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Letters to Taylor: On Heaven

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Letters to Taylor: On Heaven

I don’t know how you do it.

My girl,

We made it through your shower and now you are sleeping peacefully. Friday was such a good day that I thought maybe you were on an upswing. After not smiling for months, you smiled right at me! Your eyes said, “Yes, you’re my mom and I love you.” You did the same thing for Daddy. So precious.

Don’t worry; I heard you loud and clear, even though you haven’t been able to say a word in over 13 years. While I basked in the sweetness of that moment, and though it filled me with hope, Saturday morning, you were different again.

Disease is causing your brain to do its own thing outside of your control. Your arms fly around randomly, and your legs kick up in the air without purpose. The last few days, you are startling easily, even with the gentlest approach. You’re struggling to swallow, and we are back to using the dropper at times, though it’s hit or miss. You’ve lost so much weight that I’m afraid to hold you up. Your bones peek through where they shouldn’t, and your skin is paper thin in places.

I’ve heard so many people say in the last few months: “I don’t know how you do it.” I never have an appropriate response. Because there is no other choice. My love for you chooses to walk through hard things with grace. My heart for you demands strength be infused from my spirit to yours. The truth is that I don’t know how you do it.

We keep going because God has a plan. I won’t pretend to understand it fully. But the smiles you gave us on Friday? A reminder that He still works miracles.

I have something I really need to tell you.

When you are ready, and God gives you a new heartbeat, one that won’t stop for eternity, then I don’t want you to stay here for me. Okay?  This world is only a temporary place.

While you have made it lovely in so many ways, and you’ve taught me so much, your body is worn out and your brain is confused.

Stay as long as you need. But I want you to know that you’re going to be so much better once you leave here. I can’t wrap my head around how incredible it will be for you to walk and talk and sing again.

Disease has not been our friend, but it has been our teacher. The last lesson is remembering that the wonderful life we experience on this earth is limited.

So, when you’ve reached your limit and Jesus calls for you, don’t keep fighting for me and don’t be afraid. Just run into His arms. He loves you even more than I do and He’s going to make you all better. That’s something I can’t do for you and something I can’t do here.

After you see Jesus, I have no doubt that your Grandma Charlotte will be next in line. She is probably about to bust down heaven’s gates to get her arms around you once again. There’s also one, and maybe two, sisters or brothers you never knew. And you have dozens of friends there too. Danny, Brianna, the other Danny, Megan, the list could go on and on. Hug them all extra tight for me and tell them when it’s my turn, I’ll be home.

Until you’re ready, we’ll just keep taking it one step at a time. The finish line can’t be too much farther ahead, but regardless of the miles, we know heaven awaits on the other side. It’s going to be so beautiful.

Rest in that.

I love you.

Mommy

 

Letters to Taylor: On Control

Letters to Taylor: On Expectations

Letters to Taylor: On Anger

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  1. Oh Rachel, my heart is breaking with yours.

    “I’ve heard so many people say in the last few months: “I don’t know how you do it.” I never have an appropriate response. Because there is no other choice.”

    Truer words were never spoken in the hard places.

    May God continue to cover you and your family with ever deepening grace.

  2. We were just talking about heaven last night in our Griefshare group . God really wants me to know about heaven.

  4. What wonderful words from a living mother. I want to say “I don’t know where you get the strength from to go on “ but I know. There’s only one that can do that. It’s our Lord Jesus Christ.
    Keep the faith. And God Bless You.

  5. I want to print this precious letter and keep it close to my heart. Kiss Taylor and tell her Ms Donna is call her before the Lord for Mercy and Grace. Rachel, I hope to some day meet you and hug your neck. God Bless You.

  7. Giving thanks with you that he heals the broken hearted, meets us with grace in the very hard places in this life and that hope, healing and joy await your beautiful Taylor!

  8. I pray she lives decades longer, she’s such a sweet girl.
    But at the same time, I pray that what is in His will will be done when He is ready.
    Taylor is an awesome girl with epic awesome parents and community who loves her and her family.

    Don’t give up, Rachel!

  10. Such a wonderfuk message of love, faith and understanding. God is truly in the midst of your family, holding you up and Giving you His Grace for strenght to give Taylor the joy and love of her family. We are one with you in prayers . Take heart Rachel x

  11. Wow, your strength and faith you hold onto through this journey is more than words can describe. Your and amazing mother and woman of God. The valley that you have walked for so long ..my prayer for you and your family is to be covered with the blanket of Gods arms to hold each one of you through this time and wait for Taylor to reach her heavenly home.
    Blessings

  12. This letter expresses exactly how we felt about Danny as he was dying. We were sad to be losing him but we knew he would soon be happy and healthy, able to talk, walk ,think clearly, play basketball, ride a bike, jump on a trampoline, and read. I’m not sure the Danny you mentioned is my Danny, but I’m sure he will be looking for her when she arrives. Run to His open arms, Rachel! Then look for our Danny!

  14. I have a son with special needs, and people also say, I don’t know how you do it. All I can say is I am his mother of course I do it, without thought. People who take care of spouses, or their parents, I don’t know how they do it. I haven’t had to walk the road your going down, but I hope I can do it with your grace. You’re an awesome mom, God bless you and give you the strength.

  15. My heart and prayers go out to Taylor, you and the rest of the family. I know it is not easy. It’s been almost 4 yrs since my granddaughter passed with MPS I and I reached out to you. Your words were and still are comforting. I picture my granddaughter healed, laughing and doing all things that she could not with us; And being held in God’s arms. You are stronger than you know and God is with you always.

  16. Rachel
    This is such a beautiful way to connect with your precious daughter. This letter touched my heart deeply. Thank you for sharing your journey.
    May the peace of God which surpasses understanding guard both your hearts and minds.