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I'm Shay! I’m a cookbook author, lifestyle blogger, travel agency owner, wife and mama who loves making every day special for my family.

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Ashby ·

A little “Ash” Wednesday.


A little “Ash” Wednesday for you today 🙂 .

Today, our superhero…

…is having procedure number 17.

Ugh.  I mean…what is there left to say?

We go, we get it handled, we come home, we get sick, we get better, we conquer and then mentally prepare to do it again.

A lot has been going on in Ashby’s little world lately, so I thought I’d share an update.  About a month or so ago, I mentioned that she is now also going to occupational therapy.  Friends, I had no idea just how much she needed it, and I am FOREVER grateful that we are doing it now.  We spend so much time and energy focusing on her right hand, that her poor left hand has been neglected.  Every time we visit the doctor (and she has three doctors who treat her), we all stare at that right hand, analyze the right hand, discuss the right hand and meanwhile, the left hand has been, well left out.  But now we know, the left hand needs some help!!  Over the weekend, we even had some specialized testing done through a diagnostician and the results were…we need some serious OT to help sweet Ashby out.

Here’s the problem: she is right handed, but due to her Klippel-Trenaunay Syndrome, is forced to use her left hand for most things…but she’s still a right handed (therefore left brained) person.  Which means, if you give her a letter to trace (like on a note card), she’ll use her right pointer finger to trace the letter, but then hand her a pencil and she’ll use her left hand to write the letter.  Apparently, that is very confusing to her brain and really makes things very difficult.  So, we are going to need lots and lots of OT to help sort that out.  It’s so wonderful that she’s able to use her right pointer finger (that’s a huge praise!), but it’s conflicting with her left hand (that she really needs to use all the time).  Does that make sense?

We are in love with her occupational therapist, so I know that between all of us, we can get this conquered, but it’s just another facet of the syndrome we were unaware of/unprepared for/uneducated about.  KTS affects people in many different places and even though I’m connecting with so many people with KTS and/or parents of kids with KTS, so many of them do not have it in their hand/arm (and even if they do, it might be affecting their non-dominant arm, so this wouldn’t apply), so we’re learning.

We were in the car driving home from Smith’s baseball game the other night, and we were in two cars.  Andrew had the bigs and I had the littles.  It was really dark outside, and we were cruisin’ down the road in silence when Ashby said, “Mom, am I going to have a special arm forever?”.  I told her that yes, she would, and she said, “Well, how I am going to hold my babies when I’m a mom?”.  Out of the mouths of babes, friends.  I don’t talk about this a lot, but really the fear is that Ashby won’t keep her arm.  It’s such a sobering reality that unfortunately, we are faced with every day, so I just pray for miracles, I pray for the advancement in medicine, and I pray that God continues to give her such a fighting spirit with a positive heart.  She’s fierce.  I pray that never goes away.

Okay, I’m sobbing at my desk now.  I better sign off.  Prayers appreciated. xo

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Comments

    • Tiffany Stegall says

      I’m crying right along with you. We serve a big God. Praying for her and her sweet little heart. ❤️

      • Jess B says

        Oh the preciousness of that girl! I pray for a miracle too! That she will be healed and that someday her arms will be full of her own sweet babies ❤️

      • Mandy says

        When the time is right, maybe you could tell her about Bethany Hamilton, the surfer who lost her arm as a young girl. She is now a beautiful mama. And an awesome Christian role model as well ? Prayers for your girl.

    • Jennifer says

      Praying for Ashby and all of you! My son has Cystic Fibrosis and believe me I understand the struggle. We were recently told to start planning for a double lung transplant and that he would never be able to have children of his own. We also continually pry for advancements in medicine. Stay strong for that sweet girl ❤️

    • Kasie Miller says

      Oh my goodness-my heart just breaks for you all. Sweet Ashby has such a beautiful soul and I pray that as much as she feels your love and support through this, that you guys as parents feel that same love and support from your Christian family and from our Heavely Father—who loves Ashby more than we can ever imagine.

      • Nicole DiDonato says

        Praying for that sweet girl. God’s mercy is so great; I know He hears the prayers for her. Xoxo

  4. Beth K says

    Our God is a big big God! Praying he keeps Ashby safe today and everyday and has a special plan for her!

    • Lisa says

      May God sheild her from this disease and heal her. Wrap this sweet family in Your arms.

  5. Annette says

    As a sister in Christ, I just prayed all of those things with you.
    Peace and grace to you all today.

  7. Rebecca says

    I almost didn’t comment, because really what can be said that will help? But I know that support is huge and even more amazing is that God hears our prayers.
    So I will be praying for Ashby, the doctors, and your family!

  8. Laura says

    I heard a friend say when her child was diagnosed as deaf, they didn’t know if he could make it in a regular school. They didn’t know if he could make friends in a regular school. Didn’t know if he could hold down a regular job. Well, last year, he graduated from a top college with a full time job lined up and had 50 friends at his graduation party. She said she never in her wildest prayers imagined that would happen. Reminds me of the verse you always pray about how God will do more than we can imagine. Just wanted to encourage you that Ashby has amazed you so far and I bet she will continue to conquer!

    • Emily Winchester says

      Praying for sweet Ashby. Her ferocity is I spring and your love of her such an amazing testament. The lord sure knew what he was doing when he made her yours. Love and prayers to you all?

