I had it in my mind to write up this great post on how Thanksgiving came and served to reinforce the sense of gratitude that has bloomed (sometimes through disciplined care) in the face of this hardship. But it just didn't happen that way.
I remember the first night after receiving Aerin's diagnosis; I rocked with her in the NICU, heavy with grief. The grief came in great waves that night, rolling over me with each new realization of what having PWS meant for her and for me and for my marriage and for my family. It may seem silly, but one of the things I grieved was the holidays. There is a palpable pleasure from gathering with loved ones over a good meal, enjoying it together and lingering over it, long past feeling full. Now, those treasured days feel like enemies and the loss is profound.
I find that most days, I can keep the fears and grief regarding “The Hunger” at bay. With the Lord's help, I try to keep my eyes on Him and what He has called me to for just that day. But yesterday, I was drowning in sorrow, fear and desperation. Thanksgiving has always been my favorite holiday but yesterday it mocked me with its resplendent meal and the haunting shadows of things to come.
It just hurt so much.
So, I wake up to Black Friday—which has taken on a new meaning altogether for me as well—and I start another day of disciplined thankfulness because today, it just doesn't come naturally. My flesh cries out to be bitter and heartbroken today. But, ever so gently, the Lord shows me that I still have so much to be thankful for. There is much more in my life (and in Aerin's) that is whole than is broken. And our future is still one of hope. We hope for better treatments, we hope that the severity of PWS in Aerin's life is minimalized, and we hope for a cure. But what I cling to most is NOT hope. It is the assurance that, one day, the raging hunger that lives inside all of us—the hunger for something, or anything, to fill this giant tear in the fabric of our hearts—will be healed. Not on this side of heaven, but somewhere on the other side of the veil, He alone will satisfy that hunger and heal all of us for all time.
“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So, we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary but what is unseen is eternal.” 2 Corinthians 4:16-18
Aerin was a little under the weather yesterday, so I didn't get many good "First Thanksgiving" pictures. But I did get a precious one of her with her wonderful big sister!