Sunday, February 17, 2013

I want today to give a big shout out to the awesome men and women that help our heroes fight the fight. For the past five days I have been with Ryan at Primary Children's Medical Center in Salt Lake City, Utah.

Children's hospitals have to be some of the saddest places on the face of this earth. It is heart wrenching to be walking down the hall and hear the hurt, frightful cries of an infant. It is so painful to see the little children being pulled in wagons throughout the hospital, IV bags in tow. I do not know what each little person's story is, but I do know that the story is horrendous. I see the fatigue and fear on the faces of the parents, I witness the tearful hugs in the hallway between people that love and are so worried about the patient in the room nearby. I meet the caregivers that have stumbled down the hall to find the restroom in the middle of the night, sleep in their eyes and worry lines on their foreheads. These hospitals are full of exhausted people, both physically and mentally exhausted.

I will mention the doctors first. These men and women have so much compassion for these children. They are very professional and yet very caring. Always they let the children know they are the most important thing. Ryan has a whole team of doctors, and we are never sure which one he will see when he is admitted. That does not matter at all, every doctor on his team works as a team to make decisions, to read scans, to decide on the best course of treatment for him. Every one of them always has a kind word of encouragement for me, and for Ryan, as well. Ryan's favorite is Dr Luke. He always has a smile on his face, he always has time to tease a little with Ryan. He always has a joke to share.

Then I see the nurses. The angels on earth that have to see these children suffer day in and day out. They have to administer the drugs that make them so sick. They have to clean the vomit the drugs induce. And they do this with smiles on their faces, laughter in their voices and joy in their eyes. They have to do things that they know hurt, that they know will be uncomfortable, yet they do them with precision and compassion. They make it as easy on the children as is humanly possible. They quickly and professionally go about the job of nursing and always have a word of encouragement for the kids and parents. They always have a laugh and a joke ready to make a child smile and giggle. They never let the sadness and despair overcome them. Ryan's nurses come in his room... always with a smile, always with a "How's it going, buddy?" They take the time to talk to him and ask him about the game he is playing, the story he is reading, just about him in general.  They take the time to explain to him what it is they have to do... they take the time to distract him if it is going to be uncomfortable. For this I am so grateful! It makes my role as caregiver so much easier and more pleasant. The nurses and aides never leave the room without asking me if there is anything they can do to make me more comfortable.  They are AMAZING!

Next are the Child Life Volunteers. They are there at a moments notice to do anything the child feels like doing. They come in and play xbox, they bring craft projects, they bring monopoly and sit with the child and play for hours. They are there to stay with the children and give the caregivers a much needed break, to eat, to just take a walk. Always they are fun! A special volunteer that has helped Ryan is Meagan... she brings in an Ipod when he has his port accessed and holds it up so he can play Angry Birds. She holds his hand and he plays with the other hand, and is distracted enough that the nurse can get the port accessed with a minimum of trouble. The volunteers brought in Valentines for Ryan.... LOTS of Valentines! They made what would have been a hard day to be in the hospital one that he loved. He asked me if we can be here next Valentine's Day, too!

The social workers are wonderful. They are here to offer any type of support that may be  needed. They answer financial questions, and help find financial aide. They offer emotional support and therapy. They just show every visit that they are truly concerned and on our side. It is really nice to know that their support is here for us. Often we are so overwhelmed with it all that it is just  nice to have a friendly person to talk with.

I can not leave out the Animal Volunteers and their handlers that come and visit the kids. The smiles you see on the children's faces when that dog or cat walks in the room is priceless. Ryan just lights up when the puppies come in to visit. Anything that can distract, even for a few minutes, the crap the kids have to face is wonderful. You can not put a value on that. The animals are awesome.

As I walk out to go to the restroom or to the elevators to go to the cafeteria, there is a gathering space that has a piano and comfortable chairs for visitors to take a break and relax. There are volunteers that play the piano, or sing, or play a violin. The music is beautiful and it is so nice to take a minute and just listen and relax. It gives me a moment to unwind and to know that God is with me and Ryan. No matter how stressed we get, God gives us something beautiful, like music, to reflect on. These volunteers give selflessly of their time to make this beautiful music, and I wonder if they know what a blessing they are.

There are people that donate blankets, stuffed animals, and pillowcases for the patients. We never know where these little things have come from, but they make a world of difference in the children's lives. It is so nice to have a soft, warm blanket to snuggle in... instead of the more utilitarian blankets the hospital uses. It is fun to have a bright, cheerful pillowcase to lay your head on. The kids get to keep the blankets and pillowcases and it is just a reminder to them that someone loves them.

I have to mention the kitchen staff.... the ones that prepare and deliver the room service food for the kids. They answer the phone very cheerfully, asking "What can we make Ryan today?" They take the time to do little details that make the food more enjoyable. Every morning there is a joke on the tray, and Ryan looks forward every day to see what the joke today will be. It is the little things like a joke that make this bearable for the kids.

So, no matter how rigorous and exhausting a five day chemo therapy stay is, it is always made much more pleasant by the heroes around us that care. When you say your prayers for Ryan, please Thank God for these special men and women that are in our lives. I will forever be grateful for the service they have given us.

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