Confusing title for this article, isn’t it? Allow me to explain.
It was the middle of the night. Sometime around 3:00 AM, I’d say. Like more nights than I care to — or possible can — remember over these past five years, well, I just couldn’t sleep. I’m excited about our annual outing when the family piles in the van to look at the Christmas lights, but that’s just one thing (of many) on my mind.
I conceded that I was up for the entire night and went into Ryan’s room to make myself a cup of coffee. A damned strong one at that!
In a hushed voice I told the nurse that I couldn’t sleep and plan on having Ryan dressed and ready for me to get him up an hour earlier. I was looking in Ryan’s direction as I told her the change in morning plans.
Ryan rolled his head, almost on cue, as if to communicate his annoyance with being bounced out of bed so early! It look like he was telling me, “Dad, are you flippin’ kidding me!”. Of course, I doubt I’ll ever know if this was what happened.
Certainly not any time soon, by all indications.
It’s easy — and frustrating —- not ever knowing for sure. Is it a misinterpretation of random movements with what I yearn for as purposeful? I always convince myself that it has meaning in that moment. Yes, by damn, I deserve at least that. All I can tell you is, if not for his brain injury, I would have no doubt. Zero!
Ah, brain injury. That’s the kicker, literally (yes, that’s an unveiled dig at violent-felon, Austin Vantrease). There’s just no way to say for certain. How dare I risk looking for, let alone believing in, anything is done with intent. It’ll break my heart in the end. It’s always best to stay guarded when it comes to such things. To simply accept that it might have happened and keep looking for it, but not go popping the champagne cork quite yet.
I then gave it another try shortly after 4:00 AM. This time he didn’t move a lick. You see how it can make a guy doubt himself?
Brain injury distorts everything. Few statements irk me like when someone calls his (or my) existence “the new normal”. There is NOTHING normal about it. It’s… well… incredibly abnormal. I’m here to tell you that just because something is consistent that doesn’t make it one-iota normal.
Take Ryan’s heart rate. It’s often in the upper forties (40 beats per minute), especially when we first put him to bed. There are occasions when it dips into the thirties!
New? No, not since the injury.
Normal? No, and hell no!
Or how about his body temperature running one to three degrees cooler? I’ve had to argue with medical professionals that Ryan was running a low-grade fever at 98.6 degrees… or as what people believe as “normal”. Huh, normal! There’s no such thing in this tragedy. I’ll never get use to his vital’s monitor alarming on and off throughout the night. Who could?
This is not the new normal. This is the new Ryan. I loved him with all my heart then, and I love him equally now. He’s not the same, but he’s my boy no matter the devastation cast down on him and this family. Honestly though, it feels like I love two separate Ryan’s. Like he’s two different people.
I will always love him despite how many times he becomes someone new.
Holiday Card Update: Most of the holiday cards went out yesterday and the rest are going first thing this morning. I hope they make it to your mailbox by tomorrow!
- Holiday Outing (with photos)
- 2014 Year-In-Review
- Updated Website Statistics for 2014 (View 2013’s here)
Karyn Mandracchia Ahern via Facebook says
God Bless your family always <3 <3 <3 <3
Rhonda Morin says
I am struck by the words of your son being different today than he was 5 years ago. Please remember your daughter is different today than she was as 5 years ago, you are different than you were 5 years ago, I am different, we are all different. If we had stayed exactly the same it would not be life, we would not be moving forward. Ryan may not be “normal” but then I have never been accused of being too “normal” myself. 😉 Please keep looking for those small things and rejoice in them, he was simply asleep the second time you called to him.
Merry Christmas Ken, Sue, Ryan and Kari! May miracles surround you today!
Kaitlin Nëwman via Facebook says
Miss you guys. Hope to see you all sometime in the first part of 2015. ❤️
Jean Dolan via Facebook says
God Bless your family and help you to find peace this Christmas and in the New Year.
Stephanie Stotler via Facebook says
Merry Christmas to Ryan and family . its so heart breaking to know what happen to him I’m sorry you and your family have to go through this . I will keep praying for you
I was just looking at the website stats for 2013 and I am embarrassed that Nebraska is like 31. So my goal for 2015 is to move awareness of Ryan in Nebraska to the top 10. I have to try.
Jo nO says
Ken, you have the most highly developed intuition of anyone I have ever met–man or woman. Truly amazing and presumably developed out of Ryan’s need for you to be attuned to what is going on with him. It boggles my mind really, but it is one of God’s gifts to you. You might think about this gift as you ponder the meaning of Christmas for you personally.
Wishing you, Sue, Kari and Ryan a celebration at Christmas with the love of family, friends, good food, and lots of fun and laughter. These are also God’s gifts to us. He is blessing and keeping us in ways we don’t even realize–all the time!
Love and prayers always.
Hi Ken, this is one of the most touching and poignant things you’ve written — and that’s saying a lot given the depth and richness of all your writing!!
Ryan and Kari are deeply blessed to have you for their Dad!!! Here we are going into year six since VanTrease and May inflicted their wickedness on your beautiful son — and you are still holding Ryan up; you are still the wind beneath his wings….in fact that’s a fitting song for you <3 <3 <3
You're not just Ryan's hero — you have a whole team who look up to you. And we're still here, still praying and still believing.
God bless you my friend, and thank you for giving us a platform here to bond and stay strong on behalf of your family. It was said long ago that we get more than we give by being here. Still true.
