I’ve missed this blog. I haven’t written in over a month. That’s the longest I’ve gone since Lucy died. Lest you think I have forgotten my promise to her, I will assure you have not. I have been working on another Lucy-related project –Team Lucy’s Ladybug Jam, a family music festival fundraiser for our Heart Walk team. I have been working on it nonstop, partly because we started a bit late.

You might think the other reason I am driven about the Ladybug Jam is obvious, but I don’t think it is what you expect. The other reason (one of them) is guilt.

One of the things Chris and I hear frequently from others is how strong they think we are. You would think this would be nice to hear (and it is), but it’s not strictly true. The fact is, we weren’t always strong during Lucy’s illness and we haven’t always been strong since. We aren’t heroes or saints. I always thought being a parent would awaken unselfishness in you, especially if your child has a serious illness. But you aren’t always unselfish. You still get selfish. You get tired. Sometimes you just don’t want to deal with any of it anymore. You still want a break, even when you know your kid could die. And sometimes, you want to run.

I remember those nights in the hospital with Lucy screaming in her crib while I huddled on the pull-out bed and cried. I couldn’t soothe her. She didn’t want to be held. She didn’t want to rock. She was tethered to wires, so I couldn’t walk the room or the halls with her. I couldn’t leave her alone in the room. I couldn’t soothe her and sometimes I didn’t want to. I just wanted her to make it easy on me and just go to sleep. Because I needed to sleep, so I could face another day of sitting in a hospital room.

I remember one night in Dallas when I reached the end of my rope. I don’t remember the precipitating event. I just remember that I wanted to run. I wanted to run out into dark, unfamiliar downtown Dallas and just keep going. I actually sat down on the pull-out bed and put on my shoes, with Chris worriedly asking me the whole time where I was going and what I was doing. I didn’t know. I was just desperate. I had had it. I wanted to run.

I feel guilty about all of that. I did not do the things I feel a parent of a seriously ill child should do. I didn’t stay up late reading all the latest medical studies.  I didn’t get her into some cutting edge new treatment that miraculously saved her life. (It doesn’t exist, but even so.) It was all I could do to keep my head above water. It was all I could do to take care of a toddler and a baby who had a chronic illness and was deteriorating before my eyes. I know I did the best I could. But I could have done more if I really tried. And I didn’t. I just survived as best I could. It was all I could do to do what the doctors and physical therapists said and try to keep her alive. I didn’t have anything left to actually fight the disease.

That is why I am driven now. I want to make up for what I didn’t do when she was here. I want to find the cure I didn’t look hard enough for while she was still here.

1 Comment

  1. Audra Kinser said,

    October 5, 2013 at 10:40 pm

    Hi Sarah, Please know you and Chris are always in my prayers. I recently read a letter that you had written to Lucy – and I sobbed – uncontrollably. It came from a place deep inside that I normally avoid at all costs, because going there is just too painful. I can only imagine what you and Chris have been through. You both must be exhausted, and I hope that you can do something very nurturing for yourself as often as possible.

    I am panged as I read your expression of guilt. Please know that anyone would have wanted to escape the intense pain of seeing their child suffer. I would have felt the same way, and probably would have found ways to create some sort of escape, even if for a little bit of time.

    You are human, and please remember that you were not wanting to abandon your child – you were trying to soften the primal, gut-wrenching pain that is attached to seeing your child suffer – and not knowing the outcome – fearing the worst.

    I have a toddler too. There simply isn’t the bandwidth to research anything – no matter the topic- when trying to reason with, cajole, bribe (me), keep up with, clean up after, protect from injury, and feed and dress a little person. It ain’t happening.

    You were right to focus your attention on providing attention and love to your children, versus spending your precious time staring at a computer. Like you said, a miraculous treatment did not exist. What a gift you gave your daughter and son during such a difficult time – the gift of being present.

    I have no doubt that if Lucy could write you a letter, she would thank you and Chris for loving her so deeply, taking such amazing care of her, and she would tell you how grateful she was to be in this realm with you. Lucy is a bright light in heaven, and I bet that she wants nothing more than for you and Chris to know how much she felt and feels loved, that she is surrounded in love, and that you can rest deeply knowing that you were perfection to her.

    Love, Audra

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