Sometimes Funny is All We’ve Got
August 3, 2011 in Featured, From Julia by Julia Roberts
When our first child was diagnosed with developmental delays we didn’t know what hit us. We’d gone from having a perfectly healthy 8 month only child to one that was in 7 therapy appointments and “at risk” as defined by the state’s early intervention program.
Those were not fun times. While we were still acting as a regular family, we were focusing on getting used to our new normal. Which turned out to be not very easy. It did happen eventually and we were happy again.
But we didn’t know what we didn’t know.
A little over a year later we were faced with our new baby’s diagnosis of a life-threatening kidney disease and 3 months later our son’s diagnosis came. It was not a happy time in our house. In fact, I clearly remember doing anything but laughing or having fun…for a very long time.
That was the year I refer to as “The Fog” and I remember it well. Back then, before I was blogging at Kidneys and Eyes to release some of the pain and hurt and experience, I would send out batch emails to close family and friends to give them updates. Those emails were excruciating to send because I didn’t want to sound too depressing, but honestly? Things were depressing around our house. We were still getting our special needs parents legs firmly planted on the ground. So while I was kind of pretending to be okay, things became okay. It was a “fake it til you make it” kind of thing.
During that time my beloved and I would test out our funny bone on each other. We’d say something totally inappropriate outside the walls of our brick ranch home and slowly but surely we started to believe. We started to believe in humor again. It didn’t happen all at once; it slowly crept back into our lives.
Over the years as we cried about the progressing symptoms of kidney failure, developmental delays and bad reports all around us, we learned that we could laugh. I remember the night when I got a call on my cellphone telling me it was time to get our son in to talk about a kidney transplant; his lab numbers had taken a turn for the worse and stayed there. When I got home my husband took one look at me and he knew something was wrong.
The kids were eating dinner at the kitchen counter and while I was crying they were screaming for milk (or goldfish or yogurt) and we were both trying to hid our tears. I am fairly certain I sighed heavily and rolled my eyes because the kids have the audacity to ask for more to eat or drink and I said something like, “Ugh! We can’t even talk for one minute about dialysis and kidney failure!” My husband looked up at me and said, “What, don’t you think mortality and milk mix well?”
I agree, it’s not THAT funny, but it did come at a good time. We talked about how life just keeps moving on; the kids still have to eat. So, we just moved on through two kidney transplants (mixed in with dialysis, depression, mental health issues and trauma) and here we are, trying to get ready for the next crisis (which we know will always come).
Sometimes we make fun of our life and our kids to left off steam. Sometimes it’s because we need a laugh. Sometimes it is because some of the things they do because of their disabilities are really funny. Sometimes it is because if we didn’t we would cry.
I like to make fun of what we say and I chronicle it on my blog by titling certain posts with “Spoken in the Mutant Family Household” because it’s my way of embracing our inner (inappropriate) funniness (Sometimes about the kids! And their disease!) and our outward mutantness.
There’s hardly a better way to live this life than to laugh at it and that includes laughing with (and at) my mutant children. I have to admit some days it is the only way we can live this life.
Does humor get your through the day sometimes?




I’m going to do a little pseudofaulknerjoycetype thing right now and just write as a sort of exercise how my morning went in all of its chaos and, sadly, mundanity (is that a word?) because picking or peeling or lowering your child to the floor and then up so many times that it becomes a cliche is a cliche is a sad sort of affair but that’s what happened when Oliver and I were in the bathroom with Sophie, brushing our teeth or I was brushing hers and Oliver was brushing his own and Sophie got that faraway look in her eye and she already was acting weird and probably shouldn’t have been going to school but I just couldn’t take it anymore, keeping her at home and I thought, possibly erroneously and certainly irresponsibly that I was just going to send her to school so that her aide could watch her instead and anyway, we’re brushing teeth and Sophie’s body stiffens and her head turns to the right and she lets out a groan as I simultaneously lift her up, stiff so that her hand gets caught in the shower curtain and sort of wraps around it and I’m still holding her and trying to balance her horizontally mainly because she broke her leg once during a seizure when it snapped from the pressure of the tonic thing but anyway Oliver is staring aghast and toothpaste is still in his mouth but he knows to try to unwrap her hand from the shower curtain so that I can carry her jerking now and horizontal out of the bathroom and around the corner to the bed where I lie her down and then simultaneously we hear the woman driving carpool beep in the driveway so that I have to holler for the boys to get going and don’t make them wait but I also grab Oliver and look him in the eyes and tell him that I know it’s awful but it’s going to get better and I love him and Sophie will be all right but he runs out and down the hallway and collides with Henry who has missed this show and sort of brushes past Oliver on his way out the door and then Oliver yells, at the top of his lungs, which is a very good expression:
I’ve been thinking that we have a lot of specialists. More than most not as many as some but it includes a couple of geneticists. We’d met our first one with our son Gage, when he was 20 months old.
