I remember the day we first were given a diagnosis for Luke. He was six months old by the time genetics had finally settled on a result for his blood analysis.
In most cases searching or giving a name to something unknown in your life brings all sorts or closure. It's like ok, this is what it is... this is how it's treated or handled. The best assurances given that day were that there's little to no information other than lists of symptoms that probably won't fit because it varies between children; but that I would know more about it eventually than he would.
Oddly enough, never cried that day! Granted I have resembled an emotional puddle on the floor on several occasions when the moment called for it, but not on diagnosis day. I had this little boy sleeping in a bucket seat that still needed me. We were driven as a family to focus on the now. There were too many variables to focus on the future.
I still remain that driven parent I was back then. Though life's adventures can remind me at times of the old 80's action flicks where the hero falls off a cliff and is hanging on precariously with one hand to the edge. You're sitting there wondering if the hero is going to find the strength to climb back up. That question is set aside as they let out a rebel yell, digging into their inner well of strength to bring their other arm back up again and climb back up.
In most cases searching or giving a name to something unknown in your life brings all sorts or closure. It's like ok, this is what it is... this is how it's treated or handled. The best assurances given that day were that there's little to no information other than lists of symptoms that probably won't fit because it varies between children; but that I would know more about it eventually than he would.
Oddly enough, never cried that day! Granted I have resembled an emotional puddle on the floor on several occasions when the moment called for it, but not on diagnosis day. I had this little boy sleeping in a bucket seat that still needed me. We were driven as a family to focus on the now. There were too many variables to focus on the future.
I still remain that driven parent I was back then. Though life's adventures can remind me at times of the old 80's action flicks where the hero falls off a cliff and is hanging on precariously with one hand to the edge. You're sitting there wondering if the hero is going to find the strength to climb back up. That question is set aside as they let out a rebel yell, digging into their inner well of strength to bring their other arm back up again and climb back up.
I needed a good reminder of the driven philosophy this past month. Sleep has been a safety issue for some time with Luke. Amongst the issues is every time he falls asleep, his oxygen levels drop an average of almost 20%. It's because of his apnea episodes that this past April he aspirated stomach contents after choking in his sleep and developed pneumonia.
Now because of his chromosome disorder, we are mindful of giving him antibiotics. His body has a tough enough time fighting things off, overuse of prescriptions could put him in danger of future bugs. This round of drugs made almost no improvement in his lungs and we were told to take a wait and see approach for his needs.
After a couple of weeks of little to no sleep at all, we had it and headed to the ER in hopes of discussing other options. We discussed with the doc on call that his cough was worse while he lay flat. So we decided to check his oxygen sats as he lay in bed.
12 minutes into testing, I'm at the head of the bed talking with Luke. He suddenly turns his head in the opposite direction, his eyes rolled back in his head and was unresponsive. Alarms were going off and I knew enough to step out of the room as they worked on him for three minutes. Longest three minutes of my life, I thought he had passed away. Suddenly he's responsive and confused, but completely fine. We still have no exact idea what it was and why it happened.
So we checked in to hospital for monitoring until he would show some measure of improvement. For special needs parents, this is also often the time where you get your to-do list of specialists to be seen done. It's easier for them to visit you in hospital than to book in for a clinic appointment. We discussed an overall theme, who Luke was and where we felt he was heading. The truth is he's stable, but his future remains uncertain. With this knowledge we were asked to make the formal decision for our resuscitation wishes. What our health region does is put the details on a piece of paper that needs to be carried with you almost everywhere you go if god forbid something were to happen to him.
Just what we needed as a family, a physical reminder of a potentially scary future. I didn't like even seeing this page, spent a lot of time in tears just feeling devastated that we were at this point. Emotion had me hanging off the proverbial 80's cliff.
Now because of his chromosome disorder, we are mindful of giving him antibiotics. His body has a tough enough time fighting things off, overuse of prescriptions could put him in danger of future bugs. This round of drugs made almost no improvement in his lungs and we were told to take a wait and see approach for his needs.
After a couple of weeks of little to no sleep at all, we had it and headed to the ER in hopes of discussing other options. We discussed with the doc on call that his cough was worse while he lay flat. So we decided to check his oxygen sats as he lay in bed.
12 minutes into testing, I'm at the head of the bed talking with Luke. He suddenly turns his head in the opposite direction, his eyes rolled back in his head and was unresponsive. Alarms were going off and I knew enough to step out of the room as they worked on him for three minutes. Longest three minutes of my life, I thought he had passed away. Suddenly he's responsive and confused, but completely fine. We still have no exact idea what it was and why it happened.
So we checked in to hospital for monitoring until he would show some measure of improvement. For special needs parents, this is also often the time where you get your to-do list of specialists to be seen done. It's easier for them to visit you in hospital than to book in for a clinic appointment. We discussed an overall theme, who Luke was and where we felt he was heading. The truth is he's stable, but his future remains uncertain. With this knowledge we were asked to make the formal decision for our resuscitation wishes. What our health region does is put the details on a piece of paper that needs to be carried with you almost everywhere you go if god forbid something were to happen to him.
Just what we needed as a family, a physical reminder of a potentially scary future. I didn't like even seeing this page, spent a lot of time in tears just feeling devastated that we were at this point. Emotion had me hanging off the proverbial 80's cliff.
I had to shake it off in a big way. I went back to something I had been ignoring for some time which was my artistic side. Decided to tap into what I had saved for a new tattoo and went for it. You're probably asking yourself, what it means.
Life is unique and freaking beautiful in its own way! Luke is still with is and blowing us away with his sense of humor and his busy seven year old boyish nature. The watch is the time that he was born, but also it's a reminder that is there's anything I can give him even when things are uncertain is the gift of time!
My son is a kid who lives in the now. His crazy and impulsive ways have us constantly surprised lately. When he wants a hug, he demands it at an instant. If he can't express his desire to play in the water, he goes for an open toilet! To live with such reckless abandon is so enviable and yet something we are so capable of doing as a family! Through everything, we choose joy! He is so worth it!
Life is unique and freaking beautiful in its own way! Luke is still with is and blowing us away with his sense of humor and his busy seven year old boyish nature. The watch is the time that he was born, but also it's a reminder that is there's anything I can give him even when things are uncertain is the gift of time!
My son is a kid who lives in the now. His crazy and impulsive ways have us constantly surprised lately. When he wants a hug, he demands it at an instant. If he can't express his desire to play in the water, he goes for an open toilet! To live with such reckless abandon is so enviable and yet something we are so capable of doing as a family! Through everything, we choose joy! He is so worth it!
We've got our work cut out for us these days! lol!
Don't let anyone ever tell you a bum scooting child never finds trouble!
Don't let anyone ever tell you a bum scooting child never finds trouble!