That was my nickname as a child. When I was a kid I cried about everything, so much so my Mom gave me this nickname. Who knew I was in training?
Gradually I learned to not give into the sudden flow of tears so often and began to believe that at the very least it was a bad habit and more likely a character flaw. After Nani’s diagnosis that presented a problem for me.
Tash was 2 1/2 when Nani was first diagnosed, she was a happy, precocious and quite possibly the most compliant child you ever met. You could have carried her by her feet when she was a baby and she would have laughed and cooed. (And yep, I thought it was due largely to my amazing parenting skills! I was young, I was stupid..I was humbled.)
The diagnosis felt like a 2 edged sword. Many parents have told me that after their child was diagnosed with a disability that it felt as though someone had handed them a different child. That’s how I felt. I mourned the loss of the baby I thought I had and I mourned the loss of normalcy, especially as it concerned Tash. Normalcy had been in short supply since Nani’s birth. She was not an easy baby. She didn’t like to be held. She was easily overstimulated, colicky. Not easily consoled. I wondered what the fall out would be for a 2 year old whose mother was brokenhearted and exhausted.
The strongest conviction I had was to be fully present, not pre-occupied by my grief, and do whatever I could to continue the childhood Ashley had known. And I was in rescue mode. I was going to do everything I could to help Nani or die trying. Besides reeling from the diagnosis I was on an accelerated home nursing course with new diagnostic terms, new drugs, side effects, therapies, lab values, multiple doctor visits and learning to give Nani daily injections. I was exhausted by the end of each day with no energy to process anything that I was feeling.
After a few weeks I began to wake in the middle of the night. I would slip into a bath so that I wouldn’t wake Frank and cry for a couple of hours, and then go back to bed. I had a strong sense that God was waking me up to do my grief work, but I second guessed myself. I didn’t trust the need to release those tears. I thought I might be giving into something. Something that would rob me of the energy and strength I needed to get through my days. I asked the Lord to shut down the midnight crying jags or show me it was Him.
A few days later my new neighbor came to my door. We had only had a few brief conversations, we didn’t know much about each other. She did know about Nani’s diagnosis, but that’s about it. She stood in my entry that morning looking a bit awkward. She had a box in her hand and said, “I don’t know what you’re going to think about this, but I’ve been praying for you and I feel like God told me I was supposed to get you something. Something you were going to need. I know it sounds weird, but maybe it will make sense to you.”
She handed me the box. It was a bath pillow.