Monday, February 22, 2010

Living with (Lily) Grace

Last week, I was overwhelmed with worry over Lily.

Because she doesn't sleep well at night and because one night she slept for one hour before finally falling asleep at 6 in the morning, I called Lily's doctor and told him that Dave and I were at our wit's end. He asked me how long I've let her cry. Not long. I usually hold her and pat her back. He asked how long Dave has let her cry. Maybe an hour. Maybe a little more. He said we're just going to have to let her cry. Put her down and let her cry for an hour. After an hour has passed, pick her up and comfort her, but put her back down. If you have to let her cry for another hour, do it. Needless to say, it's not that easy when you feed a child every 3 hours, especially in the middle of the night.

Dave and I moved to the computer room and have been uncomfortably sleeping on the futon for three weeks or so. And Lily has been crying. There were a few times when I went into the bedroom, and she was lodged in the corner of the crib. She just moves around so much! But it scares me. I'm always afraid of what I'm going to find. One night, I awoke at 3 (a usual feeding time for the week) to find that she wasn't crying. It worried me so much, I got out of bed and went to check on her. All was well.

I know it sounds horrible that we're letting her cry, but we hope that one of these days she'll catch on that she's supposed to sleep at night. Plus, we are in desperate need of sleep!

I have to say that Lily is doing a little better. It's just that she wants to stay up from about 11:00 to about 2:00. Once she falls asleep at that late hour, she does sleep pretty well. Maybe it's working.

But I've digressed. Like I said, I just worried so much about her. I came across this quote that Sydney Grace's mom found on another blog.

.......To live with the conscious knowledge of the shadow of uncertainty, with the knowledge that disaster or tragedy could strike at any time; to be afraid and to know and acknowledge your fear, and still to live creatively and with unstinting love: that is to live with Grace. Peter Henry Abrahams

I live with that fear every day of my life. I am afraid of the uncertainty. When is Lily's tragedy going to strike? But like all of the other moms out there who live with that fear, the sum of my fears are nowhere near equal to the depth of my love for this little girl. I'm not patting myself on the back here. It seems human nature to me. But for sure, that is to live with (Lily) Grace.


Lily had to go to the doctor today. It seems she got Gabriel's cold and I heard a little wheezing. She's on some antibiotics for her ears that might be infected (The doctor can't see down her ear canal because it's so small. Lily's constantly pulling on her ears, and luckily, she did it when she was at the doctor, so he put her on some medicine, thinking that it won't hurt just in case she does have an ear infection, but also hoping that it will stop what this cold could become.) She has a wet cough and just not acting like she feels very good. Poor little girl.


  1. My heart goes out to you. It is very common for tri children to not sleep very well. Many parents use melatonin and it has been very beneficial.

    Maybe you could ask the moms on the trimed list serve or the trisomy 18 mommies on facebook.

    Bless you all.

  2. Oh man. I wish I could take a night shift for you. Maybe this is Gods way of keeping her lungs strong? I hope that you are getting some rest while she is learning to sleep. I will keep praying for her to learn this new task quickly. I really wish there was an easier way.


  3. It took us 1 year before we figured out that Vera's crankiness at bedtime wasn't colic or moodiness, but was due to the fact that she couldn't breathe very well. The airway flaps relax when the baby gets tired and about to sleep and makes breathing more difficult. Esp with a cold and some wheezing, even more blocked airway.

    Perhaps a visit to the respiratory doc might help? There's stuff to make her more comfortable. Some moms give a puff that opens up the airway and they sleep well. Do check with your doc.

    I know how tough it is. If Lily doesn't sleep well, noone else will!

  4. Being a parent is such a challenge! Having a beautiful child with special and unique needs and as you said in the quote adds to the stress! You are a wonderful parent and always have been and will be! Don't feel guilty or apologize about letting Lily cry if she's safe; you can't be your best and a caring mommy without some sleep!! Hoping she's feeling better soon and sleeping comfortablly so you can also sleep! Take Care! Cindy

  5. You are all in my thoughts in prayers. Being a parent is the hardest job there is in "normal" circumstances. I can only imagine the fear you experience on a daily basis and the absolute feeling of exhaustion. I ask that God looks down upon you all and protects and guides you with his love.

  6. That has been, in my own experience, the hardest thing for a parent to have to do. Some kids just come to you with a good wake/sleep pattern, and others don't. I know that allowing a child to cry and learn to self-soothe and to go to sleep on a routine is so hard when you're first making that change; but you already know that you have tried other ways to help her learn to put herself to sleep, and they haven't worked. I'm glad it seems like it's helping. I hope if that isn't the secret, then you will find something else to help. I like that your doctor understood, too. There's enough pressure on you already, without getting sleep.

  7. I think what you're doing is wise and loving, not cruel. I'll be praying she will "get it" soon, and you and Dave will be greatly encouraged and RESTED. I will also pray God's perfect love will cast out FEAR, so you'll not be robbed of joy!

  8. Her time may be cut short, don't miss out on the opportunity to cuddle and comfort her when she is upset, you might be upset with yourself later. Just a thought, I know you are trying the best you can, none of it is easy. I just fear one day you will wake up in the night to her not crying because she is gone and those tender moments together will be lost.