The pause button

It feels like somebody hit the pause button at our house. Lila's surgery was 6 days ago and, of course, there hasn't been any progress made toward walking or any of the other things I'm normally concerned about. I would imagine she's probably taken a few steps back in some areas. She's still in so much pain and now has a horrible cold on top of everything else. Poor little thing, I feel so bad for her. To think about the fact that we knowingly and willingly have put her through this is bugging me a little bit. Everyone keeps telling me that this will be worth it in the long run. I'm holding on to that, hoping and praying that everyone is right. This too shall pass.

Before Lila's surgery a friend of mine posted on Facebook about a 3 year old little girl that died during routine dental surgery. Her father is in the military and was on his way back to Afghanistan- he had been home for his mother's funeral. The little girl's mother had to go and pick her other kids up from school and tell them that their baby sister was dead. What grief. What agony. The utter helplessness she must have felt (and still feels) weighed so heavy on my heart as I read the story. My friend's husband was tasked with locating the father of the little girl and re-routing him to his home. Once again, coming home for the funeral of someone so dear to his heart. I know I've said this before but since Lila's birth I am just so raw. As I read the story of this poor little girl whose heart just gave out during a routine dental surgery I just cried and cried.

I read that story 3 days before Lila's surgery. It seems so selfish but I couldn't help thinking, "What if that happens to Lila?" The day before Lila's surgery I took her to the pediatrician for her pre-op appointment. We ended up seeing the nurse practitioner. As she took Lila's pulse and then listened to Lila's heart she got a puzzled look on her face "I hear just the slightest heart murmur. Didn't you have her PDA coiled?" I shook my head yes. Inside I'm thinking of that little girl. She listened again. This time she said it wasn't there. "Maybe I just thought I heard it. Sorry about that. I'm not hearing it now. Maybe it was just when she was taking a breath." Hmmmm.......

The day of the surgery I was a nervous wreck. It's true, I just kept thinking of that little girl. Of course I'm the one that filled out the pre-op paperwork where they list pretty much everything that could go wrong during the surgery. A person in my frame of mind might have thought to ask her husband to sign that paperwork but I guess it never occurred to me. We were both allowed to go back with Lila to change her clothes and check her vitals but only one of us was allowed to walk her back into the procedure room and stay until she was asleep. My husband asked if I'd like to go back with her and I said yes. I laid her down on the table and sang to her until she was sleeping. I kissed her goodbye and almost lost it. I walked down the hallway, fighting back tears. I was so lost in thought that I almost walked into the door. I realized that it was one of those doors that had to be activated a few feet back so I turned around to press the button and almost knocked over the nurse that was with me. Wait..... there was a nurse with me? Guess I didn't realize that. I reached out for her, she reached out for me and we both started laughing. "Sorry", I said, "I didn't know you were behind me." "I know", she said, "You were having a mommy moment." Indeed I was.

We are one of the fortunate families. Where the doctor comes out into the waiting room and says, "She did great. Everything went according to plan." Some people don't get that. Yes, the pause button has been pressed. Lila's not moving forward developmentally at this time. But she's still here. And I'm thankful. I pray every night for the family of "that little girl" because I never knew her name. Their angel is gone forever and that breaks my heart for them.




  1. Oh God. Now I feel raw too. How sad for the family - can't even imagine.

  2. What a sad post. I can't imagine the pain that family is feeling. I've heard from our OT that kids sometimes take a pause in one area of their development because they're working on another. While John Michael's gross motor skills are in full swing, his speech has gone back a few steps and we're not hearing certain syllables or consonants from him that he used to make. Maybe Lila's gearing up for something really big and she's not letting on. :-)

  3. Raw is a good way to put it. I think it's compassion. I have never felt compassion and empathy for another human until I had Eva, like I do now. I cry actual tears when my heart breaks for someone else. I can put my self in their shoes, and actually feel their pain. It's good for you. It's good for them. I think people know when your emotion is genuine.
    Don't feel ashamed about it, it is one of Gods greatest gifts he gives us,

  4. There is no such thing as "routine surgery" when it comes to our kids. My daughter has had so many surgeries ranging from removal of tonsills and adenoids to brain surgery and there isn't a single time I don't cry when they wheel her away.

    We have had several very close calls but she's always pulled through. You just have to trust yourself and know that you will always make the best decision you possibly can when it comes to Lila's health care. Thank you for sharing such an emotional time.

  5. Whew. It's been a while since I cried reading your posts but you are back to your usual. I'm crying again. Every time anyone has surgery there's a chance... thought of it when Jerry had surgery. But then I remember if it's their time it doesn't matter it they have surgery or not, they will go. But oh my, that little girl. I know she's fine now but that family. What a horrible, heart breaking time to go through. I'm thankful Lila gets to stay with us still.

  6. This is a test. I've gotten 4 e-mails that people can't post comments on my blog now. Wonder what's up?

  7. I'm sitting here bawling my eyes out. Blame it on the pregnancy. I worry about this everytime I think of Goldie needing eye surgery. I did it when my middle dd had dental surgery. She was 2. The anesthesiologist (sp?) actually looked at me as said "you know, she could die." I lost it. (((hugs)))

  8. Oh, okay, now I am able to post a comment. That was weird. Well, I've already sent my comment to you via e-mail. :-) Hugs to Miss Lila!

  9. I hope Lila is turning the corner, and that you are all able to rest a little more easily.

    This has been a tough stretch for you & Lila, but you are on the upswing now :).

    Hugs to both of you!