Jude is doing as well as can be expected. The weather has wreaked havoc on his system which means we are dealing with tight muscles, pain, and crying. We have continuous oxygen issues with him in the evening but I can normally get that under control before the nurse gets there. Last night he was crying again when I got home so I gave him some morphine and he was finally very happy. I hated watching him just lay in his bed so I sat him up to hug on him and that set off a chain of events. He began vomiting, then choking, and then vomiting more. Once I got him cleaned up and settled I turned around and said, "No one touch the baby!". Yes, he is still my baby.
Mike and I had finally starting looking at planning our mini vacation at the end of this month. We started researching places we would like to go and found some hotels that looked inviting. We had set forth a plan and secured help with my friend and Emily covering Jude until the nurse got there each night. Then the nursing agency called and said the normal weekend nurse had requested off 4/1. Then Emily came to me and said her play had been scheduled for 3/30-4/1. Then just more shit kept piling up and I realized it's just not going to happen and I am okay with that. The reality is that Jude's care is extremely complicated and it's very difficult to leave him with anyone other than his regular nurse. We also rely on individuals that are coming to a job each day and sometimes things happen to prevent them from making it to work. I don't want to be hours away and have Emily stuck without a nurse to help her with Jude. That would be horrific. So I realized that while Jude is with us he needs our care and that's just the way it's going to be. So I am planning a grand staycation! We will visit places around our area. If we are able to secure nursing for on one particular day than maybe we will stay at a hotel close by overnight. At least Mike and I will have time away from work to reset and relax while spending time with each other. I don't need to go away anywhere because the problems we face won't be resolved in one simple vacation.
I have read a few articles recently about special needs parents and what they face each day. As the years pass I sometimes read these articles sighing to myself thinking everyone has their own issues might aren't any harder than what others face. However I do nod my head and agree with certain parts of the articles though. This morning as I read one I really started laughing to myself because I can see how far I have come throughout the duration of my blog. So I thought I would touch on my personal thoughts regarding some items that have been mentioned on various articles.
Special needs parents are:
Boring: I will agree with this. My daughter constantly tells me I am old. During the week we work, come home, walk the dog, drink wine, and go to bed. We do little else. Between 5-10 we don't have a nurse and getting out of the house really isn't an option. It's perfectly fine with me now. I love watching my shows and I have gotten very friendly with Pay Per View.
Lonely: I will admit this is true at times. Relating to other parents that attend school functions, participate in holiday activities, and don't fight with insurance companies on a regular basis is difficult. Even in a room surrounded by people you can feel very lonely at times.
Don't accept invitations: Oh this is me! I have actually lost friends over this one. You're right I don't. First off I know something will probably happen to prevent me from attending. Then there is a timing issue because most parties and other functions will run past the time Jude's nurse leaves. Either that or some functions are so far from my house that by the time I get there I have to turn around to go back and relieve the nurse. I am also extremely selfish with my time now and I readily admit that. To top it off I am even more selfish because I want people to come see me and attend functions with me but I am not reciprocal. I am afraid it's just the way I am now and that may be a flaw on my part. The weekend day time is the only time I have free to be with my husband outside of the house. I don't like driving freeways and I would rather not stress out trying to make an event. Yes Mike and I can switch off caring for Jude alone but it's so much easier if we work as a team.
Hate the R word: This is not me. I am not one of the special needs moms that readily advocates getting rid of the word retarded. I get why people do it and I fully respect your view point. I am just one of those people that is not easily offended and I just brush it off to their ill education mixed with bad manners and keep walking.
You compare your parenting skills: I used to do this but I don't so much anymore. In fact I have even unfriended a few moms of children with special needs or stopped following their blogs. It wasn't anything personal I just couldn't relate to their lives anymore. I admired how their children were making progress but the sharp reality is Jude isn't. It was coming to the realization through diagnosis and more that Jude's body doesn't have the capability to improve. His lungs are full of scar tissue and fluid, his upper torso has no control, and his immune system is very weak. Some moms would see this as a sign of weakness or giving up when I see it as a step forward in a direction of understanding and improvement. By grasping the fact that Jude cannot participate in therapy, schooling, and other advancements I acknowledge that he is still pretty damn amazing. It frees up my time to appreciate Jude for just who he is and love every single part of his frail body. When I finally stopped and finally listened to the doctors I felt so free and I noticed a huge change in Jude too. I also feel I have grown so much as a person since I started this journey. I used to be so immature and now I feel like I have matured so much that I don't need to compare anymore.
Are fearful: Maybe. I think the only true fear I have left out of this situation is being concerned about Jude outliving me. Isn't that an odd thing to fear? I fear losing my child and I fear dying before him. I worry that if something happens to me he may not get the type of care he needs and deserves. If something happens to Mike and I both that puts the responsibility into Emily's hands. We have a will and estate plan in force but Emily has already protested that she would want Jude. This worries me because as much as she loves Jude that would be a lot for someone so young to take on. My other fear is losing Emily, I just couldn't handle it. I have told God that many times.
Have a hard time when people ask about my child: Not really. The hardest question I get and I get it daily is, "How is Jude?". I really don't know how to respond. Mike always says "On hospice". I don't want to tear anyone's emotions down so I generally response "sick but smiley" because it's true.
That's all for today.