It has been quite sometime since I blogged. So much has been packed into the last few months, and I have yet to blog about Landon’s fantastic trip to Disney World, which as I said, was fantastic and memorable in every way. But right now, my mind isn’t in a place to do that entry justice. My mind is in a place that I desperately want out of.
This year has gotten off to a rough start for our MPS community. In the first 19 days, we have lost 2 boys, another is fighting for his life, and a beautiful young lady may have just had her last birthday on Earth, as her body is tired and nearing the end of its fight. As parents of these children, I know that we all take the lose of and struggles of our kids very personally and always wonder when our turn will be. Because it’s inevitable. We all face the same fate and it’s not a matter of “if” but “when.”
Last week, Landon had an “incident.” Seemingly without warning or reason, he turned purple and his oxygen levels went down to 81 and his respiration were at only 8. Thankfully, it only lasted about a minute and he snapped out of it and has been fine ever since. And I have been heading down the rabbit hole since. Of course we will run some tests to rule out things like heart conditions and a few other things, but in my gut I feel like I already know the answer, and it’s a problem that there is no solution to…. The all hated and dreaded progression of sanfilippo syndrome. His brain is becoming more and more damaged and his autonomic responses are now being interrupted and essentially, his brain “forgot” to tell him to breathe in that moment.
The thoughts that have swirled around in my mind since this incident are just unbearable and traumatizing. Although it could be weeks, months, or even years before something like this happens again, all it would take is one more time with an episode that lasted too long, one time where his brain “forgot” for too long, and we could lose him. I have spent years trying to come to terms with the fact that we will lose Landon and Blake, and the more years that pass, the more declines we see, the more real this disease becomes. And the harder it is to come to terms with any of it. Because of the progression we’ve seen in Landon over the past year, the incident this past week, combined with so much heartache in our MPS community in such a short amount of time, I have found myself so far down the rabbit hole that I’m not sure which way is out anymore.
My very good friend, Amber, has said to me time and again “It’s ok to go down the rabbit hole sometimes, but you can’t live there.” And most times I have been able to just stop in for a visit and find my way back, knowing that so much happiness still lies ahead for our boys in this life. This time, I stayed too long and now finding the way out is becoming difficult. I have let the emotions take hold and they are running my life. Instead of focusing on today and the fact that things are ok now, I am staring into the future and allowing the fear and uncertainty of it to consume my thoughts. And I know that is not healthy or productive. I feel like I’ve been on the verge of tears more often than not. I am so afraid of what’s coming, that I’m forgetting to appreciate now. And even though I know better, I can’t let it go. I’m watching people lose their children, children lose their battles, and I know someday way too soon, I will walk in those parents shoes, and my children will be the ones losing. And it hurts. It takes my breath away and makes me physically ill. I can’t accept that there is a purpose for this. This will never be ok. I will never be ready to say goodbye. How do you come out the other side of losing your child? How do you do it twice?
And all day long, for days now, my mind has been stuck here. Afraid of the future, sad about the present, and desperately wishing for days that are long gone. I know there is a way of out the rabbit hole, but right now, I can’t see it.