Friday, April 27, 2012

The storm before the storm

It's been a while since my last post, and I think perhaps an explanation is in order. In the weeks after Aiden's diagnosis, there was a truly blinding flurry of activity. We met with doctors, talked to specialists, read articles, shed tears, and watched in awe as a massive global prayer network rose up to support us. It was dizzying how fast everything moved in those first few weeks, and by the time I posted the video of the bear, I was perhaps as emotionally exhausted as I ever have been in my life.

Then a remarkable thing happened. We ran out of things to panic about for a while. Somehow we had reached a surreal plateau where we were past the initial shock of the news, but not yet close to the delivery day. It was a welcome lull in the middle of an otherwise frenzied time. Cori and I took advantage of the ability to pretend, if only for a moment, that we were expecting a normal healthy baby. There were still plenty of hard days and plenty of tearful prayers, but for the most part we allowed ourselves to just be still and calm.

The calm came to a decidedly abrupt end today. This morning we dropped off our kids at a family member's house and headed to the hospital for a full four hours of meetings with doctors, nursing staff, geneticists, counselors, family advocates, therapists, the works. We talked about our "plan", going through pages of possible scenarios we might face and specifying the way we would want each to be handled. We had to speak the phrases "if he doesn't respond to resuscitation" and "last few moments of life" several times. The roller coaster has fired back up, and it's shaping up to be a heck of ride this time.

You may remember me mentioning that our due date is in late June. We've known for some time that Trisomy 18 children often arrive early, but it's now clear that Aiden is probably going to be a May baby in two senses of the word (See, it's funny because our last name is May, and our son is probably going to be born in the month of... oh never mind). Anyway, we're actively prepping for landing at this point, and any sense of calm we may have enjoyed in the last few weeks is very much gone. Cori has a zero-second-notice hospital bag packed, we've established contingency plans for our two-year-old and four-year-old, and we've set up the family phone chain that will go live when we head for the hospital.

The calm before the storm before the storm is over. We've moved into the storm before the storm. As always, your prayers are greatly appreciated.


  1. We are praying as faithfully as ever! Love you... Mom

  2. I'm a complete stranger to you, but know your father, Bernie, as I work at State Farm in Newark. I've been following your journey and marvel at your strength. I know you are aware of the multitude of prayers for your entire family, even from those you have never met. My prayers will continue for all of you, not from me as a "Farmer", but from me as a mom. Love and Light...

  3. My family is also mostly unknown to you although our families' paths crossed a long time ago. I came across one of your early posts by chance and we have been praying for your family ever since. We know God will take care of all of you and know that God knows what's best...even though we still go through rough times. We will continue to pray.

  4. I am amazed at how gracefully you have been handling this pressure. Every time I get a funny email from you I think "How can he be funny right now?". When the truth is you just have to keep going everyday no matter what. Very impressive and my thoughts are with you.--Susan Saunders