It is very sad the things that we as humans let slide. We humans are just incapable of keeping all things up and running. We have to focus on a very narrow view at times. I don't know what makes us unable to keep a broad view of the world, but we don't and that is why we miss things and have scramble to fix what we screwed up. I have been guilty of this a lot lately. I wish it wasn't true, but it is.
I should concentrate on being a greater emotional support for my wife.
I should be more patient with the boys.
I should be able to move past my grief and pain over Grey's death.
One of the unfortunate side effects from Grey's illness was that I took my eye off the ball with Seth and his PKU diet. Seth has done a masterful job as a 9 year-old of stepping up and keeping to his diet. But we all slipped up. He started having trouble before Greyson was born with his Medical Food. It was upsetting his stomach and causing him to vomit uncontrollably. I was in the process of getting him into a new clinic and getting a second opinion on what was causing this when Nicole was put onto bed rest for premature labor symptoms. With is added stress, Seth's new clinic appointment got postponed. Then Grey was born and we were consumed with taking care of a newborn, then Grey was sick and we were scrambling to get him diagnosed. Then Grey died.
Through all of this, Seth was a CHAMP! He continued to stick to his diet and not succumb to the temptations of forbidden foods. When we started refocusing on Seth's need for new Medical Food. Despite the challenges, Seth's Phe level was only 3 mg above the acceptable range!! Hoorah Seth!!
Today we started a new chapter. We have new samples of Medical Food to try and the possibility of a new Enzyme in capsule form to help.
I am striving to start a Clean Slate.
I will strive to become the supportive husband that Nicole needs.
Grey Grey,
I Love You my sweet boy. Help me to be strong for your Mommy. Help me to stop being sad and in pain all the time. Remind me of the joy and happiness that you brought to our lives. Help me to stop being so selfish and to see beyond myself. I am ashamed to admit that I am letting everyone down.
Help me to be strong Little Man. I feel so weak.
I Love You!
Ah! Da!
SHOULDITIS
ReplyDeletehttp://www.scramblejam.com/blog/
LIFE CHANGING EVENT SCALE
http://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale
LIFE STRESS TEST
http://www.cliving.org/lifestresstestscore.htm
"Shoulditis"--I think you might have it. Do not be so hard on yourself. You and your family are doing the best that you can and have had alot to deal with. On the stress range, the events score WAY up there! Look at all you have accomplished in such a short time despite the pain you have been living with. Give yourself some forgiveness and some patience. Be kind to yourself. Talk to yourself the way you would care for your best friend, with compassion for what all you and your family have been though. :)