anesthesia team. He said they will have an ICU bed standing by if it's needed. He then told us they will go through the belly button with a scope, and then insert the button in the best place they pick on his stomach. He said Jude will stay at least 48 hours in the hospital. The doctor told us that he believes this is a decision that would have to be made in the future with Jude. He then told us the G button is really a decision that is made to better the family's life. So then Mike started worrying about that.
On the way back Mike, and I discussed depression. He said he is just very bitter, and very angry. I explained that it was up to him to work through those issues so he can accept and appreciate Jude for who he is. He said he isn't sure he will ever be over being angry about what happened. He said I (Jenn) am someone that can forgive and let go, but he is a fight or flight, and he gets angry. I explained to him that being able to cope, and move on is the way I learned to deal with life. I started learning this when my mom died at 7. If you cannot learn to cope, then most people end up taking the wrong road in life, and I didn't want that. I explained to Mike that I understand where he is coming from. There are many days I just want to be able to breathe again, and I cannot. I explained that I admired the little two year old today at the doctors office toddling to push the elevator button, so there is always grief. Although, I feel like if I couldn't work through these issues then I never could really appreciate Jude. I couldn't appreciate his sweet smile, how he looks for me when he heard my voice, or the small advancements he makes. It's being able to understand that everything Jude does, and each day he lives is truly a blessing, and believing that.
After the surgery consult, I rushed home to get my car, flew into the house to grab my lunch, and back out to race to work. Once at work I sat down, and at my lunch at my desk while trying to catch up. The working moms life is always full of guilt for not being at home, and guilt for not being at work. The days you do stuff like this you don't get a break until you get home. I am not complaining, just putting things in perspective. Soon after I arrived my boss walked in, and said "So how did it go". I thought about that question.......how did it go........."as well as it could". I knew he needed a surgery date, but I didn't have one yet. Hence the fight Mike, and I got into later that I need the date to give to my work. He feels I am not putting Jude first when I plan to inform my work, but I am. Unfortunately, I just have the world sitting on my shoulders, and I have to work around it. I don't feel like chatting much today, it's been a hard day. I could use a glass of wine, but I am sticking to my diet.
Maui? I know you are out there!
1 comment:
I have to stand on Mike's defense for a minute. Our son had bleeds just shortly after birth and is now almost 5. We go through times when life is JUST peachy and then times when i wonder what the heck we did. Meaning, we love him to pieces but we are SO delayed. He isn't even as severe as jude but we have our own issues. In his defense he has a right to be angry and upset and even depressed. HE will go through those cycles a mILLION times in the next 50 years. Because he is a stay at home dad ( nothing against you going to work) he gets the brunt of the downs. I have worked and i have stayed at home and I Can honestly say taht staying at home has been harder then working and being home. I would have a break, a time to go without constant care etc.
Now that our kiddo is almost 5 we have found that i am his soul entertainment. I am with him and providing him with a play date (me!) for a full day. I don't get adult time and when we do go to the park it is so obvious that there is something wrong that it just leaves me heartbroken.
Because he is home and fighting the food, eating, seizures and the delays he has a lower tolerance for the delays and the depressions comes on fast and hard.
Good luck!
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