    • Lauren Vause says

      My sister is hearing impaired. When she was little (She is going to be 33 in a month) my parents had her in a special school and sign language classes. She hated it! She then went to a public school, had to wear a thing (Forgot the name) to hear the teacher as she could hear in one ear with the hearing aid but completely deaf in the other ear. Doctors told my parents she would never talk or amount to anything. Well, she was an all American high school soccer player, played for the Olympic Development team in soccer and traveled and played in Germany. Played college soccer on full ride scholarship, Deans list and more in college. Went back a few years ago and graduated with a BSN and is now a traveling nurse. Your friend and Ashby will be great examples in this world! True fighters and people are looking up to them! 🙂

  9. Sheaffer Sims says

    Oh, man. This one snuck up on me. I can’t believe it’s already time for another surgery. This was a beautiful post about your sweet, precious, thoughtful and wonderfully BRAVE girl. Love y’all, and I’m stopping to pray right now.

  10. Jamie says

    Praying for sweet Ashby, and for your family as you all help her through her procedure and recovery. I’m so glad OT is helping her, so many prayers for healing, comfort and peace ❤️

    • Erin says

      Our God is the God of miracles. He hasn’t changed. God can HEAL her body, Shay. He can do this!!!! Praying for her.

  13. Eden says

    Ashby is such a super hero! Keeping her in my prayers! God is handing her and your family a big challenge but also the ability to handle these challenges in an amazing way! I pray that she gets to keep her arm. Bethany Hamilton is an amazing surfer and mom and proof of an incredible life with one arm. Also, seeing your family has inspired my fiancé and I to adopt! Also also, I’m training to be a pediatrician and hope to help kiddos like Ashby!

  15. Lauren says

    Praying for you and your family. I just gave birth to a baby boy and shortly after we found out he has a rare genetic metabolic disorder called PKU. It’s treatable and very manageable with diet meaning he’ll live a normal life without impairment but I know we’ll have a lot of conversations about why he can’t have things or be like other kids and at first the thought was devastating. I’ve been following your story for a long time and honestly thought of you and how strong Ashby is and how I want my son to be the same. Thank you for sharing your strength and just know that I honestly look up to both of you and I’m using your story as a model for how to raise my own son and be strong for him especially with the visits to children’s hospital and the questions I know he’ll have. You guys are doing great ? and are such role models.

  16. Susan says

    Praying for all of you and sweet Ashby. One step at a time. So happy she is getting OT. You all will be on my heart and in my prayers today.

  18. Nanxi says

    Hey Shay,

    This is not the same condition, but back in high school, I knew someone who didn’t have most of one arm. He was able to function like everyone else (with sone modifications) – he played tennis, he drove, etc. I’m sure he had to work really hard to get there, but having one arm didn’t slow him down. I hope this gives you some encouragement even if the worst does happen! Because at the end of the day, sweet Ashby has you guys to help her figure it out.

  20. Debbie Hibbert says

    Wow! What you said, all that you said, that will be my prayer for your sweet girl. God knew Ashby before she was born, and He knew she’d be growing up in McKinney, TX, with you and Andrew, Kensington, Smith and Madely. And knowing all of that makes my heart so happy … because it gives me a huge confidence, that God has AMAZING plans for Ashby’s future! Thank you for sharing this Shay … I count it a privilege that I can pray for her, and you and Andrew too.

  21. Amy Heinl says

    I will be lifting this beautiful warrior princess in prayer. She definitely is a living breathing example of how having faith can move mountains and I believe she will do that. I am praying that the effects of the procedure are minimal and that the after sickness passes quickly. Will be sending prayers of strength and comfort

  22. Danielle Gilboy says

    Praying for you and your sweet girl. As a pediatric OT myself, I am confident this will help her. Prayers for a smooth procedure today!

  24. Mary Ann says

    Joining with you in prayer this morning! May God cover you and Ashby with His strength, peace and presence today. May He be tangible to you both today in small and large ways. Believing the best is ahead for her, and she will continue to have a well of courage, hope and perseverance to draw from in every season of life. This post brought me to tears this morning. I have read you daily since Sean on the Bachelor, and do not often comment, but wanted you to know I am one of, I am sure many, that root for your family.

  25. Narci says

    I just love that precious, brave girl and her incredible mama too. Praying for Ashby this morning! She is SO FIERCE.

  28. Ramona says

    Oh my goodness! I’m crying too! We just got to keep the faith and trust God, He knows the plan and we have to have faith. I’m surrounding all of y’all with love, peace and prayers!

  29. Alexis deZayas says

    Sending prayers to sweet Ashby and to you too. God has such a big plan for that girl!

  32. Marissa says

    Sending prayers for sweet Ashby! I appreciate you sharing her story. She is so incredibly inspiring and it was a message I needed to receive today. Xoxo

  33. Erika Slaughter says

    Now everyone’s crying! Sweet Ashby! We love that girl! Praying big for her today! XO

  36. Lisa H says

    Prayers for your sweet girl!!! She is so brave and so fierce. I’m an adult and can’t even imagine going through what your precious girl is going through…..and yet she always seems to have a smile on her beautiful face. God is so good, all of the time. Thoughts and prayers for the doctors, your family, but most of all your angel girl….she’s got this!!!

  37. Laura m says

    oh I’m crying now too. Hoping for lots of answers for you both soon. We live in China and I’m thankful she not only has a family now but getting all the care she needs and deserves.

