It was a Sunday. The sixteenth day After Liam was born. Karin and I scrubbed into the nicu as we had every day and made our way down the unit towards B bay and our waiting baby boy. We were a few weeks into this new life and foolishly feeling pretty confident. To this point things were going remarkably well, all things considered. Spirits were definitely high. Making our way past the nurses station it was Dr. E who stopped us.
“Mom and Dad Olson, I’ll need to talk to you in private for a few minutes. We got the results of Liam’s MRI.”
I can’t honestly say that I’ve ever been punched directly in the gut but I’m pretty sure that I know what it feels like. We made our way to Liam’s isolette as quickly as possible to check on our little tough guy and maybe get a chance to touch him really quick. Touching Liam had still been a rare luxury then and Karin had only held him once so far. We grabbed a few touches and blew a bunch of kisses before heading to the dreaded “family room” for our sit down with Liam’s attending physician, Liam’s nurse for that day, the chief resident of the unit at the time, and a nurse practitioner. There was probably a social worker in there too but I don’t remember them saying anything relevant.
“There’s something wrong with your son’s brain. . . It’s smooth. . . Lissencephaly . . . it means smooth brain.” he picked up a dark red dry-erase marker and drew a blob on the whiteboard that I suppose got the point across but I wouldn’t have gone with brain if we had been playing Pictionary. Dr. E is a short man, balding and speaks with a heavy Spanish accent. He pauses frequently as he speaks you can almost see the translation process happening in his head. He is a patient, compassionate and utterly brilliant man and doctor but as he tried his best to give us horrible news each of those pauses felt like an eternity. “I only have the preliminary findings so far . . and I am not a specialist in neurology . . . but I can tell you that this is not a mild case to your son’s brain. . . We’ll have to talk to a specialist tomorrow.”
Karin and I tried to calm our tears to listen more intently but could only muster sobs and shocked silence while Dr. E, as if trying to alleviate his own nervousness by doing something with his hands started drawing a much more detailed diagram of a normal and abnormal brain from side and above viewpoints.
“He probably will not ever speak . . . or walk. . . His brain will most likely stay like an infant’s. We don’t know yet . . . if it has effected any of the other organs or instinctual functions.” the words seemed to hang there and while it was probably only a few minutes into the meeting I felt as if I had spent days in that room being watched. Still, all I could think of was Liam laying peacefully in his isolette. His little fingers and toes. His peaceful face all covered in tape.
The other nurses and doctors sat in silence as hard words seemed to hang stiffly in the air. The red brain drawings mocking me from the whiteboard across the room. I wiped my face from what tears I could and grabbed Karin to my chest and squeezed her as hard as I could whispering into her ear that whatever the future holds we were still the parents of a beautiful baby boy.
The nurse practitioner who had handed us boxes of tissue cut the silence and asked if we had any questions and while we would end up staying in that room talking for a long while with as many questions as my shocked mind could come up with, it was my first question that seemed to catch them off guard.
“do you think I’ll still get to hold him?”
Chances are that if you are reading this blog you are familiar with the essay common to families of children with special needs ‘Welcome to Holland‘. It’s nice. It’s simple. It’s short and it’s sweet and it’s a nice way to help friends and other family feel like they’ll “get” what your going through. If it helped or helps you or someone close to you great! And I truly mean that, but I found it really hard to relate to. It minimizes too much on both ends of the metaphorical “trip” but I guess if nothing else it does give us a useful metaphor. So I’ll use it to help tell our story. To tell about how we stopped worrying about the destination and focused on our journey.
At least once during each of Liam’s hospital stays someone, be it doctor, nurse, or social worker, will ask us how we do it? How do we stay so upbeat even during the darkest times? Now don’t get me wrong, in private we’re not always upbeat. I mean we are human. But I’d agree that for the most part we are a very happy family given the complexity of Liam’s condition. I understand the question. I do, even if I sometimes suspect that we’re being asked because they think we are in denial about how serious things really are. Believe me, no one on this earth knows how serious things really are. But what does stressing even further about them accomplish other than wasting the precious moments that we are lucky enough to have with Liam?
So how do we do it? How did we come to accept landing in Holland with Liam quicker than many other travelers?
I guess it’s in all the other little trips we took where we didn’t even get to leave the airport.
Karin was put on this earth to be a mother. She has so much love to give that it would cause her harm to not have someone to share it with. Believe me when I tell you that had hospital security not been so tight we probably would have left that nicu with a few extra little ones under her jacket. So in one of the universe’s bullshit O’henry style jokes, of course it would be difficult for someone so perfectly made to be a mother have difficulty starting a family.
The universe just isn’t fair.
