We’re hitting the road


Excuse our hiatus on keeping up with the blog!  I’m sure you missed us.  

As you can imagine life is busy with a wee tot around.  I don’t need to explain that!

Remember a long time ago we told you – our trusty blog readers – that Skylar has a cardiac defect?  The most common amongst kiddos with Down Syndrome?  A few months ago we were at her regular cardiology appointment and our cardiologist noticed some enlargement of her right atria – albeit small, still starting to enlarge from the stress of the blood shunting to it from her left atria.  (This may require some googling if you have NO CLUE what I’m talking about – and maybe I’ll dive a little more deeply in to this when there’s a little more time.).  He suggested it was time to start the conversation about repairing Skylar’s AV Canal defect.  That’s when we about passed out, went stone cold blank, and maybe even shit our pants a little.  I really believe we’ve been riding on this little river we call denial, refusing to believe that this day may actually come.  But it has.

After much research and conversations with friends, family, coworkers and other folks that have gone through similar experiences with their children regarding cardiac surgeries, we have decided to get a second opinion at Boston Children’s Hospital.  We’ll be traveling there next week for Skylar’s initial surgical consultation where she’ll be sedated for an echo, ekg and physical exam.  

This little cliffs notes version of what’s a much larger thing will hopefully kick start our documenting of this entire process and experience.  Not only do we want to have documentation of everything, but it’s also the easiest way for us to keep all of YOU up to date on what’s going on with our little Frog.  We aren’t the first to go through this, and we certainly won’t be the last.  

Time to pull up our big girl panties and get this show on the road!  

Apology with a Promise

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Read it.  Exclamation point.

My dearest Tree Frog,

I am sorry.

I am sorry I ever doubted you.

I am sorry I ever doubted that I would love being your parent.

I am sorry that when you were just a thought in my mind that I placed expectations on your life and how you would be living that life.

I am sorry that I thought I had a say in who you were going to be and who you are.

 I promise.

I promise to allow you to be you.

I promise to love you more than anything else on this planet.

I promise to keep you as safe as possible without smothering your own opportunities for growth.

I promise to allow you to show me the world through your eyes.

I promise to allow you to experience all that life has to offer.

I promise to answer all of your questions honestly and I promise to never lie to you.

I cannot imagine a world without your bright eyes and your somewhat silent contagious laugh.

You are my heart,

I love you.

~AMVM

Presence

In the wake of this recent election I’ve had a lot of conversations in mind about how to move forward.  It has also taught me a lot about myself.  This election will be the catalyst for me to make some serious space for change, growth and education.

I received a text from a loved one that read:

Though our political views may be different (although no one knows mine because I won’t discuss it) the media is feeding Americans fear and THIS is what I do not want for my kids. I don’t want them to be scared of their future or their president. He may not be the right decision but I will support whomever America has made our president elect and that is the message I would like the kids to understand. God is in control and I for one am greatful for another day with my fam. ❤️So please keep the news off for the next few days if my kids end up over there.”

There is a lot going on in these few words and I have taken a full 24 hours to think about my response.  Initially my reaction was an eye roll with a sigh because “I won’t discuss it” was a big trigger for me personally.  In my immediate family this has been the status quo, the way we live life.  We didn’t/don’t discuss anything that could be confrontational or differ from the family member we’re discussing it.  Sexual abuse, drug addiction, sexual orientation were all swept under the rug and forgotten about; it didn’t happen.  Shame was and is continuing to be promoted.  After the pause of 24 hours I respectfully accept that people do not want to discuss what is too difficult; however, I stand here fully exposed, afraid, proud, raw and full of optimism to tell you that I REFUSE to remain silent any longer.

In my past I was a dog trainer and owned a small home based company doing just that – I reference a lot of things back to that time because the way that I worked with and understood dogs has really translated in to how I try to approach a lot of challenges and questions that I may have.  One lesson I carry over is that ignoring a behavior condones the behavior.  If I remain silent then I am saying that it is ok, I accept this, please continue this behavior because I have not communicated that I want something other than that.

