Letters to Taylor: On Expectations

God put writing in my DNA. I don’t quite understand it, but He did. So while our family walks this journey of Taylor’s progressively slow decline, I felt impressed to write letters to my girl. I decided she would want me to share them with you.

Letters to Taylor: On Expectations

You are different than the baby girl I prayed for.

I wish I could do something. Anything. But instead, I sit here by your bed, watching you struggle to be comfortable, listening to your cry. The doctor told me yesterday that this could go on for years. What a horrible thought driven into my head. Years of this? I didn’t think I could handle even a few days after your diagnosis, yet here we are, 22 years of living with mucopolysaccharidoses. That word has been so many things in our lives. A disease. A curse. A joke. A prayer. A blessing.

You’ve never been able to logically understand a lot of what happens in this world. Yet you’ve made it  a better place. I decided to start writing these letters to you because I don’t know what else to do. I’ve been told not to worry about writing right now, to focus on spending time with you, yet there is very little we can do together. We listen to music because you’ve always loved it. I’ll be honest; I don’t sing nearly as much as I did when you could sing too. And we still watch the Food Network. Food has always brought you joy. Me too. It’s interesting how life goes on, even when death hovers.

Yesterday was Halloween. Daddy and I went trick or treating with Samuel and Tessa. When you were four years old, you dressed as a neon clown. I can still see the rainbow wig bobbing back and forth as we walked through the neighborhood. You had such a cool way of shortening your thanks for the candy. Instead of saying “Thank you,” you always said, “Thank you welcome.” It seemed as if you purposefully shortened the conversation, giving so much thanks that you just took care of the “You’re welcome” too.

I am doing my best not to spend your last days on earth soaked in sorrow. While your body is weak and frail, wasting away, I want to remind you (and myself) of the good days. The joyful, beautiful days we’ve experienced together. Even some of the bad days we’ve had are beautiful. The tapestry of both has weaved a wonderful life and you’ve taught me so much.

I always dreamed of having a little girl and then you arrived. I thought I would be teaching you ABC’s and 123’s. I counted on showing you all the wonderful ways to live, just as my mama taught me. But we’ve lived a very different life. Instead of teaching you, God sent you to teach me. And I’m so grateful for you.

Good night, my sweet girl. As long as God gives breath, I’ll see you in the morning.

Your Mommy

Letters to Taylor: On Control

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36 Comments

  1. Kim Davis says:

    Dear Rachel,

    Thank you for sharing these very precious letters and moments that you have with your Taylor. My heart is with you. I am praying for you. Know that you are loved. Jesus is right beside you, holding you and your sweet Taylor. May you feel His love and presence surrounding you today.

    Much love, Kim

  2. WOW !!! All I can say is you and your family are in my prayers – May God give you comfort and His peace. Much love!

  3. Thank you for sharing this Rachel. Thank you for being real and vulnerable by sharing your heart. You and your family are in my prayers.

  4. I admire you so much youre brave and really an Angel on earth Thank you God is with you and your family

  5. Thank you for sharing, God has truly blessed you with an amazing gift, that despite your challenges you have stood strong and committed to what God has called you to do. May He continue to carry you and your family as you continue through this path, stay strong in Him. God bless you, the church prayer team will be praying for you and your family

  6. As a woman l know how it is to face such challenges in life. However, with God all things are possible. He makes a way where there is no way. honestly God can not give you what you can not be able to handle. Keep on your faith and cast all your care upon him for he cares for you and Taylor. Thank you for sharing your struggles with us. We are motivated through all challenges we are encountering also to keep on our faith in God. We are with you as a family in Christ. God bless you and your family.

  7. Rachel,
    I have asked my friends and family to be in prayer for you . You’ve always been such an encourager to me. Even encouragers need to be lifted up.

    Lord bless you every step of this difficult road.

    I want to leave you with something that helped me tremendously when I said goodbye to a loved one. I know it’s NO comparison to losing your baby girl, but hope it can provide a little bit of comfort. (It’s a hospice prayer) Knowing Our loving creator awaits us the second we leave this earth is the biggest gift of salvation.

    Gone from my sight
    I am standing upon the seashore. A ship, at my side,
    spreads her white sails to the moving breeze and starts
    for the blue ocean. She is an object of beauty and strength.
    I stand and watch her until, at length, she hangs like a speck
    of white cloud just where the sea and sky come to mingle with each other.

    Then, someone at my side says, “There, she is gone.”

    Gone where?

    Gone from my sight. That is all. She is just as large in mast,
    hull and spar as she was when she left my side.
    And, she is just as able to bear her load of living freight to her destined port.
    Her diminished size is in me — not in her.

    And, just at the moment when someone says, “There, she is gone,”
    there are other eyes watching her coming, and other voices
    ready to take up the glad shout, “Here she comes!”

  8. My heart goes out to you as a mother to watch your child go through this …and all those feeling, thoughts and prayers that you have shared with God ..
    And as a woman of God your faith has remained steady and on course …that is amazing to me and bless you beyond measure for your strength and faith and continue to stay strong through to the end of your daughters journey here into eternity …
    There are no words to discribe this but to say you are surly Jesus example in the flesh..

    Thank you for sharing your personal heart with us…and as this journey unfolds may you find the peace and comfort from papa God who is and always will be there to see your daughter through to her heavenly home and for you as you release her to go and to be able to rest as your nest is empty …
    ?

  9. B4michelle says:

    Sweet Taylor, I don’t know you but my mommy heart sends hugs and hugs and prayers for peaceful days. Your mommy is blessed with the power of sharing deeply, richly what a treasure you are. Mommy’s are always blessed if they have a child to love… even if only for a season. I can not imagine but I can pray to the One who knit you together in the womb, who numbered every hair on your head, and who said you Taylor, YOU ARE fearfully and wonderfully made. Because God blessed you with this earthly mother I know you know this to be true.
    Hugs love and prayers.
    A mom

  10. Chuck Lukondi says:

    So well written – God Bless!

  11. Rachel,

    Thank you for sharing such an intimate letter with us. You are a strong and courageous woman of God! And, Taylor is so blessed to have you for a mother. It most definitely can’t be easy, seeing this disease take her. I will keep you and your precious Taylor , along with all your family, in my prayers.

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