get rid of excess energy. They still need to go to preschool and to church and to other stuff in the outside world. They still need to eat three meals and snacks a day and they still need their laundry done and their dishes cleaned. They still need hugs, kisses and bedtime books read to them. And I will be the first to admit, I can’t do it all alone right now, not with all this pg stuff and not with a new baby. I need help.
So I have my babysitter Kim (but Waaaah! She went to Budapest and won’t be back for two weeks!), and I have Krista who comes over a couple of times a month for a few hours and helps me out. But by far, my two biggest helpers for the day-to-day stuff are D and N. They are the two people who are involved and dedicated to the kids more than anyone else. They are who I can call at three in the morning. They are my A-Team. Between the three of us, we can usually get 85% of stuff done and we have hired help for the other 15%. (D has part-time help besides me. His attendant Rose, another two-hour a week CNA, Roxanna and a twice a month nurse, Lynn. N is the most independent of all of us, but has his roommate, Grant, to help with reading mail and friends from work who give him rides from time to time.) It is a complicated system, I suppose, but the point is that we try to do for ourselves as much as possible by helping each other out and then spreading the rest out to many people, most of which get compensated for their help.
So, all this is leading somewhere, I promise. I’m just finding that as I need more help in this late stage of my pregnancy, people are more confused than ever about who does what. Some people seem to think I can do it all myself and I am the main caretaker of not only my kids, but of D and N, too. Others think I can depend on D and N for everything so why am I asking for outside help? I get that people can’t possibly be expected to understand who does what and why and how, but can’t people just take my word for it instead of acting like I am teetering on the edge of sanity?
Examples: The kids’ preschool projects that I talked about last week. The teacher knew it was going to be an issue for me to take these two faerie garden things home. So she asked if I wanted to just keep them there until “one of my husbands” (okay, that made me chuckle) could help me take them home. That was all fine and good and nice of her to think of me—until she said, “oh, well, I don’t know if they are really any help to you anyway, are they?” Then I was like, huh? I didn’t know what to say to that. And then I said something muttery like well, D can maybe pick us up in the car or N could help me carry on the bus. But I ended up just taking them home one at a time anyway, because it wasn’t that big of deal and spending their day to come with me to help me carry a faerie garden just doesn’t seem like a good use of anyone’s time.
Another example: I called my doctor’s office today to see if I could get some kind of documentation for N to come out a few weeks earlier than the actual birth. Parental leave starts at the date of the baby’s birth. To come earlier, he would have to take some kind of family medical leave. I would need documentation from my doctor saying that because of my high-risk pregnancy and the fact that I live alone that I could really use some live-in help from a family member. Not a stretch in the least. Right? Am I being wimpy here or what? To me it doesn’t seem that unreasonable to ask. Does it? Not like it affects them anyway, he would not be paid for it and they’ve already hired his replacement for parental leave so he is set to go.
So this nurse that I knew from my last pregnancy but haven’t seen in five years calls me up and hems and haws over it. Doesn’t he have vacation? (Well, it is the end of the year and he is using part of it, so no. Don’t you think we’ve thought of that?) Then it comes out that she’s heard all the office gossip about us. I’m the one with the twins and the guy who is “confined” to a wheelchair and some other Canadian dude that has “difficulty seeing.” (Yeah, if not seeing at all is difficulty seeing.) She knows all about us. And her concern is this: She doesn’t think it is plausible for the powers that be to grant family leave to someone who is blind because how is he going to help me anyway? Have I thought about him being yet another burden on me? Don’t I have a family member who can come stay with me awhile?
Well, first of all…I’m asking for documentation that I need help for medical reasons, I’m NOT asking you to pick who should be allowed to help me. So what difference does it make to her? She just needs to say I need help.
And second…UUUUUUGGGGGGHHHHH….Get me away from ignorance for just one day and I will be so happy! Can it happen? No?
I know.
Sigh.
I always used to joke about having brochures handy to hand out to people about my disability or my guide dog or whatever. Here is my new brochure.
Ways the Father’s of My Children Can and Do Help Me Out, and Ways They Cannot
N can and does:
- Do laundry, dishes, cooking, housecleaning and shopping. (He does require help with shopping, but store clerks can help him or D can, and he can bring all the bags in and put them away.)
- He can dress the kids, help them with all of their little teeth brushing, bathing, and eating tasks. (With a small amount of guidance from me about what clothes match.)
- He can completely supervise the kids, play with them, take them to the park and for walks, even do a modified version of reading books with them.
- He can change diapers, make bottles, feed a baby, carry a baby, get up in the night with a baby, dress and bathe a baby, do pretty much all baby care except breast feed.
- He is a pack mule. He can carry a shitload of stuff while still being able to cane travel. He can do any heavy lifting around the house.
- He can run errands and travel independently if he is shown once or twice how to get somewhere.
- He can order anything on the computer that we need and have it delivered.
- He can do handyperson stuff around the house, yes. With tools. Like even drills and saws and stuff.
- He can fix my computer (the software side of things, mostly).
- Most importantly, he can let me sleep in, fetch me my morning coffee, give me back massages, keep the kids entertained, decompress with me at the end of the day, and generally let me have a little time to myself.
- He can work and provide a salary that helps support us.
D can and does:
- Drive me around a lot. Allow me to haul stuff I can’t carry on transit like a Costco haul or groceries.