I also agree with this family member that our president elect IS our president elect whether you voted for him or not.  My choice is to remain optimistic and do my best as an American to support the person that the nation chose to put in office.  I also realize that I must do my part to educate/reeducate myself on just what this president elect’s platform is, how this whole government and politics thing works, and what I can do if I disagree with anything as we move forward in this transition.  I admit that I chose and choose to avoid a lot of discussions because I don’t feel that I really know what I’m talking about in terms of facts and while my emotional reactions are valid, they need to be backed up by research and understanding to really make an impact and to help me feel confident in handling these discussions.

I respect the right to protest and grieve in the way that someone may need.  Social media, the news outlets, print all have presented the story in the manner that they seem fit and in the way that affects the authors.  I do not and will not participate or condone hate speech, disrespect, violence, bullying.

Parental protection of our young I completely support.  Expressing the wish to not have certain experiences or conversations is the right of any parent.  I also completely support having hard conversations and exposing our children to the world we’ve created.  It’s our duty to share history, share our accomplishments and our failures, not be afraid to share our feelings or views with out loved ones.  Share what can be understood and what you feel appropriate.  Don’t pretend that your loved ones won’t see or hear what the media presents because even though they may not directly witness it people around them will and our children should be armed with the knowledge and confidence to engage in conversation should they choose.

I’m painfully aware of my privileged background growing up in white, middle class suburbia.  Early entitlement left me under an ignorant blanket that I have been working on getting out from under since my teens.  I am part of many silent minorities that I was taught to fear by my privileged background because being different was not acceptable.  I was taught that if it wasn’t my problem to ignore it and let someone else handle it.  I was taught and expected to be silent.

Together we shall stand.  I will be seen.  I will be heard.  I see you.  I hear you.

Let me leave you with words from my wife in a feed regarding the recent election:

I usually stay away from this shit, but seriously….I want to believe it’s going to be okay. I want to believe that there will be less hate and war between us and the world – I want to believe that my own struggling small business will be better for having a business man in the White House, AND as a woman who was sexually assaulted several times by men – is in a same sex marriage that i fought my fucking ass off for and didn’t just get the pleasure of casually walking in to a courthouse to get a piece of paper signed – with a biracial child with a disability that wasn’t adopted by my wife but made legally her own by more fighting through our marriage finally being made legal…..I am scared that our next president will condone bigotry and hate and otherness. I want to believe WE ALL won’t let that happen. I want to believe that our president elect will find a way to be a positive leader for us. But please, if you don’t know what it feels like to be us, please don’t be a dick. I let your freak flag fly on by when you say things that make me feel like you think I am less than you because I believe you have the right to speak your mind too.

~ Anne-Marie

9 Month Update

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September 15, 2016

Skylar is 9 months old!  This is a huge milestone for many reasons, the most important of them all?  She’s going to try eggs for the first time!  (We moms could not be more thrilled since she eyeballs our eggs every morning wondering why she can’t eat some too.)  Waiting 9 months to try eggs was a choice we made just in case she’s allergic to them.  And yes, we’re going to be those moms that pack them with us to the pediatrician for her 9 month check up next week.

What’s Skylar up to this month, you ask?  Let me fill you in!

