Wednesday, November 12, 2014
CHASA posted this article today and I think it's very well written. They deal with children that have partial paralysis. Since I deal with a child that has complete paralysis I thought I would add to this a bit. http://www.chasa.org/support-community/coping-with-holidays/
The holidays were difficult at first. Like the article states there are different levels of grieving for the child you thought you were going to have. In Jude's case we feel a responsibility to include him as much as possible in holiday traditions but there is now a realization that he isn't able to really participate. Transporting him for short periods of time on Thanksgiving became so overwhelming that we now just stay home. We have opted to follow Emily in her quest to become miss Teen during the Thanksgiving holiday. So we have a quiet dinner at home with just our family on Thursday. Then the next day we load our van to the brim and take a long trip to Houston. Jude must travel with all his medication, suction, supplies, oxygen and rescue aids. So to take him to someones house for a meal is draining and sucks the very fun out of the holiday. So we enjoy him at home while we eat our meal then head out the next day. The trip is worth it because we can position him in our hotel room with all his equipment for several days before heading home.
On Christmas my family normally comes to us which makes things so much easier. Over the years I decided to no longer stress about a perfectly clean house. My living room is laced with therapy equipment and therefore seating is limited but I don't stress about that either. I no longer worry about asking people to bring food with them because it helps with my time allotment. A plethora of food that everyone pitches in to bring provides lots of choices and makes everyone happy. I have learned to tell people ahead of time what Jude needs because they worry about his gifts and there are only certain things he uses. This year we are looking to obtain a positioning pillow for Jude and pajama's. So everyone normally pitches in and it's a wonderful system. I have worked to make Christmas Eve special and to include Jude in it. I will generally buy him Christmas pajamas and I put his little stocking out. My family comes over and we all watch "Elf" while Jude cuddles in my lap. They endure the suction machine, the vomit, and the other situations that are apart of Jude's lifestyle. No one really looks away or looks down anymore wondering what they should do. Some even get their hands dirty and help position, turn, and suction.
On Christmas morning Jude tends to have the least gifts under our tree. His stocking is more bare and sometimes it's hard to take. However I remind myself that the items Jude needs are more expensive and require more. He cannot play with the little slinky, the coloring book, or the other little items Santa places in some stockings. So we have adjusted, but it's still hard. He doesn't bound down the stairs like Emily still does to see what Santa left him. However he is here. Jude is content with being warm, being pain free, and being loved on. I guess it's an acceptance of non material possessions and endless love that we should all learn.
To touch on some other subjects the article listed. It's impossible to get the right amount of sleep when your child is up and down all night. So I have learned to freely admit "I am tired" so please accept me a little stressed out. It's a phrase my family and friends here on a consistent basis and therefore they understand my situation. Exercise is pretty non existent when you work all day and are up all night. So I embrace my fluffiness!! As for watching the food and alcohol consumption......that's probably true. However a few glasses of wine with dear friends and family makes life a little more grand in my eyes. A wonderful meal that others help cook is also pretty amazing.
Jude cannot help color pages or paint pictures but I have treasured possessions his therapists and teachers have helped create over the years. Little Christmas trees that include his fingerprints a teacher positioned on the paper accompanied by cute little poems and more. Each holiday with him is a blessing and I am grateful our family understands our situation.