Chris, four years I’ve been cluttering up our house with my non-OCD attention to detail and my mini-menagerie. You said goodbye to your perfect angles and fur-free couches and allowed me to descend with my “vintage suitcases as furniture” and stacks of books I’ll probably never read again but can’t bear to part with.
Four years ago today in St. Lucia:
I love you! And our expanded menagerie…
Second Annual “Blogging for TSC Awareness Month” Day 27
by guest blogger Susan (last name withheld) (New York, New York)
I do.
And with those two words, said seven years ago today, Marc and I were made husband and wife. Richer, poorer, sickness, health. Sure, we agreed to all of these things, but did we really know what we were bargaining for? Were we just looking forward to the cocktail hour? The honeymoon? Some amorphous version of the future that involved 2.1 kids, a white picket fence, and a golden retriever? Suffice to say, the future we envisioned probably didn’t involve our child having a rare genetic disease.
But here we are, seven years later, with an incredible son who happens to have a disease called Tuberous Sclerosis Complex. If you are reading this post, you may already know a little something about Tuberous Sclerosis Complex (TSC). I’ll give you a very brief synopsis of our journey with it.
In April of 2012, Elliot was born. He was declared perfectly healthy and we brought him home to begin our life as a family of three. Within the first few weeks of his life we began to notice that he was always looking off to the left side. By the time his three-
month checkup had rolled around, the gaze preference was notable and we mentioned same to his pediatrician. He referred us to a pediatric ophthalmologist who referred us to a neurologist and ordered an MRI of Elliot’s brain. Everyone assured us that the MRI was merely a precautionary measure. They were incorrect. The MRI revealed many tumors in Elliot’s brain, consistent with a diagnosis of TSC.
We consulted with several doctors and hooked ourselves in with two TSC clinics. Elliot’s neurologist determined that the gaze preference was likely persistent seizure activity and started Elliot on an anti-seizure medication. Within days he began having infantile spasms and another medication was added. Only several weeks later did that medication seem to control the spasms. His EEG revealed he was having other types of seizures so new medication and dietary therapy were added. We began to notice the developmental delays. Eventually it became clear that further intervention was needed and Elliot underwent a series of brain surgeries before his first birthday. A few months later, he underwent a second series of surgeries. More medications. Trips to the Emergency Room. Daily battles for Elliot’s myriad services and therapies. Acronyms I still don’t
understand for tests I still don’t understand. In and out of the hospital for weeks on end. Bleary-eyed husband and wife. Can we go back to the cocktail hour, please?
Marc and I entered into our marriage young, excited and excitable. We were both starting careers and ambitiously laying the foundation for our future. We were ready to travel, embracing our new sense of “adulthood” and learning how to navigate people and life.
Nothing could have prepared us for Elliot’s diagnosis. The shock of being told that your child is stricken with a life-long, complex medical condition is enough to rattle even the strongest of bonds. The endless uncertainty and the constant anxiety caused by this confounding disease produce stress that others really cannot understand. It is very easy to see where people start to break down and therefore relationships start to falter. We have to make decisions like who will go into the MRI machine with Elliot and which one of us has to hold him down as the nurses try to get an IV for the umpteenth time. We have discussions about what medications to put Elliot on and whether he needs surgery. Again.
Notwithstanding, I am very fortunate to say that I feel much the same about our life and marriage as I did seven years ago today. We share a life in which we get up everyday ready to tackle the world together, where nothing seems beyond our reach, and where we don’t take ourselves too seriously. We know it is important to take care of each other, with the mutual understanding that we must also take care of ourselves. Though I am lucky to say that our marriage does not ever feel like work, life itself, especially this life that we have, requires tremendous effort and motivation. And I couldn’t imagine spending this life with anyone but Marc.
Just because our life is different than the one we envisioned does not imply that it is bad. We have no picket fence, but we have Central Park as our backyard. We have no golden retriever, but we have some amazingly cute stuffed animal puppies for Elliot (waaaaay less mess). I don’t even know what .1 child means, but you catch my drift, right?
It is preachy of me to even suggest that I can understand the complexities of anyone else’s situation but I hope that if you struggle with the stress on your marriage, perhaps you can just take a moment to remember why you chose this person to walk through life together. What hopes and dreams did you share on your wedding day as you gazed into your future? Despite a more complicated life than you envisioned, can they still be your hopes and dreams today?
There is a great scene in the movie “Parenthood,” in which a grandmother gives an analogy to her grown grandson and his wife, as they face the prospect of adding a fourth child to the family. She says “When I was nineteen, Grandpa took me on a rollercoaster…Up, down, up, down. Oh what a ride…I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn’t like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it.”
So today, on our seventh anniversary, I take this opportunity to thank my husband for riding this rollercoaster with me. And I hope everyone can take a moment to appreciate their own version of the same.
I’m so baffled by the people who oppose marriage equality because they say it will destroy the institution of marriage. Where is this traditional marriage-created utopia these people think they live in? Can we stop pretending that marriage has some great history? Tell me again…what is the current divorce rate? Doesn’t marriage actually have a pretty rocky background?
