Letters to Taylor: On Anguish

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Letters to Taylor: On Anguish

Sweet Taylor,

I can hardly believe 3 months have passed since I have held you in my arms. The ache seems impossible for time to heal. The wound feels as gaping as the day you were diagnosed with MPS almost 18 years ago and as I’ve written to you before, I’ve come to realize that only heaven will fill that hole.

Last week your buddies aka siblings were out of school for spring break and we kept busy with cleaning and organizing projects, as well as a short trip to the zoo. At the end of the week, we travelled to visit your Papaw in the mountains and spent a glorious day mostly walking through the woods under sunny skies. Somehow when we arrived home, the realization hit me like a ton of bricks. You are no longer here.

The pain of watching you suffer cut me so deeply that I think my brain literally blocked it out for a few weeks after you died. I knew that you had died, but the suffering. That was another category of the process. Little by little, I’ve had flashbacks of your grimacing face and your gripping hand and I remember. I’m so glad you are no longer fighting disease. I am happy that your battle is over, and the victory of heaven is yours.

The flashbacks have caused me to think a lot about suffering and the delicate job it was to care for you as you pushed on until you ran into the arms of Jesus. I’ve never handled suffering well. Whether it was my own pain or remaining close to someone else’s pain, I’ve struggled most of my life to draw near to situations that included affliction. Physical, mental or emotional distress is a place I’ve tried to stay away from. I’ve hidden from it, ran from it, and even pretended it wasn’t there when it was staring right back at me.

I’ve been thinking about the various hardships I’ve endured over my life. I’ve known God was close to me through my late teen years when I struggled with eye pain and received corneal transplants so that I didn’t lose my sight. I can remember crying out to the Lord through divorce and sensing that his presence was with me when it seemed I was alone as a single mom. I can visualize the day our family buried my precious mom and the confirmations God gave to my soul that I would see her again one day. Since the day you were born and through your diagnosis of terminal illness and each milestone afterward, the Lord has made himself known to me in so many ways.

But in my entire life, I’ve never known God as intimately as I have since those December days when your body and brain showed signs of disease taking over.  His Spirit felt closer than I’ve ever experienced in those last few days you were breathing. Since you left for heaven, I’ve pressed into his presence. I’ve had deep heart discussions with Him, both of us sharing our thoughts. We’ve argued, laughed, and cried. I’ve worshipped and lamented. He’s comforted and encouraged.

While my mama’s heart wishes that I could have been the one to bear your affliction, I understand more about adversity now than I ever did. Suffering is a result of a fallen world and the sin of man. Just as the God of heaven scooped into the dust of the ground to sculpt a human body and breathed into it a living spirit and soul, so does he scoop up the ashes, the fragmented remains of my heart, and begin to fashion them into something new. The best way to keep breathing is to not try to do it on my own, but to recognize the inhale and exhale of his holy breath, giving me life for another day.

I wanted you to know that I no longer shun suffering and I have you to thank for opening my eyes. I no longer just ache deeply in my soul for those afflicted and in need, but I find myself compelled to action more than ever before.

Suffering is a sacred opportunity. I can’t thank you enough for showing me the way to see it.

While the days move on, this vapor of life pales in comparison to eternity. I’ll see you again before long.

All my love,

Your Mommy

Letters to Taylor: On Growth

Letters to Taylor: On Change

Letters to Taylor: On Reminders

Letters to Taylor: On Lingering

Letters to Taylor: On Healing

Letters to Taylor: On Gifts in Grief


  1. Amy Englert says:

    I lost the inform on your seminar coming up this month (April 2019) in Ohio. I also lost my handicap daughter 4 years ago and I am still suffering deeply and have been finding a little bit of reassurance in your letters to Taylor.
    This past Christmas I wrote Sammie a letter which helped me some.
    Please forward the information on the seminar if it’s not too late. I really think it might help me.

  2. I know what you mean, I used to having anxiety about going away on trips because I knew when I came home it always hit me hard knowing my husband wasn’t here.
    Thank you for sharing the beautiful picture of you and Taylor ?

  3. Rachel
    Your words are a comfort to me even though I know you are going through a hard time. I lost my mother last year in July and yet it is so hard for me to express all the emotions I am feeling. I feel like it just happened yesterday and as I continue on, there is a big void that only my dear mama could fill. Reading your letters is such a comfort to me because I realize exactly what you are feeling. Although I have experience many heartaches throughout my life, losing my mom hit me like a ton of bricks. I think sometimes it’s easier to be in denial then to come to terms with the fact that she is no longer here with me and I won’t be able to talk to her or hear her voice. However, knowing that she is with the Lord with my dad, sister, and brothers, blesses me and gives me a sense of peace because I know my mama is in the hands of our Savior.

    You are truly a godsend and I pray that the Lord blesses you beyond what you can image and those times when you feel the emptiness because of your sweet Taylor, I pray that you would feel his presences so strong that you can hear his heart beat. I truly believe Taylor is perfect and complete just like my mama. God Bless you for continuing to do God’s work and blessing those of us who are encouraged by your letters, devotions, and inspiration.

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