“Take delight in the Lord, and He will give you the desires of your heart” – Psalm 37:4
Eliza’s transfer to the NICU was crushing…as was her diagnosis with PWS. It felt impossible to give thanks…to delight in the Lord or in this amazing, beautiful baby He had given me to love. The grief and fear cast a shadow over the joy, but the feeling that bothered me more than any other was the jealousy…the intense, consuming jealousy that raged through me every time I was confronted by the bassinets of healthy, “normal” babies and their proud, exhausted parents. Since the NICU was housed directly behind the Well Baby Nursery, this exchange happened multiple times every single day. To be honest, I wasn’t happy for them…I was too hurt and confused that my own perfect journey had been so completely derailed. And then, of course, there was the guilt that accompanied all these feelings.
For a while, I wondered whether I would ever again feel truly free from it. Days would pass, but the sting of envy followed me through that door and past the dads witnessing their baby’s first bath or the nurses settling newborns in for their carseat checks. Nights were hard too, but they were different…I was alone with my baby and alone with my thoughts, often turning to prayer and song to bring me through my 45 minutes of nursing without falling asleep or falling apart. And it was in just such a moment when a simple reminder soothed my jealous heart and started me on a long (and sometimes uphill) journey towards gratitude. I heard the still, small voice of God speak to me with a message so clear that I could not help but listen. What have you prayed for? The deepest desire of your heart is not lost…in fact, it is closer than ever before!
When I was pregnant with Amelia and again with Eliza, my prayer was always this: that my girls would grow to love God, and that their love would spill out into love and service for others. Of course I wanted a healthy, happy baby, but my prayers were always central around that one deepest desire and really nothing else. I’m not saying that I wish for hardship…I don’t. But I don’t regret not praying for their chromosomes either. And I am encouraged by all my favorite people throughout history…people who persevered through hard circumstances and came out stronger in their faith and love because of it. Their stories fill the Bible, and they are the ones whose testimony moves me the most. Their lives gave them a voice, but their hardships gave them a microphone.
I don’t know what Eliza’s life will say yet, but I just know it’s going to be good, and I’m thankful that she will have a microphone so that her life and love can be louder and go farther. That was my prayer before her birth and the one God reminded me of in the NICU. And it was my prayer as we dedicated her to the Lord again just weeks ago at her baptism, surrounded by a congregation of family, friends, and the incredibly special group of women from her NICU days. Gratitude overload!
“See what great love God has for us that we can be called children of God.” The same words are spoken after each baptism…just before the minister walks up and down the aisle with the curious baby to greet the congregation, and they move me to tears every time. I think that’s because they are so simple and so true. A parent’s love is tender, adoring, forgiving, and unconditional. And it is fierce! To think that such love is shared and even surpassed by God’s love blows me away, but I want my girls to know it…to know how wide and long and high and deep it is, and to let it fill them up until it can’t help but overflow into their lives and the way they treat others. PWS doesn’t change that, and it certainly doesn’t take it away. In fact, it has brought with it more blessings than challenges because it has forced me to let go and trust…to sit with uncertainty and meet it with gratitude. Gratitude and a continual prayer for the forever-unchanging desire of my heart.