While scouring the internet on my ipad one night in the hospital with Apollo, I stumbled on the Beads of Courage website. I have no idea now what I was searching for…probably a blog about kids with feeding tubes or heart defects. Anyway, it looked like an incredible program and I made a mental note to look into when we were back home. Not surprisingly, I promptly forgot. I suddenly remembered the site on day in late August and sent in an application for Apollo. Even though Seattle Children’s Hospital is listed as one of the hospitals that participates, I found out it actually doesn’t. Apollo qualified for the Beads from a Distance program, however.
Not long after being accepted, we recieved Apollo’s first shipment of beads. Each bead represents a doctor’s visit, hospital stay, surgery or procedure that Apollo has had done. I didn’t think he’d have very many beads. After all, compared to a kid with cancer, or a more serious heart defect, he’s had relatively few procedures and hospitalizations. Not only that, but since we were playing “catch up” not every procedure was represented. You could say I was a bit stunned when I saw how many he’s accumulated so far.
Just as a quick run down, the ones to the left of his name are procedures and hospitalizations before his diagnosis of a double aortic arch. The ones to the right are procedures that have happened since his diagnosis. I won’t go into them all, but the blue are clinic visits, the yellows are for spending the night in the hospital (because we were doing “catch-up” we don’t have a bead for each night, but one for each hospitalization).
Beads of Courage provides a treatment journal where we can track Apollo’s procedures. For hospitals that participate, doctors hand out the beads after each procedure. In our case, I send in an update every month or two to get his new beads.
These beads, my friends, represent two years of my son’s life. This is so therapeutic for me as his mom…and certainly will be therapeutic for him in the future. He already loves his beads and even calls them his “Beads of Courage”. I look at that string of beads and think it’s no wonder he is clingy and fussy and has trouble sleeping.
It often times bugs me when people tell me how brave Apollo must be. He isn’t brave, he’s a toddler with serious health issues. He has no choice in the matter. But to have this string of beads, that represents his journey to health? To help share his story? I can’t tell you how much this means to me.
Thank you, thank you, to everyone involved in the Beads of Courage program. You can bet that when we travel out-of-state for Apollo’s next surgery that these beads will come along with us.
I think I forgot to share this, but when we down to Seattle on September 11 for Apollo’s neck ultrasound, Enoch and Tilly had him in the playroom. A parent came in and said to their child, “It’s time to leave, so-and-so has their surgery now”. Apollo overheard this and started yelling, “no I already have heart surgery! I no have heart surgery again!“. Chuck walked in at this point, and Apollo was saying, “No, I already have heart surgery, Daddy” as he cried in his arms.
Apollo is at an unfortunate age where he remembers his surgery, but doesn’t understand why he had to have it done. He was seriously traumatized by the heart surgery (I believe because his pain was uncontrolled). If you’re a long-time reader, you probably remember he was so upset he was on anti-anxiety medicine post-surgery.
He likes to carry his beads around and ask about what each one means. Even now, at two, the beads mean something to him. Once again, thank you, to everyone who has and does support this organization. Apollo has certainly been blessed by it.
Oh gosh. I never really understood why people liked beads of courage so much. They advertise fundraisers on tv all the time, and I just never understood the meaning behind them. What an incredible way to memorialize his journey. Poor old Apollo. I can’t even imagine what it must be like to be him, to not understand. Praying for you guys.
Emily, interesting. Beads of Courage must be “bigger” in NZ than here. Ben knew exactly what they were when he saw them, but Chuck and I have never even heard of them before! Believe me, it’s a worthwhile cause. Someday he’ll look back at these beads and this blog and hopefully it will help him process all he’s been through.
Those beads are so cool. Cute picture of your kiddos too.
I’ve never heard of them, but what a great idea. I wish I had had something like that when my oldest was in and out of the hospital and such. A great way to catalog his journey.
Thank you for sharing about this. I just sent an email seeing if I could enroll my daughter. We are at the beginning of her journey, but I know it will involve multiple surgeries involving her brain and face.
New to me as well, but passing on to a friend! Glad they bring you and sweet Apollo comfort!
Poor Apollo, how the parents react to surgeries, doctors and medical procedures really makes a difference for the children. Take it from a nurse, when parents make a huge deal out of things the child is traumatized. I have seen parents scare their children so much by explaining procedures in detail. A toddler does not understand what surgery he is going through, just that it hurts. He should be told he is brave because he is and this will make him feel strong and special in a good way. Yes, he doesn’t have a choice but you can build him up as much as possible. Maybe vent on your blog but make sure you don’t say anything negative in front of him, like, he is scared to sleep, etc. Hope you find the answers he needs and he has as smooth as possible recovery.