Liam is the product of our sixth pregnancy. In addition to each of those heartbreaks there was also an unsuccessful IVF/PGD attempt.
Without rehashing all the details, most of the miscarriages happened in the first trimester but not by much.
And of course there was Ben.
Ben Olson was born and passed away at 9:06am on September 22, 2006 at a gestational age of 24 weeks. (Liam was 27) I think of him and the short time we spent together often and not a day goes by that he isn’t missed. I know that he’s always been Liam’s little guardian angel.
So let’s get back to our trip to Italy/holland metaphor. Pregnancy for us was like planning a trip to Italy, getting on the plane flying over italy but getting beat up on the flight then upon landing in holland having a canvas bag thrown over our heads and forced onto another plan that took us directly home and dropped us off without our luggage. 6 different vacations each time being left at home, battered and broken, and of course, the damn tickets were always non refundable.
By the time we were on our trip with Liam we were done planning for where we would end up, we just wanted to go somewhere.
Italy? Holland? Hell, we were happy to land anywhere that would have us. Which is why I think that we were able to embrace parenting a child of special medical needs so quickly. We just wanted a baby to love.
There’s a saying in parenting a special needs child that you often hear about mourning the “typical” child you will never have, to accept the child you do.
Screw mourning. Karin and I had mourned enough. Finally for us, It was time to be parents.
Now I’m hardly saying that we were positive and upbeat by the time we left that family meeting. Hardly, in fact, on that fateful Sunday a few weeks after Liam was born we did spend the afternoon crying. And explaining what we knew and didn’t know about liam’s condition to our own parents and cried with them. Worrying more about their acceptance of the facts as grandparents than our own.
We returned to Liam’s bedside as the evening nurse had just arrived and Karin grabbed her as soon as we walked in and said “Eric needs to hold his son tonight.”
A few moments later and after consultations with doctors and respiratory therapists, Liam was placed into my arms. I have a picture of it beside my bed. I squeezed him as gently as I could and I told him I loved him as many times as i could and the three of us sat together as a family the way we have nearly every night since.
The next day we met with Liam’s neurologist and a geneticist. We asked questions and learned more about Liam’s condition. We started enjoying Holland (or whatever damn country this is we ended up in)
That night, three years ago this week, I posted the following message to family and friends who had been following a private website we had set up for sending out updates and info. I’m reposting it in its entirety now for all of you, My new friends and readers, because it rings just as true today, a few weeks after his third birthday as it did three years ago when I wrote it.
How do we do it? Do what? Be a parent? Liam is my son, and I’m the luckiest dad in the world.
The Olson family had a pretty bad day yesterday. We were told that our MRI was not good and that it was some very bad news but the doctor who told us this felt that he didn’t have the expertise to give us any more details than that. I didn’t want to write about it here until I had an actual diagnosis. Liam had a much better day than Karin and I did as he got some rest and weaned from his vent a bit more.
Liam has been diagnosed with a disorder called Lissencephaly which means exactly what its translation is — Smooth Brain. Liam’s brain is smooth meaning that it stopped developing very early on. This is not something new but something that he was born with. Although its severity cannot be totally determined by an MRI we do know that this is not a mild case of the disorder. Liam will have intellect delays as well as difficulty with motor skills. He may not be able to communicate verbally at all. Seizures are usually present as children with Lissencephaly get older. The severity of those symptoms and his potential for the future is also not something that can be determined by an MRI right now and so we will not know for perhaps a year or more how badly this will show.
Let me say first of all that Liam is not in any pain. He is not suffering and we are still working very hard to help him get feeding and breathing on his own so that we can take our little guy home. He still opens his eyes up wide when he hears his mommy and daddy and is gaining weight by the day. Karin and I had a bad day yesterday because we were only told bits and pieces and our own imaginations were left to fill in the rest. Liam had a blood draw that tuckered him out but other than that had a great day because he got to be held by his mommy in the day time and held by his daddy at night!! (thank you for that Caitlin!)
This may sound strange but after talking to a Neurologist and Geneticist today, Karin and I were relieved. We still get to take our boy home. We still get to tell him we love him and although he may not be able to “tell” us he loves us too, the doctors tell us that he will be able to show affection. We don’t care if he never gets out of a bed and never says a word; we already know that we will (and do) love him as much as we would if he were the captain of the football team or the valedictorian of his class. He is our little man and the best parts of our day are when we are sitting by his bedside talking to him. Karin and I know how much we love him and he knows that too which is all that matters. I know that you all will keep us in your prayers and thoughts but please do not feel bad for us. Liam is going to need a bit more love and affection than most children and that is why he has been given to a family with more than enough love to give