I'm not feeling well.
After 3 days of Mabel crying my back started aching so badly yesterday that I knew something wasn't right. I made a quick trip to the Dr to confirm that I have a UTI and got started on some medicine. Today I woke up and am nauseous, exhausted and still in pain. However, after a medicine change late in the afternoon for Mabel, she is awake and happy. We've been up for an hour and she hasn't cried yet.
I'm not sure if it was the combination of the maddening cries and me not feeling well or if I just needed a good, long cry but after the other kids were in bed and I was rubbing cream on Mabel's dry, patchy skin I finally lost it. I rubbed and rubbed her tiny body and sobbed hysterically at the site. She is so little. And as rubbed her arms, and they were jerking I couldn't help but pray that this was all just a horrific nightmare. Surely this can't be true. Surely this can't be happening.
Why is this our life? Why is she so little? Why can't she gain weight? Why does she puke? Why does she take so long to eat? Why does she choke? Why does she have such bad reflux?
Why. Why. Why.
Of course this is what I do when I allow myself that time alone to cry, think and be vulnerable to everything I hold so tightly inside. I still allow myself the 'whys'. I still allow myself the pity. I just need it to be able to empty the container in my spirit of those feelings so it will have plenty of space to fill back up with them again. When I'm at overflowing, that is when it happens and I have learned that it is perfectly ok.
I love her so much it seems physically impossible. And I ache for her so much that I can't truly believe that she's mine.
Last week I sobbed hysterically as I sat over her while combing her hair after a bath. Her hair is rapidly thinning. No one can tell us why; it could be medicines or it could be the disease. Who really knows? All I know is that I feel like it's all so unfair. Can she not just keep one thing? Can one thing not be taken from her? And as I held her tiny head in one hand and combed through her thinning hair with the other, I sobbed FOR my baby for the first time in a very long time. Her head is so small; and maybe smaller than it's been. It's all just too hard to know that inside of her little head is a brain that is slowly building up proteins to then slowly shut down. How cruel is that?
Yesterday I heard Braden ask his Aunt Jeni if she loved God. She replied, "absolutely!" and he smiled. He said that he loved God so so much. Later, while driving in the van, he sang "Jesus songs" and he often cries when he hears someone sing about Heaven. His spirit is so sensitive to spiritual things. I'm so thankful because God has truly already placed inside of him a capable heart; a knowing heart.
After my cry last night I laid Mabel down as I always do. After a long bath where I was able to relax I snuck into the room where both redheads were and found them both awake. I practically begged them both to climb into bed with me. They did. Throughout the night I found myself wrapped up in both of my bigger kids and took comfort in their warmth and their littleness. I woke up many times, as I often do, and remember smiling because both of them were doing the same in their sleep. They looked so peaceful and I prayed right then that God would continue to give me the right amount of strength to parent them in this journey and to the best that I can. I prayed that He would fill the places in them where I cannot. He always does and I am thankful that I have that partnership with a God who is that personal.
The little lives around me are the joy of my life.
Inside of them there is hope, comfort, peace and laughter.
They are teaching more every day than I could have learned in this entire lifetime alone. The plan for our lives is so perfectly laid out and I am so grateful that God entrusted me with the responsibility of caring for each of these kids. At the end of every hard day is the beginning of a new one and I am always pressing forward to that new day. He is there and that is where I want to be.
Ramee, I emailed you at your hotmail address last Friday, and then again the day after you posted on my blog, naomikathleen.blogspot.com. My daughter Naomi has CLN5 and also showed symptoms from birth. We need to talk. My email is firstname.lastname@example.org.
Dear Ramee. Wishing you strength. I really would love to send you and the children a box of English sweets if you like! Message me on Facebook if I can send you a little care package. xoxo
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