First a quick update on Jude. He is still pale and weak but gives us lots of smiles. He was crying out this morning with Charlotte so she said she held him and then gave him some Motrin which seemed to calm him down. I am also FINALLY getting my dryer situation resolved today so now I have about 15 million loads of laundry to catch up on. Being without a modern day convenience is not fun.
I am sitting here wondering how to write what's on my mind today in a way that isn't accusatory or rude in anyway. However it is something on my mind and applies to more than one instance. Many times as special needs parents we as a group can feel excluded. Jude cannot travel, he cannot go outside on long walks or to restaurants, and our schedules are extremely tight with him. Therefore holidays, vacations, and other times people meet up are generally not something we can participate in unless people come to us. Sometimes we can participate for awhile but we always have to be back home by 5pm. We do not want people to feel they have to adjust their schedule around Jude because everyone needs to live their own life. However over the years many of my friends and family have found ways to make us feel included despite the situation at hand. Although sometimes we still feel left out and it's not really the participating individuals fault but really just a result of the surrounding circumstance.
I also struggle with the fact that I feel that since Jude is not "normal" people may not value his life as much as others. He cannot run, jump, or play with you but given the chance he has so much to offer. This may have been Jude's last holiday but hopefully not. I guess because I am so close to Jude's situation I have a hard time stepping back and realizing it's probably difficult for some people to see Jude in the condition he is in. To me he is just Jude. He is simple, sweet, loving and in my opinion one of the closest representations of Gods blessing. When people are around Jude I always hear "there is just something about him and that smile". It's almost like Jude projects so much happiness and peace that you can physically feel it when your near him.
Despite how I feel I have to realize that everyone is different. Some would have put Jude in a nursing home by now, some would have been a recluse and closed in with him, and others would walk the same path I have. I try not to judge others behavior or project what I would do in the situation upon others but I find that very hard. I am learning to let go and let people be who they are, to forgive what I feel is wrong, and to not be so judgmental. Add that to my resolutions.