  38. Amanda @ Cupcake N Dreams says

    Sending so much love and prayers for Ashby!! She is such a special little girl with a big heart! Wish I could give you and her hugs!
    xoxo
    Amanda @ Cupcake N Dreams

  39. Melissa Terry says

    Bless her heart…and yours! Sending prayers and love today to your sweet girl.

  41. Katherine Darlington says

    I’m sobbing at my desk too! I will definitely pray for Ashby, for you and the rest of her family and anyone that encounters her. My lifelong friend Kevin has KTS and his R side of his face is affected and he is a doctor. He is the most brilliant person I know and he has a wonderful life and challenges that have made him who he is today. He’s had this and we are 55 now and I know when patients first see him, they have facial expressions that he sees. Ashby is a happy little girl with characteristics that will lead her well through her life. Jesus has this, afterall he led 2 wonderful parents straight to her so that’s proof!

    • Susy says

      For the Lord thy God will hold thy right hand, saying unto thee, Fear not; I will help thee. Isaiah 41:13.
      Ashby has been blessed with a mother and family in which she will always feel safe and loved! You give her so much strength!

  43. Rachel says

    I am praying and expecting good results for Ashby- He makes ways when we see no ways and He is the God of the impossible! Also praying for your mama heart…it’s hard, I know…

  44. Kim Hankins says

    Hi Shay,
    I’m a long time follower who rarely comments but I wanted to share something today.
    It was no accident that Ashby found her way across the world to you. She is fierce because God put her in your family. YOU are fierce Shay.
    I have 3 kids of my own and there is always something to worry about. I am always praying but I came across this one day and I find it very comforting when I am stressing about the future. Sometimes we project ourselves into the future and worry but we need to project God into the future too.
    “Have no fear for what tomorrow may bring, the same loving God who cares for you today will take care of you tomorrow and every day. He will either shield you from suffering or give you unfailing strength to bear it. Be at peace, then, and put aside all anxious thoughts and imaginations.” (St. Francis de Sales)
    The same God who brought Ashby across the world to you will be there to help you and Ashby through every procedure and whatever may happen with her arm. Don’t worry. He’s got this.
    Sending prayers your way.
    Kim

    • Donna says

      This was beautifully written. My sentiments exactly Shay.
      Sending sweet Ashby prayers and strength. She sure is a very strong warrior! What an inspiration to all of she is with her strength and joy for life despite all she is going through.

  46. Brooke Richardson says

    Oh my gosh! First off, Ashby is a superhero and always will be. I’ll be praying for her heart and spirit especially as this continues on and on. She is one tough cookie but I can only imagine the thoughts and feelings she has about it. She is such an inspiration. We love her so much!

  49. Emily K. says

    Well, I’m crying with you this morning! Her spirit shines so bright. Sending lots of prayers for her today and for medical miracles in the future.

  50. Carrie says

    Have you had an educational evaluation for OT through your school district? The perspective from an OT eval through the district can be different. If she qualifies at school too then of course she would have more support. I am a special Ed teacher so that is where I am coming from. I also have a kiddo with some needs.

  51. Sonia says

    Heavenly Father,
    I lift Ashby to you dear Lord. Ashby will be going through another procedure today and I pray that you place peace in her heart and your loving arms around her for comfort. Lord, you love Ashby so much, beyond anything we can comprehend. It is that steadfast love that will help her through this.
    Father, please bring peace and comfort to Shay and her mama heart. So thankful and grateful that you lead the Shull family to Ashby as they have been exactly who she has needed through all of this. Especially guiding precious Ashby to you Father.
    Praying for the doctors, nurses and for the Shull family and friends who will come together to support sweet Ashby. Praying that Ashby knows how loved she is.

    Thank you for sharing with us Shay. Sending hugs to you all xxx.

  52. Michelle Nobbe says

    Prayers for your sweet girl as well as you and Andrew! What a fighter she is and God is doing and will do amazing things through her!

  53. Valerie says

    Virtual hugs for you, Shay, and little Ashby! Praying for the both of you as you go through this. God is in control and he has great things in store for her life, and your’s!
    “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

  54. Catol. G. says

    Shay, I don’t comment here often, but today I just want to tell you what a gift you and Andrew are to that sweet girl. I am a Mom of of three and my youngest needed a liver transplant at 18 months. Hardest thing our family ever went through, but today he is twenty-four and doing great. I can not tell you all the blessings and God moments that have come through this experience over the years, some in the most unexpected places. Ashby has ALREADY touched so many of us and you and Andrew have, too. Stay STRONG and TRUST Jesus, Ashby is going to amaze you beyond belief! Praying for you all today.

    • Carol says

      So many people praying to uplift you..how fortunate and blessed you are.
      When I was 12 my parents were finally forced to consent to the amputation of my 9 year old brothers leg (above the knee) because of a congenital issue. They tried to avoid this is his entire life to that point. In my selfish 12 year old way it seemed like everything revolved around Jackson’s leg. After the amputation my parents were able to concentrate on what he COULD do rather than not due…not about the fear of *what if he falls….what if…?..*.
      Jackson flourished…he dated (a lot)…he is finishing his surgical residency this summer..he is engaged to be married.
      My mother once admitted that when the decision was made to ampute,while she was scared,she felt uplifted, as if she was no longer fighting the impossible. Jesus took the wheel.
      I wish you peace.

