Callie should be home from the hospital tomorrow. She is off oxygen and will be using her bi-pap to support her breathing at night and as needed during the day.
She has been doing well for several days and has been free to leave the hospital room. One of her favorite destinations is the hospital lobby’s fountain, especially when she has a few pennies in her hand.
As our experience with SMA has expanded, so have our ideas about Callie’s life. A year ago, Nathan and I thought it was just a matter of time before researchers found a cure for SMA that would rescue Callie from this condition, and maybe even reverse the damage SMA was doing to her body.
That kind of hope never really dies, but we have slowly changed our attitude.
Because of SMA, Callie reached her physical peak around 9 months old and has been losing physical abilities ever since. And even though we’ve seen small victories, mainly due to aquatic and physical therapy, Callie’s overall trend has been a steady decline.
This downward trend will likely continue until Callie is too weak to breathe, even with help from the machines that are steadily becoming a bigger part of her life.
So on Friday we had a meeting with Callie’s dedicated medical team to discuss Callie’s care and our expectations for the future. Our meeting was difficult but very helpful. It gave us a chance to make clear to everyone that Callie’s quality of life is paramount.
In other words, we don’t want to sacrifice her enjoyment of life for the purpose of keeping her body alive as long as possible.
Quality of life is subjective and varies from person to person; but we know Callie. Right now, she is telling us through her body, her actions and her words that she has a great quality of life, regardless of the damage SMA is doing to her body. We believe she will let us know when she’s tired. We also believe that no battles will be lost. Callie will simply find peace in knowing it’s time to leave her life with us.
Nothing can prepare us for that day and time. But like all lives, Callie’s impact on the world has and will extend beyond our family in ways that we don’t know. When she’s finished we want to find comfort in knowing that she’ll be leaving behind pain, sadness and all the limitations of this life.
Until then our job is simple: enjoy our time with her and help her live a meaningful life, however long or short it may be.
You and your family are in all our thoughts and prayers. We miss you and hope that the LORD continues to give you strength.
Love you
3300 gang:)
We only met once when you saw Genetics at Duke. I just wanted to let you that many folks have already been impacted by your girl and your family. Thank you for sharing your blog with me. Callie’s reach is long, and your family’s grace is obvious.
I’m so amazed by your family. I’ve been trying to keep up with what all has been going on with Callie. She is very lucky to have such great parents. I know the decisions you all have had to make have not been easy. I will definitely keep you all in my thoughts and prayers. I love that picture too, she is just beautiful. Hang in there….
That we all could see “life” as you now see it for Callie, that it’s the quality of life and what we can do to improve that quality in the time we have……and much of that is simply sharing time with each other in our immediate family and sharing time with our extended families, our friends. That kind of love for one another is what provides the real quality in our lives whether we are here a long time or if our time is shorter….the love we experience is what counts. Thank you and Nathan for sharing such intimate thoughts and feelings, and know we love you all and pray for that quality family time with your family.
With love,
Bob
We are excited that Callie is coming home.Kaiden and I still pray every night for little Callie before he goes to sleep. Our school still lifts her up in prayer as well. She is such a little blessing from above. There is a book, that Debbie Bagwell and I read that you would probably like. It is called “Heaven is for Real”. You would really enjoy this book. Take care and God Bless you all!
Glad to hear Callie will be home soon. I hope I can make the trek back to visit again. She’s such a funny little girl. Our love to all of you.
So glad to hear Callie is coming home soon. Your words have brought tears to my eyes. You have all exhibited such strength. We’ll keep praying…
You have blessed me and my family.
I read this post with tears in my eyes. What a wonderful attitude your family has expressed in the face of such challenges. Your witness is such an encouragement to everyone who hears your story. Please know you are in our prayers. It is wonderful to see how you are helping your little girl enjoy life to its fullest despite her condition! Keep up the good fight!
For once I am speechless. I’m just pondering all that you are saying and asking the Lord to help me pray according to HIS will about this.
Your words and inner thoughts are so moving to me. They depict the selfless love of 2 parents who value Callie’s best interest above their own need to hold on to her. As a parent, I know this is the power of God that allows you to look beyond this temporal life and keep your eye on eternity. One of the greatest miracles of all is that our great God has prepared for us an eternity without suffering and seperation through His Son. Thank you for your witness to the world!
What a beautiful testimony to your faith in Almighty God and your love for Callie and her well being. My entire being is blessed reading your blog. Thank you!
God bless you all! Such an inspiration! Very well stated! Thank you for blessing me!!
Such strength from the Lord you have. You have been a blessing to me through these blogs. Thank you for sharing your thoughts with us. I will continue to pray for Callie and your family. I am so glad you are going home soon. Home is always the best place to be for anyone.
Love You,
Linda Carroll
Praying for all of you.
Unconditional Love…. that is the blessing of FAMILY…
Well put, my friend. SO glad for our opportunity to talk…