Internal Thoughts

Is this real life?

**warning** This is long and barely edited.  I have no energy for cute pictures either.  It was just time to let you all know what’s been going on…love, Lisa

These past 17 months have been the most challenging of my life and these last 11 days a special kind of torturous hell. I always thought that the consequences of my heart-breaking decision to come out finally at 38 and divorce my friend of 13 years was going to stick with me as the most challenging and necessary of my life.  No.  Without my wife – her strength and fierce love, there is no possible way I would have made it this far in this whole process of trying to conceive and have made it these past 11 days without (quite literally) contemplating suicide.

January last year, we pulled the trigger and started trying to conceive on our own with tedious tracking and planning and some inconvenient and awkward meetings with our baby daddy, Walter.  After about 6 months of trying, we scheduled with The New Hope Center at the recommendation of a dear friend and gynecologist.  Right away, Dr. Robin found that my uterus was covered in fibroids – one huge one that when removed would seal my fate in never being able to give birth vaginally.  That was a tough truth to swallow, but reconciled that Anne-Marie holding our child would out weigh my deepest wish to give birth naturally.

This surgery (I had another invasive abdominal about 8 years ago) in August left major carnage in its path – the largest fibroid being so large that it required an extra incision under my ribcage that still bothers me to this day when I eat a little too much, or when I sit too long, or now with being pregnant the pressure of my swollen abdomen.  Healing was a lengthy and arduous process that almost broke my spirit, but Anne-Marie was my rock, my nurse, my cheerleader.  As soon as we were permitted to start the process with New Hope in February, we did.  Being 42 was making the big clock in the sky tick fucking fast.  Anne-Marie and I were ready and knew that who we are as people and to each other was the perfect foundation to push ahead and face anything that was tossed our way.

After two failed cycles, the third was to be our last if we could pull together the energy and the money – enter YOU, all of YOU that made us a part of you and made us feel you and your love and your genuine support so deeply that I think that helped with the third cycle being successful.

Success!!  The hardest year of our lives and we made a human with all of your help!  I’ve started a blog post in my head about a thousand times to share my first trimester with you all – but I was so miserable so much of the time that I didn’t want to seem too negative, so I thought I would wait until it (hopefully) passed and I could have perspective.

Last Wednesday June 10th at 7:30am all of our smiles through the nausea and the heartburn and the exhaustion – all of our laughter at the strangeness of people’s behavior once they know there’s a baby in your belly – all of the celebration and storytelling back and forth with other mothers quickly became a heavy-hearted flood of tears and sadness that we both thought might swallow us whole.  Time stood still and we could not fathom that this could be our story.

Our team at New Hope highly recommended that we take the InformaSeq Prenatal Test at 10 weeks to rule out any chromosomal abnormalities.  I did share with a friend that I was a little nervous – being over 40 comes with risk, but I had already been through so much and weathered so much physical and emotional battering that the Divine couldn’t possibly see to give us any more challenges.  So, we put it out of our mind.  We got the call that Monday night that we needed to get with Dr. Robin right away and our hearts sank, but we refused to leave the moment and refused to let our minds get the best of us.  We held each other tightly and remained calm.

Trisomy 21 – Down’s Syndrome.  It was as if we were thrown into a nightmare unable to shake ourselves awake.  We were frozen and squeezing each others hands so tightly as if it could numb out the pain. Dr. Robin very calmly led us through what to do next and what our options would be depending on what we decided to do with the pregnancy.  Our first next step was to have another more invasive test, the Chorionic Villus Sampling, that would yield more concrete results.  The New Hope Center set up the appointment for us to meet with the staff at Maternal Fetal Medicine at EVMS the following Monday.

In the meantime, we both had to work – that day.  The realities of this past year have left us living paycheck to paycheck with no room for errors.  I had four clients that day and was in such a haze the whole time that I barely remember the day. Having a job that involves taking care of people and being very close in their space and energy and whether you get a paycheck or not depends on how you hold it together to give them their experience, is and was brutal.  And the days that followed, the anger and anxiety were so strong that although I had to keep calm and ironically tolerate some pretty major professional degradation (this person’s timing is impeccable as usual,) I did what I could to set boundaries because I was ready to literally have a breakdown at any moment.  I know Anne-Marie shared with me the same – that the anger she as feeling was bigger than any she’d ever felt before – so big that she didn’t know how to manage it and so strong that she didn’t even really have a container for this level of anger.  All of you who know my wife, know that anger is not an emotion she owns often or well.

