Gray

Gray. It’s my favorite color, but not when it comes to knowing. When it comes to knowing, I want answers. I want to know when. I want black or white.

But dying, like living, is full of gray.

…..

As I type, just got an email notification from the middle school Jayden would have been attending if he didn’t have Sanfilippo. It was a reminder about the school dance tonight.

As I type, I listen to the rhythm of his breath. In the background, Mickey Mouse Clubhouse plays.

 

I can’t believe it’s snowing.

I can’t believe it’s November.

I can’t believe my son is dying.

 

What we have anticipated since 2009 is here.

…..

The hospice nurse stopped by to check Jayden and told us because it’s his brain that is failing, no one knows how much time he has left. Lungs are clear. Heart is strong. Still tolerating his feeds. Only Jesus and Jayden know and it is our job to listen.

He is sleeping a lot today because we started meds for pain. I miss the laughter and smiles this morning, but I love the peace it brings to his restless body. He is calm.

Last night, Justin had him cradled in his legs sitting in the trampoline. Jayden smiled.

Earlier, he was tickling Jayden on his face with his beard. Jayden smiled.

Justin is such a great dad. Serious comes easy for me, I have to work harder at having fun. Justin is fun. I love that we balance one another out. In fact, we are stronger than ever. And today, like many of our days lately, we are on the same page. We feel honored to be Jayden’s parents. It’s easy loving him, what’s hard is letting him go.

…..

The end of life process is equally difficult as beautiful, I am finding out. God is being patient and gentle with our hearts. He is answering every prayer we have prayed for this time. He is meeting us in every decision, every moment.

The peace in the home is sustaining me. I have candles burning, soft music playing, and chocolate donuts staring at me. The lights are off, the sun giving us most of our light. My countertops are clean. The laundry machine is going. It is calm. I can focus. My mind is clear. I still have an anxious heart, to be expected, but God’s peace is greater.

We are ready for casseroles, but not quite ready for visitors. We feel bad for keeping many of you in the wings, but we have to do what feels right, and creating a sacred space in our home right now feels right. Please know we feel and need your love very much. Your prayers and texts are sustaining us as well as the meals that are being dropped off. Kate and Kat set up a link to sign up if you would like to bless our family in this very special way.

…..

I am glad my favorite color is gray, because you know what it means?

More. More unknown. More trust. More love. More time.

More time.

And I will take all the time I can get.

13 thoughts on “Gray

  1. Praise the Lord our God for the time you have had with Jayden. How fortunate you are. Every day has been a gift of God. As we pass through this brief “vapor” we call human life, we know that God has blessed and continues to bless Jayden and you, here, in eternity present, and into eternity future, as He does ALL that are His through faith in Christ Jesus. For we know:

    “. . . without faith it is impossible to please Him. For he that cometh to God must believe that He is, and that He is a rewarder of those who diligently seek Him (receive His Word, even daily). Hebrews 11:6

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  2. Stefanie you are so truly brave and strong. I am praying for your family. Thinking of you and Justin and your precious babies. 🙏💕

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  3. Your gray is most beautiful. The place where we love deeply, and wait expectantly knowing that we have learned more in the journey than most learn in a lifetime. Praying His peace continues to surround your heart and home.

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  4. Gray was the color of the week in my classroom. I love Gray. I find it soothing. Some of my favorite animals are gray..elephants and dolphins. They have a peace about them and are social. Just like Jayden has a peace about him and enjoys socializing. Everyone knows that Jayden can calm their anxiety. People want to be around Jayden because he makes them smile, laugh and feel loved. I am blessed beyond belief by having Jayden in my life. James and I are lifting your family up in prayer.

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  5. Stephanie, been watching your family journey for a long time and your faith, God’s strength—lifting all of you up in prayer now.

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  6. Thank you for your honesty. This is so beautifully written. Fervent prayers for your family- that you remain in that peaceful place as long as possible.

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  7. Hugs to you, dear Momma.. God’s peace and gentleness to our soul is hard to describe because words seem flat compared to the reality of His comfort in His Presence. Our grandson, Wesley, lives with Hunter’s Syndrome and the treasure of his life that blossoms through his limitations in body is a heavenly treasure experienced now. When his new normal changes, it changes me without my permission. God is always present to help me adjust to the new normal. A new normal of peace that passes all understanding. Thank you for sharing your thoughts, it helps me with my own.

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