Everything Is Restored

Today, a poem by my friend Jenny George. She has somehow managed to capture exactly how it feels to be Ronan’s mom.

Everything Is Restored

He swallows the last spoonful

of prunes, their soft rapture

in his mouth. Then the jar

is washed under play of light,

then the boy’s mouth

is wiped with a cloth.

He squalls for a moment, then

stops. Everything is restored.

Chime of spoon in the sink.

The boy is lifted out of his seat,

legs swimming in the slow

element. He is a small seal.

The kitchen ebbs and

flows, sleek afternoon sunshine.

I want to end the poem here,

with the boy just now placed

in his crib, just now slipping

into the silvery minnows

of his dreams, a disorder of shine,

particles of motion flickering

beneath the surface.

I want to end it

before harm comes to him.

Harm will come. It’s the kind of knowledge

that ruptures and won’t

repair—an ocean that keeps

on breaking.

The day moves with the gradual

logic of drowning.

Evening fills the house.

Oh, where are you? Where are you going?

The mother folds up the ocean

and shuts it in a cupboard.

It’s how all great dramas end:

everything is restored except safety.

5 responses to “Everything Is Restored

  1. Touching poem by your friend. She’s clearly with you on this journey, Emily.

  2. Thank you for this very beautiful poem.

  3. Bernadette Murphy

    Love this poem. So true, so haunting. Thank you for sharing it.

  4. Intense but beautiful.

  5. Emily,
    This will be a casserole comment…lots of random thoughts pieced together; a bit of potpourri, if you will! First of all, as I am reading some of your blog entries, my heart is just aching for and with you. Your prose is very raw, very tender, very real. I cannot help by swallow the lump in my own throat, reading about your journey with Ronan. My name is Anne, and I also had a child with Tay Sachs. My daughter, Daisy, died last August after humbly meeting the challenges of her disease. She was 17 months old, and like you, my husband and I decided to focus on quality of life instead of quantity of life. It was a very personal, difficult decision, one not made lightly.

    Thankfully each parent is an expert with their own children, and can make decisions that are best for their family. There is no right or wrong answer for EVERYBODY, but there IS a right answer for YOU! 🙂 Since her condition was terminal, and since there was (unfortunately) no cure, we decided that we would make Daisy’s life as comfortable and enjoyable for her as possible. When we found out about her dx, Scott and I sat down and had a very emotional discussion about Daisy’s end-of-life care. I don’t regret that discussion; decisions were made during that “rational” period for us (instead of during the heat of a moment, such as a medical crisis.) Oh, how my heart broke! But I don’t regret my decision at all. Daisy had a beautiful life; we enjoyed every precious minute and hour and day that we had with her. In April of last year we signed up for hospice services in our home. The nurse and Dr gave us medications to administer to D to alleviate her pain and anxiety. At that point, Daisy had incredible nerve pain, and would become extremely agitated. It was heartbreaking. She would cry. all. day. At first I was hesitant to give her mophine and ativan to help her symptoms….do I want her to be on medication all day, but be “out of it and spacey”? Or do I want her to be cognitively “present”, yet watch her cry all day in pain? Well, we ultimately did what was best for Daisy and give her medication. Once again, our hospice nurse (an angel!) told me to not feel guilty about giving Daisy these prescribed narcotics. Daisy needed them, and obviously the medication alleviated her pain because she stopped crying! Emily, I hope you are not aversive to black humor, because I do want to say this: my husband and I joked that Daisy was blissfully “snowed” all day. It’s essential that you find humor in these types of situations – otherwise you may discover that your mind will crack.

    Like you, I had a lot of questions and apprehension about death. Especially my child. My baby. My own angel nugget. Death was pretty much a mystery to me then, but to include the implications of it happening to my own baby? Talk about needed anti-anxiety meds. I don’t mean to take this lightly – it was really bad. It was enough to drive anyone mad. We would question ourselves many many times before Daisy actually passed away, “Is this it? Is today the day? She’s choking on her food – is she going to aspirate? Is this it?” The hospice nurse told me some sage advice, “Caring for a terminally ill loved one is like running a marathon — except that you never know when the end will be.”

    I am still in the grief cycle – I believe I will experience that grief to some degree until I am reunited with Daisy some day. My testimony of a real and loving Father in Heaven, and in the eternal nature of families, and in the Resurrection have increased exponentially since my experience with Daisy’s disease and eventual passing. The Lord has not abandoned me. My knowledge and testimony of these gospel truths are so real to me that they are tangible. I know without a doubt I’ll see Daisy again. I know death is but a brief separation – but oh, how painful and heartbreaking is that separation! I had (and still have!) lots of questions to ask God when I get up there. Why did I have to go through this trial? Why me? Why do I feel suffocated with grief? Why Daisy? She was perfect!I agree with one of the posts that said that Ronan is already perfect. how true that is! I know without a doubt that Daisy was perfect. She was sent to this earth not so much to learn, but to teach. Just like the flower after which she was named, Daisy’s season was short, but she was still beautiful and bright. I came across this quote that gave me so much comfort. The words are so poignant because they are from a man who has personally experienced the death of a child “…why it is that infants, innocent children, are taken away from us, especially those that seem to be the most intelligent and interesting. . . . The Lord takes many away even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again. . . . All children are redeemed by the blood of Jesus Christ, and the moment that children leave this world, they are taken to the bosom of Abraham. The only difference between the old and young dying is, one lives longer in heaven and eternal light and glory than the other, and is freed a little sooner from this miserable wicked world.” (Joseph Smith)

    One more thing, I saw some pictures on your blog about Ronan visiting the Sensei – and he is breathtakingly beautiful! (R, not the old guy!) I have looked at pictures of other children with TSD, and have recognized a famliar light – a peaceful spirit – the same “old soul” look that Daisy had. Here is a quote by Kenneth Bihn, president of the Cure Tay-Sachs Foundation:

    “….[Children with Tay-Sachs disease] don’t live very long, but there is something extra inside of them that I can’t define. They just emit a power that makes you feel good around them.”

    Take care,
    Anne

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