I’m actually anxious and nervous as I sit here and type this post. As if I were getting ready to present in front of 150 of my esteemed peers (which did happen recently) – my breath has quickened it’s pace, my heart rate has localized it’s beat only to my chest leaving my arms and legs weak and tingling, and I feel as though I may burst in to tears. I’m realizing, in this very moment, that putting all of this in to writing will actually cause me to confront, feel and accept all that has and is about to become our reality in a few short months. And now I feel as though there is a giant glob of play-doh situated at the base of my tongue keeping me from swallowing normally.
THIS SHIT IS REAL FOLKS.
This post has been writing itself in my head ever since Lisa and I found out on June 10th that our little Brutini has Down’s Syndrome. Literally RIGHT after we met with Dr. Robin I had to go sit in front of 150ish of my coworkers (including physicians, nurses, residents, administration, bosses, etc.) to present a personal experience about taking or giving criticism. I thank my yoga practice and my good friend, Janet, for getting me through that presentation. Having this diagnosis weighing heavy on my mind, I knew that I needed a little help to act as if to make it through this presentation. While I was able to ignore the diagnosis for an hour, the world immediately closed in once I was alone with my thoughts. There isn’t a moment that goes by that I don’t think of my amazing wife, our little baby, this diagnosis, and what. the. fuck. since that day.
WE’RE COMING OUT ALL OVER AGAIN.
I’m not a stranger to being different. My story is not unlike other gay women before me – sure my experience is my own, but we all face some similarities in navigating coming out, how we’ll present ourselves to the world, wondering how coming out will affect the relationships around us, fear for our safety (not only are we women, we are gay women), among many other things. So, not only is our child the product of three gay individuals – our child will also be biracial AND now has Down’s Syndrome. You know, it’s kind of comical – almost Jerry Springer worthy – but I’m not laughing. I am fucking pissed that I even have this concerns, these fears, these worries, and that our kid will likely face adversity and bullying. We’ve heard things like “everything will be ok”, “people with DS are so amazing”, “kids with DS are so cute”, “you two are so lucky”, “you could have an asshole kid instead”…. ALL. THE. TIME. Sure, all of the above can and will happen – I’m a serial optimist (just ask my wife, I am a pisces after all). I have no doubt that we are amazing parents, that our kid will be loved to ends of the earth, that ultimately things will be ok. But please get your own head out of the clouds and out of this fantasy world you’ve put yourself in to – pause before you speak, and listen to what you are saying. Fantasy is over, and this is real. We have some real work in front of us.
I AM SCARED.
The reality of having a child with special needs may not ever enter your periphery until you are faced with the decision to let the baby go to term or not. The decisions that Lisa and I have been forced to make over the summer are decisions I never thought I’d have to make.
- We decide to try and have a baby. (That was actually an easy one.)
- After many failed attempts we decide to consult with an infertility clinic.
- We learn that Lisa isn’t getting pregnant because of the large fibroids – we decide it’s best to take them out, regardless of the outcome (she could’ve lost her ovaries, uterus, etc).
- After two failed IUI attempts we make the difficult decision to make number three the last one. Dr Robin said that we would be candidates for IVF after this attempt and that’s not something that we want to go through financially or emotionally.
- We decide to have the 10 week genetic labs because….why not?
- We get referred to a specialist, decide to act as if and have the CVS to confirm the diagnosis despite it’s risk (which is fairly minimal).
- After falling apart post diagnosis, we make the difficult decision to continue with the pregnancy. Yes…it was a difficult decision and came with much consultation, conversation, meditation and many tears. Yes, there was a possibility that we would terminate the pregnancy.
I truly believe we are fortunate to know the diagnosis early and not be surprised with the diagnosis at birth. The information, support, double diagnosis’ are completely overwhelming (there’s countless times that we’ve said “Now what?!”). We are getting this information in smaller doses versus getting everything all at once and we do have some time to prepare for the knows, accept the reality, learn what we can do as parents to make Brutini’s life as successful as possible, and not get thrown everything at the last minute. I’m grateful that we know this now, despite the fact that we are now in a completely different pregnancy experience than we thought we would be.
I am scared. Not so much about infancy – the health concerns (AV Canal Defect), multiple doctor visits, the early intervention process, and the normal sleepless nights don’t seem so bad to me. What I am scared of is adolescence, adulthood, bullying, legal issues if our child decides to live on their own, being the sole care takers of Brutini, and the real possibility of our child outliving us (that’s the scariest to me). I understand these are normal fears of parenthood, I do get that and you don’t have to remind me of that fact. Step out of your ideal world and really think about the future – it’s so hard to remain in the moment when faced with the possibility of an adult child living with it’s aging parents for the rest of their lives…..that’s generally NOT what you anticipate when you picture your life as a parent.
I AM SO EXCITED!
Bottom line is – WE ARE HAVING A LITTLE PERSON! I am really looking forward to sharing this life with my wife and our child. Teaching them about the world and going through that journey of discover along side the two people that mean the most in the world to me, Lisa and Brü (my nickname for the nickname that I gave the baby). One of my passions is education, experiential education to be specific, along with that comes an element of new eyes and new discovery around every turned leaf, sunrise, cresting wave, wind swept tree. I love feeling Brü move to the touch of my hand on Lisa’s belly. I love the thought of being able to comfort our child when they need it. I love to see the pregnant glow on my wife’s body every day. And on that note, I know it sounds cliché, but I NEVER thought I could love another human being as much as I adore my wife. There are absolutely no words that could describe how intense my love has grown for her through this experience. Her perseverance, grace, inquisitiveness, pure rawness (trust me, we’ve been RAW), honesty – and well I could go on – never cease to surprise me and draw me closer to her.
My mom was right when she told me that she was THE one.
Here’s what I’ve learned so far –
- We are having a BABY! Our kiddo is a person first, that is the truth. Congratulate us and don’t be sad for us.
- Tough conversations and tough decisions made together will draw my wife and closer together (because it’s been proven already).
- I’m really damn protective.
- I’m already an advocate for the baby that isn’t even born yet.
- I’m also an advocate for the women who decide to terminate their pregnancies.
- It’s really challenging to learn something without having experienced it first hand.
- People will ask you any-fucking-thing at any time when you are perceived to be different them – or pregnant – or both. People will also, in general, not think about the words coming out of their mouth prior to asking them.
- It’s ok to ask for help. It’s ok for the person or people you are asking for help to say no, but at least you asked.
- It’s ok to say NO! Just because my wife is pregnant with a baby that happens to have a diagnosis doesn’t give you blanket permission to expect me to answer all of your questions.
- It’s ok to be vulnerable. It makes me damn exhausted at times, but my closest relationships have grown from this pure authenticity.
- We are NOT alone and we do not have to do this alone. People are coming out of the woodwork and I cannot be more grateful and humbled by the generosity of others.