Her room used to be my favorite place in our home.
It was clean, organized, always clutter-free. It was cheerful, colorful, calming. I made sure remained perfectly neat at all times, unlike the rest of the house.
I would often go in there toward the end of my pregnancy and sit in the glider. I would put my feet up and talk to her, already enjoying our time together in that special space that would soon be hers.
We filled her bookshelves with books and her closet with clothes. Friends and family came together to help us get the room ready and to prepare a home for her.
I couldn’t wait to make memories in there with her, to read, play, dress up, look at the maps, and enjoy time together.
Once she was here, she and I spent countless hours in that room. That’s where I nursed her, rocked her to sleep, played with her, changed her, dressed her. Everything.
Some of my favorite memories of her took place in her room, in her crib.
I discovered at some point that I could lay her down with toys and the mobile running above and I could get things done a few minutes at a time. She would laugh, smile, and play. Many of the best pictures we have of her were taken in those moments.
She loved her changing table, or perhaps simply the undivided attention that she received while on it. She would laugh and smile and move around – we called it dancing. She was pure joy.
And then Krabbe began to take over her body and everything changed.
Night after night we would try to lay her down to sleep in her crib and she refused to sleep. She became inconsolable and we finally brought her into our bed out of desperation.
She would sleep soundly as long as she was near us. Now we know that she longed for the comfort that only parents can give to their baby because she was hurting. Next to us, she felt safe.
And there she still sleeps today.
She has her half of the bed and whoever is the parent on night shift has the other. The other parent sleeps upstairs in order to actually rest, and because our queen-size bed is simply not big enough for two adults and a baby on a big pillow.
You do what you have to do.
Slowly, without realizing it, we began using her room less and less until we weren’t using it for anything meaningful anymore.
Her room is now used to store medical supplies, clothing, giraffes, and anything else that doesn’t have a home amidst the growing number of medical devices taking over our home.
The place that brought so much joy now only brings grief. It is no longer the wonderful, serene place where she and I enjoyed so many hours of loving memories.
It’s just a closet.
Even So, Joy 
I am so sorry you two. So deeply and incredibly sorry. My heart aches. I know Saturday will be one year since diagnosis. (You found out on the same day AJ was born.) we pray for you daily and love you each so much.
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I can’t even imagine what you are going through, but I can say that you can still bring joy back and even to that room. With the strength of your faith and the love you have for Tori, you will find that again. Find a way to make it a good place again, even if you only use it once a day to rock Tori. All of my prayers and thoughts go out to you now, while you continue to cope, and make Tori’s time with you memorable.
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My heart breaks for you.
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❤ There's no good words right now. Sending love….
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Oh, sweet Lesa. I would hug the stuffing out of you!!
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Grieving the loss of dreams with you. Praying God’s loving arms comfort you in this loss and that His new mercies every morning give you the strength for another day on this journey.
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I’m just so sorry……….
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God bless all of you, my heart breaks reading this. So sorry.
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My heart just breaks for all of you.
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I pray that one day you’ll find a way to honor her with the room.
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Thank you very much for this post. It was full of grief and lament. That is okay. Praying for you and Brennan.
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Lesa, I was reminded of the ageless song: Does Jesus Care
One particular refrain stands out, for you and Brennan today:
“Oh, yes, He cares, His heart is touched with my grief. When the days are weary, the long nights dreary, I KNOW my Savior cares.”
And, because He cares and is touched about your deep, unspeakable yet spoken, heart rending grief for Victoria and her infirmity, we will continue to stay in His Face, His Presence, His Countenance, with our petitions for her healing, here on this earth. We will not faint or grow weary, until He grants the Mercy of the healing. May He continue to strengthen you through the Journey with His total Joy, His Shalom, His garments of praise, each second of the day as you cherish and intimately and passionately care for this beautiful little princess of the King of kings. You are loved with an Everlasting Love, and underneath you are the Everlasting Arms of the King of the universe.
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