This has to qualify for the most depressing Amazon Prime delivery of all time.

image.jpeg Those that know me know that I am not a procrastinator, I am type A, and I like to have plans made and be prepared for whatever contingency might happen. As a result, I’ve been trying to think of ways to prepare my children (especially my soon to be 5 year old) for the possibility of their little brother’s death.

It may look like I am giving up on our son and that I think his death is imminent, but that is not the case. I am simply looking into the future and trying to envision all possible scenarios. Somehow it feels like preparing for grief will somehow make the grief more manageable – even though I know in my heart that this grief will rise up and shatter me – in the next few weeks to (if we are very, very lucky) the next few years.

Stillbirth is still a very real possibility. I am hopeful because the specialist is hopeful, but I am also realistic. I have read too many stories of early labor, prematurity, lost babies.

Today was my first day back at work since the diagnosis 6 days ago. A week ago today, I was sleeping the day away because I couldn’t face what I knew the next day must bring. I think work was helpful. I had to (mostly) focus on work and pay attention to my patients. I did Google T18 and some related topics during lulls, I won’t lie, and I did check my FB Trisomy groups for updates on other mothers and their babies, but overall, I was able to focus on my job.

I received some hugs and some heartfelt expressions of sympathy and condolences from colleagues and coworkers, and while it was awkward for me (I don’t know what to say or how to act), it was nice to know that people weren’t afraid to talk to me and to say something. The day passed similarly to many other days at work.

I alternate between periods of absolute grief and uncontrollable crying, total numbness, and disbelief. Right now, I am numb. Tomorrow will bring new emotions, new thoughts, new fears and anxieties.

Many people have asked what they can do to help us. I would ask that you don’t forget us. Don’t forget that we are grieving and waiting and hoping. Check in on us just to say hi and to let us know that you are thinking about us. It’s tremendously helpful and reassuring to know that we are loved and thought about and supported. It is good to know that we are not alone in this journey and that other people think about and worry about our son.


2 thoughts on “Preparations

  1. I have been following your daily posts and admire your strength. I may be far in distance but you guys have been in my thoughts day in and day out.


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