  58. Melissa says

    Tears. What a sweet, sweet girl to be wondering how she will take care of her babies someday. Praying for her today as she goes in for another surgery, praying for you all to stay strong and praying for guidance for her OT as she treats Ashby’s left hand.

  62. MelanieL says

    I’m choked up about her questions in the car…praying for Ashby and your family.

  64. Becky says

    Praying for Ashby and for you. The first thing that came to mind reading your post was the surfer, Bethany Hamilton. She’s a fighter with a strong faith. Some day her book and movie may be helpful – very inspirational. And she is married now with two babies!
    What a wonderful mom you are. Your kiddos are very blessed.

  66. Kellie says

    I’m not sure if you have ever shown Ashby Lauren Scruggs Kennedy’s blog/instagram, but she lost her arm in a plane propeller accident, and maybe would be super encouraging to Ashby to see someone thriving after limb loss? Lauren has a strong faith and seems like the sweetest person.

  67. Hope says

    Praying without ceasing. What a huge impact Ashby has already had and what an amazing story God is weaving for her to share for His glory. You are all loved by so many

  68. Sandra says

    I work with a lady who was born with only one arm and she is a warrior that can do anything. Like she has even helped her husband work on their roof! She also had 2 children that are now grown so tell sweet Ashby that she will be able to anything she wants. I’m crying this morning too…only b/c I know this is a real concern for Ashby’s sweet heart, but I also know that the Lord gifted her with a fierce personality for a reason. Praying for you all today….no sickness, minimal pain, quick healing, and lots of love.

  69. Kelly says

    Praying for Ashby. Praying for wisdom for the doctors, nurses and therapists that are treating her. Praying for you and Andrew too.

  70. Megan Neer says

    Sitting here at my kitchen table all the way in Ohio praying for your sweet Ashby today.

  71. Emilie says

    Ashby seems like such a strong girl that she won’t let anything stop her! Show her strong beautiful women who live outstanding lives with one less limb. People like Sarah Herron from the bachelor who is climbing mountains or Bethany Hamilton (who lost her arm in an accident) but went on to be a top surfer, lover of Jesus and a Mama to two boys! Praying for Ashby as she goes through all of this!

  72. Kate H. says

    That last paragraph has me in tears. Prayers for this sweet, brave girl and for you, mama. Ashby is going to be the best mom!

  73. Elizabeth says

    I’m crying with you girl! That breaks my heart so much that she is thinking about her future babies. ??. Don’t worry you are doing all the right thing! Praying, trusting God, loving sweet Ashby and caring for and helping her in every possible way you can. Gods love for Ashby is so much greater than yours so I believe that that is something that you can rest and find peace in. ❤️ Ashby is strong and it totally stinks that she has to go through all of this for sure. I’m praying with you and believing for a miracle!

  74. Meghan says

    Occupational Therpay is amazing! Our 6 year old has been going for about 9 months now and it’s made so much of a difference. While he doesn’t have anything near as complex as Ashby, he has newborn reflexes that never went away. Its wonderful to have someone to help him with his fine motor skills.

    Good luck to Ashby on her 17th procedure! She’s in my prayers today.

  76. Donna says

    Praying for that sweet girl and for you Shay! I love what someone said earlier,” tell Ashby her internet Aunties are praying for her!” We are praying!

  78. Jennifer Williams says

    Praying for your Ashby now. Praying for the doctors and therapist and that God would guide their hands and use them. Praying for healing and for kind kids around her to encourage her. ??

  80. Sarah says

    “Well, how I am going to hold my babies when I’m a mom?”. Oh my word, that is the sweetest, most precious, and tear inducing thing I have ever heard. You’ll hold those sweet babies, Ashby, and you’ll be the best mama in the world for those lucky children.

  81. Sophia says

    So many prayers for your sweet girl! Her little life has touched so many, mine included ?

  83. Leslie S says

    Lifting sweet Ashby, and your whole family, in prayer. Thankful for your bravery in sharing your faith and Ashbys story here – to God be the glory!.

  84. Nicole says

    I don’t comment often, but I am praying for you and that sweet girl this morning. I can’t have children of my own and watching what you have done with those two girls bring such joy to my heart. I know God gave them to you for a reason. He knew they would need a strong Momma like you.

  85. Karen says

    Heartbreaking, but she was destined to be your daughter and you will help her find her way! You should take a peek at Bethany Hamilton’s IG page, she is the surfer whose arm got bit off by the shark as a teen (Soul Surfer). She is an adult with 3 kids and living life to the fullest (and still surfing) with one arm. What an inspiration she could be if that terrible decision has to be made!

  87. Jen says

    Hi Shay,
    Long-time reader but first time to comment. Praying for your precious Ashby. Know this, God is using her and you mightily. This may just be a ministry for her one day. And I know our God will ensure that your fierce little lady will have no problem holding and loving her babies!

  88. S. H. says

    Praying even now for your brave girl. Trusting God that she will hold many babies with two strong arms!

  89. Melanie says

    Praying for Ashby and for you! It blesses my heart to see all the outpouring of love and prayers for Ashby. You know the Lord is hearing each prayer and He has His eyes on Ashby today and every day!