  • Skylar is sitting up like a champ!  She’s so good at it that she hasn’t quite learned the art of falling over and catching herself, and she hasn’t learned how to get herself from laying down to sitting although she is very close.
  • She absolutely LOVES to dance.  Whether it be in her exersaucer or standing up with our support, this girl is getting her twerk down pat.  So You Think You Can Dance should be getting prepared now for her audition.  If there’s clapping, snapping, whistling, or Britney Spears on you can bet this girl will be getting her groove on.
  • Her babbling/vocabulary has expanded to include some new vocal ranges.  We love to egg her on and sing with her, some day we may regret this, but for now we find it quite hysterical.  I mean, she’s communicating with us, right?
  • Skylar still LOVES to be in public and around people – on her terms of course.  She’s got a little bit of the stranger danger and can be a little bit apprehensive when new people (or people she hasn’t seen in a while) come in to her personal space.
  • Someone also got her first tooth!  Skylar has some new facial expressions to go along with that tooth too.  We almost can’t stand the cuteness when she’s trying to figure out this whole tooth thing.  She even had her first visit to the dentist to meet Dr Spruill aka Dr Squirrel and his team.
  • Skylar went to her first movie..IN THE THEATRE!  Her twin cousins turned 12 this month and we decided to take Skylar with us to their birthday movie.  Not only did the twins take selfies with Skylar, but they also took turns checking in to make sure she was still enjoying herself during THEIR movie time.  Her cousins will be great models in how to be caring, courteous, empathetic and respectful to others.  Oh, and she did great in the theatre!  Not that we’re going to make this a theme, but at least we know she can hang if necessary.
  • She has a new doctor to add to the list of specialists this month.  She did not pass her hearing test with audiology last month and will be seeing the ENT docs next month for a full assessment and another hearing test.  In the meantime we’ve been diligent about keeping the wax down (just in case that was the issue) and learning and using sign language with her (in the event that she should loose her hearing).  Her attention span is amazing while she watches us learn to use our hands and expressions as language.
  • By now I’m sure you all know how much Skylar enjoys traveling.  She adores car rides literally at any point during the day or night.  Well, she seems to be digging airplane rides too!  This month we went to visit some of our BFFs in Atlanta for a long weekend.  Traveling with an infant is challenging, however Skylar does a pretty good job making it as easy on us as any infant can.  She’s so social and curious about her environment that it doesn’t take much to keep her entertained.  We did learn that she’s not a big fan of sunblock in her eyes, being hot, and horses – which is a bummer to this ex-equestrian.  I’m hoping that she’ll learn that horses are awesome in the future.
  • While she loves to eat and hasn’t been too picky about what she eats, she still isn’t fond of picking food up and putting it in her mouth.  She will hold her bottle now like a champ, but there’s definitely an eeeewwww when there’s a lot of food on her hands.  Give her a spoon and she’ll guide that right in to her face like she’s been doing it for ever.
  • Skylar had her follow up with Early Intervention this month as well.  Her therapist, Kim, is a no nonsense, right from the hip, honest and energetic person.  We like her quite a bit!  She, along with our coordinator, were very pleased with Skylar’s progress in terms of development.  (Proud mom moment for sure!)  We learned a lot about how to help Skylar succeed and progress over the next few months as she starts to hit tons of developmental milestones.  The biggest thing we’re working on his her strength and teaching her how to create motor patterns that will maintain her strength and teach her how to move correctly.  The moms have to learn how to overcome some of our own fears, exhibited by some of our enabling and over protection, in the process.  I (Anne-Marie) have to remember that Skylar doesn’t and cannot live in a bubble her whole life!  (For the record, Skylar having Down Syndrome has no affect on this parenting mishap of mine…)  Skylar will see Kim once a month until February when she is reevaluated based on the goals that we set for her.
  • This girl LOVES the camera.  Like REALLY.  We’re not sure how or what she understands about the camera, but she definitely puts on her most attentive face in the presence of any camera.  Maybe she’s destined to be on screen or behind the lens some day.

Our love for this little girl continues to grow beyond our wildest imagination.  I personally love learning all about this little person, how to be the best parent and advocate I can be to and for her, and growing more in love with her other mom every moment as I watch her parent our little frog.

 Editors note: WordPress is making me mad as I attempt to add photos for your viewing pleasure, this is all you’re going to get at the moment.

BS21 Team T-Shirts!!!!!!!

Our friend Skyler (no, seriously…his name is Skyler) helped us design shirts for this year’s Down Syndrome Association of Hampton Roads 5k and Awareness Walk and we could not be happier and more proud of this design!

Visit Defined Athletics to grab your very own T-shirt.  Not only will you be supporting our Skylar and donating to DSAHR, but you’ll also be supporting a local business and friend Skyler.  Serendipity?

Skylar even has her own logo!  BS for Brütini Strong, 21 for Trisomy 21 – put them together and you have a heart surrounded with strength and love.

We appreciate all of your continued support and hope to see a lot of you on October 8 rep’n these killer shirts!

PS – an updated blog post is coming!  Skylar is 9 months old!

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8 months and 7 years

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Skylar gets to share a month-a-versary with this guy’s 7th birthday!  Happy birthday Cousin Lliam!

