Tuesday, August 16, 2011

Skylar Marie Jones

It is with heavy hearts as we share the news that our precious Skylar is no longer with us. Kyle and I were able to hold her this morning as she took her last breath. We miss her more than words can express.

Our journey with SMA has been a long and tough one, but certainly not without joyous moments and full of love. It is because of that deep love that our hearts are hurting beyond belief right now. However, with that great pain comes great comfort in knowing that she is fully restored and present before our Lord Jesus in Heaven right now. As we continue to grieve, we will also continue to learn how to move forward, how to live and how to love. Skylar has taught us so much in her short little life (just shy of 21 months) and we are so grateful for the wonderful gift she was to us.

For those of you who have been impacted by Skylar, we are having a memorial for her this Saturday for all who want to come. It will be held at our church, Trinity Anglican Mission, at Two O'Clock in the afternoon. We've had lots of people ask already who to make donations to for SMA research instead of sending flowers and we're requesting donations be made to the Hope & Light Foundation. Our church is still accepting donations for our family expenses, but I think we have most of our costs covered now - we'll let you know if that changes.

Thank you all for your prayers and support throughout this long and intense journey. We will continue to need them as we find our way through the grieving process, but have already felt a peace and comfort beyond human understanding. Thank you for all who have sent text messages, emails and facebook messages. Please know that every word is being read, even if we don't respond. We feel so very blessed to have an incredible support system - including our doctors, nurses, church leaders and family, friends, neighbors and of course our own family.

Peace to you.

19 comments:

  1. Ashley, I am so sorry for your loss but grateful that you got to spend as much precious time with her as you did. You guys are in my thoughts.

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  2. I'm so sorry you lost your precious daughter. My prayers and thoughts are with you.

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  3. You may not know me. I am the older sister of Dan and Emily McKinney. I have been following the story of your beautiful girl. My sincere prayers are with you. I pray that Heavenly Father will comfort your aching heart and that He'll lift you up during this hard time.

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  4. My heart goes out to your family. Beautiful little Skyler will be missed. Much love, Nora'a Montana Grandma

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  5. Ashley, you're a great mom. Skylar is a beautiful little girl.
    -Aaron

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  6. I'll miss Skylar. She was one amazing young lady. Praying for you all.

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  7. I'm so sorry. You don't know me, but I've been a follower of your blog for a while as I have a similar condition to SMA. I'm thinking of you all.

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  8. “There is a sacredness in tears. They are messengers of overwhelming grief…and unspeakable love.” –Washington Irving

    We love you.

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  9. Kyle, Ashley I'm so sorry your sweet baby is not with you any more. And thrilled to know she's in the arms of Jesus, who loves children with a tender heart. Have you read the little book Heaven Is For Real? It may give you comfort and assurance. You have given so much love to that sweet child. She was blessed, as we all have been, to have been a part of your lives.
    God bless and give you peace beyond understanding in the months ahead.
    Love,
    Your doula, Guina

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  10. I love you guys. You should know that Skylar touched the hearts of many up here in Maryland. They all send there love as well. Those of my friends who pray, are praying for you now.

    All my love. <3

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  11. Sending much love and prayers...I am so very sorry... ((hugs))

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  12. Dear Kyle and Ashley,
    Like many other followers of your blog, you don't know me personally. I am Bob and Wendy Von Holt's niece.
    Thank you for sharing your story online. I am a mother of 2 girls, so my heart goes out to you as the heart of a parent.
    Our God is so sovereign and I know he will not only get you through this time, He will do great and mighty things through you, for His glory.
    We are praying for you.
    Much love in Christ,
    Sarah Collignon

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  13. Kyle and Ashley,

    The Lord sent my mom to your site through mutual friends you have this morning. I am so very sorry. Praying with you as you grieve with hope.

    Your daughter is absolutely beautiful! Praying God gives you glimpses of her life with Him.

    Love,
    Angie (Wilson) Dinn

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  14. May you have perfect Shalom. My heart is heavy for you and I pray for your comfort and joy in this time of loss. May Christ be with you.

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  15. Ashley and Kyle, I honestly do not know what to say, and I'm sure nothing will be of much help. I will say my heart was broken to tears when I heard the news of your precious Skylar. I will honestly be lifting you and your family/friends to our Lord. Please, PLEASE let me know if there is anything I can do. May Christ alone be your comfort. Be blessed.

    Alongside,
    Clay Williams

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  16. Ashley and Kyle,

    I am so very sorry for your loss. My heart aches because SMA has stolen yet another precious little life from us. Although we have never met, we held Skyler close to our hearts and in our prayers. Our little Denalli (SMA type II) even prayed for Skyler. We will continue to lift you guys up in prayer in the hours, days, weeks, months and years to come.

    With much love from another SMA family~
    Casey and Natosha Voss
    www.caringbridge.org/visit/denallivoss

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  17. You loved her so well. So very well.

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  18. praying for you two. God is no doubt going to do great things through this.

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  19. I am so so sorry for the passing of Skylar and so sorry that I am just hearing about it. I feel terrible. My heart goes out to you and we all send our prayers and love at this time and in the months to come. It is never easy to say good to our sweet darlings. I know that Skylar is happy and free!! Jonas is showing her the ropes in heaven. :) With all our love, Lindsey, Whit and Maggie

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