  90. Cherry says

    Prayers for you dear Shay and your mama’s heart! Thank you for sharing these details with us, it gives us even more specifics to pray for! It’s great to know how the OT will help her hand and her brain work it out. I am left handed & when I was little you just “worked it out”, all the things & ways things were made for right handers. All that to say, I’m aware of how I still do that & since I’m aware I’m going to bring sweet Ashby to my heart’s prayers everytime I notice that! ? Prayers for sweet Ashby’s procedure, for the day, and for the recovery afterward!

  93. Dana Siler says

    Phillipians 4:6 NASB
    Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be known to God.
    I pray Lord Jesus, that You wrap your loving arms around this family. I pray also for the doctors to have wisdom in all they do. Give Ashby the strength to endure and let Your light shine through her life. In The Mighty name of Jesus, Amen.

  94. Brandye says

    Praying for your sweet Ashby and your mama’s heart. And, praying for her surgical team. No one gets through this life unscathed. Thankfully, we have God to carry us through, to give us the tools to fight and press on. Ashby is going to do great things, with or without the use of her right arm. Thank you for blessing us with her.

  95. Shelbie Fitch says

    Praying for you and sweet Ashby today. I’m in tears at my desk reading this as my momma heart hurts for you. She is so very brave, but I know she is still so tender. What a blessing that God brought you and Andrew and Ashby together as you are giving her the care she needs and remain so steadfast, faithful, and strong as you hold your little girl through every challenge. Praying for a good day and the Lord’s guidance over your doctors hands today.

  96. Amy St. Hilaire says

    Thinking of you and your sweet family today, Shay. Ashby is one strong little girl. Lots of love to you.

  99. Tracy Doubts says

    Awe Shay, praying for your sweet girl and your strength to help her through! You got this!!

  100. Paula says

    And those realities are hard and suck.
    For instance, my 12 year old disabled, non verbal, fully handicapped daughter started her Menstrual Cycle yesterday. Yep! In her diaper. Not a clue. But I do. A punch in the fut all she will never have…babies included.

  101. Casey says

    Oh goodness mama, big hugs to you and big prayers for Ashby!!! God has given her such amazing strength and spirit, if anyone can handle this she can!!!!! Prayers for a smooth procedure and recovery!

  103. Jo Biddick says

    I’ve got tears running down my face as I let you know that I’m praying for Ashby today and will keep praying God’s purpose and plan for her life (Jeremiah 29:11) in the days, weeks, months and years to come.

  104. Anna Jones says

    Praying for sweet Ashby and all of you!! She is so precious, especially to her Heavenly Father. His fierce love for her exceeds her own fierceness, which is hard to imagine, but a sweet comfort. I hope he provides you all with comfort, wisdom, and healing!

  105. Heather Colburn says

    Praying for your precious girl and the rest of your family today and in the coming days! God will use all of this, of that you can be sure!!

  106. Kirsten J says

    Wise beyond her years, that sweet girl. I have an uncle who lost his right arm and half his left hand in a explosion – he was a chemistry PhD student at university of Washington, and his professor and the university made a huge mistake, nearly costing his life. Well, he’s gone on to head chemistry departments at universities, work on secret projects for the government….and father 3 boys…and he held them all. And changed diapers, too. Probably more than my dad, who had 3 kids, and 2 arms and hands, lol. And he’s always been my favorite uncle. The one who would take off his hook/arm and jump in the water with us kids while the other adults sat around, the one who would play golf and baseball with us when our own dads wanted to golf alone or sit around….well, anyway I pray for medical miracles and more strength for you and your family. But Ashby has it all. She’s gonna make her way.

  107. Lisa D says

    Try to not “go there” with all the “what if’s” and let GOD be the Comforter. One day at a time….. Prayers for you and your family.

  108. Jean Claire Monroe says

    Our God hears each of the prayers above and mine now. He is faithful. Prayers for Ashby!

  110. Sara G. says

    Prayers for sweet Ashby today! When our kids hurt we hurt also so love and prayers for you too!

  111. Monica says

    You are so amazing! Praying for miracles for your sweet Ashby and your entire family – you are certainly one “unit” and you have all my wishes and hopes too!

  112. Maryann says

    This was such a beautiful and vulnerable post, from your heart, about your sweet, fierce, and amazing little girl. Praying that God gives you all strength and peace in this journey that you are on!

  113. Bev says

    So sorry she, and you, are faced with this medical challenge. God knew Ashby would need the love and support of such a wonderful family when He gave her to you! Praying for her now.

  114. Julie says

    Praying for that amazing daughter of yours today and for you and Andrew too! Sending lots of love your way…God Bless!

  116. Christine Spears says

    Thank you for trusting us enough to open your life to us. Ashby just amazed me! I count it an honor to pray for this sweet hearted girl. God is preparing her in many ways to think through and deal with whatever is placed before her. He has shown her that He is faithful and He always will be faithful sweet Ashby! Just look at what a wonderful family He placed her in!

  117. Amy Owens says

    I’ve been a long time reader, but never commented. However, Ashby’s comment about holding her babies when she’s a mama just tugged my heart. Can you imagine what a wonderful mommy she’s going to be if she’s already thinking about it now? So much love to give! You tell that girl God will make it so she can hold and love her babies, no matter what! Prayers for you all.

  118. Valerie Patton says

    Shay, I am praying right now for peace to cover you, Ashby and your family. God also has a special right hand – it is strong, mighty and powerful and he holds us in it.