Sending love, hugs, faith and hope…still and always…not leaving, not going anywhere…………
Tammy Johnson via Facebook says
Im so sorry you and ryan have to endur this day in and day out because of the hateful actions of others its just heartwarming to no that Ryan has a family as great as you
Marie Specksgoor via Facebook says
Nope I have two Nics I love them both with all my being what else can you do? My son is non verbal and can’t move on his own but he’s in there he lets me know he has his ways, brush his teeth and that right arm comes up quick, let a pretty girl go by, do something he doesn’t like head gets thrown. Heart rate also 50 or below also sometimes in the 30s, normal body temp 96.2! I get it and I don’t wear rose colored glasses anymore then you do, why are limited but they find a way! Hugs papa ken and merry Christmas to you and yours Xox
Corinne Cox says
Reading this post brought tears to my eyes. I can’t fathom the hurt and pain that yourself and your family go through everyday because of what has happened. I understand exactly why you say things are not normal, and you are completely accurate. Things will never be normal again. There is a routine to everything that happens in your day to day lives with what is necessary to care for Ryan, but that doesn’t make it “normal”. It warms my heart every time I read a post and can just sense the love that you all have for Ryan. He is very lucky to have you all as family. I pray everyday for a miracle that Ryan will wake up and I have faith that he will one day, on his own terms and in his own time. God Bless you all and have a very Merry Christmas! Much love!
Bonnie (Lovettsville) says
Loved the card. Many thanks. May 2015 provide all the needs for Ryan and your family. God Bless you all. Prayers will continue to surround you, each and every day.
Ken, you have such a way with words. I’ve followed your story for about 2 years now and as I read your posts I feel sadness when your words reflect a hard day; I triumph at your victories. I know what it’s like to live with someone whose condition reflects two different people. Every now and then I still get to see the other side, but it makes interacting with the new person all the more challenging.
I always try to remember a quote from the movie “Elizabethtown” in which a woman says, “We are intrepid. We carry on.” It reminds me when I’m feeling low to keep fighting the fight.
Remember there are people behind you! Merry Christmas!
Sharon Oulundsen Bonanno via Facebook says
* always in my prayers *
You’re unending love, loyalty and beautiful gift of expressing yourself through writing is just awesome ☆♡☆ I hope you and your family have a beautiful Christmas and an even better New Year! I truly believe that great things are in store for Ryan in 2015!
C. O'Connor says
Love your lovely comment, Ken.
Ryan and your family are always in my prayers.
Sue Bennett Markley via Facebook says
I too, choose to believe Ryan is aware of what is going on around him, and all his family does for him. Holidays are melancholy times for many of us , but especially when we have someone in our family with special needs– and especially when those “special needs” were brought on so needlessly. Hard as it is, keep doing what you do and those who you know personally and those that you don’t , will be keeping Ryan and your family in our prayers. Have faith , even when times seem bleak and the forecast is still pretty cloudy, we still have hope !!! Hoping and above all, PRAYING for your son, to beat the odds against him and show you and those close to him— HE’S STILL AWARE and hopefully one day can respond in a way that will knock your socks off !!!!
Ann H Tearle says
Sue Bennett Markley–you said it so well. I would love to see Ken’s socks fly off…….SHSP NGA. Prayers and Love every day to you Ken, Ryan, Sue and Kari. God bless you all. Annie
Your strength and love Ken amaze me everyday. Sending you, Sue, Ryan and Kari much love as always. Merry Christmas to you all. Xoxoxo Sabrina
Carla Liberty says
You’re so right! There is nothing normal about what Ryan (or your family) is experiencing. How can anything be normal? It changes with every minute. Like Gail said, there are no words for what happened, but we continue to lift you and your family up in prayer. We are still here, still praying, and not going anywhere. You can count on that! SHSP NGA
Sending love and light to you –
Carla and family
Sharon Petriello Meier via Facebook says
Gail Doyle says
Hi Ken , Like always ,with some of your posts ,there are no words for what happened to Ryan and your family . I can pray and try to help in whatever way . “new normal”? don’t understand how anyone could think that…I do believe in miracles, and we just never know when they are coming. Stay strong and never give up hope Love to all
Matt Yocom says
This really means a lot to read, and every touch of detail you include makes perfect sense. Ryan is reacting, when visiting in the past, he does do movements that could indicate a reaction to a stimulus. When speaking with him about his Jeep, plus about some sports among many things, there is a lot of understanding. It makes complete sense to doubt it. Just from seeing him, it could be suggested he picks up a lot from us. Our family will be visiting again and have awesome holidays, Divineys!
Pat Dyer via Facebook says
I choose to believe that Ryan is aware of what’s going on around him and will someday be able to communicate. That is my prayer for your family this Christmas.
John D'Amico says
As a father to 2 sons in their early 20’s, i can only imagine the pain that you, Ryan, and the rest of your family must endure.
I know that there isn’t much, if anything, anyone can say to make your lives less painful. I haven’t been a religious person for a good while, but I will pray for you all, as often as I can.
Continue to be strong, Sir, and know that there are people out there thinking of you all, and praying for you, too.
Merry Christmas, Sir, to you and your very special family.
Much love and respect,
Angela Askey Reed via Facebook says
And that IS unconditional love, perfect reminder during the Christmas season. Wishing you all a peaceful holiday.