I have sat down to write an update several times and each time I have had to abandon my mission for some pressing matter or another. Well, today I am determined to get something up on this blog!
Aerin is just a few days shy of her 7 month birthday and we have come so far. I think back to those dark days in the NICU where we didn't know what was wrong and we prayed fervently that it not be something that would take her from us (at the time, she was being tested for Spinal Muscular Atrophy which is a devastating condition where children seldom live past the age of 2). And then we got her diagnosis of Prader Willi Syndrome and while we rejoiced that it was not something degenerative, it certainly came with a degree of grief and loss.
And it occurs to me now that the Lord had been preparing us for this. Prior to having Aerin, I suffered a very difficult time of post-partum depression with the birth of my son and then two miscarriages. All three instances were valleys that He led me through where I learned to lean into Him when the pain was great and the darkness so dense that I feared I would never again see light. He knew what was coming and that it would be the hardest, deepest valley of all and that I needed to be ready for it.
After the second miscarriage, I came across the book One Thousand Gifts by Ann Voskamp. It is a beautifully written book about learning how to cultivate a spirit of gratitude in all the seasons of life. It taught me that being thankful is a spiritual discipline in which I choose daily to draw closer to the Lord by seeing His hand in all things. Even in pain, in heartache, in loss, in grief, in despair and in bleakness, He is there. And He is King over all of it so that I don't have to be. I knew, after those first days where all I could see was what we had lost, that I still had the choice to be grateful for, and in the midst of, PWS.
It started off by choosing to be thankful that, while our life with Aerin would look radically different from anything we had imagined, she would be with us. She would grow (at her own pace) and we would be able to watch her blossom like we have done with our other children. Then it was choosing to be thankful for each milestone reached—each bottle completed without the feeding tube, each swat of an otherwise lifeless hand, each hard-fought smile was a joy to be counted as gain. Then it was choosing to be thankful for our family and our friends who all have stepped up to love Aerin, and us, and to be the hands and feet of Jesus to a family very much in need.
From there the list of reasons to be thankful in the face of this rare genetic disorder just multiplied.
Augie and I celebrated our 11th wedding anniversary on October 6th. We had a brief moment to sit down and really look at each other. And I saw my best friend, my husband and the father of my children in a whole new light. He didn't choose this (none of us did) but he has not backed down from it for an instant. He has become my hero in every sense of the word. And that's when I realized that, in sending us Aerin, God has truly saved us.
We have always struggled with finding the Lord's purpose for our lives, for our marriage and for our family. We are too easily distracted by the world and would often find ourselves veering down every possible byway imaginable. But then He put Aerin right in the middle of our lives and said, “Here is this gift that will always remind you to look towards Me, to live in Me, to trust in Me, to glorify Me, and to love Me above all things. She is precious and unique and she will force you into a life of disciplined love and trust that will make you infinitely more like Christ. She will make you better lovers, better friends, better parents, better human beings. She will make you stronger, braver, more hopeful, more faith-filled and more loving. I and my Son will use her to bring Us glory by growing your hearts and breaking you out of the prison of selfishness that you were trapped in. She, and her genetic deletion, are our gift to you. It will not always be easy but, in the end, it will definitely be worth it.”
And so here we are. Our gift is alive and well and growing. And we are, we are, so very thankful.
Thanks be to God for His indescribable gift!
2 Corinthians 9:15 (NKJV)