Marriage is like living at Disney World…
Marriage has been used historically to serve business and financial purposes (Hello, Downton Abbey) and so that men could be assured of paternity. Marriage has not typically been something that benefitted women. At various times and in various cultures women have been forced to marry much older men at very young ages, have been treated and traded like property, have been subject to rules that didn’t apply equally to men (death penalty for adultery), and have been denied the right to inherit their husband’s property and money. Women were expected to be virgins when wed, but society allowed men to do whatever they wanted.
We should ban Britney Spears and Kim Kardashian from getting married again if we want to protect marriage. Tiger Woods shouldn’t even be allowed to leave his house. David Petraeus, John Edwards, Bill Clinton…boy, did they respect the institution.
But the Bible says…
Marriages take place for a lot of reasons besides religious beliefs. The church doesn’t even have to be involved in a wedding. That’s optional. Two people can go to a justice of the peace and have a wedding that does not have one ounce of religion in it. Atheists can marry. People beyond the age of child-bearing, or simply medically unable to do so can marry, so there goes the procreation argument. Heck, for a while, in ancient times, the church preferred people not marry as it took their focus off God. Celibacy was ideal as it prevented distraction from God by family. But when the church realized that was a losing battle, they jumped on board the wedding train.
And let’s get real here. The Bible says a lot of things that don’t fly in 2013. Isn’t there something about stoning people? Oh and these? Or these! XI is my favorite!
Who wrote the Bible? God, many will say. Well, okay, but through people, yes? People never have agendas do they?
If marriage is sacred and holy to you, great. But let’s not pretend that’s the only reason why it exists.
But what happens next?
Perverted old members of NAMBLA will demand the right to marry little boys because they were born that way! Ummm…actually, no. That is not a marriage of two consenting adults. That’s child sexual abuse and nowhere near the same thing. People will want to marry goats! Well, if the goat learns how to sign legal documents and can communicate that it is a consenting adult, to the open bar I will go.
Homosexuality is not a traditional, acceptable lifestyle, some say.
Then let’s bar them from being in “traditional” committed monogamous relationships. That’s the solution.
But kids have a right to a mother and father!
Another of my favorite arguments. Because ALL kids have a mother and father now. I forgot that our utopian little world doesn’t have any single parents. I forgot that a parent would NEVER walk away from their responsibility. I forgot that a parent could never die. I forgot that a straight person would never, ever raise a child in anything other than the traditional family unit. Better only one parent, than two of the same sex, though.
What about the children?
Of course, there is the obvious point that if gay couples marry and have children, these children will be all messed up from growing up in such an amoral household. That’s a hard one to argue. Oh, wait, actually it’s not because I spent seven years in a public school classroom. You think sexual orientation has bearing on the ability to parent? These are just a few of the sad things I’ve seen:
~a student told not to read by a parent because it was a waste of time
~homework blatantly completed by parents
~a parent demand I send home pencils for homework because they didn’t think they should have to buy any
~a student told by a parent that the reason he gets in trouble is because the entire staff is racist (but not because he’s disruptive, throws things, hits, or runs)
~countless parents that never show up to anything, whether it be conferences or events
~a student that wouldn’t attend a musical unless given a solo (via a note written by a parent)
~a female student not permitted to play any sport because she’s a girl
I could go on.
These all occurred in straight households of varying race and socioeconomic status. And they are not indicative of the “typical” families I worked with. But maybe being straight isn’t enough on the list of criteria.
For further examples, please see: Teen Mom, Dance Moms, and Toddlers and Tiaras. (Thanks Jon Stewart)
I’ve had a number of students over the years from same-sex households. Some of those parents volunteered in the room. And all were very involved with their kids. I’m not saying I always saw eye-to-eye with every one of those parents, but I can assure you, that if there was an issue, it was nothing that didn’t occur with a traditional straight family. Damaged children? I assure you not. I’ve taught damaged children. Trust me. One of my top students in my last year had two dads. She made straight As, read like a fiend, and made power points about pet care and animal adoption for fun. Quick! Somebody call DFCS!
The government wanted to get involved in marriage so now they can deal with that decision. There is no reason that two people who want to commit to each other shouldn’t have access to a loved one in the hospital with a medical condition, file a joint tax return, have a family medical plan, and all that other legal mumbo jumbo. Let’s stop putting marriage, as it has been, on a pedestal. Let’s stop reinventing a history where marriage has always equalled a world of Care Bears and Skittle rainbows. Some marriages are great. Some are awful. God forbid we give another group of people the opportunity to give it a shot.
To clarify, I’m not anti-marriage. My parents have been married forty years. I’m happily married. But in my opinion, while surely there have been great marriages throughout history, as an “institution” it has only become a good thing for women in the last few decades. In the past, sometimes the only thing worse for women than being married, was not being married. It was like voting in one of our presidential elections. Choose the lesser of two evils. Marriage has not always defined our culture in a positive way. So let’s try something new.
Mixed Up Mommy 