On her 8 month birthday, Skylar enjoyed her breakfast bottle with both moms.  She had coffee chats and read one of her favorite books Giraffes Can’t Dance before snacking on some zucchini, squash and avocado (one of her FAVORITE foods).  We even managed to get a short walk in before her morning nap.  Both moms were off to work after her morning nap leaving Skylar to spend the day with DeDe (Lisa’s mom).

What’s Skylar up to these days?

  • Skylar adores morning time.  She wakes up on her own anywhere between 6:15 and 6:45 and plays in her crib until we go and get her at 7:00.  She always smiles when she sees us and immediately starts chatting as if to tell us about her dreams or telling us what she’d like to do for the day.  These are some of our (all three of us) favorite times.
  • She sleeps through the night, 12 hours.  Loves her alone time in her crib at night and asks for it as soon as she’s ready by pushing her bottle away and reaching towards the crib.  We are very lucky that she loves spending time alone and wonder if this will translate as she grows in to a girl that is independent and asks to go to bed rather than us struggling to get her to bed.
  • She LOVES to eat.  He favorite foods are avocado, sweet potatoes, butternut squash and chicken mixed with apples.  We haven’t found a food she absolutely refuses at this point and that even includes kale!  We make all of her food at home guaranteeing her the freshest and most quality ingredients we can find…she eats better than us!
  • She likes to drink water ONLY from a big girl cup, not a sippy cup or a bottle which is a challenge for the moms to keep the water in the cup and not all over the house when she grabs it in an attempt to drink out of it.
  • She loves to roll over, be on her tummy at great lengths, and she’s working on sitting up independently.  While she hasn’t mastered getting to sitting on her own quite yet, she is pulling her legs underneath, pushing up on her hands, and reaching for things that are just beyond her reach.
  • She feels like a super big girl in her bumbo seat, especially when her piano is in her lap.  She’ll hold conferences with her court or concerts for her fans and even sit and learn how to cook while the moms are in the kitchen.  One mom in particular likes to reenact the Food Network when she cooks providing much entertainment and laughter to Skylar.
  • She LOVES to play in the water!  When I say loves, I mean LOVES.  She loves to splash around, clank toys together, try to catch water as it drips off of toys or a hose or the faucet.  Both moms are water babies along with Papa Walter, so we’re pretty pumped about this discovery!
  • She is quite chatty!  She loves to babble “lalala, dah dah dah, blah blah, blah” and sing to the mom’s favorite songs (I still think dance and techno are her favorite, but I am pretty biased).  Her first sign is “more” and we working on a slew of others including “thank you”, the colors, meals and “good morning”.
  • She LOVES her changing table.  Loves to attack the sleeves of her clothes and play keep away with the moms while we try and to get her dressed.  And she makes sure to grab both of her feet and pull her bum off the table when we change her diaper.  She’s almost got her feet in to her mouth!
  • Car rides are one of her favorite things ever.  Even though the moms sometimes like to use car rides as snooze cruises on days she doesn’t like to nap – Skylar manages to sing her little heart out and play with all of her car seat toys while on rides before .
  • She loves to be at coffee shops (really anywhere in public with the dull hum of people chatting and walking about).  Sometimes she naps but mostly she wants everyone to come and chat with her so she can tell them all about her day.
  • She loves to read books, especially before bed time.  Her favorite books are ones that she can grab and help to turn the pages, ones that have big bold colors, and ones that have the crinkly sound.

Navigating this new world

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We’ve managed to keep this little girl fed, happy and alive for almost 8 months!  Mommy win!

When Skylar was born, the neonatologist in the OR (who happened to be an old client of Lisa’s and a coworker of mine), told us that she had the features consistent with the diagnosis of Down’s Syndrome and she otherwise looked great.  First hurdle, whew!  He told us that she would spend a little time in the special care nursery for Cardiology to see her, but he imagined that she’d be able to come home with us in a few days.  That’s exactly what she did – and she’s been home with us ever since.

