As difficult — actually painful — as it was to make it through yesterday, after not grabbing any sleep the night before, I made sure it didn’t have any impact on Ryan. To him, his day was as productive as any other. In fact, maybe even more. I had him up-and-at-em’ at 4:30. He completed a full day of therapy well ahead of schedule, so I took this extra time to do more sensory exercises with him.
As for me… well, I crashed hard when Sue got home from work around eight o’clock last night. I remember flopping down on the couch and turning on the television, but that’s all. I can’t even recall what I put on to watch (I faintly remember a documentary on the Tuna industry, but I might have noticed this one of the times I stirred). By 3:30 I just couldn’t get back to sleep so I put on a cup of coffee and started my day. I’m sure I’ll regret my early start at some point later today.
The tough part about not having a nurse is the effects linger for days. Granted, the day following is clearly the worst (but coffee makes it bearable). There is no opportunity to catch up until the following weekend. This last absence is especially difficult because it happened on a Sunday, meaning I must make it through the week before catching up. Heck, now that I think about it, I might not have this luxury this weekend. I plan on visiting Kari at WVU to attend a benefit for Ryan (I’m so excited to see her and all the people of Morgantown!). I can’t make it to the Dragonfly event the following Wednesday, but will be there for the 5K race on Sunday morning.
<via http://www.funvista.com/>
Without fail, Ryan must be watched at all times by someone who knows him well enough to spot trouble brewing before it gets out-of-hand. In our case, just like any other parent, it’s just Sue and me. This is why we sleep beside him even when we have a nurse. It allows us to switch from actively to passively monitoring him (where, even while sleeping, we listen for monitor alarms, coughing, respiration, etc) while the nurse tends to routine care.
I simply cannot even take a cat nap while alone with him. In fact, I won’t let myself to close my eyes for very long for fear I might drift off. When extremely tired (like yesterday) I drink an excessive amount of water to wake me — with the urge to urinate — if ever I did fall asleep. This works better than setting an alarm because I can’t snooze it… can’t accidentally turn it off… can’t ignore it. This was a little trick I learned from the many nights waiting for my children to get home.
Try it… it works.
MOTNC checking in on you, Ryan! Hope you are having a peaceful night and hope your mom and dad are too. I know how hard you are working to come back to us, Ryan!! You got this buddy!!!
A.H., God Bless You!!! You are doing right by your child, just as Ken and Sue are doing right by theirs. I’m so pleased to see another supporter from DE. I hope your daughter is feeling better, and I pray that they find out what is causing those fevers.
Ken, please let us know how you’re faring today. If it’ll make you feel better, I made crab cakes the other day and had some extras so I’ve put them in the freezer for you. Will get them over sometime soon, okay?
Please give our boy a hug from the Liberty family!
Love, carla
It’s ironic that I’m reading this right now. I don’t post often, but I try to check in at least once a day. Today however, I haven’t gotten around to it until close to 1am. I’m currently in the children’s hospital in DE (yes, another supporter from DE) with my 3 year old daughter who was admitted today. She’s been fighting off high fevers (reached 106.5 last night) for a week and is being kept on IV fluids and antibiotics. I’m confident she will he fine, but it’s still no fun.
Now to my actual point. The reason I’m writing now is because I took a page from your book and opted to stay awake to try to let my wife get some sleep. The father on the other side of our room has been “sawing logs” since 9:30pm, doing his best to keep everyone awake. Just as I was starting to lose my senses, endlessly playing on my iPhone, getting “itchy” (I totally get that now), and thinking about how tired I’m going to feel tomorrow, I read your blog about being tired. I’m suddenly realizing that it’s not that bad, and I’ll get through it.
I know this post doesn’t add any rest to your body, Ken, but I wanted to say thanks for the rejuvenation your blog has give me tonight. Thanks for demonstrating every day just how far a parent can go to care for their child.
I doubt I’ll last through the night. But in honor of you, and Ryan, I’ll try.
And just as I sign off, my wife just started snoring, so I guess she’s asleep. Mission Accomplished…for now.
Hi Ken, the most amazing thing about this is that, in spite of chronic sleep deprivation, you always ensure Ryan’s quality of care remains excellent. You demonstrate an exceptional kind of fortitude few people possess. Seeing that kind of devotion is deeply inspiring. Only folks who have had primary responsibility for taking care of a loved one can really appreciate what you go through. When a person cannot communicate, and suddenly has a problem, their only hope is if someone is paying attention to them. And in Ryan’s case, this requires someone who is properly trained and knows exactly what they’re doing. I’ve come to the conclusion that only souls who have walked in your shoes can truly appreciate the magnitude of energy, effort and sacrifice you and Sue have made in order to help Ryan recover. This kind of love is a force to be reckoned with. I pray your day with Ryan is positive and trouble free. God bless you for being such a wonderful Dad.
Sending love, hugs, lots of hope and faith
Paula
I’m glad you got a rock-solid sleep last night. It astonishes me that you were even more thorough with Ryan’s treatment than usual while you were at your lowest point. I hope your fundraisers do well in WVA.
Love your cartoon!! Yep, if you own pets, never put anything in the tank that could harm them — or children, for that matter (remembering the one about the little girl that served her very thirsty dad toilet water at her tea party). LOL
I’m sure you know that a big glass of milk and half a box of vanilla wafers will give you a much more restful sleep (6 or 8 wafers works just as well, but I know you guys!).
Happy to hear that you will get a little break this weekend. Good news, Ken!
Wishing you a peaceful day — no drama, please! SHSP NGA
Sending love and good thoughts across the river.
Always here. Forever and until.
Willing your precious Ryan to complete healing.
Willing peace, strength and consistent HOME care your way… GOOD GRIEF!
Love the cartoon pic… very funny.
With love and in prayer,
Keri, My Frankie and Family
Glad you got some sleep! Also, good to hear you are getting out this weekend for some sunshine and smiles with your faves in Morgantown. My boy is coming up for the Dragonfly event, but has to work Sunday back here. Hope the weather holds out for the run, it is a great idea, something that might even be a possibility at the beach. 5K runs always do well down here since folks like to run at the beach. Hoping for some sunshine in your day, always thinking of you guys.
Ken,Glad you got a few hours rest.Hoping today goes smoothly for you and Ryan.Always here thinking of you all. Give a big hug to Ryan from me and try to have a good day love gail
Hello…I’d say 8 to 3:30 is a start to catching up on some sleep. Every time I read that you have been let down by the nursing agency my heart sinks. Admittedly, I know nothing about nursing or running a skilled nursing business. It seems like it would part of the companies requirements to provide dependable service, and back-up. You do owe it to Ryan to take of you too…..I hope today’s routines are smooth.
Nice to hear about the benefit!