Before I write this I want everyone to know I am not being negative, I am grateful for my life, grateful for Jude's life, and I know it could be worse. With that being said I am once again being honest and forthcoming on my blog.
It's been an extremely busy week at my work. I am working as hard as I can up until the very last minute. Yesterday after an exhausting day I returned home to Mike extremely frustrated that Jude was having another attack. Jude was very toned out, red faced, sweating, and very uncomfortable. When Jude gets like that you can barely hold him, he is stiff as a board, his heart rate sky rockets, and you are desperate to help him. Mike was at his wits end and I completely got it. He said that the doctors just have to do something. This was caused and started when they put the Baclofen pump in. Since we turned the Baclofen off we are down to 1-2 attacks a day, but it's still not the same. Jude is not the same. Mike said "I cannot even enjoy the good parts of Jude anymore I feel like they robbed me of that". I 100% understood. However Mike was so agitated that we eventually got into a full blown screaming argument. It's what happens people. When you are stressed to the max you turn on the people you trust the most. You say hateful things you don't mean and you start the cycle over again. So Mike walked away and I steamed for a few minutes. Then I realized...........this isn't his fault, this isn't Jude's fault, and this isn't my fault. This is just our life and there is no reason any of us should be angry with each other. Mike said "I am tired of working all day to never sleep at night and to struggle in the evening with Jude's attacks". I get it! I totally get it.
We are exhausted. Mike and I haven't had time away alone for longer than a night (which I think have been 2 and we are grateful for those) since 2010. It takes a toll. We were looking at getting Jude a sitter while we went to Emily's competition over Thanksgiving weekend so we can recharge and restore but that in itself is stressful. Jude's apnea is terrible at night, his attacks are bad in the evening, and if it's stressful for us it would be really hard for someone who is not his parent. We would probably spend the entire time worried about Jude and worried about the person caring for him.
So let's go back to Jude's attack. I drew up 5 ml's of Valium and administered it to him. I then moved Jude to his wheelchair to help break his tone. This gave me enough time to fix dinner and then I had to get Jude out and hold him. He smiled as I kissed his Elvis hair that needs to be cut very badly. I had to reposition him several times in my lap but I was able to control him for the most part. Jude's cough is also back. I am not sure if it's weather, allergies, a new illness, or just the new norm?
So we will get through he workday, go home to his attack, and laugh in bed with the dogs. You have to find time to laugh.