I hope missing a day hasn’t caused too much concern to you all. I know how so many of you are following us along and are a part of this journey too. Unfortunately after a couple of big days I got home last night and thought I’d just have a wee lie down and fell into a deep sleep. I woke around 9.30 and crawled into bed. I am not normally someone who needs much sleep. Well What I should say is that over the years I’ve got used to having bugger all of it, but there has been a couple of times over this past seven weeks where I have just hit the wall. Yesterday was one of them.
Anyway, to more important matters. Darryl is feeling much better now the trachie is out and he is back at rehab, however he has been having trouble with pain in his lower stomach. I have struggled over the last two days to try and work out what is going on. I thought it may be a stomach ache from constipation but that was remedied and the pain increased. Process of elimination had me feeling it could be some sort of urinary tract infection.
I don’t know much about them, but by way of body language, finger signals and observations it seemed more and more apparent the centre of the pain was originating from that area. My suspicions were heightened at physio when after explaining some of the symptoms she suggest that it could be a possiblity. Anyway without wanting get get too descriptive about this it was confirmed tonight that he did and he is on antibiotics for it and some additional pain relief. What a relief to finally get to the bottom of it.
Last night when I left I was so frustrated and upset that I couldn’t seem to pin point the issue with his pain. I feel so utterly helpless and to be honest feel that I am letting Darryl down if I can’t be there for him by getting to the bottom of his pain or discomfort. I sat there yesterday just watching him trying to pick up on his body language and as I sat at the end of his bed he raised his left arm above his head and with great control used his fingers to raise both eyelids so he could see. He raised his head off the pillow looked straight at me. I could see the pain, frustration and anguish in his eyes as they met with mine.
While the action itself is a remarkable indication of how far he has come, the sadness of looking at my son, a previously Greek God-like teen with the world at this feet, reduced to having to lift his own eyelids with his one good arm so he could see where his Dad was, just broke my heart. It was all I could do not to just burst into tears right at that moment.
It is so hard sometimes not to just melt into tears of sorrow and hurt. Yes he is making great progress considering. Yes he is still here. But there are those moments when all that I am as a father is torn at the seams in the sense that no parent ever wants to see their child so far from the person you know them to be, unable to just make it all better. I am not meaning to beat myself up over it or feel the slightest bit of self pity. Not at all. I’m just being Dad, who wishes his son didn’t have to take this particular road.
The bottom line is though, he is on this road and most importantly it is leading back to all of us. Like any road, sometimes the twists, turns and potholes will make it uncomfortable, but nonetheless it is still a road and it leads to the destination which is what we are focused on.
This afternoon when Brenna came back after Catherine and her had returned from up North where they had gone back to say goodbye to the kindy kids, Darryl opened his eyes for her and started to make some sounds. It appeared to be monumental effort for him to get sounds out but he did, which brought utter joy to Brenna and giggles of delight.
Just a day ago Catherine had rung to say that Brenna had had a meltdown (understandable given the stress and changes to her life also) but mostly because she wanted to come back and see Darryl and hear his voice. She was sobbing uncontrollably because she said she couldn’t remember what Darryl’s voice sounded like and she wanted him to talk again. In the end she decided that she could hear him on a video that we had taped last Christmas and she thought it would be good to play Darryl the video as well so he could remember what he sounded like himself. Amazing!
So having decided that she settled down. It was all the more significant today then when she arrived and Darryl made sounds that was as close to Darryl’s ‘normal’ tones as she could have hoped for. It was pure delight watching the happiness on her face and seeing Darryl looking at her as she giggled with joy.
Physio was very good again, and again he did more than the last time and is getting more movement in his legs and control over his left arm. He has had botox injections in his right bicep and right calf to stop the muscles pulling so tightly so we can stretch them back out as the botox stops the nerves in the muscles firing for two to three months. With one of the injections he let out a loud “argh”!!! which was terrible, but great all at once.
There will be much more to report tomorrow, but I want to thank you all for your words of encouragement. It is hard to read them to Darryl at times without shedding tears myself, but they, and you are an important part of his healing. My sincere thanks to you.
Darryl, you have been having your ups and downs, but you are still heading in the right direction. The courage you show is matched only by the silent determination that lives in every breath you take. I walk alongside you in constant admiration of your unquestionable character and will to succeed, through this and no doubt anything else that life might throw at you.
Love you always.
Dad
Recent Comments