Friday, May 4, 2012


Ella can make me smile and laugh and cry tears of joy and sadness all at the same time. I have been reading up on where Ella should be developmentally according to her age, I like to do that since she doesn't have normal pediatrician visits. I want to make sure I'm teaching her what she needs to learn. Usually she is right on schedule and even occasionally advanced. This time she was advanced in speech and a few other things that have to do with how much she knows, but physically she is a bit "behind". For instance it says she should be able to undress and dress by herself, eat with a spoon and fork, go up and down stairs alone, run. While she can go upstairs with help, going down seems to scare her. She can eat with a fork with help, but a spoon is just to messy since she is still eating thin baby food. I guess that brings up the question "why is she still eating thin baby food?" Well Ella still deals with a slight oral aversion and while she can eat several solids, she can not eat enough for it to be her main nutrition. Right now gaining weight for her next surgery is important, so we will continue giving her whatever she needs to pack on the pounds! I'm not going to worry about it, just going to keep doing the best I can to help her learn and grow as she develops new skills. Ella and I are getting more used to the medical alert bracelet. In fact she has asked to put it on several times and she has had it on for just about 24 hours straight as I type! She has been adjusting way faster then I thought she would. I see it and I have caught myself with a tendency to kinda look away or feel sadness and I choose to look and smile because she is my miracle... a bracelet does not define her. I guess most of you would think her scars would be harder to see, sometimes they are. One scar in particular makes me tear up nearly every time I see it. It's not the big one down the chest or the little ones all over her belly from drain tubes, it's not the ones in her groin area, it is the little line on her wrist. It was cut open with a scalpel for a necessary access. They couldn't get the line in and had to cut her, for some reason that scar makes me ache. I can't really explain it. I guess I don't have to. I was sitting the other day thinking about some of the other dear sweet heart babies that are struggling, and all the sudden I remembered the time that I set holding my severely sick baby when she was less then two weeks old (I don't remember the exact day it was, when you are in the hospital 24/7 for nearly 30 days, time and dates seem to disappear) I was holding her when all of the sudden she crashed she would have died without instant assistance. Their wasn't even time to put her back in her bed, all the nurses, and respiratory therapist worked on her, they had to bag her (help her breathing even though she was already on the ventilator) My heart stopped and I sat helpless looking at my baby as her life seemed to be fading out of her body. tears streaming down my face I was paralyzed. Nurses tried giving me encouraging words as they worked so quickly, "she's going to be okay mom" "we're getting her, she's coming back up". They are trained to be fast and calm, I remember feeling like Ella didn't like me, that maybe I wasn't a comfort to her. The very first time I got to go see my baby at her hospital the day after she was born, I remember she cried and even though it was a silent cry, because the ventilator was through her vocal cords keeping her from the ability to actually make any noise. Still her sweet perfect eyebrows wrinkled up and her whispered cries were very obvious. I felt like she was upset that I wasn't with her, I thought that since I didn't get to hold her that she didn't know me. Jon had stood by her side the entire night and when he walked up to her and gently patted her she calmed right down. I was devastated that I couldn't fix her cries. When she crashed in my arms later the feelings that I was already dealing with all came down on me and I felt like even after 9 months in my womb she still didn't know me.  I remember feeling guilty that I didn't feel as strong of a connection that I had felt while I was pregnant it almost felt like she was a different baby. My pastor's wife, Jamy, told me that it takes some time and that I would feel that gradually. She was so right, it took a very short time before I knew that I had a connection with Ella and motherly instinct enough to drive the nurses crazy with questions and "demands" on how Ella was cared for. I hadn't thought about that moment in quite awhile, I have a feeling that more and more of these memories will slowly creep back into my memories as I allow them in. I still can't believe we have to go back... again. Just doesn't seem like I can do it, but I will. I will because every joy we experience is because of her previous surgeries and the future Joys we will experience as we watch her grow up will be because of the next surgery.

This picture was the exact moment she was placed in my arms for the first time (not the time she crashed) It all hit me at once that she was mine!


  1. Amy, as I read your blog , I had tears in my eyes. It is funny how I can identify in different ways. I know it is not the same but some of the same experiences. I realize that I don't even realize it but I try not to recall so much of the past. I realize it when I see a show and they are in the waiting room and I remember all those feelings that hurt so much. On rare occasion, I look at Greg walk across the room and it as though I see him for the first time. I feel sad and well up with tears and can't believe what has happened. Every time we go in for another surgery, I don't know how we are going to do it again, therapy, medical equipment in our home, pain, so much more. There is a bone growth in his abdomen that is growing, we haven't even started that process yet. Drs. Don't even know how they are going to fix it due to the danger of radiation in that area. I can only focus on the grace that has been given me for today. I can only focus on the crisis for this moment. Grace is a gift from the Lord. I am grateful for that gift. He has been my rock in the time of the storm. I know both those things will be enough. I have to put my hope in that. He is God. He is enough.
    Love you, Kim (Aunt Kim)

  2. Beautiful post. Thanks for sharing.

  3. You and Ella have bonded beautifully. I think you're a great mom and believe Ella knows how much she's loved. I can't believe the books say she should be dressing and undressing herself at such an early age. Really? I don't think (lo so many years ago) I even gave my kids the opportunity to try at that young age.

  4. These pictures are absolutely beautiful. And, so is your story. I love that any mom could relate to what you are feeling. Even the mothers with perfectly healthy children will have some of these 'mommy moments' and emotions. But, I cannot imagine how helpful and comforting your words are to others who are experiencing similar stories with their children. You will probably never know the ways God is using your story and comforting others.
    Love the post! Mommy, daddy, and Ella will remain in my prayers :)

  5. Don't know how I missed this post but I cried like a baby. I have not been able to hold my little man yet but I feel o much more for you than ever before. That "mommy feeling" just sneaks up on you and is so wonderful but at times the emotion is overwhelming. Love you both so much! You are a inspiration to me as a mom.


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