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

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.

  12. Linda Harrington says:

    I did not have to endure as long as you have. But had to watch my younger sister suffer. At the age of 56 she passed away, she had the body of an 80 year old. The blessing in that was, she became very sweet and tender and the mind of a child. I believe she came to know the Lord. Her heart was very hard before that. But I watched for years, and prayed for years for her heart to be softened. Then she was diagnosed with, a very long word, and it took over her body. She had stroke after stroke. I know this doesn’t compare to what you have gone through for the last 22 years, but I feel I can understand some of what you feel and can pray for some of the comfort you and your family and sweet Taylor needs. We will never understand on this side of heaven. That’s all I keep telling myself. Love you sweet Rachel, in Christ’s everlasting love.

  13. THANK YOU FOR SHARING THIS VERY DIFFICULT PART OF LIFE. YOU INSPIRE ME TO KEEP ON KEEPING ON. I LOVE YOU BLOG….AND CHALLENGES… THEY ARE SUCH A BLESSING

  14. Thank you for sharing your journey. Your showcase of Faith even in the midst of pain is inspiring to others. I pray for God’s continued presence and peace for you, Taylor, and your family.

  15. He truly never wastes our sorrows. For that I am so thankful.
    I am so very sorry for the pain in your mama heart and yet even in this you bring blessings to others.
    Thank you for your compassion and obedience even when life doesn’t make sense.
    My prayers are for you and your beloved daughter to know the gentle comfort of our Immanuel.
    Thank you and God Bless you always.

  16. Sharon Wrigley says:

    I believe the Lord is using both you and Taylor to teach all of us something . Thank you go being willing ! I am praying for Taylor and your family!!!❤️?❤️

  17. Thank you for the beautiful post. My prayers are with you and your family especially your sweet girl. God bless and keep you all.

  18. Lucretia Geer says:

    Bless your heart. Almost 20 years ago we lost a beautiful daughter to fatal asthma syndrome. I have often wondered “why” this had to happen to our sunshine girl; however, I have come to realize that when I get to heaven and see Jesus face to face, AND see our Leslie again, I won’t care “why” anything happened on earth. We shall share eternity together! Prayers from a mom who understands.❤️

  19. Stephanie says:

    Rachel,
    You are an amazing mom . I love the way the Lord gives you peace in the midst of it all to even write a letter to your sweet little girl.
    I can imagine what you’re going through. My heart and prayers go out to you and your family.
    I wish I could give you a big hug right now.
    You can’t imagine how many times I’ve been encouraged by your writting.
    Our loving Father will continue to give you strength, peace and joy.

    Sending love and prayers your way

  20. How beautiful are the words! God gave you these words for a purpose–to comfort you and establish Taylor. Perhaps one day He will lead you to publish letters to Taylor to encourage someone else. God keep you and Taylor close to His heart.

  21. Sing to her Rachel. Use your sweet voice to guide her forward. Jesus loves her this you know!! Praying you forward.

    In Christ,

    Lisa

  22. Nancy Whitehurst says:

    May God continue to give you and Taylor the strength to finish the race.
    God gave you the perfect gift!
    To God be the glory.

  23. Sally Hodges says:

    This is such a sweet letter. From what I’ve read here and few bits and pieces here and there, Taylor has been a blessing to you even through her illness. Praying for you and your family and may her last days be sweet. I agree with Ms. Roth, sing to her, God will allow her to hear you, though you won’t know it yourself. God bless.

  24. Rachel,
    How sweet. You and your family are in my prayers.

  25. Kelly Lee says:

    Dear Rachel
    Thank you for sharing such sweet, heartbreaking and loving stories and memories. God loves you and Taylor so much. Something very beautiful waits for you both! You continue to be in my prayers.
    Blessings,
    Kelly

  26. I have followed you for about a year, I am deeply touched that you would share this most intimate with your readers. Thank you, stay strong and consider singing to Taylor; it will be a beautiful tribute to the fun you shared with her and also a way to stay connected to Him.
    Keeping you in my prayers,

    Your sister in Christ

  27. Patricia Lloyd says:

    Our hearts go out to you for our Holy Heavenly Father to heal your precious gift of your daughter Taylor and your family at this very difficult time in Jesus Mighty Name. We stand in Love and cry out to Jesus our Amazing Healer to set you all free from this pain and heartbreak in your family. Thankyou you Lord you are perfect, righteous, faithful , truthful and full of justice. we take you at your word, you always do with us what is right. You all are so Brave and Courageous, God Bless You in every way. The Power of HIs Love, Hope and Faith fill you, to Praise His Holy Name. xxx

  28. Rachel so precious . I agree with Karen sing to Taylor. Thank you so much for sharing. Your family is always in my prayers .God bless Taylor and your family .???

  29. Karen Roth says:

    So very precious ??.

    Sing for Taylor, Mama. Let the last voice and words that she hears be those that will keep you both in the now and what will carry this precious young woman into the arms of our Father God. Bless her.

    I am keeping you in my prayers ??

  30. Evelyn Cortez says:

    God bless your family, Rachel. Only God can give U that resolve to continue being a good Mom to Taylor!

  31. Oh Rachel, how heartbreaking and yet uplifting this was for me to read. I pray for you and Taylor and God’s perfect will to be done. I love reading your words as your faith/hope are something I long for in my life.

    Much prayers & love
    Jennifer Lee

  32. What a beautiful letter. Thank you. As I cry for your pain, I am encouraged to keep on and look for and celebrate each moment with my special needs son. You have helped me take one more step. Your book ministered much life to me as well. I’m grateful for Girlfriends in God that introduced me to you. Thank you for sharing. I will be praying for you.

  33. Diane Thomas says:

    So beautifully written ? I definitely agree with writing. When I was diagnosed with Muscular Dystrophy 25 years ago the 2 weeks later finding out I was pregnant with my youngest son, writing letters to God gave me comfort and kept my focus on God and His blessings.
    Your letter is beautiful and I can see what a precious blessing she has been ?

  34. Therese Annett says:

    What a beautiful, raw and heartbreaking letter. You are so brave and strong to be able to share that. I pray that God envelopes you, your daughter and all loved ones who are in this with you right now, with His saturating perfect love that casts out all fear, and with His peace that surpasses all understanding. Thank you for being open and honest, and know that you have family in Christ lifting you up in prayer from all around this globe. Sending you a heartfelt hug from Norway ❤️

  35. Jean Smith says:

    As I read this I have tears in my eyes. Rachel, you are a special women with so many challenges that you have overcome and sharing this with others is helpful to those who are on the same path. My first born son was born with a rare birth defect that almost killed him. He had a multitude of surgeries during the first years of his life. My firstborn weathered through so much but persevered through it all. None the less the path as a mother of a child who is fragile is not an easy one to be on, yet you have so many people praying for you and your daughter. When I would get overwhelmed with how things were going; my mother-in-law always would tell me, “God won’t give you more than you can handle” It helped me a lot to know that God is always with me, just as he is always with you.

  36. Thank you for sharing . I wish, I had half of the courage to face things that you do. God bless. My family’s thoughts and prayers are with you and your family. S

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