Well, here we are again. Not much excitement today. I was able to sneak out for a few hours while Chris napped to do some errands. It felt so odd, mainly because as I looked around, I realized the world does not stop…even if yours is falling apart.
I mostly give you all the G version, out of respect for my guy, plus the details may make you not want to come back. But to share with you where we are in this journey, I will share with you our nighttime reality. It begins about 11:00 pm with getting the furniture moved to scoot Chris’s bed over to my couch bed, nighttime meds given with 10 minutes in between in hopes they stay down and nothing comes up. Some nights a trip to the bathroom where we (I) cheer that he went. Somehow life comes full circle. Last night, Chris was very agitated and rightfully so. Pills would not stay down and about 1:20 AM an emotional scream, “I can’t take this any longer!” After holding and hug, cause what else can you do, true to Chris form he apologized for having a meltdown. Are. You. Kidding. Me? Who wouldn’t?
This brings us to this morning’s nurse visit. Let me tell you, this gal is wise beyond her years. I shared our meltdown and instead of shrugging it off as part of the process she tries to figure out a way to make it better. In the short time she has known Chris, she understands that he is not one to sit still. But because he is too weak to move much or walk, she came up with “Let’s work his mind.”
Perfect! We set a plan with his job to work 1/2 hour to an hour every day with training a person for his position. This person was over the moon to be able to pick Chris’s knowledge and have one on one time. We call that a win win! This will hopefully give him something to look forward to when he wakes in the morning and give him a sense of accomplishment when his day ends. We have no clue how much longer this guy has. He has already blown past what statically his lab results said. But at least for now we have a plan that will help give his racing mind some work and in return hopefully calm it some.
Maybe tomorrow will be another day…
I am so sorry for the physical and emotional pain that you are battling. Thank you for sharing your deep love and your intense reality. You both are in my thoughts and prayers continually.
I am honored to be a witness to your truth. I am so sorry for the emotional and physical pain you all are going through.
I continue to keep all of you in my prayers.
Sending love and hugs. Rene
You are all so amazing.! We are lucky to have your family in our lives.
Kelly my heart is full of awe at how you are handling this nightmare, as you have described.
Great idea from the nurse. Hang in there Kelly. What a blessing to be able to be there with him when he needs you the most. A blessing for Christopher.
The three of you are such amazing people.
I am So Sorry Kellie, for all of you. It’s hard to watch the world continue as if nothing has changed. If feels like the world should stop and recognize that something that was so important in life is fading. It’s even harder to watch life continue as normal for everyone around you, when the world feels so different to you. My heart just aches for all of you. Your Guy is an Awesome guy. We are all fortunate to have him in our lives. He has left a huge impression on everyone he met. Some of the best memories we have at Sandy Pines, has Chris at the Center. From a trip around Oneida Trail on a trailer to the zest of life in his laugh. I’ll never forget him working with Preston to drive the Golf Cart while Chris was blindfolded, preparing for the Golf Cart rodeo. They went down to Oneida Ct. to practice. Preston started to edge out and we screamed. Chris ripped that blindfold off, only to see us up the street giggling. Or course, Chris just started laughing. No doubt recovering from a heart attack. Or the time, he drove up thru the woods and you guys popped out at the back of Tom and Amy’s place. He had a sack of little gifts he handed out. Or his story of your barn being built and the front plate being delivered to another site. Chris can tell the best stories. He definitely has a gift. These are just a fraction of the memories we all have. Please tell Chris that we are thinking of and praying for him, as well as You, Preston and Tyler. If there is anything we can do, please don’t hesitate to ask. Thank You for posting. We check every evening and every morning to hear about Your and Chris’ day, hoping for a miracle.
Kellie,
I wish I was there to give you guys a hug. This is so unfair and incredibly sad.
I love you.
Kellie-
Thank you for posting here every day – my mom sent me this link last week and I check this page every evening. While it’s so sad to read what you are all going through, it’s incredible to see the strength that is in Preston, yourself and Chris. I remember when I first met you, when you and Chris came to Jersey. I must of been 10/11 at the time and I didn’t think I’d like you because you worked at a dentist office and I was (still am) terrified of the dentist haha!! Yet, I fell in love with you immediately! Same with Tyler, we bonded instantly -miss that guy!!
To Chris, while I have not seen you in many years I have so many memories of you when I was young and would visit Michigan during the summer. For whatever reason, I distinctly remember begging mom to let me climb an apple tree (I think it was at grandmas) she told me not to do it but naturally, I did anyways. Then I got STUCK IN THE TREE and you had to climb all the way up to get me down!
There are no words for what you are going through at this time and nothing makes this OK but all I can say is WOW what a woman Kellie is and Preston seems like such an incredible, strong, wise beyond his years young man. Your wife and child are a true testament to the man that you are! Looking forward to hearing about your day tomorrow.