New Diagnosis, New Treatment and What Will Really Stick



So, we have this incredibly insurmountable week before us. At least, it seems insurmountable to me. You see, we have a little boy who, to say the least, is incredibly medically complicated. His diagnoses have left him famous, but for not the reasons that most parents want their kiddo famous for. Most parents may admit to wanting their child to gain some sort of notoriety. Doesn’t that explain the rise of tv shows in which kids are highlighted for their rare talents? I mean, someone has to drive and apply for that child to be on TV. Maybe it isn’t that type of fame you are seeking for your kid. Maybe you want them to be the best dressed at school. Or maybe even you have nobler aspirations, like you take great pride in them being known for their kindness. Hey, I’m not pointing an fingers here. I’m right there with you. I absolutely swell when someone tells me that they love hanging around my kid. Or, that they want to have a playdate with them. But what happens when your child becomes known for how complicated they are. I actually overheard one of our specialists making a comment about our kiddo, “That right there is the case of the century.” Oh, sweet! That’s exactly what we were shooting for, stumping the medical professionals. Ha, ha, jokes on you doctors. You aren’t all knowing after all and we get to be the family to prove it.

Are you kidding me?! No one aspires to that! But, nonetheless that is where we find ourselves. We find ourselves on the what seems like a cusp of yet another diagnosis of some sorts. Yet another way in which this rare genetic makeup that God has given my son is fleshing itself out in real life. That’s the hard part about rare genetic stuff, you just don’t know what may be around the bend. Healthy lungs? Who knows. Ability to walk? Glad that one worked out. Functioning heart? We’ll see. And now the question that is before us, ability to clean out his system, process toxins? Maybe.
You see, in August of this year we headed to San Diego to do a series of medical tests called manometry. It’s crazy how doctors could take this test to measure how strong his digestive system was functioning. Did he have muscle weakness in his digestive tract or is it a malfunction because nerves are not firing properly? Maybe both. We would have to get more testing for that. Either way, his digestive tract is not working to the point where we have to take extra measures to help his body. One of those measures was surgical to treat one portion and another route of treatment involved medication.

When we started the treatments after we got results, we were told, “Let’s start with the lowest risk.”

Ok. Absolutely.

“Then, if this medication doesn’t work out, there are not many other options. You see, your child has Chronic Intestinal Pseudo Obstruction. There are not many options for what is going on with him. If the medication we start him on doesn’t work, we may have to consider higher risk medications.”

At that point with the doctor, we weren’t ready to process anything else. It was almost like we were frozen with the idea that there was another diagnosis, let alone what the next steps were. We didn’t ask, “So, what will happen down the road? What does this mean for his future? What are the indications of these treatments? Are there any side effects?” We just froze. We didn’t know what to ask. We just took one step forward and started with an invasive surgery and a medication. We didn’t want to google anything. Learn anymore on our own. We have been through several diagnoses with autism, heart conditions, seizures and now this. We have seen from experience that it can send me into an utter tail spin. So, this time was different. We decided that we were going to just take one step at a time. We had to so that we didn’t live in fear of the future. We chose not to learn more so that we could enjoy today.

Well, this step that we took with medication isn’t working. What we know from here is that further treatment involves higher risk. Higher risk means dangerous indications for his heart. We find that our God has placed us in this position of asking questions about quality of life. Do we treat the heart or digestion? Do we think about function or pain? Does treatment mean better life or not?

Hard questions. What parent can ever prepare for that? Answer, none! You aren’t made for this. You aren’t chosen to handle this because you are strong. You handle this because you have to. You become strong because you love your child. You’re choices are man up, or let your child suffer.

So, with those questions before us, I have admittedly been avoiding, living in denial. I haven’t made hotel reservations to travel to San Diego. I haven’t made arrangements for our other children. The reality of what is before us is just too great.

Then, I think about that phrase, “reality.” What is real. What is really before me? I think that I know but I don’t know. I don’t know what life will be like in a year, let alone next month. That’s not my reality. That’s my unknown. I’m afraid of my unknown.

What really is my reality before me then? What can I can I count on to be true? I can surely count on the fact that all of our bodies are wasting away. That may depress some of you, but for me it actually brings comfort. It levels the playing field. Hearing that my son’s body may be wasting away shouldn’t be a shocked. The part that stings is that it seems unfair for it to be sooner rather than later. But, the reality is that some parents bury their children. Not all parents experience full lives with their children. They may have a few hours, weeks, months or years with their child. It sucks! It more than sucks. It was never meant to be this way and we feel the sting of its abnormality. Life was meant to be forever.

And here is what I find to be the beautiful thing...life is forever. There is a reality beyond the pain that my son is experiencing. In the book of 2 Corinthians in the bible, chapter 4 verse 16, the author Paul says, “So we do not lose heart. Though our outer self is wasting away, our sinner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.”

So, while my boy’s body is wasting away, his heart can actually be living! While I may see his body get weaker, it does not mean that his inner being, what will last forever, is being touched by this condition. That’s where I find my joy! That is where hope resides, in a view of the eternal. That is what is real!

In Joni Eareckson Tada’s book, A Place of Healing, she writes of a friend who was experiencing a debilitating case of diabetes…

“ Melinda has not lost heart. The diabetes may be taking much away from her, but it can’t take that away. The doctors can’t amputate that. The woman is quite literally wasting away, week by week, day by day. But she has not lost heart because she places her trust and confidence in Christ. Melinda knows that no one - no disease - can take away the real Melinda, because He is actually renewing her day by day.”

What a beautiful thought for my boy! No disease, no condition can rob you of who you really are. You are a boy who makes everyone smile! You are a boy who can sprint through life, literally. You are a boy who lets NOT ONE person go unnoticed. Everyone matters to you! You are a boy who loves music and cannot contain his joy. You are a boy of ingenuity as you learn how to get your points across without words. You feel deeply. You love freely. You are brave in an unaccepting world. You don’t give a rat’s butt what other people think of you.  And I want the world to get to see so much more of you! I want you to be around for a very long time so that everyone else can taste the beauty of diversity, hard work, long battles, small celebrations, and life just not turning out like you thought. Oh no sweet boy. It is nothing of what I thought it would be. It is far better! You have taught me that. God has used you as a vessel to change my life. No doctor’s appointment, test or diagnosis can change that!

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