Small Gestures = Spirits Lifted!

It is almost the end of Day +15. Ryleigh’s counts have not gone up. I eagerly await the 7AM nurse change so that I can get her blood counts for the day. At 4:00 each morning she has her blood drawn so the results can come in early. But, no changes for over 15 days….such a stress to wonder when it will start. We are all eager to get the recovery process going. Ryleigh is managing well. She is resting when she needs to, starting to do some physiotherapy to help get her body moving as she is very, very deconditioned, working on eating healthy, and trying to spend some time with her sister. Ryleigh’s fun way of seeing the world is coming back as her Crohn’s has settled down thanks to no immune system. The big question will be to see if the Crohn’s will stay away when her body starts to generate those white blood cells and neutrophils. But for now I am grateful for her sense of humour, witty comebacks, and her making sure we are technically correct on various facts during our discussions.

The last few days have had a few moments that have lifted all our spirits and helped us take some time to enjoy and laugh.

Moment 1: Games and Laughter
I find that Ryleigh is quick to say no and refuse to do things. It is going to take time for her to believe that her body can handle activities and take risks to do a variety of different activities. Chloe comes to visit Ryleigh and works hard to not get upset if Ryleigh does not want to do anything. However, Chloe knows her sister well and brings out crafts to do or games to play and Ryleigh will then be interested. Hanging out together and laughing with each other is truly a great way to lift all of our spirits.

Moment 2: Snow
Yes, Vancouver got snow! It was really beautiful. Especially after the dark quiet of Ryleigh’s room the past couple of weeks. But a couple of nurses decided to add something else to the view:

Karen, a positively wonderful nurse who looks cares for Ryleigh as a whole child - not just a sick child.
Karen, a positively wonderful nurse who looks cares for Ryleigh as a whole child – not just a sick child.
Karen and Kari - busily building a snowman for Ryleigh and for every other child on 3B who had an outside window.
Karen and Kari – busily building a snowman for Ryleigh and for every other child on 3B who had an outside window.
The finished snowman that melted today but allowed us a couple days of joy and laughter.
The finished snowman that melted today but allowed us a couple days of joy and laughter.

Moment 3: Visitors
We had some visitors come to the hospital. Apparently with the break for the Olympics they decided to use their time off to make some youngsters (and their parents) forget some of the challenges they are facing.

Laughing with Ryan Stanton, Mike Santorelli, and Alex Burrows
Laughing with Ryan Stanton, Mike Santorelli, and Alex Burrows

The visit was surprisingly uplifting for us – Ryleigh is not a hockey fan at all. She does not understand why grown men get paid lots and lots and lots of money to chase a puck on ice, with a stick, and on skates. “Mom if we took all the money spent on professional sports there could be enough money to stop hunger or to save a continent like Africa.” Hmmm she has a point. She did not want to meet them. She was tired and really had no connection with them. Now, me not so much…I am a hockey fan – Oiler Fan mostly- but I was not going to go without a picture. They came by…we raised the blind and they called to Ryleigh, knocked on her window, and said Hello. Ryleigh was slightly embarrassed but she definitely was giggly and it made her chuckle just because they were being silly. She was not very happy with me as I opened the blind but I told her Karen (her nurse) made me do it. We all had a good chuckle and she enjoyed it. She also got some autographed cards from the them. I think I will keep them in a safe place – I know of some Canuck fans in my family!

I have been very exhausted and my body is starting to show it. Cold sores, pulled leg muscle and/or tendonitis, headaches, and difficulty sleeping. These moments over the past few days have given me energy to keep going. I made sure that I found opportunities to reset and gather up some energy to get through each day. I cross my fingers that tomorrows blood counts are better…thanks everyone for your positive comments and thoughts. They lift my spirits too!

9 responses to “Small Gestures = Spirits Lifted!”

  1. It is so hard to live, eat and breathe pain levels, blood counts and immersion into the lexicon of sick. People try to understand and there are so many supporters, but the truth is the journey is lonely even with all that because we each have to walk it in a way that let’s us cope and that walk is solo because the path through is different for everyone. Your chosen process is a gift to others (which should not surprise anyone since you have always been a giver) because you are sharing it and thereby helping others see that the process is complicated and mixed with tragedy and triumphs, moments that suck and moments so sweet. This title is truly apt and your blog with help others to see they can be strong in their own journey, but have times when they are not coping perfectly and it is all ok. We hope today is the day of the count increase and we are cheering for you all!

    1. Thanks Shelley…what an inspiring comment, I appreciate all the positive energy, understanding, and thoughts that come our way.

  2. Hi Jo, Ryleigh and Chloe! We’ve been in a big cold snap up here, so no snowman snow lately. Seems like it is either plus 2 or minus 25. Love the photo, Jo! Great that you could have a little break and those guys (no idea who they are). Did you admit you were an Oilers fan? You probably saw we made Greek Dinner for 100. Except only about 40 showed up. I have a lot of food to deal with today. I am hoping we can sell some in the concession! Anyway, take care, as you always do, of each other. XOX from FSJames.

    1. Hey, I didn’t know who they were either! Nurses told me not to say I was an Oiler fan…lol! I am so sorry about all the hard work and only 40 people…I was drooling over your menu and thought what a great idea. Greek is my favourite! I know if you could courier it down here a whole nursing staff, doctors, and parents would happily buy it from you…try teleporting it in! good luck

  3. Hi Jo, loved hearing from you this morning. We missed you yesterday during our pink shirt/ anti bullying assembly… was good but the kids were wired for the rest of the day.
    Give your girls big hugs from me, all three of you are often in my thoughts….much love and prayers. Mary

    1. Thanks Mary…I missed being at the school too…second year in a row. Hard to see all the pink shirts around here and not feel pangs of sadness that I could not be part of the flash mob.

  4. Jo, you and your girls inspire me so much! I have a really challenging class, but when I read your experiences, I realize it’s nothing. All my thoughts and prayers are with you! Stay strong!

    1. Thanks Nancy…I appreciate your thoughts and prayers….challenges are relative to each of us. Being in the midst of all these brave but very sick kids focuses me on the joys of those kids who are well enough to test boundaries, misbehave, and struggle with everyday things. Embrace their challenges…after June you will not have them and will miss it. I know it sounds corny but it truly helps me cope.

  5. Makenna Sarah and linden say hi! The joy of seeing a snow “person” is so raw. So simple. At least Ry can make her own choices about liking or disliking g hockey. Unlike her mom who was brainwashed into liking the Oilers! Keep strong. Hugs from the Madden-johns clan!

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