Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.


He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1


Saturday, June 26, 2010

We are a family of four

Some days (okay...most days) my heart is consumed with guilt and grief.
I feel guilty for taking the little bit of time I had with my baby in my womb for granted. I feel guilty for compaining about really stupid stuff. I complained about not being able to drink coffee or iced tea, and now that I can, I don't want to. I would give anything to have my baby and do away with caffeiene forever. I complained about not being able to help lift boxes during our move and not being able to paint. As it turns out, I couldn't lift boxes anyway because I had delievered our baby just five days before we moved. I can paint now, and of course, I don't even want to. I complained about not being able to wear my cute summer clothes, but I would gladly trade my wardrobe for the ugliest maternity clothes available if it meant having my daughter in my arms.
I feel out of balance. My role is to protect, nurture, and take care of my children. I have to take care of my son, and provide for him. He needs me. He helps me through each day without even knowing it. It is devastating to me that I can't take care of Lily. I was unable to protect or help her. She was sick, and I couldn't do anything about it.
My mind is full of questions. Not what you may think...I'm not wondering why me or why us or why did this happen. I'm wondering what my baby is experiencing right now in heaven. What is she seeing, smelling, hearing, tasting, feeling? What will happen when I join her? I was able to spend hours holding her and looking at her in the hospital, but will I recognize her? I already feel like I can't picture her precious face exactly as it was that day. Those hours spent with my baby weren't enough. She never opened her eyes to see me. Will she recognize me? Will she know that I am her mother? Does she know how much I love her?
I like to think that she is receiving lots of hugs and kisses, and that she is not limited by any developmental delays. I like to think that she is able to run and play as much as she wants. I like to think that she has every opportunity to sit in Jesus' lap or to be held in His arms. I hope that when I get to heaven, I will be reunited with her immediately and that I will feel whole again. I want to hold her, kiss her, sing to her, and dance with her in my arms. I will thank Jesus for loving her and for taking such good care of her, better than I ever could.
I used to have reservations, maybe even a slight fear, of dying and what I would experience in that moment. I am no longer afraid. I am confident that when that time comes for me, I will embrace it fully knowing that I will see my baby girl again.
I have been forced to move on, to keep going. The move had to happen, but I would have preferred to go into hibernation and stay curled up in my cozy bed in the home that I felt comfortable in. That home was the home for our family of three. Our new home was intended for our family of four. Although we lost our little girl, Duran says that we are still a family of four. I love him even more for saying that and really meaning it. He is right. Lily will always be a part of our family. She is still our daughter.

1 comment:

  1. I agree with everything you wrote... all so true! You are not alone in those thoughts.

    ReplyDelete