It’s amazing how God answers our questions and prayers when we are quiet and listen with an open heart. I think I so often talk to God about all my wants, needs and complaints without giving him a chance to reply. I close off and wallow in my own thoughts. I’m trying to listen and be at peace with God’s plan right now and it’s something I have to remind myself of and ask for His help every hour or so in this trying time. I’ve had several awesome experiences in my life where I felt God’s profound presence and love, like I was the only one in the world and He gave me all his attention, love and comfort. I can’t say I follow any particular religion. I don’t believe there are rules, rights or wrongs in any person’s faith. I can only follow my heart and understand my own path.
A few nights ago when we moved Ryder into the care of Hospice at the Ryan House, my family was extremely blessed with God’s presence. We all felt it and soaked it in. Ryder was sleeping peacefully. Les was in the family suite with Tyler and Noah and I was just staring at Ryder unable to sleep. It started drizzling. We’ve always loved the rain and often go out to watch it. After about 10 minutes of listening to the rain I decided to go see the boys in the family suite. They were already outside watching as it began to pour. In the spur of the moment I told everyone to put on their bathing suits. Even though Les thought I was crazy, he decided to humor me and we all did just that.
It was so lifting to be able to run, scream and laugh in the pouring down rain with my boys, while knowing Ryder was in a peaceful sleep for the time being. We needed that time together and it was so special.
The next day we had a beautifully perfect Dedication for Ryder, Tyler and Noah. My high school friend Marsha brought us Holy Water from her trip to Lourdes (in France). It was so special that she gave that to us for Ryder! We had a small get together with my family, Mom, sister and Mike. Chaplain Charlie spoke lovely words and a photographer captured some wonderful moments that we will treasure always.
Yesterday was Ryder’s Wish Day!!! What a blast! Our Make-A-Wish team quickly planned a fabulous party in the Diamond Backs pool & stadium :) Originally, we planned to go to Florida, but with Ryder’s rapid regression, he is no longer able to travel. The team planned this party in merely 48 hours! A limo picked us up at The Ryan House and surprised us with AWESOME jerseys with Ryder’s name on the back and #16 (John McDonald- our favorite player who visited Ryder in the hospital). We got to tour the stadium, take family pictures and of course splash around in the pool. Ryder was kicking his legs and opened his eyes many times to see his loving family and friends. We were only able to invite a very few number of people due to pool capacity. We were so thankful our family and friends joined us on short notice to help celebrate with Ryder. Uncle Paul drove down from Flagstaff, Auntie Cass jumped on a plane from Chicago in a days notice ( xoxoxox), Ryder’s Aunts, Uncles, cousins, old babysitter, therapist, neurologist--Dr. N, longtime family friends and a few TREMENDOUS supporters of Ryder (and me!) came to celebrate. We had a small dance party, sang Happy Birthday and Take Me Out to the Ball Game, ate yummy food and cake and took many, many pictures! There was face painting and a man who made awesome balloon creations! We were all drained at the end of the day.
Update on Ryder:
Ry sleeps the majority of the day. The most he seems to be awake is when he is in the water. He will kick his legs and splash some. He opens his eyes a little throughout the day. We have to slowly decrease his feeds since he is vomiting and he isn’t able to absorb much nutrient. His feeds are only at 30mL’s per hour throughout the day, but we stop it many times to give his body a break with hopes to stop the vomiting. All his meds are tricky to give as well do to the volume of them all. He gets hot on certain parts of his body and gets blotchy red. We put cold clothes to help rid the blotchiness, which helps so far. He is often on morphine when he is awake. When he is awake, and sometimes in his sleep, he begins to whimper and breath funny. His heart rate is usually very rapid now. Last night, after his party, he had a seizure lasting about 2 hours. It wasn’t as awful as the ones he’s had before, but my heart still sank and I couldn’t help but wonder if it would be the night. That is such an awful feeling. A sweet little boy passed away hours earlier where we are staying and Cass and I heard the painful mourning of his family. I could only hold Ryder, talk to him and pray it wasn’t his time too. My heart hurts sooooo very much and becomes tremendously heavy just at the thought; I can’t imagine what it will actually feel like. I’m glad the meds helped relax Ryder last night though.
Today was Auntie Cassidy’s last day with us and she fit in all the Ryder time she could get. This morning she played with Ryder while Les and I got some extra shut eye :) When I woke up, I got the best surprise! Ryder was having a WONDERFUL morning full of smiles and even some laughs!!!!!!!!! We haven’t seen that since his first big seizure several weeks ago. Auntie Cass sang Take Me Out to the Ball Game and was being silly. She believes the smiles and laughs were just for her (maybe they were…) but I like to think he was having fun memories from yesterday too! He has continued to give us smiles all day long :) I’m getting off to take him for a swim. Hope we have days...weeks...Maybe months of smiles and fun left?!
The internet connection is terrible at the Ryan House. I will load pictures when I get a chance. xoxoxo