Lately, many of my friends have been asking me if I have seen the movie, Miracles From Heaven. You can watch the movie trailer here. I have been told by many that they thought of our family when watching the movie. I began to think that I should probably see the movie myself. It wasn’t until after Zack’s surgeon asked if I had seen the movie that I decided to be brave and actually watch it.
The movie was about a little girl named Anna Beam who suffered from an unknown intestinal issue. It chronicled her family’s struggle to find a diagnosis and a doctor who could help her. It was also about her mother wrestling with her faith as she watched her little girl in pain. The movie followed the family through hospitalizations and surgery and through a tragic accident that left Anna cured – thus the miracle part.
I have to admit that some scenes were pretty tough to watch as they were incredibly similar to our experiences. Small bowel obstructions, NG tubes, feeding tubes, painful nights, vomiting, loads of medications, and feeling helpless are all things that we have gone through. Happily for our family, all of our doctors knew something was wrong with Zack, they just did not know exactly what was (and still is) causing his issues. We did not have to fight to prove that he was sick. I cannot even imagine how hard that would be.
This movie caused me to take a look back on Zack’s journey. On days when Zack feels well, the past few years do not seem too awful. I kind of think of it like labor…your mind blissfully lets you forget the pain….until the next time you feel that first contraction and then the memories come flooding back. This movie was like the first contraction. It brought back all of the feelings and memories and reminded me of all the things we are still doing.
In the beginning of the movie, Anna was shown with a distended belly. She was in pain all of the time. That was very similar to Zack. Here is a picture of Zack and his big belly before he was diverted with the initial ileostomy. He looked like this most days, although his face was much cuter, he didn’t have a rash and he was in focus. …..I know, not the best picture, but it illustrates my point.
Zack when his belly first started getting distended.
While I remember this time in his life, I tend to forget how we could hear his stomach sloshing when he moved. I forget how he needed his belly rubbed all of the time. I forget how inactive he was and how much pain he had. Obviously, I am remembering now. I am so grateful that Zack’s doctor recommended he have an ileostomy!
That’s where the movie and Zack’s story differ. Anna had a disease called Chronic Intestinal Pseudo-obstruction. Over the past few years we have discussed this disease as a possibility for Zack with his doctors. One of the reasons it is not suspected for Zack is because pseudo-obstruction usually affects the motility of the small intestine. Zack’s motility issues are in his large intestine. So while many of the symptoms Zack has when his colon is connected are similar, it is not likely that he has this disease. I am grateful as the disease does not have a cure. Of course, his small intestine has other issues that nobody can figure out, but that is another story.
While Zack is doing really well right now and I am hopeful we are on a good path, it is easy to forget that he was a pretty sick guy in January, he had surgery in December, had testing in November, had testing in August, had emergency surgery in July, surgery in March and was super sick before that while he was reconnected. We still do not have any answers as to why his colon works some of the time and not others. We still do not know why his ileostomy has such high output and loses so much sodium. We do not know why his stoma prolapses. Just like the parents in the movie, we are often frustrated by Zack’s illness.
Another reason why I have been so interested in this movie is that the doctor who finally helped the Beam family works at Boston Children’s Hospital. Zack’s colorectal surgeon at Cincinnati Children’s Hospital will begin working at Boston Children’s in June. She will be working closely with the doctor from the movie and she is going to have him take a look at Zack’s case. While Jim and I are completely happy with all of Zack’s doctors and the care they give Zack, having another expert take a look at everything with fresh eyes is an unexpected bonus. Not to mention the fact that we have great friends in Boston that we will get to see when we visit his surgeon. That makes me happy!
Another part of the movie that moved me was a scene where the mom had all of the medications Anna took scheduled out on a white board. I do not do that, but I do keep a journal indicating what Zack eats daily, what he drinks daily, how much formula we give him and how much output he has daily.
Just to give you a glimpse into his daily regimen. We administer sodium chloride pills three times a day (for a total of 7 pills) to help keep his sodium levels up. Zack gets CeraLyte, an electrolyte replacement, four times a day through his g-tube as another line of defense for his low sodium levels. On really high output days we give him a rescue dose of CeraLyte in his nightly formula. We give Zack Immodium pills three times a day to help slow down his output. If his output is really high we give him four pills a day. He takes an ADHD medicine in the morning. Zack gets formula through his g-tube at night to help keep his weight up. We flush his PICC-line with saline and heparin twice daily. We give Motrin and Tylenol for pain most days. And finally, we change ostomy wafers and bags pretty much daily. That sounds like a lot and it is, but we have just made it part of our routine. It is just what we have to do to keep Zack healthy. There are days where it seems like a lot and I feel tired but, for the most part, it is not too bad.
I am glad that I watched Miracles From Heaven. I am glad that I have had a chance to think about all that we have done with Zack. This movie made me think about my faith and how there are times when I just do not understand why God chose our family to walk this path. I question what on earth all of this is about. I look forward to talking to God one day and finding out how He used this for His glory, because I truly believe He does. But through the questioning, I am able to see some of the good that has come through this time. I see the people he has placed in our lives who encourage us and help us. I see my child happy when he has so many reasons not to be. I see new friends He has given us with children who are also chronically ill and the support we give one another.
Some of my favorite verses in this season of our lives come from 2 Corinthians 12 verses 8-10. Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. And that, my friends, is how we walk through this crazy life of ours.
Now, I realize that I should have just stopped writing after the last paragraph…but it is April Fool’s Day and I had such fun tricking my kids today. I made pound cake sandwiches with frosting that looked like cheese and fooled Zack into thinking it was grilled cheese. It was awesome and also a bit mean since he never gets to eat cheese. I bet you wish I was your mom. But my favorite prank was showing Drew and Jake the photo below.
It is really just a picture of Zack’s bladder, but I think I made their hearts stop for a minute. It is the moments like these that make life pretty amazing.
Hug your babies!