A few things come along with the diagnosis of Down’s Syndrome that a lot of families of typical babies don’t have to be concerned.  The biggest is the number of doctors visits that have to be continually scheduled.  Since we are first time parents, we don’t know anything different that having an appointment for something every month.  If Skylar didn’t have a congenital cardiac defect, we’d still have all of the specialty docs that we do, it’s part of the package deal and to be anticipated once discharged from the hospital.  Here’s our list of docs that we see on a somewhat regular basis, and will for quite some time to come:

  1. Pediatrician: We LOVE Dr Michelle Brenner and all that she has advocated and done for us thus far.  She’s fantastic and there is just not enough space for me to write down how awesome she is.  We are so glad to have stumbled upon her.
  2. Cardiology: We see her cardiologist fairly regularly to monitor her AV canal defect.  She’s considered stable at this point and her appointments are starting to be more spaced out since she’s doing so well.  She will still need surgery at some point, but for right now she’s just feeding a growing like a typical baby.
  3. Audiology: All babies have a newborn screening prior to discharge (at least here in the states).  Skylar passed her newborn screen and has passed her first screen out of the hospital.  She has another screen this month and will continue to have appointments to monitor her hearing.  There as an increased likely hood for her to have hearing difficulties or become deaf over time with the diagnosis of Down’s Syndrome.
  4. Genetics: We’re fortunate to have a pediatrician that helps us coordinate Skylar’s care and is up to date on treatments, tests, care, etc of her patients with Down’s Syndrome.  If she weren’t, this is where our genetics doctor would pick up the slack.  We’ve met with Skylar’s genetics doc both in the the office and on a personal level and know that should we need her she’d be a great resource for us.
  5. Neonatologist: Since Skylar spent almost 24hours in the special care nursery, and she has diagnosis (any diagnosis basically would fit this specialty) she was assigned to the neonatal follow up group for the first three years of her life.  At these appointments they check her development against herself and against typical babies.  They also help coordinate care if needed.
  6. Ophthalmology: Skylar hasn’t had her first appointment with optho yet.  Kid’s with Down’s Syndrome are something like over 80% likely to wear glasses, so it’s recommended that they start seeing eye docs around 6 months of age and consistently there after.  We missed her 6 month appointment because we were advised to not see the doctor we were originally set up to see.  Her first appointment in next month.

That’s a pretty short list of docs compared to some of our friends.

The other thing that we needed to tackle was Early Intervention and navigating the state healthcare system, Medicaid.  Oh.  My.  Sweet Mary, Joseph and all things beautiful in this world.  What a headache this has been.  Lisa has been handling most of this fiasco, but I am here to tell you this has been the most obnoxious and annoying pain in the ass.  As of yet we have not found a “how to” book on navigating the Medicaid system successfully and painlessly.  Our new community of parents with kiddos with Down’s Syndrome warned us about how awful this was going to be, and they were not lying one bit.  If they hadn’t helped us start the process and share their experience we may not have made it through and been approved FINALLY.

Here’s the deal.  Medical bills pile up QUICKLY when you have a child with a diagnosis.  Medicaid is there to help with those bills in addition to the health care coverage that Skylar already has through my employment.  There’s something else that Medicaid helps with – Early Intervention and Long Term Disability Care (EDCD Waiver).  To be sure that Skylar has the best possible set up for success in life she will have the opportunity to work with any therapist that she needs based on her development.  When I found this out I wondered why other kids don’t have this same opportunity offered to them – whether they need it or not.  Of course, we can go through all of this privately and pay out of pocket for all of the therapies and interventions, but thankfully the city we live in provides some of the best therapists in the area and we couldn’t afford it otherwise.

The other piece is the EDCD waiver which was originally designed for the elderly and disabled that were/are facing institutionalization.  This waiver allows us to choose who takes care of our child in our own home and helps us pay them.  For example, one of our attendants (that’s what they’re called), is going to be Lisa’s mom.  This is important as we can’t put Skylar in daycare and risk her getting ill with her cardiac defect.  We also need to make sure that whomever is taking care of her knows how to best help her as she develops since her muscle tone and control is lower than typical babies that her age.  We would not have even known this existed had it not been for our new community of friends that we’ve met through the local Down’s Syndrome groups.

This whole medicaid thing could be a post or 50 on its own.  So I’ll save the details for later, or even create a post of its own since it’s so important to consider this an option should you have a child with a diagnosis.

Update: Third times a charm.  We’ve been denied TWICE thus far, and have recently been approved for assistance!

A Day at the Beach!