- He is also a different version of a pack mule. He always has water, napkins, little ketchup packets, hand sanitizer, etc. And you can always pack a shitload of stuff on his wheelchair when shopping/walking.
- Act as my communication intervenor (otherwise known as SSP, special support person for the deaf blind) giving me visual and auditory information about the outside world and facilitates communication between me and others.
- Act as my medical liaison by providing the above intervenor services but also by having medical knowledge and a knowledge of me needs and desires in a medical situation should I become incapacitated (or just drugged up.) Does pretty much the same for the kids. He researches a lot of kid controversies like vaccines and other things and gives me a report.
- Take the kids out of my house for several hours at a time, entertain them, feed them light snacks, and teach them a hell of a lot about science, music and math.
- Help to corral, monitor and entertain the kids on outings.
- Fix my computer (the hardware aspects of it mostly with help from me or N to do the actual screwdriving kind of stuff). Also, need an extension cord? A phone? Spare parts? a Hard drive? Microsoft Office? 150,000,000 songs on MP3? D probably has it lying around somewhere that he’ll give me for free.
- Chocolate. He always has chocolate at his house when you need a fix.
- Understanding about illness and pregnancy stuff. He gets it because he lives his own version of it. Other men may try to be sympathetic and what not, but D GETS IT. This is the guy you can barf, bleed and have diarrhea in front of and not feel too bad about it.
- Run errands for me to a limited extent. (He can usually do any drive-through or pick up something where he is already going, but I don’t ask him to make special trips just for me. It is too hard for him to get in and out of his car.)
- Also decompress with about disability, kid, and other stuff.
- Pitches in money for incidentals or unexpected big purchases and emergency needs from time to time.
There is probably other stuff I’m forgetting, but you get the idea. They do more for me than it seems like a lot of able-bodied husbands do for their wives. I think I do a lot for them as well. But now when I am pregnant, they are able to carry much of the burden and help me out a lot. I need them, and I’m really angry that people can actually stand in the way of my access to them because of their stupid, ablist ideas. It is hard to be a single mom, alone and very, very pregnant. It would be really nice if I could be cut a break here, ya know?
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Here is a funny I will leave you with, that could only happen in my family.
The kids have been asking the how babies are made questions. So I found this book in old boxes from my childhood called “How Babies Are Made.” The copyright is 1968 and it is published by Time/Life.* It is actually pretty good considering how old it is. It has these kind of cool, very simple illustrations and diagrams that are all made of cut out construction paper. It progresses through how flowers, chickens, puppies, and then babies are made with pretty straightforward language.
Now, as usual however, I have to supplement with my own information. Again, regarding the boxes I don’t fit in, this is starting to happen a lot. The kids went to a sibling class at the hospital and it was pretty good, but it was all “your mom and dad this” and “your mom and dad that.” In the UU church, we say “your grown-ups” because we actually recognize that not everyone has a mom and dad live-in dynamic in the home. So, I had to do some explaining about how it is okay that their dad doesn’t live with them, a lot of dad’s don’t, or moms, etc. And that N would be doing most of what they were saying the dads would do in this baby scenerio.
So anyway, I’m reading this book to them and supplementing my own information where necessary. (Little N: “I’m TIRED of the chickens, get to the part about the HOOMAN BEANS!)
Now we learn that it takes two things to reproduce. eggs and pollen to make a seed, sperm and egg to make a chicken, puppy, or hooman bean. Here is where I have to diverge, and where they are used to me diverging. Mom and dad did not lay down together and dad did not put his penis in my vagina and put sperm in to swim up to the egg. They have heard this part for years. Babies can be made in different ways, families can happen in different ways. We talk about adoption and other scenarios, but that it is still true that all babies start out with a sperm from a man and an egg from a woman. In our case, they know, daddy didn’t have any sperm for us to use because of his accident. So we were given a gift by an anonymous donor who we call Sergei but we don’t know him. But he gave mom some sperm to use to make A and N. And mom and dad went to a doctor and the doctor put a small tube in mom that let the sperm swim up and meet the egg (TWO EGGS!) and make (TWO BABIES!) a very special bonus!
So, this time was the first time they connected that I have a new baby in my uterus that must have come from somewhere.
Little A: Who gave you the sperm gift to make this baby?
Me: N did.
A: Did the doctor in Toronto put the tube in?
Me: No, N and I actually made this baby how they show in the book. Where he puts his penis in my vagina.
A: (Seeming to notice for the very first time that this is even a possible scenario and examines the construction paper cut out of a man and woman lovingly laying together in bed under the covers, and then an inset picture showing a very simplified diagram of a penis in a vagina with sperm swimming up to the uterus. His eyes get big…you see a light bulb go off over his head…he collapses in a fit of hysterical giggles on the couch.)
A: You let N POTTY in your VAGINA? You said POTTY only goes in the TOILET!!!!! (more giggles, Little N doesn’t get it at all.)
Me: (cringe and…eeeewww!) I go on to explain that potty does go into the toilet and two things come out of the penis at different times blah, blah, blah. He calms down, but he’s still bemused by the whole idea. My four-year-old is now a sex expert.
The other funny thing he said was when they were showing the tiny embryo grow bigger and bigger in the uterus, he exclaimed, “HOW is that BABY going to GET OUT OF THERE!!!”
To which my painful ladyparts cried, “I KNOW! That’s just plain crazy talk!”
*OMG! I found a funny blog post about this book! There are a lot of pictures of the construction paper illustrations, too.