We are about as laid-back as it gets. He didn’t get his anxiety from us. In fact, we always make an effort to make his hospital experiences as positive as possible. We almost always allow extra time at our visits so he can go into the playroom which he loves. He actually enjoys going to the hospital and LOVED the Ronald McDonald House. I’m pretty sure the heart surgery was so traumatizing because of the uncontrolled pain. The surgeon told us at the time, before he even woke up, that she didn’t think the spinal block worked, and judging from his pain, I think she was right. This is something we will definitely bring up when he has his surgery re-done. And we are VERY careful not to say anything negative in front of him.
As an RN I agree…but knowing most the story I can agree that it was the mismanaged pain Apollo was in…not Renee and Chuck’s reaction to it.
I totally understand what you are saying. I work with adults and am in a float pool..I cannot tell you how many times I have walked in to have report given to me on a “difficult , anxious, alot of pain, demanding patient” only to go in and have a wonderful 8 hrs with that pt. So yes esp in adults if you have caregivers giving off anxious, judgmental vibes than this can become a vicious cycle.
In Apollo’s case that dang spinal did’t work. I had a grown man cry the other night over a failed spinal….
Yup. The surgeon told us it didn’t work when she came out of the OR. We had no idea how much extra pain that would cause! We will definitely be giving them an heads up about it in Texas.
Thanks for sharing about this organization. How very cool. (If you haven’t already, try searching Google Images for “beads of courage” to see some incredible pictures of kids and their beads!)
What a great organization! Never heard of them either.
I dont know how you feel as a parent, I have never had a medically fragile child. But my child has been mentally fragile, and it is a tough road. We still deal with a lot of anxiety from deployments. My daughter dealt very badly with her 2nd (her first she was 6-18 mo old and did better though not great) terribly. When he came back and she was 18 mo old, she remembered him which is uncommon. She attached to him very strongly, and was not prepared for the shock she would endure when she was 6. Sometimes it scares me, she is 10 now so I think is this permanent? She has suffered an additional deployment when she was 8 and it was pretty bad also. She suffers anxiety and problems with non military things whereas she was a normal, mentally strong little girl before. I am not saying she isnt strong. I am just saying, anxiety is a horrible thing to live with and as a parent, it is helpless to see them cry, freak out, cling to you, turn white, possibly convulse, sleep poorly or not at all… my daughter does not have the same reason, but I can say that for Apollo-this is a big part of his medical problem. The anxiety. You guys can help him through it. we keep things low key, try not to make a big deal. Will be easier when he can reason more, and I know you can help him through it.
Oh Renee, your post made me tear up. I’m so glad you found something to bring a bit of encouragement to your days, and to help Apollo too. What a treasure! Bless you, friend, and keep up the good fight. And for your sake and Apollo’s, I sure hope this necklace isn’t down to his knees by the time it’s completed!
I’ve also never heard of them. That is a really neat idea! I hope it will be a helpful concept for Apollo to latch on to more and more as he gets older. It’s neat that he already knows it’s his and its name.
What a neat way to remember such a difficult time you all are walking through. So glad for his beads of courage – he is very courageous. God strengthen you all for the journey ahead!
LOVE beads of courage–all the hospitals that I’ve worked at have been part of the program (or something similar; in Toronto, they have Bravery Beads). Even my two and three-year olds would proudly go through their beads with you, telling what each one meant. A few siblings even took the beads to show and tell, so they could describe what their brothers/sisters were going through. Such a great idea to help the whole family through a very difficult time!
Great idea about the show and tell! Thanks for sharing.
Wow I LOVE these. I wish they had them for all sorts of “special needs” also. I think of my son..and I think of a bead for every work up..every evaluation..every med change..every therapy tried…every Dr visit(though he would have a necklace by now) also every success I thought may not happen (learning to read, math etc)..I think it would give me a “visual” reminder in those moments where I need a bit more patience.
If I was craftier and had more time I guess I could make one myself:)
These are so great! I am glad they were able to make Apollo one!! Sorry he has to have one at all of course…but like you said , what a great way to start a conversation about it all
I saw your post on this group, and because of it myy girl scouts sewed 15 bags for the group. I hope everything goes well in Texas.
Aw, that’s so sweet! Be sure and tell you Girl Scouts about Apollo. Those beads mean so much to him.