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.
U act how u need to act, cry, scream, whatever it takes. Who cares what everyone else thinks.
ReplyDeleteWhitney you have so much love and support surrounding you! You don't have to be strong! We may not have the right words to say, but I promise you've got a whole team praying for you that will be here for you to lean on when you need us.
ReplyDeleteWhitney I can relate with you on what you are saying. My son, Kody, has Friedreich's Ataxia. He is 15 years old and 8 years into his genetic diagnosis. He is the sweetest lil man in the world. His intellect is not affected by the FRDA but everything else is. So essentially he is fully away of the degenerative progressive neuromuscular disease stripping away everything that he has and knows that it will also be what takes his life. FRDA caused him to also have Hypertrophic Cardiomyopathy which has progressed quickly and Scoliosis which keeps him in constant discomfort and pain. I hate FRDA and I hate that my son, who has done nothing wrong, has to watch his body deterorate and nothing can be done to stop it.
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