My naughty moment. :)

Today Aralyn and I made our weekly trip to the grocery store. I always have to prepare myself because questions are asked and stares are noticed. On an average day I love to answer questions and share Aralyn's story with every stranger that passes, but today I just wanted to get in and out. While walking through the frozen section, it helps cool A off, a man asked how old she was. I told him she's 13 months and he said, "You must be a handful to keep up with.". I shook my head no and told him she's immobile then walked off. While at the checkout a little boy under the age of one was jumping around in the buggy, grabbing candy faster than his mom could look up from her phone. She looked at me and said, "Doesn't it drive you crazy how they are always jumping around, getting into stuff?". Again, I shook my head no. When she noticed Aralyn being the "perfect child" she asked, "How do you keep her so still and quiet?". My answer may not have been the best, but I needed a little humor today. I simply said, "I rearranged her DNA.". You should have seen the look on her face! What makes it worse is that I didn't clarify. She went back to her phone and we headed for the car. It may have been naughty, but I couldn't resist. I think Aralyn was pleased with the trip. :) Some days are just too hard to go into detail. Today was one of them.

Pain, Pain Go Away.

The music is done. I did it. I have made a list of songs to be played after my daughter dies. I know that after "the day" comes, I'll never be able to listen to these songs again. One song, Praise You In This Storm, is sang at church a lot and every time I break down. I know what this song will relate to one day and it's unbearable. Strangely enough, there is one extremely sad song that gives me a sense of peace. The words have seeped into my heart and it's comforting. Precious Child by Karen Taylor-Good reminds me that Aralyn will always be with me.

Why does it have to be this way? Why do some mother's have to go to sleep aching for their children?

Why do I feel the need to "act" like I'm strong when all the while I'm slowly crumbling? I can count on one hand how many days I haven't cried in the past 13 months. With all the family, support, and love surrounding me I still feel like I can't handle this. I've lost several friends and a super close family member, but I'm pretty sure that won't compare to my child. What do you do afterwards? How am I supposed to get up every day and be a functioning member of society when she is gone? I guess I'm getting ahead of myself. Here lately all of her doctors seem to be giving up on her as if she were already Home. Her pediatrician refuses to give her breathing treatments or pain medications. Tonight, she woke up screaming in pain. She arches her back, stiffens her arms, and screams. How dare you tell me she is not in pain! I'm not talking about a rotten cry to be held or a sad cry of hunger, this is a full out, high pitched scream. All I can do is gently hold her (making sure I don't move her the wrong way) and pray for God to give her some relief. Thankfully, tonight wasn't as bad as a few nights ago. When I laid her down in bed she looked up at me and I fell apart. She doesn't deserve this! She didn't cause anyone any harm. She didn't break any laws. She's never even sinned! I'd do anything to be able to take all the pain away. I'd give my life for her in a second. I'd give anything for God to heal her without taking her Home. But that's not His plan. I try not to ask for Him to heal her, but for His will to be done. Here lately, that's been really hard. I want the pain to stop!

 Lord, please stop the pain. Not just for tonight, but for the rest of her life how ever long that may be.

It's harder than I expected.

After today, I may never listen to another song again. When I woke up this morning I decided I needed to get this job taken care of and out of the way. I'm trying to find the "perfect" music for Aralyn's funeral. Every song makes me a little more ill than the one before and I'm about ready to yank my ears off. How can such beautiful music be used in such a tragic way? I know how!!! Aralyn Faith will NOT have a funeral. She will have a "Celebration of Life" and that's all there is to it.  I've always used music as an escape from reality. I can get lost in one song for hours, playing it over and over again. Today, I want to hear nothing. I want to sit in the silence and listen to her breath. I have one song picked out. I know it has to be played because when Aralyn heard it, she smiled. Of course I cried. It's like she knows what I'm doing and is telling me it's ok. Two weeks ago in church Aralyn was talking up a storm while Bill preached. Then in Sunday school  Laura Lea said it's because she is telling us it's ok, she's going Home and will be ok. Maybe those weren't her exact words, but I knew what she was saying. I sit around crying while Aralyn smiles her big, cheesy smile. She knows. She knows she's going to have a perfect body, perfect brain, and will be pain-free. I wish I could find comfort in that thought, but it's not working. I want to scream, kick, stomp, and tell God what He will do with Aralyn's life. I'm sure that will get me real far. Maybe we'll just play the Wonder Pets theme song over and over again. I'm sure Aralyn wouldn't mind because she loves it! I have so many things to figure out and I don't know how much time I have.

I take it back.

All I've wanted is a prognosis. I've asked every doctor, "How much longer will she live?". I just want answers. I need to be prepared. I can't stress enough how much of a planner I am. Now, I want to take it all back. I was given her prognosis and I want to erase the knowledge from my brain along with that stupid tumor picking on my baby. I don't want to know anymore. Please Lord, let me forget. I'm begging You to take the words back. I don't want to tell You how to do Your job, but I can't take this anymore. My family, friends, and even a few strangers are hurting because my baby is sick. So much pain is surrounding us and I can't take it all away. A Band-Aid won't fix it, a kiss won't make it feel better, nothing is working. I pray, and pray, and pray and my baby is still dying. People keep saying that one day I'll understand, but I don't want to. All I want is for Aralyn Faith to outlive me.
All my life I have wanted to "belong" and fit it. Now, I "belong" in THAT group. You know, that group of mom's who people stare at because their babies are dying. The group that people feel sorry for. The group that is offered tons of outside support, but no one knows what to say so they run. I'd give anything to be kicked out of my new group.
I have, at most, 12 more months to spend with my beautiful baby girl. I want to cuddle her up and lay in bed and never get up. I want to trace her face with my finger over and over again so I never forget. I want to burn her cry, scream, and laugh into my brain. I want her to live longer. I feel so selfish asking for more time since she wasn't supposed to live an hour, but I really can't give her back. I know she is His child, but I want her all to myself.
Please God, please let Your will be that she stays.

My Beautiful, Precious, Pure Princess. <3