Letters to Taylor: On Control

Letters to Taylor: On Control

You’ve lived each day with your body refusing to be under your control.

Morning, Tay. I’m thinking you’ll wake up any minute, but it’s strange how I keep checking to see if you are still breathing. My eyes play tricks on me because the rise and fall of your chest is barely there. Paranoid much? I’ve discovered that I’m not afraid of death itself as much as I fight the fear of not knowing when it will come.

Yesterday when the palliative care team came by to see you, I had the main floor of the house immaculate. Before you were born, I didn’t go to bed unless the toilet paper was hanging correctly. No joke. I just about drove myself crazy with having every little thing in order. It was no different yesterday, everything was in its place. Of course, our tribe was all at work and school, so no one was here to move anything. I soaked in the glory of a clean house for two hours, until I remembered one of your preschool messes from years ago.

Somehow your Houdini-like skills had gotten the locked pantry open. I don’t know if you wanted to drink that bottle of syrup or grab a waffle to go with it. But you surely enjoyed it. You soaked your little toddler recliner’s interior with syrup (at least those fruit snacks you shoved inside weren’t lonely any more) and left a permanent hardened pool on the carpet. I tried every cleaner and spot removal method to no avail. I kind of miss that carpet.

One of the nurses mentioned that her daughter has a special needs child and her house is never sparkling clean! As if a clean house means I have my act together. It’s funny how easy it is to see one person’s control issues with collecting to be worse than another’s control issues of cleaning. What causes chaos for one brings comfort to another.

After you came into the world, it took me years to recognize that while order and cleanliness have their merits, they shouldn’t be the priority all the time. There are things more important. So much more important. Trust me, we won’t be on an episode of Hoarders any time soon. But when things feel out of control, I think we all try to control things the best we can. We totally forget that God is never out of control.

Disease has been reversing your skills one by one. First it was your voice. Then your songs. Gradually, your walking. Then sitting on your own. You want to remember how to drink from a sippy cup, but at times, your brain is forgetting how. If only I could take a drink for you. Somehow, though, you keep going. You haven’t smiled or laughed in weeks. Here you are, facing circumstances outside your control, yet moving on, day by day.

For so much of your life, you’ve been teaching me how to let go. I don’t think I’ve really learned the lesson yet. That’s why I’m still studying it.

Letting go of you will be the hardest thing I’ve ever had to do.

Your eyes just fluttered, and your arms are beginning to stretch so you’ll be awake soon. I’ll stop writing and make your oatmeal. I love you, Girlie.

Your Mommy

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21 Comments

  1. I am so touched by your letter to your beautiful daughter.You are such a courageous woman.I pray tha God will continue to give you peace that surpasses all understanding.

  2. Ohhhh, Rachel, these letters are SOOO beautiful and poignant and leave my soul weeping. Thank you for sharing your Precious Taylor with us. Please know that we are holding you all close in our hearts and especially in our prayers. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

  3. Thank you for sharing your letters to Taylor. This one really resonated with me. You have such a gift with words, Rachel, and I admire your ability to make such insightful connections. May
    God continue to bless Taylor and your entire family. I hope today reveals some unexpected beauty for Taylor and for you.

  4. thank you for sharing so so touching…

    Psalm 34:18 says “The Lord is close to the brokenhearted…”

  5. There is no greater beauty that a mother’s unconditional love. Thank you for your stories of prioritizing that which matters eternal. Praying with you.

  6. Lisa Soence says:

    Sweet Rachel, O the depth of love… I am thankful for the gift you left here on the ‘page’… I am praying for you, sweet Taylor, and your family with love.

  7. Thank you Rachel for sharing this very personal letter with us. You and Taylor are a blessing. Thanks for being such an inspiration and encouragement to trust God no matter what the circumstances in life look like. Prayers for your dear daughter and family.
    Joka (Fiji Islands)

  8. Michelle Miller says:

    Psalm 34:18 says “The Lord is close to the brokenhearted…”
    He holds you and your sweet Taylor in the palm of his hand and close to his heart. Thank you for allowing us to have this small glimpse into your extraordinary love, faith, and yes, even the loss. You show us, SO courageously, that while you are certainly human and feeling a ton of different things, you also remind us that His will be done. Please know that, as sisters in Christ, my heart and prayers are with you. Taylor’s beautiful divine purpose on this earth is being revealed beautifully through you and your love for her. May God bring you and your family comfort and peace. ♡

  9. Dear Rachel, My husband has Myasthenia Gravis, a sever neurological disease, that, at the present time,is under control. Several years ago he was going through a bad spell and, one day, I wrote in my journal,that I felt like I was sinking in quicksand. Then I had that aha moment. If you are in quicksand don’t struggle! The more you fight it, the deeper you will go, until you drown. Instead, be calm, do not struggle, float if you can and you will come to the shore. And, I believe this is the recipe for us when we feel out of control. Give all control to our Father God – we are not ever in control anyway. Letting Him take my hand, like a little child, and trusting that He knows best gave name such peace. You already know this, just know that you are not alone. With love and prayer.

  10. Christelle says:

    Upholding your beautiful Taylor and your family in prayer. May Our God give you more peace as you use your amazing gift. You are inspiring. Bless you

  11. Thank you for sharing your amazing/sad journey. I look at my problems and nothing compares to what you are going through with your Taylor. One thing I know is that our God is always Great and He will never abandon us even in the middle of the storm. Many blessings and I am praying for you and your family.

  12. Anna Boyle says:

    Wow….this is so precious, your words! I am a mother of a special needs child, she is now 28 years old and lives on her own. I remember the night she was born and the next morning the pediatrician comes in and tells us he is having an opthamalogist come in to check her eyes, he thought she might have cataracts! So when the opthamalogist comes in he tells us we have to go to Childrens Hospital in Pittsburgh tomorrow. I cried and cried and cried! Not knowing what God was doing…..she has been such a blessing in my life! She went to 4 years of college and has become an editor for an online curriculum. She loves to sing in the choir at St. Blaise Church. She loves to play with her nephew and he just adores her!!! I know that God has a special plan for the rest of her life, I know that he will send her an amazing young man for her to marry and have a family of her own! 🙂 Thank you for sharing your letter! You are such an inspiration.

  13. As I loaded this page it rolled up and down feeling in my heart then such peace…i pray this peace to you all. Thank you God!!! ?????

  14. I pray God’s blessings for your sweet Taylor, you and your family for every need of your hearts and lives every second of every day!!!

  15. Wow! Beautiful words!!!! I know God is your fortress and He always is with you and your family.

  16. John Hartman says:

    The Reason, We May Never Know, But God Knows all and will Bless a Lot of Folks around the World, and May are God In Jesus Name Work His will On You and Your Little Girl, !
    I am Praying For You and Family, Are Love !

  17. Thank you for sharing. Saying a prayer for your beautiful Taylor and the whole family!

  18. Bless you, Lady.

  19. My heart breaks for you. I cannot imagine your pain. Prayers for God to send comfort and peace to you all.

  20. Wow that is so nice and you are the one the STRONGEST person in have come in contact with, I have been praying for everyone in your family. Good is Good.
    And he has your back.

    1. You truly touched my heart on so many levels, prayers for all of you. Thank you for sharing, it does make a difference!

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