Some days are good days.
Some days are bad days.
Some days I really feel like I got this!
Other days, I don’t have a clue!
Some days I think Ruby has good control of her bowels and only has accidents because she’s too busy playing. Some days I wonder if she has a retained bladder emptying reflex.
Some days I’m sure she puts on two skirts and no shirt to be goofy and get a laugh. Some days I think she just doesn’t get it.
Some days I’m really patient and feel like God gave her to the perfect parent to see her through all of this. Some days…. I just want to ring her little neck!
Some days I get so frustrated, I have to turn around and walk away to keep from calling her names and hurting her. Some days I am full of compassion and love.
Some days…. I wish God had given her to someone else. Some days I am so thankful to have her and cry at the thought that there was a real possibility that she could have died.
Some days I go to bed in peace, with a smile on my face. Some days I stay awake crying most of the night.
Some days I feel like life just happened and she is the way she is because of a perfect storm of events that no one could have predicted. AFterall, I was completely ignorant of health, nutrition, and gut health until she was six months old.
But some days I feel like it’s all my fault.
Some days I feel like she deserves better. More patience, more love, more understanding, more attention, more therapy, more food, more activities, more baths, more singing, more dancing. Better meals, better toys, better friends, a better room, a better bed, a better house…. a better mom.
Some days I’m so done with it all I put her in bed without brushing her teeth because I can’t bear another fight. Some days I brush her teeth extra well, floss, and brush her hair (it’s so thin and short that brushing it does nothing but stimulate her scalp. Most of the time you can’t tell whether or not it is brushed at all).
Some days I lay down with her and give her extra hugs, kisses, and snuggles. Some days I can’t wait to get out of her room and get a break.
Some days I think we’ll be okay- she’ll be okay- life will be normal, some day. Some days I feel like I’m doomed to be forever caring for a delayed child that will never live a normal life.
Some days I’m okay with that idea. Some days I ache with grief and mourn for her from a place so deep inside me that I didn’t even know it existed.
Some days the good outweighs the bad. Some days that bad outweighs the good.
Some days I feel like we will never have the answer to heal her completely. Some days I think that there will be an answer some day.
Some days are filled with hope. Some days are consumed in hopelessness.
Some days I miss the child I feel like I may never really know.
Some days I really look forward to THAT someday when the trumpet blows and we are caught up to meet Jesus in the air, and all this will be over.
Every day I am able to find adequate comfort in the knowledge that when we all get to heaven and she has a glorified body, that I will be able to meet her and know who she really is for the first time. I know that someday she will no longer be a captive of her sick body. Some day she will be able to communicate clearly and easily. Some day she will be able to interact normally with others. Some day I will really know my daughter and enjoy her like she was intended to be enjoyed.