  120. LL says

    Oh wow. That was heartbreaking to read! She’s such a special girl with such grit. God sure knew what He was doing when He paired you and Ashby up. Big hugs to you.

  121. Sara says

    You are one strong momma! She has the best support possible . Keeping that sweet girl in our thoughts and prayers!

  123. Sara says

    She will be okay. She sounds like the bravest person, child or adult, and she has a great family. She’ll be okay.

  124. Alicia says

    There’s not much to say except for sending prayers and love. Made me cry this morning.

  125. Amanda Wilson says

    God is so good! He placed Ashby right there with you because he knew you would fight right along side her!! That girl is going to move mountains! Always prraying for that sweetie!!!

  126. April says

    What a beautiful soul she has. She is a fighter! I pray for healing, peace, and hopefully an answer one day. I also pray she continues being positive through this.

  127. Sarah Shaneyfelt says

    Oh, prayers for Ashby and prayers for y’all as you navigate answering the tough questions she may pose! I’m so happy that God gave y’all each other because I’m confident you’re doing exactly what you should for her!

  130. WhittyWife says

    Oh Shay, I’m so sorry! I’m praying for strong, sweet Ashby and for you and the rest of your family!

  131. Jill McCandless says

    Having a child with an uncertain future is not easy. But how fortunate we are to have a Heavenly Father who knows all about it and has it all planned out, so we can put our trust in Him. Praying for Ashby today, that her procedure and recovery will go well! Praying for you as well, to have the strength and wisdom you need to answer those tough questions and make the necessary decisions for her care. ❤️

  132. Brittany says

    That Ashby has a strength that is unmatched and I know the Lord is going to use her in big huge ways that none of us can even imagine right now. Praying strength and healing for her and peace for your momma heart.

  133. Mel says

    Korean adoptee here (an an adoptive mama too!) and the Lord has said to Ashby “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jer 29:11 We love you Ashby!

  134. Lynn says

    I’ve been a faithful reader of your blog for many years, but i couldn’t leave here today without commenting for the first time. I will be praying for your brave Ashby today! I will also be praying for strength for you and your family as you continue on this journey with Ashby,

  135. anonymous says

    Prayers for Ashby! I grew up with a girl who lost her arm in childhood. She ended up being a professional equestrian and a mom. Sometimes what we see as a worst case scenario, is actually not as bad in the long run because her overall health could improve. I will pray that God leads the doctors and your family into what is best for her at each step of her journey.

  136. Rhonda Moseley says

    Even though I follow you daily, I am amazed by the support shown here for Ashby and your family! Prayers for healing and a miracle but every day is a miracle!

  138. Amanda @ That Inspired Chick says

    Oh sweet friend. I am praying for all of you!! Ashby is so blessed to have such amazing parents who can give her the very best care available and all the love and support she could ever wish for. Hang in there, mama. So many prayers covering y’all!

  140. Sandy Blitch says

    Her thoughts and worries supercede her age! What an angel, and what a strong soul she has! Prayers for your heart, her procedure, her sweet self, doctors, nurses, everyone around her! She is amazing!

  141. Tamra Walker says

    You tell that beautiful child that she is already ‘holding’ people that she does not even know with her sweet heart. Her strength is inspiring. Praying for her heart and yours to have peace.

  142. Nikki says

    Ashby is lucky to have a mom who does the research and finds the best solutions! Praying for you all!

  144. Sara H says

    Well now I’m sobbing at my desk! As a mom of a daughter with Type 1 Diabetes, I know a little of what you are going through. There is so much that you have to think about, so many things that will come up out of the blue that will take your breath away, and all along the way we see that our kiddos are so resilient and strong and probably handle this challenge better than we do! So thankful for faith in a good God, for hope in ever advancing medicine and therapies, and for the foundation God gave your family. Praying for Ashby!

  146. Karen says

    Shay, I’m praying over Ashby and you today! It’s a lot for a kid and a ‘mama heart’!

    One of my family members had to have a leg amputated after a long road of trying to rehabilitate it to function well again. I am NOT at all saying this will be Ashby’s road, but even with loss of limb, I saw more functionality of movement, ability to do things that were unplanned, and restoration of joy in my brother’s face. So, even if you have to walk that road, I believe there may be lots of hope there as well.

  147. Jumi A says

    I pray for strenght for sweet Ashby and for you as a Mama and Andrew, Kensington, Smith and Madeley as a family. Ashby is blessed that you brought her home to be part of your family. My heart breaks thinking of where she would be if your family hasn’t stepped in. God will provide you answers and no matter what the future is Ashby will always be surrounded by loving family and friends

  148. Kim Hayes says

    After reading every comment above I want to say a resounding “Amen”! As another “Internet Auntie” I’m sending loads of love and prayers from Washington to cover each of you and our “Super Ashbey”! Her heart and spirit couldn’t be any sweeter or stronger and so many of us are learning from her unique story. Thank you for sharing in such a personal way and allowing God to use Ashbey and your family for His good!??

  149. Jenn DeVille says

    Sending prayers to your sweet girl and the whole family from a small Texas town!

  151. Debbie says

    With a family like all of yours and a mom role model like you, this girl will be an amazing mom no matter what happens. The fact that she is dreaming about being a mom makes me smile…she has plans…and she will make a difference! Prayers for all of you today and the next few as recovery takes place after #17. God knew she needed you and he made it happen.

