It Will Be Okay

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One of Brielle’s favorite books is “It Will be Okay” by Lysa TerKeurst. I bought this for Brielle not long after we were given her diagnosis. At the time I was still learning to talk to Brielle and be comfortable having conversations with my belly. It had not occurred to me yet that maybe David and I needed to prepare Brielle for what was coming. Her reaction to this book when we first read it to her was immediate. She was happy and it surprisingly brought comfort to David and I as we read it to her. At times, this was the only book she would respond to and so we would read it, over and over again.

Within a few weeks, I began telling Brielle what was going to happen when she was born and I continue to do this. I tell her how it will be scary. That it will be cold and she might be in pain. I tell her that she is very sick and that she will need to fight hard to stay with Mommy and Daddy, but that if it’s too hard that it is okay for her to go. But I always ask her to hold on just long enough to let me hold her. I want her to be with David or I as she passes. I’ll tell her about the doctors and nurses and how she may not be able to be with Mommy right away, but Daddy will be there, he will be close to her. I tell her to be brave and not to be afraid, that it will all be okay. And no matter what, Mommy and Daddy love her.

I feel like this sweet children’s book helps not only her, but also David and I. The book follows a little seed, who lives in a cozy packet in a cozy shed, and who makes a sweet friend called Little Fox. But then the Farmer (God) takes him out of his cozy packet and puts him deep in the ground. Little Fox and Little Seed are scared and afraid of what will happen. There are two parts that I always love and that even now Brielle just perked up for as I read aloud again.

“Little Fox thought hard for something to say or something to do that would help his friend not be scared. But he was afraid too. ‘It’s different and scary to be someplace new…but it will be okay, Little Seed.’ Little Seed was not so sure. And neither was Little Fox. But the Farmer was good, and the Farmer was kind, and the Farmer was always watching over them. Even when they didn’t know it.”

I often let Brielle know that I’m scared too. And that I don’t want to lose her and I’d do anything to keep her with me. I’ll hold my belly tight and tell her, “But it will be okay, you will be okay, Mommy is just going to miss you.” And I think that’s why I like the ending of this book so much. Brielle and I may be apart for a long time, but one day we’ll be back together again and we’ll have made it through the dark and scary time.

“Together they made it through the dark and scary time, and together they each learned that the Farmer was good, and the Farmer was kind, and the Farmer was always watching over them. Even in dark, messy places.”

Brielle’s Spirituality

I watched this earlier and as I was watching it I felt Brielle start to move. The longer I watched the more she moved. And once the clip ended? She stopped moving. Brielle does things like this all the time, things that make me wonder just how much she understands. For instance, every time we pray she starts moving. When we’re at church she dances during the music. No matter what kind of music it is. We can be in a church that is all acapella and incredibly quiet. We can be in a church filled with thousands which a choir and orchestra, people singing out loudly and boldly for the Lord, and she dances.

During a sermon a few weeks ago, the preacher stated, “Jesus is the way, the truth, and the life. No one comes to the Father except through him.” She jumped. She jumped so suddenly she knocked the breath right out of me. I don’t have an explanation for these things. And quite frankly, I don’t need one and I don’t think there ever will be one. But these things make me wonder. I wonder if she has her own faith, her own opinions and feelings about God. And it makes me ponder on this quote: “We are not human beings having a spiritual experience. We are spiritual beings having a human experience.” While I’ve always thought this to be true, I never once thought of it through the eyes of a baby. Through the eyes of my daughter. And I really don’t think there is anything quite as beautiful as pure innocence celebrating God.

More Prayer Requests

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Okay, more prayer requests. I have another doctors appointment this afternoon. The last one went well and he was receptive to the information I gave him. This time, I have even more. I’ll be sharing my preliminary thoughts on procedures that should be put in place. And also sharing with him all of the potential causes of death for anencephaly. I’ll be talking to him about ways to avoid these problems and how to save Brielle. Again, this isn’t done. Actively trying to save a child with anencephaly is not done or encouraged. So prayers for this would be greatly appreciated. Also, please pray that God can open my eyes to more information and give me more understanding so that I can figure out how to save these babies.

Prayer Requests

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I have a very specific prayer request. We are going to push for MRI’s and imaging to check on the health of Brielle’s brain. Please pray that not only will we be connected to the right doctors for this, but also that insurance will approve it. It is not normal to have these babies treated, so our insurance may tell us no. Please pray that they say yes. We so badly want to give Brielle her best chance.

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