Hemi-Vertebra Resection at Texas Scottish Rite Hospital for Children
It was never a matter of if, always when. We knew before she was born Littlest would need surgery to remove two malformed vertebrae in her tiny spine.
When finally came almost three weeks ago. Sarah had the surgery we’ve been anticipating (as her mother I can say dreading) for all of her six and three-quarter years. Sarah’s spine surgery was performed by an incredible team of surgeons, led by Dr. Dan Sucato at Texas Scottish Rite Hospital for Children. We were at the hospital for almost a week and then discharged with Sarah to recover at home for six weeks in a full body cast, called a Spica cast.
I’ve struggled with how much to share about my daughter’s story here in this space. When I began writing The Schell Cafe nearly a decade ago, I knew everyone who read my blog. All three of them! By God’s grace, this table has expanded mightily since then. And, I wonder how much of the story is mine to tell and how much to guard Sarah’s privacy.
Rather than use this space, I chose initially to chronicle bits of our journey with Sarah the last month on instagram and on my personal Facebook page. Husband and I also used a Caring Bridge site to keep friends and family updated.
Conversation Around the Table
Then the messages started. First a simple inquiry on instagram. Then a private Facebook message. And another. Then emails. Over a dozen people that first week alone, none of whom I know personally, asking for advice about spica cast care, spine surgery, and scoliosis. I never dreamed there would be a community (or a need!) for such information. A conversation has definitely begun.
Over the last few weeks, conversations around my virtual table have been filled with encouragement flowing in both directions. Strangers have reached out to share how they once cared for a loved one in a full body cast. Or how they understood the highs and lows of being an around-the-clock caregiver for a child recovering from surgery or cancer treatments. God has truly sent a remarkable village of encouragers to us right now. Our IRL friends are caring in mighty ways for our immediate needs – incredible meals, carpools for the older Littles, and baskets full of crafts, games, and fabulous distractions for a six year old confined in a body cast.
Community of Encouragers
It’s the encouragement from strangers that I wasn’t expecting. And so I hope that by sharing more of our journey encouragement will be offered to just the right people at just the right time.
Chances are, you’ll never need to know about a spica cast. Or have a child who requires surgery to remove a mal-formed vertebra.
More likely, you will know someone who needs encouragement when traveling a difficult road.
Or find yourself scratching your head for creative ways to love a neighbor who has a sick child. Maybe you are in a season of caregiving and find the days long and the nights longer and need a community of people who “get it”. Or maybe you are just hoping this season in my life will soon be over so I can get back to sharing ridiculous recipes, like FRICKLES! {Fried Pickles}
Don’t worry, I’m not changing the focus of the blog. Just opening up the discussion a bit wider and following where the conversation leads. Topics coming up will include:
- Life in a spica cast {tips & truth from a mom, not a nurse}
- Ways to make life easier when caring for a sick or confined family member
- Delicious meals to take to friends in need
- How to stay sane during a season of sleep deprivation! {expect typos in this one}
- Activities and resources for school aged children who are home for long periods of time
God is teaching me so much during this season of caring for Sarah. What God teaches is meant to be shared. This much I know is true.
If you have ever been a caregiver for a sick or homebound loved one, please share your story in the comments. Your words may be just the encouragement someone needs today.
Always grateful to have you at the table, friends.
Kristen, I saw your post through AFBA on twitter and was compelled to read it. My son had spinal surgery the summer of 2012 (he was 15 at the time) and it was quite an experience. He spent a little over 5 days in the hospital and it was a 3 week recovery time (no cast involved). That was a difficult time for all of us, and I can not imagine how much more difficult it would have been to have a cast included plus 3 more weeks added to the recovery. But, it sounds like you are half way through the process and you have a wonderful attitude. Your daughter is brave to go through this at such a young age-kudos to her! My son has fully recovered and is back playing sports and living life. Thank goodness for all the medical advances of the day. Best of luck with everything.
Cathy,
I’m so glad you shared. And, that your son is back to life as usual. What hope! Thank you.
Bless you all!
Thank you, dear Maggie! Grateful for your prayers.
This is lovely, Kristin. Praying for you all as you continue down the recovery road! Love you.
Thank you, Diana. Love that you are in our virtual village. xo
Kristin,
Praise God that the surgery went so smoothly. Your heart just blesses me. In the midst of everything you are showing hospitality and showing others how they can do the same for others. You are an example of “love your neighbor as yourself” if ever I saw one. Big hugs next time we are in the same room. Virtual ones for now. 🙂
Thank you Amy. Your words mean the world to me. God is so good to teach me hospitality in the good and hard seasons of our life. xo
Kristin, I think this is good new direction in your life. And I think you will find ways to maintain Sarah’s privacy, while still sharing your experience/strength/hope.
I haven’t wanted to bother you because I know you are a full-time caregiver right now, but rest assured, you are in my prayers. And whenever I see your little FB icon pop up, I think, “Wow! She’s really going out of her way today.”
take care.
Megan.
I’m slowly coming out of the fog. Knowing you are there rooting for us has been such a gift. Love you, my friend. xo
You’re inspiring Kristin! Seriously…everything about you and your beautiful self is inspiring. It is so great to have you as my neighbor and friend. Love, love, love is in the air. Thank you for your beautiful words of wisdom and inspiration! Just sharing is appreciated, enjoyed and inspiring. Your words make me realize life is raw, real, a true test of faith, courage to have faith, struggle of what we can overcome and the yearning want to learn more and be everything that I was meant to be!
I agree with you. It is very tough for a Mom to keep patience when their children are in such a trouble. God blessed you Kristin. Live your life with happiness. 🙂
I love that God has allowed community to be born once again in a place that you didn’t expect it! Thank you for stepping forward and sharing your story!!
Kristin! God bless you and your family!
What might seem unbearable, becomes a little easier to bear because we are not alone
especially when we recognize that God is our strength , our comfort and our hope!
sending hugs and prayers your way!
Last year our son, who happens to have Down syndrome, had four hip surgeries due to his femur popping out, eventually leading to his hip collapsing. It was a hard road and completely unexpected as he had never had any hip issues! After his second surgery, he was put in a hip spica for six weeks. He turned fifteen during that time. It was a difficult year, but he was so brave. It was a joy to care for him, but there were some very hard days during that time. My husband was amazing & I am so thankful for him. I know it is difficult. I am praying this morning for you and your sweet girl!