  152. Kim M. says

    Lord Jesus, it is in Your name we pray today for sweet Ashby, that her arm grows strong and that all of the doctors and therapies and advances in medicine come together in only the supernatural way you can provide Lord. Lord, give this precious child a long, productive, and faith-filled living in serving you. Amen.

  153. Ahsia says

    Praying for Ashby and your family. Being a special needs mom is tough, but these kids are amazing. I know my oldest’s spirit and zest for life amazes me every day.

  154. Susan says

    I will certainly pray for that sweet girl and for you as well, Mama. It is SO hard to see our babies struggle with anything. What a brave girl you have!

  155. Carly says

    Recently we had a sermon about complaining, and one of our small group questions asked, “What do you think you could do better or different than God?” because the answer to that is where our bitterness creeps in. 2/3 of my children have a chronic disability/illness. My youngest has a rare disorder called Lymphatic Malformation that takes us to Children’s Hospital to deal with and causes her neck/chest to be oversized and painful, and my oldest was just diagnosed with Crohn’s. And let me tell you, THAT is where my bitterness can creep in. They are brave and strong and INCREDIBLE, but dangit, I don’t want them to have to be.

    Praying all the things for your sweet girl and y’all, because honestly, this is HARD stuff. Hugs, Mama ❤️.

  156. Michelle says

    I follow your blog, but don’t normally comment. My son was born with a limb defect and had an amputation of his foot at the ankle at age one and wears a prosthesis. I remember being so scared and worried about how he would deal with this at school and how other kids would treat him. He is now 13 and plays baseball, football and basketball. Nothing stops this kid and we have been blessed that it really hasn’t affected him much socially. His friends and classmates have been great, and he is a very popular kid. Sending prayers for you and your family as you go through this journey.

  157. Jeanine says

    I wonder what God is going to do in Ashby’s life with so many people praying for her! I know as you do that He will work all things together for good because He has a good plan for her. I’m praying that He will do a mighty miracle in her life and completely heal her. Praying for you and Andrew as well as you have been given such an awesome privilege and responsibility to shepherd her through the trying times as well as the good times. Now, off to get some tissues…

  158. Amy D. says

    Prayers for your sweet baby girl, today and every day. Prayers also for you and your family. You can tell Ashby is a fighter and a true inspiration. My thoughts & prayers are with you all!

  159. Lindsay @ Lindsay's Sweet World says

    Oh Shay. Ashby has always been in my prayers and now I will be sure to pray even harder for her. Sweet girl.

  161. Raquel Whatley says

    May the Lord be with you all. Such a big thing for such a little girl to handle. I pray the Lord wraps you all in His loving arms and comforts you and I pray there is an incredible miracle that takes place that will fully heal Ashby.

  163. Connie says

    Aww, God bless her. Praying big time for Ashby. She is so lucky to have such a wonderful family who cares so much about her. She is so brave! I sure wish someone would find a cure for many things in this world. I will continue to pray for all of you. ❤️

  164. Kay Svetina says

    That made me cry, too.?. We want our babies to have the perfect life. As Andrew said in your video, you wouldn’t have gotten her without her special arm. She is a special little girl, and it has certainly made her a stronger person for it. Will pray for your heart and hers as she goes thru life and has to deal with all of the surgeries and therapies. What a doll she is❤️

  165. Bethany says

    Praying today for Ashby! God put her in a place where he knew she would get the best care. She is blessed to be in her family that loves her so much! Praying that she’s surrounded with people that continue to encourage her.?

  166. Kathy Roe says

    Praying for Ashby and for you and for the wisdom of the doctors who care for her. So how did you answer Ashby when she asked you that question in the car?

  167. Randi jo rooks says

    What a beautiful girl she is and will always be !!! God made her for such a special purpose . I’m reading a book from Elisabeth Elliot that talked just this week on children with special giftings and needs. What a gift these daughters (and sons) are to all around them! They have a special job and calling. I’m lifting you both up to our Father today and will continue too ?? you were perfectly picked to be her mama and vice versa. Love ya sister in Christ !

  168. Susie Hurley says

    God knew exactly what He was doing when he placed that precious girl in your family. not only is He growing her, but He grows and changes us so much through the process. it’s the refiner’s fire that hurts our hearts but makes us more and more like Jesus. my 5 year old has hemiplegic CP…lots of people can’t see it off the bat, but he neglects his left hand…we have done PT and OT regularly since he was a baby. therapists are such a wonderful blessing and also so good to know God is the one who does all the work!!!

  169. Cheryl Cramer says

    Praying for your amazing little girl and your family. It is hard to watch a child go through things that we have no control over…but God has all of this. Ashby is thinking about her future and as a parent we need to help them through their worries. But what happens when her worries are your worries also….But God. She has a future and it is going to be a great one. How wonderful is it that Ashby sees herself having children in the future. She has found ways to do things by herself that you couldn’t even imagine. She will hold those babies…she will find a way.
    Ashby is strong and so are you. Keep doing what you are doing and God will take care of the rest.
    Hugs, Love and blessings

  171. Kathy Cochran says

    Oh what a precious, sweet girl! Praying for Ashby today and your family, may God bless you all.

