family

The Ignored Defect

~ lovingbrielle ~ Leave a comment

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Imagine learning your child has been in a terrible accident. Doctors all over the world tell you your child is terminal. According to these doctors, your child’s life is no longer valuable, your child is, “incompatible with life.” These same doctors turn their backs on your child and leave you to grieve your living baby.

Now imagine learning that a few survived the same diagnosis. So you dig. You read and read. You question those that have survived. And then you figure out the common factor in survival, something no doctor has done or even tried to do.

But you have no way of knowing if your child has that common factor. You have eight weeks to not only find a surgeon to treat your child. But you also have to figure out multiple ways to save your child, in the event that your child does not have the common surviving factor.

Now, knowing all of this, imagine you only have eight weeks left with your child and at any moment your child could die unexpectedly. So you spend as much time as you can loving your child, giving your child everything you have to give, all the while using the rest of your time in study.

Can you imagine the fear? The guilt? The panic?

“What if I can’t figure this out? What if my child dies right before I solve this puzzle? Am I doing enough? Am I spending enough time with my child? What if it doesn’t work? Am I wasting precious time with my child? What if my child dies before I get the chance to say goodbye? Can I do this, can I save my child?”

Does your chest feel tight? Because mine does. And this, this is my life. A constant struggle between pure joy and love for my daughter and constant growing, gnawing fear.

Will I ever know if I gave her enough time? Will I be able to save her and make the time I sacrificed with her worth it? Self-doubt, fear, and guilt are my constant companions as we get closer to Brielle’s due date.

Tonight I asked David, “How do I live without her? If I save others with this diagnosis, but not my daughter, how do I live? She’s all I want. This is all for her.”

If You Like Pina Colada’s

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We had dinner at Red Lobster a few days ago. For those of you who don’t know, Brielle LOVES pineapple. It’s her favorite food. So I ordered a virgin pina colada and pineapple salsa salmon. She about lost her mind, she was so excited. It took her a few minutes to start swallowing after I started eating, but after she tasted pineapple, the dancing commenced!

Sweet Emmy

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Sweet Emmy and little Rosie creeping from behind her.

I’ve been having a lot of trouble getting up the stairs. I can only take about three at a time before I’m out of breath and my chest burns like I ran a marathon. This has made Emmy very worried. She stands at the top of the stairs and her big brown eyes look at me with worried confusion. I keep telling her, “Mommy’s okay, I just need to rest. I’m okay.” She doesn’t believe me.

So tonight, as I’m thoroughly winded, resting on the landing, she starts to smile and then runs down to the landing. She then looks at me with another big smile and runs back up the stairs, as if to say, “Look Mom, this is how you go up the stairs. I’ll show you how, you can do it!” She’s so sweet. Once I did make it up the stairs, she made sure to stay very close. She is such a good girl.

Our Visit to American Girl

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One of the things I always wanted to do with a daughter was take her to the American Girl store. My parents bought me a “Truly Me” doll when I was nine and they would take me to the store in Chicago and allow me to pick out a special outfit for my doll. I almost always chose the New Year’s outfit. The memories I have of this time with my parents are some of my favorite memories.

Naturally, I wanted to share those memories with my daughter as well. And as silly as it may sound, was one of the reasons I wanted to have a daughter. I wanted to take her to have tea with her doll, let her do crafts with her doll, buy accessories for her doll. She didn’t have to love it, I would never force it on her, but it was something I wanted to share with her.

Before we heard the diagnosis of anencephaly we were told we were having a little girl. This was a huge surprise! I fully expected boys (I have five nephews!). One of the first things I said was that I could buy her dresses, I could take her to the American Girl store! I was getting excited, David was shell shocked. He was absolutely terrified of having girls. Why? Because he was scared of something bad happening to them. You can’t do much worse than the death of your daughter, so now he only wants girls. “At least one more!” He says.

We met my friend Emily for dinner. It was cute. Star decorations on the food, the other girls eating there had special chairs for their dolls. It was adorable. And I was happy, Brielle and I were having a meal together at the American Girl store.

David and I had originally thought we’d get Brielle the Caroline doll. It will be retired after this year, so we thought that suited Brielle. Then Emily mentioned Grace, the doll of the year. Grace will only be sold for this year. Well now we were in a conundrum. Grace or Caroline, or both?! As Emily walked through the store and I waddled, we talked about which doll to get.

David decided that we should get Brielle, Grace, the doll of the year. It not only suited her, but it suited our family. Grace was on a Parisian adventure, David proposed in Paris, Grace has a charm bracelet, Brielle and I will have charm bracelets, and she has quite a bit of turquoise, one of my favorite colors. So it was settled. David lugged around boxes of doll stuff as I debated which outfit to buy Grace, and should I buy the books, the dvd? Since Brielle can’t see the doll, we decided to buy the books and dvd so that she could interact with those. She loves books and likes movies, sometimes.

And now it’s decided, each daughter should have a doll of the year, for the year she is born. And Emily has bought her daughter, Riley, the doll of the year from 2014. I like that tradition. I had fun sharing this with Brielle and having Emily there with us. Brielle slept most of the time, but did do some happy kicks for us.

Once we were home I unboxed the doll. Rosie and Emmy went crazy sniffing the doll and as they sniffed Grace, I told Brielle about the doll. I felt quite a few big happy kicks. I don’t know what she understood, but I’m glad she was having fun hearing me tell her about the doll. And so far, she has enjoyed the Grace book.

A couple of days later, David bashfully said, “I had fun shopping with you and Brielle. I liked buying her things.” He loves his little girl so much, he is such a great daddy.

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Brielle and Mommy posing in front of the store.
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Mommy, Brielle, and Daddy with Grace!
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Mommy and Brielle with Aunt Emily!

Death is Nothing at All

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Each day I am a bit more anxious than the day before. And tonight, after I’ve tucked Brielle in for the night, with a bedtime story and a lullaby. I find myself wondering how many more nights I’ll be able to read to her and hold her tight. Then I stumble upon this poem, which I’ve always found both heartbreaking and comforting.

“Death is nothing at all.
I have only slipped away to the next room.
I am I and you are you.
Whatever we were to each other,
That, we still are.

Call me by my old familiar name.
Speak to me in the easy way
which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.

Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me. Pray for me.
Let my name be ever the household word
that it always was.
Let it be spoken without effect.
Without the trace of a shadow on it.

Life means all that it ever meant.
It is the same that it ever was.
There is absolute unbroken continuity.
Why should I be out of mind
because I am out of sight?

I am but waiting for you.
For an interval.
Somewhere. Very near.
Just around the corner.

All is well.

Nothing is past; nothing is lost. One brief moment and all will be as it was before only better, infinitely happier and forever we will all be one together with Christ.”

by Henry Scott Holland