Why we are not being awarded the title of Wait Experts

At what point do you become considered a WAIT EXPERT.  Am I alone in this feeling of sometimes it seems that I am simply lurking from one season of waiting to another? Dwelling in various periods of intermissions and waits and never fully entering the season of experiencing the expected. When you spend so many seasons in waiting, do you become an expert? Are there certificates? Perhaps a title and a name tag? Could we teach a webinar and make all the monies on social media?

The wait during Infertility can often feel more like a no than a delay (and sometimes it is a no). Or it can feel lonely. Waits create an anxious atmosphere where you begin stressing about things that might not even happen. You reside in this pause, this space of expectation, not sure if there will be an encounter with the expectation or simply disappointment. An interval between then and then, stuck in the now, without knowing what now is really all about. Waiting usually implies a delay or pause for a limited time for a definite purpose. But what if the purpose is blurry or the outcome gleam? If waiting is time of preparation or anticipating, what do you do when you do not know how to prepare or what to anticipate?

For us, we have lingered in several pauses. Spending days, weeks, and well, regarding infertility, 7 years waiting. Waiting each month during those 2 weeks. Waiting for test results. Courses with unknown time lines and unknown outcomes. 

In the adoption there is the waiting to hear back from USCIS from immigration clearance, for home studies to be written by busy social workers, for the Ukraine to approve our dossier, waiting to come home with our son after spending 6 weeks overseas. Waiting for court, bureaucracy, cps, foster care licenses, etc. 

Then you have pregnancy; waiting to meet our unborn child, anxiously for the first ultrasound, to find out we were only waiting for the inevitable miscarriage, for healing, for relief from the grief, for hope.

For each person, the wait is unique. And each person has a pause the are enduring.

 Gaps, lulls, pauses, intermissions can leave us a little flustered with how to wait purposefully and patiently. I wake up in the middle of the night from normal boring pregnancy-induced leg cramps and cannot go back to sleep as my mind starts racing. What is it all going to look like? How is it going to all work out? What if this pregnancy is the only time we have with her and I spent so much of it sick and complaining? 

Shortly after posting our latest announcement, we received a call from our genetics counselor regarding our pending blood work. Niyah was squealing and dancing at the splash pad and I had reached for my phone to snap a picture of Carter bravely swimming in the big pool with his BB (his name for grandma) only to see a hospital number pop onto the screen

"Is now an ok time for us to talk for a bit?" 

"Sure, what did you find out?" I can hear in her voice she has something heavy heading my way.

"Well...." deep sigh, "we found out why your results from the first test were so weird"

"hmmm ok" I take a deep breath and prepare for impact.

"We found mosaic trisomy 13 in the fetal DNA".

"Trisomy 13?!" I watch as Niyah reaches her hand into a stream of water. The water splashes back in her face and she squeals with delight.

"Yes, but not in all of the cells; only in some which is why it is mosaic.  With your background, you are probably immediately thinking about full trisomy 13 and I want you to remember that this case is most likely mosaic. The outcome of severity varies greatly.  It also could just be in your placenta, you know, like with confined placental mosaicism." 

"I actually don't know. I have never heard of that."

"It is possible it did not transfer to the fetus. It is possible only your placenta cells that have the trisomy 13."

"What would that mean exactly? What would be the health outcomes/viability and plan of care?" I respond matter-of-fact-ly, the switch flipped and I am in medical mode.

"In confined placenta mosaicism," she explains further,” you may have placenta insufficiency at some point, there are several studies showing low birth weight and prenatal complications. We can watch closely to make sure we see if the baby stops growing or progressing. We will work closely with your team."

"Do we need to make a birth plan? Should I call hospice? What's next?"  My mind is started to swirl. Trisomy 13 is not unfamiliar to me and I am thinking back on all the cases I have seen in my work. My mom waves from the pool motioning to get a picture of her and Carter. He is kicking in the water like a swimming-champ. My finger circles above my head for a wrap it up sign and she sees my face and knowingly nods.

The geneticist continues, "We will find out more with each ultrasound. Without knowing the percentage of cells the fetus has with the trisomy, it is difficult to know the severity of the possible health prognosis. We will look for club feet, extra digits, intestinal issues, heart defects and brain size all at the next ultrasound. For now, without further testing, we must wait. However, DO YOU WANT TO KNOW THE GENDER?"

"Yes, yes I do!"

"A GIRL!" and with that she politely ended the call with her personal email/cell to contact her if I thought of more questions later or my husband had questions. We confirmed the date and time of our next to ultrasounds and appointments and said goodbye. 

And thus, began a new wait. The weight of this pause is the heaviest I have carried yet. Trying to stay off google and forums. Trying to not worry because we are not sure what to worry about yet. The outcomes are vast. Not sure what to pray for and not sure exactly how to respond. Wanting to try and enjoy this time together.  Wanting to share in the joy of this pregnancy. Wanting to announce the gender without having to follow up with genetic conversations. Each congrats from friends and family, I find myself wondering how to respond. 

Waiting to meet our little girl, but also knowing she is here now.

Introducing and loving our Audie Joy.

Choosing to find joy in the pregnancy each day. Finding joy in the interlude. Trusting in the joy she brings now and later.  We can dillydally in the wait for tomorrow or we can live in the now of today. Dawdling about in murky waters of "then" and "then"; or kick our way over like swim-champs to now and experience the present. Maybe this is not a time of waiting for us after all, not a time for preparation or anticipation. Maybe this is the 'then" to claim, the moments to cherish and experience now. 

Today we choose joy. We claim the now and push past the wait. 

We choose Audie Joy.