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First official beach nap. zzzzzzzzzz

Many of you that live in resort/touristy areas may have a similar experience to us – we live ACROSS THE STREET from the beach and we tend to make it less than people that come from out of state.  Embarrassing.

We’re lucky enough to live near most of our immediate family – my sister, one of Lisa’s brothers, and our parents.  It’s not only great for us to watch our nieces and nephews grow up, but it’s so wonderful for the kids to be able to hang out together.

Skylar is quite social and LOVES to be stimulated by people in the community and in our family.  We joke that she’s going to teach her very introverted mothers how to become extroverted because she THRIVES on interacting with people.  And being outside is one of her favorite things – just as her DNA dictates.

We hope you enjoy some of the pics from the most recent trip to the beach.  If you’d like to see a little video we put together, click here.

So…we had a baby!

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Look at all that hair!

This blog post is LONG overdue!  As you can imagine, we’ve been a tad busy.  Not only did we have a baby, but I (the non pregnant momma) changed careers in the middle of all of this baby birthing stuff.  Needless to say, things have changed a bit around here.

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Let me introduce you to Skylar Emerson!  She was born on December 15, 2015 via C Section.  The Cliffs Notes version of the story goes like this….

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The parade to the nursery!

Skylar was born around 2:30pm, and I was able to be in the delivery room/OR allowing me to be the first person to tell my wife that our baby was a little girl.  All along we thought Skylar was going to be a boy, so it was even more of a surprise!  She came out super vigorous with fantastic APGAR scores!  The whole neonatal team was there in case any issues arose, and thankfully we didn’t need their services beyond the normal stuff.  Skylar spent less than 24 hours in the Special Care/Level 2 Nursery (a step above the well baby nursery) for cardiology consults.  Luckily her heart looked good, no surprises, so she was able to go the the regular nursery the next day.

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Q-tipping colostrum while Skylar spent some time in the Special Care Nursery.

Lisa and I both ended up puking our brains out the day Skylar was born.  Lisa from all of the medications, me likely from stress, lack of eating, and lack of sleep.  It was a rough start for the mommas, meanwhile Skylar was dreaming sweetly of colostrum in the nursery.

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First car ride home! (Someone coulda told me about the bat in the cave?!)

Momma and Skylar came home after three days in the hospital (the normal stay after a C Section) and the learning of the battle rhythm began.  We’ve been very lucky in the sleep department.  Skylar has gone from a Snuggle Nest in our bed to a basinet beside the bed to her crib in the past five months.  She started out with an 11:00pm bedtime and has moved her way back to 7:00pm and sleeps 12 hours without waking!  She doesn’t really nap during the day which is a challenge, but to sleep all night at her age!!???  We’ll take it!

Lisa started breast feeding and pumping immediately.  There were some definite bumps along the way.  Skylar was getting too tired and working to hard early on that she didn’t gain weight the first month.  Our first pediatrician wasn’t supportive in our quest to breast feed and didn’t offer any other suggestion than formula, formula, formula.  Through some frustration we were connected with a midwife and a new pediatrician that made house calls – yes HOUSE CALLS – to help us when the owners manual that came with Skylar wasn’t helping.  Skylar and Lisa were both such troopers as we navigated a variety different methods trying to breast feed, bottle feed, supplement with donor milk, pump, etc.  Long story short, Skylar is now a formula fed baby and we’re all happier for the switch.

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So, yeah, we order our formula from over seas.

Bet you’re wondering about the whole Down’s Syndrome thing, huh?  Well, interestingly enough to be diagnosed with Down’s Syndrome there must be genetic testing done and there’s more appointments and insurance hurdles to navigate than I think anyone could prepare us for.  We’ll save that for another post and leave you with this little gem.  Oh, and find Skylar on FaceBook and Instagram!

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Fist bump! She’s 5 months old!

The non pregnant momma speaks

Someone was a little shy.

Someone was a little shy.

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.

  1. We decide to try and have a baby.  (That was actually an easy one.)
  2. After many failed attempts we decide to consult with an infertility clinic.
  3. 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).
  4. 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.
  5. We decide to have the 10 week genetic labs because….why not?
  6. 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).
  7. 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.

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This past weekend at a good friend’s yoga retreat.

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.