Wednesday, January 20, 2010

Five Months

Dear Lydia,

Five months, baby girl. This might have been the hardest month so far. But, as it always seems to happen, the things that are the hardest are also the best. I find that about loving you too - it’s the hardest but the best and easiest thing I’ve ever done. To love you every moment is so easy. It gets hard every day when I realize that my love can’t make you better or even, at times, comfort you.

It’s amazing how despite increasing struggle, we still see more glimpses of your personality. When you haven’t had any seizures for a while, like when I first get you out of bed, you are so alert. I lay you on your side across my chest so you can look up at me and we play. I tickle your belly or blow raspberries on your cheeks and you make your happy face. I think you even try to laugh. Maybe not, but I’m going to say that you do.

You recognize our voices and turn to look for us when we walk into a room and start talking to you. Just yesterday you were in your papa’s arms and he had you in a position where you couldn’t see him. When he would talk, you would roll back your head to look at him. We’re so thankful for this. In one of the first meetings we had with doctors before you were diagnosed they told us that it was likely you would never recognize us. But you do! And every time you do, it’s a celebration.

It’s been such an incredible journey getting to know you, little girl. I’m so thankful that I’ve gotten to understand you and your spirit and personality. When you were still in the hospital and all I really knew about you was what you looked like, it was so hard to think about losing you when I hardly knew you. I know you now. Inside and out. And yes, if Jesus chooses not to heal you, it will make losing you that much harder. But I would never trade knowing what each expression of your face means or what each little sound you make indicates for a little less sorrow. Knowing and loving you, sweet girl, is one of the greatest gifts God has ever given me.

I don’t know what the next month holds for you. Most of the stories we read tell us that six months is when a lot of babies like you go to to be with Jesus. But you, my little bug, are a fighter. You’ve defied all we thought you would ever do. So no matter what happens, your mama and papa are so proud of you. And every, every minute we love you and thank God for your life.

Happy Birthday, Baby.


Birthday cupcake from your papa!

Your friend Kathy brought you this beautiful yellow flower for your birthday!


  1. Beautiful, Jen. Thank you so much for letting us into your world like this.

  2. You are such a loving family! We love you so much.

  3. Happy 5 Months baby girl! holding you all in our hearts:)

  4. What a sweet little girl. I, too, had a daughter with ZS. You can read more about her here (if you're interested):

    Feel free to contact me if you need anything.

    Christina Leonhardt
    ZBSN Treasurer and mother to Makenzie Ranae (12/21/04--7/13/05)

  5. Awwwwww. How much cuter can she get? I am praying for you always.

    Love, Jessica Sullivan♥