A Beautiful Day

Thank you for another day with Jayson. He was able to sleep more last night with the help of some medication, but according to my husband, he did wake up every few hours and was trying to get out bed. Henry had watched Jayson overnight along with his mom and sister, Carole. This allowed me to sleep earlier than usual and for the first time in almost a month, I slept for more than 6 hours. Thank you to our family and friends for helping take shifts in watching Jayson.  There's no way we could have done all of this on our own.

Ms. Lauren's special service.

We have received support and prayers from not just our family and friends, but from the hospital staff as well. Yesterday evening as I was trimming Jayson’s fingernails and toenails, his nurse, Lauren said she had a filer I could borrow.  She mentioned that sometimes she would file the nails of her male adult patients while they were sleeping.  So, I said she could do the honor of filing Jayson’s nails and she did so happily.  During this time, Lauren also talked to me about Jayson and what was happening to his body and what to expect.  I appreciated her sharing her honest yet compassionate professional opinion with me.  It was good to hear things from her perspective.  It helped eased some of the tension I was feeling at the time.  Lauren is just one example of the wonderful staff they have here at the NMCSD Pediatric ICU.  This experience has been a very positive one despite the reason that we're here. We know that they are all doing their best to help Jayson and our family.

  

We have seen how Jayson's positive attitude, internal strength, caring nature and simplicity make him so unique...so loved. He has received many cards, gifts and well-wishes from family, friends and classmates. We posted most of them on the wall in his hospital room.  Jayson hasn’t been able to read them yet, but we have. We are so touched by all the support that Jayson and our family has received.  Thank you for making this difficult time easier to handle.

Jayson's Biology Class last semester

Mrs. Draper's message..."You are loved"

Yesterday, Jayson was visited by many family members and a teacher from Westview. Mrs. Draper was Jayson's biology teacher last semester. She came by to visit him around noon time yesterday bringing snacks for our family, gifts for Jayson, well-wishes from the Westview and encouragement.  This was the first time we met Mrs. Draper in person and we are so touched by her compassion and caring heart. It was obvious that Jayson was not just another student to her. She shared some memories with us and gave us some insight on how he has touched her life. Hearing her kind words and seeing my son through someone else's eyes gives me an overwhelming sense of pride and joy. Mrs. Draper had sent me a picture of Jayson's biology class with a big sign they made. We have that poster and it's now hanging in Jayson's hospital room.

Banner from his Biology Class says it all...We Love Jayson!

Yesterday was another tough day for us, especially after the family meeting.  It was difficult trying to keep the tears away when we told other family members about what was discussed in the meeting. There was sadness in their eyes and the only thing we could do was just give each other hugs for comfort. Thank God we are able to draw from each other for strength and comfort.

Jayson's gift to his dad.

Henry & I each talked to Jayson after the family meeting. We don't know how much he heard or understood from the meeting, but we went ahead and explained what was discussed. Through the tears, Henry & I both told him how much we loved him and that we would be here for him. We were trying to comfort him, but it was Jayson who was doing the comforting. He gave each of us a hug and patted our back. I think it was his way of telling us it'll be okay, that he'll be okay. This simple hug is one gift that we will always remember and treasure. Thank you for giving us that gift Jayson.

As I finish this post, Jayson is lying in a recliner facing the window.  He's had some carrot juice, a teaspoon of macaroni and cheese and smoothie. He was able to take about an hour nap and now he's just resting with his bacon pillow.

He's lying with a view of the outside world. He can see the top of the NMCSD Chapel along with a tall tree on the side.  The sky is blue, the sun is out and there's a slight breeze. It’s a beautiful day. Any additional day we have with Jayson IS a beautiful day.