entering the valley of the shadow

As we've written recently, God heard our prayers...we feel privileged to have celebrated Christmas and New Year's with sweet baby David. But with those festive holidays in the rear view mirror, the last week has taken on a more sober feel. I know that each day brings us closer to the most bittersweet event that I know I will have ever known...the day my son will be born both on earth and in heaven.

Fifty-five hours, stillborn, 17 hours, 36 minutes, 9 minutes...these are the amounts of time that just a few of the many babies have lived following their births, as documented on the livingwithtrisomy13.org website. And not all of them have heart defects as serious as David's.

My doctor tells me that statistically, the odds are that David will be stillborn. As he grows in utero, the demands placed on his heart will be greater, causing decreased activity and ultimately, heart failure. So with increasing anxiety, I count kicks in between periods of David's normal resting time. Some days he is more active than others. On the really active days, my anxiety is decreased. On days when he isn't as active, I feel like I live from kick to kick. It does seem that for quite some time he has had a pattern of several active days followed by several less active days. But as we enter what feels like a long, dark tunnel where the days ahead and how they will play out feel so uncertain, I feel more stressed on those less active days. The important thing, according to the doctor, is to keep monitoring heart rate, which we do every two weeks. So far, his heart rate is still normal; heart decline will take place over a period of several days, the doctor said.

It is overwhelming, to say the least, to live a normal, day-to-day life counting kicks because you know that their absence could mean your child has died. Nothing prepares you in this life for the death of your child. We are struggling to find the balance between continuing normal life and carving out pockets of quiet where we can fully experience our anticipatory grief. These are the days we wish we had family around. There is nothing like family.

To be honest, it is hard to be in a crowd of people. There are days when I wish I could just be anonymous--invisible. Grief is emotionally and physically depleting. Nothing on this earth will soften the pain or anticipated loss. I recognize people just want to help. But some days, a hug is the most helpful thing. There are days when I truly have no words. On those days, I have only the strength to walk through the day. Prayers and hugs are always wonderfully welcome. It's just natural to want to make sense of it all for us; please don't feel the burden to do this. This is just the journey we have to walk. It's OK not to have easy answers. That's what God's comfort and His Word are for.

Some people, maybe without thinking, have implied that later in the year, once this is all "behind us" somehow we can move on. Nothing can be further from the truth. Once David is gone, there will be an irreparable hole in our family. No one can replace David. We are forever changed by his presence and life. When does one start loving his or her child? Is it after a few birthdays have passed? When he reaches kindergarten? No. You love your child from the moment you know he exists. And you love that child simply because he is. If you're blessed with a healthy baby or child, you simply keep on loving that child indefinitely through the months and years ahead, as you did from the moment you found out you were a parent. Not because he is healthy; not because he has done anything. Not because years and mile-markers have passed. And when that child dies an untimely death, he doesn't somehow disappear from our hearts and memories. Our love doesn't stop. If anything, an unfillable hole exists, that others cannot see unless they have experienced such loss.

As I watch my friend grieve the loss of her son to the same genetic disorder, my heart has broken knowing that the recent holidays were all the "firsts" without their precious son. They may look like they are fine; but they are missing someone very special that the world no longer can see, but they can't forget. Their baby should be there for all the special holidays and moments to share with them. I know what lies ahead for us in watching them on their journey.  The only way to take it will be to walk through the valley of the shadow of death; there is no shortcut.

I have thought a lot about the "Garden of Gethsemene" moment for Jesus, just prior to His betrayal and arrest. He said, "I am overwhelmed with sorrow to the point of death." I identify with those words. That is how I've felt this week. However, I know because He walked that road of suffering and died for me, that I have a comfort and a hope available that would not be possible otherwise. Thank you, Jesus, for walking through death itself. We only have to walk through the shadow of death. And at the other side, there is life ahead.