We slowly began telling people about the diagnosis mostly through texts because the telling out loud over and over and over was excruciating and letting them know that we had no idea what we were going to do – whether we would continue the pregnancy or interrupt – and ask that people not hover and not ask too many questions and just be there for us.  Everyone has said that they would be there for us either way – with some interesting personal opinions slipped in here and there (why, people why?) – and that we won’t be judged and to know that we have our village.

Our appointment at EVMS was way more than we were prepared for.  We were whisked back to the genetics counselor who informed us that we would be talking with her for about an hour and then we would have a full ultrasound and then whatever test we opt to have done.  She said we’d be there for several hours – I panicked – I needed a snack and we were both terrified.

The staff was thorough and straightforward – the ultrasound tech was amazing at her job. This was our first abdominal ultrasound and I couldn’t stop the tears from rolling down my face – I could’t even look at Anne-Marie.  There was our baby (by the way, I hadn’t been able to call it Brutini since the diagnosis – my first reaction was one of pure detachment and that this thing isn’t me and it is foreign and sick and I want it out) arms and legs and swimming and flipping around so much that the ultrasound took almost 30 minutes – the ultrasound tech was literally chasing the baby around my placenta.

Then the doc came in with the ultrasound tech, a student and his assistant.  It was a whirlwind of him doing another ultrasound to be sure where my placenta was exactly before shoving the needle in my stomach and then callously informing me that my uterus is rutted and potholed, and he wondered why and if I’d given birth before – obviously this is the consequences of my fibroid surgery and why I’m unable to ever go into labor.  Then the surgery set-up began – needles and draping and movement and energy and gloves and chatter as if I wasn’t even there.  I closed my eyes, focused on my breathing and on Anne-Marie’s body right next to me keeping me from shattering into a million pieces.

It was painful and bizarre and the spasming in my back was excruciating, but with a needle piercing my body all of the way through to my placenta, moving or making a sound was not an option.  Shock – exhaustion – cramping – fear – resignation – withdrawal – fury and absolutely no room for anyone or anything else as we wait.

We received the final results on Wednesday night June 17th.  Our baby has Down’s Syndrome.

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12 thoughts on “Is this real life?”

  1. Oh friends. I can only imagine how difficult this news must be for you. I understand the anger and the anguish. It seems like you finally get dealt a decent hand, and then, no one wants to play anymore and all the cards are thrown back in. Just know that this community saw you through to this point of your pregnancy, and we will see you through in whatever you decide to do with the remainder of it. Children with down syndrome are so precious and so special, but life is difficult. But isn’t it with all children?! Callie and I send our love, our prayers and our support to you both.

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  2. I am so so so sorry.
    I went through all that testing as well, being an old mom when I had my boys.
    You have been dealt a bad hand. No fair. No fair. This totally sucks. I share your anger and dispair.
    My heart is filled with love for you both as you deal with this decision.

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  3. I truly truly believe that the more we discuss and share the difficult stories of our lives (when we can) (and of course the joyous stories, too) the harder it is for people to hold too tightly to their opinions and judgements. We hear the stories that used to stay bottled up, or that were socially unacceptable to share, and our hearts open, our empathy grows, and our ability to stay present for each other without forcing our own fears and personal opinions onto each other becomes stronger.. Thank you for being so brave and sharing your journey. I hope all those close to you stay present for you in this time, and just remember to trust your heart and gut at every turn. You know what’s right for you (two) and only you. Love love love.

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  4. Dearest Lisa & Anne Marie, I hope you both know you have my deepest love & respect. I have been concerned for you both over the past week but Akemi and I wanted to respect your privacy in every way and we both thank you for sharing your experience. I feel that the courage you both have had and are now demonstrating on your life course is profoundly moving and exemplary. I see clearly the purity of your hearts and the goodness of your intention.
    Going forward will take even more courage and inner strength on your behalf which I’m confidant you both have. Always know, whatever course you choose to take I’m here for you both in any way you may need me. Suffering is so much a part of our human experience, Iv’e learned over the years that it’s how we face it and deal with it that makes all the difference in this life.
    With Metta loving kindness to you both, Donald

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  5. I will keep you in my prayers and will just leave this, God doesn’t give you more than you can bare. Also I know this is hard but I feel that we are chosen to be parents that children are a blessing to us. With that being said you were choosen and blessed for a reason I believe wholeheartedly that you two can handle whatever comes your way.

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  6. I will forever be grateful for you making me an aunt. Sweet baby love on the way. This baby will be a blessing in so many ways.

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  7. I have a friend who grew up with a brother who has downs, who is very into awareness and education about that condition. If you want I can get resources from him. If you don’t want that, that’s fine too. My heart goes out to you either way and whatever you do will be the right thing to do.

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