  173. Tina says

    Lifting you and Ashby up in prayer today and the days ahead. Praying for strength, His peace and contentment for whatever may lie ahead. May His Grace surround you today & always.

  174. Julie says

    Read Bethany Hamilton’s book! I think there’s kids book about her too. What a wonder example she is. And she holds her baby!

  176. Diana says

    Prayers for strength and healing for your sweet, courageous girl! And all of you, too.

  177. Tonda Quillen says

    Prayers coming your way from Indiana.
    Ashby’s got this and God’s got this. Much love
    to Ashby and all of you.

  179. Patrice says

    May the peace of Christ fill you and sweet Ashby. We are covering you with prayer!

  180. Andria Sprunger says

    Oh my goodness. Thank you for your vulnerability and please know I just said a prayer for you all. I can’t imagine how your mamma heart hurts for Ashby. Thanks for sharing. <3

  181. Michelle Antunez says

    I identify with your sweet Ashby so much. I have a few auto immune diseases that have no cure and sure can be debilitating. I also have that same attitude as she does and I always have. Seeing how you react as a momma breaks my heart as your heart breaks for your baby girl. She might seem as if she’s gotten it all taken care of but remember she hurts and sometimes she just wants to hold your hand at a doctor’s appointment, even though you might want to find a solution just being there as you are is doing wonders for her. The question she asked broke my heart because I have those same fears everyday but to hear it from a baby breaks my heart. Prayers to your family and strength to you and your husband for everything your daughter is going through. I pray that God puts the right people in your path that understand her condition and will heal her. Much love.

  182. Victoria says

    Agree with the others obviously but I’ll also say that while Ashby is brave, she doesn’t have to be. She is allowed to cry, and shout and be upset. That’s her right.
    She can move back and forth through the five stages of grief about her arm and her illness.
    I just know that in trying to be loving and supportive, if a person only hears “how brave you are” , it can lead them to feel that that is the only acceptable way to feel. I still feel that way about my conditions and I’m forty! Sometimes life just sucks and some people have a harder row to hoe, and they can feel however they need to about it.

  184. Prudence says

    I am crying as nobody should have to go through this let alone a sweet and precious little girl. Ashby is so strong and courageous. Praying for her and your entire family.

  185. Shannon Leyerle says

    Praying with you for new treatments that will heal precious Ashby! Also thinking of surfer Bethany Hamilton – I’m sure she inspires many with her determination to succeed with one arm- her movie is wonderful.

  186. Stacy says

    Oh my! Ashby’s question took my breath away! I don’t know what her future holds but I sure know that Ashby’s loving heart is perfectly capable of filling any void her right hand may (or may not!) leave. Thank you for sharing her heart with us strangers!

  188. Kendra Griffin says

    Sending so many prayers. She is fierce and so are you! Big hugs to all of you, thank you for sharing your journey. ?

  189. Arika says

    My sweet right-handed niece had a stroke when she was only 6 years old. It affected her dominant side, and she is now a lefty. It took lots of work, but she is 12 now and has developed beautiful handwriting and has adapted remarkably well to having pretty minimal use of that other hand. Not the same situation I know, but it’s really amazing how adaptable young, developing brains can be. It sounds like your Ashby is getting really good care. Hang in there!

  190. Bri says

    Something tells me that no matter what happens, Ashby Shull is going to do just fine in this world. ❤️

  191. Sarah G says

    Oh sweet, Ashby. What a precious girl God has given to you. Continued prayers for her, all of you, and the road ahead.

  193. lori reggio says

    Prayers sending to you for sweet ashby. How blessed she is to have you and Andrew as parents. xo

  194. Michaelann says

    I admire your strength and determination to keep that girl strong, praying for healing and comfort today!

  195. Christie says

    OMGosh – I am crying now too. Sending lots of love and prayers. Thank you for posting these, mine are teenagers – but love watching yours grow up, loved fiercely too.

  196. Grace says

    Shay,
    Thank you for being so open and vulnerable. After reading this so many thoughts came to mind:
    – to be grateful and appreciate all that I take for granted
    – that being open and vulnerable is beautiful
    – that people who seem to be perfect and have perfect lives on the outside may be struggling with things you wouldn’t even know
    – the power of prayer
    – the resilience of spirit especially among children
    – the reminder not to sweat the small stuff
    – the need for community and the amazing power of support from one another
    – the vastness and depth of a mother’s love for her children
    – the perfectness of God’s plan and bringing you and Ashby together; enfolding her in this beautiful family

    Holding you and yours in my heart and prayers. We are all here for you.

  197. Sara says

    What a strong little girl! I was thinking about the conversation you had with Ashby about carrying her babies and right now I have a one year old daughter who I love to carry in baby carriers such as ring slings. A lot of companies such as Vienna springs and wildbird make ring slings for little kids to carry dolls, and happy baby carriers makes a carrier for kids and their dolls too. Maybe Ashby would enjoy carrying her dolls or stuffed animals in these now? And seeing that regardless of her arm there are always tools out there to help her not miss out on anything!

  198. Kim says

    I’m reading this (and crying) a few days late, but I will continue to pray for Ashby and your family. It is so hard as moms to see our children suffer, and to not have answers to all of their questions about the future. I know that there are some smart and determined doctors and scientists working on cures and treatments for Ashby’s condition, and I will pray that there is an advancement soon that will help her. And in the meantime I will pray for peace for her heart and yours.

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