I complain about my lack of sleep, but in the end it's all worth it. When we conceived Jude we were so excited at the prospect of having a tiny little baby in our arms. We did not ever plan that we would be given a baby with special needs. Not just special needs, but life or death needs. I am not sure why I felt like I could be excluded from this group, but I did. I try not to complain to much, but I know sometimes it sounds like I do...just know it's from lack of sleep. Sweet Jen at my office today said "Girl I sit next to you for forty hours a week and rarely hear you complain" it made my day. I have heard several profound statements this week. Another one I heard was "You have to do what's right for you and your child. The doctors think our children are going to die anyway and that they are just prolonging their life as long as possible, but in the end we are all dying aren't we?" (spoken from another special needs mom). I have learned a lot from these moms in my special group.
I have also learned a lot these past 2 1/2 years directly from Jude. I have learned that proper recognition of your hard work comes from the light in your child's eyes vs strangers eyes. I have learned that doing for others heals your heart when it is hurting, and wanting nothing in return and meaning that is a really good feeling. I have learned to not sweat the small stuff. I try not to judge others because you never know what's going on in their life. I also try not to expect things from people because sometimes it's just to difficult to give, or it's just no available emotionally. I guess when you live a life with someone knowing your time may be shortened you truly learn what is important in life. Friends, family, and loved ones should be your primary focus. Petty bitter arguing should be let go, and nothing should be taken for granted.