**I wrote this post a few days ago, with tears streaming down my face. I hesitated to actually publish it, because it is a sad post and I hate to get too negative. It has sat here in my draft folder for 3 days. I publish it now because the pain isn’t as bad today, and I would like to remember those painful days farther down the road. I plan to print this blog into a book for Livvi when she has won her battle. She will be able to look back on what she has done and can be proud that she fought through the tough times**
Today I felt pain. Pain in my heart.
It’s Spring Break this week and Liv’s numbers are good enough that she can do a few “normal” things here and there. We planned a fun picnic and play-outside-day with her cousins. She was so excited to go over there and play on her swing set and have a fun lunch.
Before we left, she had had a rough morning. She was so hungry. Hungrier than she had been the last few days. I told her “no” quite a few times, but when I did that she just moaned and cried. Sometimes I feel like she does the moan and cry just to get her way (steroid behavior); but today it felt different, she truly seemed so hungry. Like the hunger was just eating at her. This hurt my heart so badly. To watch my sweet girl, who had transformed in front of my eyes in just a few short days, want even more food. And I knew if I gave it to her, she would just keep getting bigger and even more unrecognizable.
When we got there, we had lunch first. She had, of course, picked the menu 🙂 She wanted Turkey, Provolone and Avocado sandwiches with fruit and Cheetos and Izzy drinks. and then we went outside and she played on the swings. She loved it! Then, she played a fun game of Memory with her aunt. The other girls were doing handstands, somersaults, running around and dancing. That was when the first pain stabbed my heart. Liv used to love to run around and dance with the big girls. Now, she barely had the energy she needed to walk out to the swing set. But, she was having fun and had a big smile on her face, so I tried to push the pain aside.
Liv was getting tired, and so were the babies, so we came in and fed the babies while Liv’s aunt took the kids on a walk. She was a champ, pushing Liv in the stroller…thats definitely not easy 🙂 Once they got back, I could tell Liv was tired and emotional. We put in a movie for the kids and cuddled up on the couch. The whole time we snuggled, she panted and groaned. She was so uncomfortable. She has so much extra weight on her right now that she can barely move. She laid on my chest and just had the saddest look on her face. I got up to use the bathroom, and when I came back she was struggling to get herself in sitting position. She was trying with all her might to scoot herself back. The look on her face was pure frustration and sadness. Finally she just collapsed back in defeat and cried. I tried to help her get into a good position, but I can barely lift her now. This little scene almost crumbled me to pieces. My heart ached for her. It is so sad and frustrating for me to watch my little girl, who three weeks ago, was a happy active little girl, go to a very puffy, big and sedentary girl. I can’t imagine how she is feeling right now. The body she knew for so long doesn’t look the same or feel the same anymore. She can’t make it do what she wants it to. She can’t fit in her same clothes. She can’t brush her hair off her face. This all happened in a matter of days! Less than a week!
The hardest part for me in all of this is that she has become very self conscious. She’s constantly covering her tummy with her hands. When anyone talks to her, she covers her eyes. She rarely talks, and when she does its in a strange baby voice. She doesn’t like anyone, but me, to touch her. When she is hungry, she is so embarrassed to tell me. Its like she’s ashamed that she is hungry. She knows that its not normal how much she wants to eat. She knows that her body has changed. She knows that she can’t fit in her clothes. She knows that she is bald. This self consciousness has been the most heart wrenching thing for me. I really hope and pray that once the steroids are over, her personality can come back, and she will start to feel like herself again.
As I sat here crying tonight I felt so helpless. I don’t know what to do for her. I don’t know how to make her feel better. I don’t know how to take the pain away from her. I found myself pleading with Heavenly Father to help me. Then I thought of Christ. I thought of his sacrifice in Gethsemane. He knows my pain because he felt my pain. But more importantly, he knows Livvi’s pain. He felt her pain. He took that pain upon himself. He loves us all so much that he took all of our pain upon himself. He made the ultimate sacrifice for us. I know that He knows how I’m feeling, and that He knows how she is feeling. I am overwhelmed with gratitude for my Savior and for my Heavenly Father. I know that he can carry me through this hard time, and that He can also carry Liv through this hard time. I wish that I could explain this to my little Liv, in a way that a four year old can understand. I am determined to learn how, and do it soon, so that she knows that she is not alone in this trial. She is so strong, but she can be stronger with Him.