Next week Callie will start her last year at Child Enrichment Preschool. Summer has been enjoyable and fleeting for our family. We live near a YWCA where our older boys have been swimming almost every day. And Peter and Callie enjoyed their 3-day-a-week summer preschool sessions.
In early July, Callie had an appointment with Dr. Kravitz, her pulmonologist at Duke. Her lung tests looked good in that they’ve pretty much stayed the same with no decrease in capacity that we can tell.
Since Dr. Kravitz is Callie’s primary specialist, we also discussed our continued commitment to a palliative approach with Callie’s care. With SMA, there is no treatment, but there are many interventions that can be done. It’s easy for us to cling to the idea that these interventions can somehow save her. They can buy her time, but at what cost?
Callie’s spine is now curved forward and we know that eventually it will impact her lung function, if it hasn’t already. We could put rods in her back, but we’ve chosen not to. Even if we found a surgeon willing to operate on her, it would take Callie away from everything she loves: her school, her home and her family. She would be in tremendous pain. And to what end? What would be next? As horrible as it is, our little girl was not made to survive.
I have a friend who was watching her husband die from ALS. She said to me recently, “I’m trying not to make selfish decisions.” That’s how we feel as well. And truth is, the longer we prolong Callie’s life, the more we put her at risk for more complications and more pain.
There’s a different kind of pain associated with SMA that Callie is now experiencing: the pain of knowing she’s different. She talks a lot about walking. We’ve been honest with her and have told her that she will walk when she gets to heaven. But just a few days ago, she asked Nathan if he would teach her to walk.
This summer, with the help of our children’s social worker with Hospice, we took our older boys, ages 10 and 12, out for an evening and told them that Callie is likely to die from SMA. Back in February, two days after her birthday, we almost lost Callie. She’d already been sick, but suddenly her muscles were too exhausted to coordinate her breathing. Her oxygen levels dropped, her heart rate spiked and she turned gray. We had to force oxygen into her lungs and it took a total of 8 mg of morphine to relax her muscles enough to where she could coordinate her breaths on her own again.
Our oldest son was at a friend’s house that night. We realized he could’ve come home and his sister could have been gone. We don’t want our children to feel the responsibility of adult problems, but because of SMA they do have adult problems and we need to all be able to talk about it honestly.
Last week we went to the beach with my family and had a great time. Callie absolutely loved it! We took her bath seat and put it in the sand and let the waves wash up to her.
We also had an unexpected surprise: My little sister got engaged while we were there! The wedding is set for the spring, and Callie’s been asked to be the flower girl. She’s very excited about getting a pretty dress and the importance of her job. She could drive her wheelchair down the aisle, but I’ve been thinking that maybe her daddy should carry her down the aisle.
You are all a witness of God’s superior grace and I just thank Him for how He is using Callie and your family to reach all of us and bring us closer to His everlasting arms. I cannot even pretend to imagine your grief. But your joy and gratitude and honesty is beautiful to me and makes me grateful to know you all. I pray that God will continue to give you quality time with your daughter and the wisdom you need to give her a full and happy life.
Kelley
Your family is a magnificent witness to the grace of God !
Always so wonderful to hear from you all. Callie is just precious. She is a gift to us all. We appreciate you sharing her life with us.
It’s hard to decide which is more beautiful: this little girl or the life her parents are giving her. Keep the faith.
I am so glad your family got to enjoy time at the beach together. Callie’s hair is so long and pretty!
You are an amazing family. I pray that you are continually sustained and blessed and given all that you need to meet the demands of such a task. The hope of Heaven is you sustenance, your anchor. and what prods you on when, maybe, you feel you are losing your strength. Thank you for posting…it reminds me to pray so your arms might be held up for another period of time.
Remember Jesus is closer than the air you breathe. HE is carrying you and will continue to do so, even into eternity.
I’m so glad y’all had fun at the beach. Prayers for a productive, safe, happy school year for Callie and the boys. Thanks to all who continue to lift sweet Callie and her family up in prayer.
Love to all–
Mamoo
Mama
Carol
(Nathan’s mother)
Nathan, Christy–
You are the two strongest people I know. You’re also the folks that I cry for the most, that I pray for the most—that I love the most. Your faith strengthens my own. I don’t know how God thinks, nor why He thinks the way He does. I don’t reckon I’m supposed to know, and I can not,and will not, question Him. I find a great comfort in knowing that Something controls all that we are, and all that we do. Something bigger, smarter, stronger that anyone could realize. But I believe this–God’s greatest Gift, to us, His greatest demonstration of unconditional love–His only Begotten Son, Jesus, the Christ, the Redeemer, the Source of all that I am. And I truly believe that he sent Callie as a reminder of His Unconditional Love. I don’t think I’ve ever met Callie, but I love her. Christy, I barely know you, but I love you. Nathan—I don’t have to tell you, but I will. I love you. And just as there is nothing we can do to end God’s love for us, there’s nothing any of us who know you all, that can stop our love. Not comparing any of us to the Messiah, but rather, trying to meet his expectations and realizing that we never will. Love has always been the reason.
Honesty is a difficult but precious gift to your family. May God immerse you all in His grace as you savor moments and continue to make selfless decisions.
Deb Weaver
Remembering all of you in my prayers. Love, Carol
Our hearts ache FOR you and WITH you. We treasure the evening we spent with you earlier in the summer when we were en route to Greensboro. All your children are dear to us. From our distance, we like to try to learn about them as they grow. You are in our prayers.
I see such beauty and depth of love for Callie as you continually choose to not be selfish in her healthcare options. Callie and your beautiful boys are blessed beyond measure in the way in which you are handling an extreme “life is not fair” situation. Oh how I pray that Callie would be the first SMA patient to be miraculously healed and set free of the disease for all the world to see God’s power. If my prayer is not God’s will for Callie, I continue to witness an equally powerful work of God in how you move through each day. Thank you for sharing her beautiful life with us…
Our prayer are always with you. You remain firmly in our hearts.
Much love,
Linda