Thursday, February 19, 2015

I asked him if I was an awful person and Jude's rough night

Jude had a pretty rough night. I could hear the nurse suctioning him and his oxygen level dipping on a pretty consistent basis. I would get up to check on him but there wasn't much more that could be done. When Charlotte got there she said she worked until about 11am to get him comfortable but he finally quit coughing. She said he is resting in his wheelchair now and seems pretty happy. I asked her how his lungs sound and she said "Like they always do". I replied "so terrible but you have heard them worse" and she agreed. I want to cry at night when I hear Jude's alarms go off and sometimes I do. Sometimes laying in the dark I just let the tears roll because I hate that Jude suffers with his respiratory issues. He coughs, gags, turns red, and almost throws up trying to clear his airways and breathe. Some days are better than others and I like those days! When he is smiling and happy without a lot of coughing. Primarily though it seems Jude just coughs all night long. 

Yesterday we received a copy of Mike's FMLA paperwork that was filled out by Jude's doctor. On the line where it said "expected outcome" it said "terminal" and I just lost it. Right there at work I just bawled my eyes out. So today I had lunch with Mike today and admitted to him I am not in the best of moods. I told him I fluctuate back and forth between wanting to be with people and getting severely annoyed with people. I told him I don't want to hear about people's happy days, happy children, and happy existence right now. I almost want to shout "MY SON IS DYING" when people start telling me about their happy days or their troubles. Then I paused and said "am I terrible? am I awful Mike?? So many people have helped us and I should be kind and loving to them, so am I an awful person". He said "Not at all and it's exactly how I feel too". I almost felt relief because I was feeling so guilty and terrible. 

So I am occupying my time when I am not with Jude on work and focusing on Emily's pageant in April. I am getting everything in order for her and getting everything paid for. It's very important to her and I want to make sure everything is set. I don't anticipate on anything happened regarding Jude getting more sick but in case I cannot be there I want everything to run smoothly so Emily's dad can take her. We have almost everything she needs in order with the exception of a few items we are going to try to tend to this weekend. 

I would like to thank everyone that came forward and provided meals when Jude got out of the hospital. It was so amazing to not have to cook. Work is flowing well and the rest of our lives seem to be rather calm so we are just taking it day by day. 


Vanessa said...

If we can do anything for you or to help Emily get ready for her pageant please let us know I know Camdyn would love to help. And you are not a awful person, you are dealing with something most people can not even imagine. You are always in our prayers.

Christine Darling said...

always thinking of you and your family.

x o x o u i said...

It seems like the past year has been the worst ever, and it looks to me like you are experiencing something similar to PTSD, girl! I don't mean that in a sassy way--and I'm certainly not doling out unwanted advise. :-) Just an observation.

The sleepless nights...ceaseless anxiety...the fear...the feelings of guilt. Not to mention, the input overload from people like me. ♥

I read this article:
"Autism Moms Have Stress Similar To Combat Soldiers"

It was interesting, but one of the comments caught my eye. This woman said:

"This applies to mothers of children with disabilities in general…not just Autism. My child has severe Cerebral Palsy and I feel like I’ve been at war since the day he was born. I’m exhausted, but love my son dearly. I could definitely use a more flexible employer and more sleep though."

Anonymous said...

You are not an awful person. You are a wonderful caring mother. You and your family come first, people understand, and if they don't it's their r problem

Brenda said...

I continue to keep your family in my prayers. You are experiencing what any mother in your situation would feel. You have nothing to be ashamed of. Your baby is sick. Very sick. And it sucks and its hard. Let your drug ds and family help you but not guilt you in to doing anything you don't want to only you know what you need. I'm so very sorry your sweet Jude is suffering so. It's just not fair. Thanks for keeping us updated!

Nisha said...

Oh Jenn you're not awful you are brave, strong and loving I wish I could reach through the screen and hug you right now. I will pray for you and your family every day.

Nisha from South Africa