It's been a good week and Caleb has been in great spirits. We fill our days with playing in the play room, wagon rides, and plenty of play-doh. Caleb started physical therapy this week and he now gets that 3 times a week. The doctors want him to build up some strength and use those tiny little bird legs as much as possible. I've seen improvement already. We get him out of bed a lot and get him walking around the floor. He loves this and so do the nurses, because it's Caleb's habit to stop and give a hug to each person he passes. What a flirt.
Caleb had an echocardiogram this week and the doctor said nothing has changed. His heart is functioning at about 35% and is enlarged. He is stable though and they don't anticipate anything really changing much between now and his heart transplant.
Speaking of transplant, we had a really cool experience yesterday. Every year, the NCAA hosts a Christmas party for all the Riley heart transplant kids and their families. We got to attend and it was amazing to see all these kids who have had a heart transplant and are doing well. There were toddlers who just got a new heart this year and teenagers who have had their hearts for 15 years. There were about 200 people there and it was so inspiring to see this community that we are now part of. It was like a big family. We met one family who had four sons, three of whom were born with heart defects. And of the three who had heart defects, two have passed away. And yet this family was AMAZING. We met all these people and listened to their stories and felt so proud to be a part of this group. And so excited to think about next year when Caleb will be there with us with his new heart.
I really want to talk about this whole idea of being "inspired". People tell us all the time that we are an inspiration and I'm not really comfortable with that. It's not because I'm super modest and don't want the attention; it's because I want to know exactly what people mean when they say that. If you're like me, lots of things can inspire you, but then you can turn around and go back to your life and that "inspiration" has no real lasting impact. Being an "inspiration" is nice, but I'm more interested in having an impact. An inspiration can be a fleeting emotion, but an impact means something in your life is different or changed. Now don't get me wrong, it's very complimentary when people tell us we're an inspiration. I just want to take the conversation a step further and ask, has Caleb's story changed you in any way? Because as Christians, lots of things can convict us, encourage us, inspire us, but we can easily walk away and forget what God just said to us. I'm struggling with this myself. I hope that I'm really a different person because of all the stuff I've been through. God has taught me a lot in these days at the hospital but even the most eye-opening revelation can slip out of my mind after time passes. (Confession: Especially because I spend too much time watching tv and not enough time with God.)
How about you? If you've felt inspired by our story, what is it that you're inspired to do, or be? Has your life been impacted in some way? Has God spoken to you about Caleb's story, and if so, what have you done in response to His voice? I'd love to hear your answer to these questions. Please! :)
For now, thanks for your continued prayers. And this little guy thanks you too.
Your family and Caleb's story has impacted me very much. It is hard being a grandmother raising two young grandchildren and often the financial burden and physical burden sometimes becomes overwhelming but through your story I am learning to continuously count my blessings and praise God for not only our lives but our health and provision. Don't get me wrong because we have always been thankful but it now has a new special meaning. I am so grateful for your blog it gives me such encouragement. I can see God's grace, peace and strength through your words.Know that we will continue praying and believing for a miracle. Thanks for sharing. Blessings!
ReplyDeleteIt was so good to spend a little time with you yesterday. Caleb is such a sweetheart!! He is on my mind and in my prayers everyday as well as you and Daniel. The pastors sermon today was on making everyday count. It's so easy to take things for granted when all is going well. I know that you cherish everyday with Caleb and I am just believing that God will give you many more years with him. Again, please let us know if we can help in any way.
ReplyDeleteI see you as an insperation I know it is so hard for you to watch your child hurt and pray at every little twinge. I know it must be, you see 3 years ago my son and grandson were burnt in a serious fire. I seriously thought I might loose them, I finally asked the lord to take care of my babies! My grandson wasn't even 4 months old yet. So I felt lost for quite a while, and finally the lord sent me a message, I was needed at home to help with my son and daughter -in-law' s other children, my grandchildren, so that my son' s wife could be there and not worry about the other children. I didn't want to leave , and I was there as much as we could be after school, so we could be a family as much as possible. I found a new respect for my daughter- in-law. She was so strong., just like you . And now each day I am thankful for what I have. Life is beautiful, enjoy it everyday you never know what tomorrow will bring. So see you will someday see that you have also been an insperation to your son because he too sees how strong you are too and for him. But remember its okay for you to need to let go sometimes to, believe me I found out the hard way. My prayers are with all of you.
ReplyDeleteWe're doing a 40 day read through the New Testament - only takes about 30 minutes a day. Join us and it will help you stay on track. Here's a link to the plan that we are following:
ReplyDeletehttp://catholic-resources.org/Bible/Reading-40DaysNT.pdf
Yes, you are inspiring and yes, it does make me want to be different. Just seeing a family care deeply and love with abandon in spite of difficult circumstances makes me want to be a better person. Life is difficult, we all know that. But when we are able to rise above the difficulty, cling more tightly to Jesus, and live in the space of the unknown, it is inspiring. Thank you for being an inspiration by just being fully human, and yet fully dependent on God, NO MATTER WHAT! It gives us all hope that when we are called to do the impossible, that somehow, we, too, will rise to above our circumstances and allow God to do His good work in and through us as well.
ReplyDeleteGod bless you and I'm praying for you all, and especially for that beautiful blond little boy, Caleb! (Love the husky p.j.'s too cute!) Diane