I felt compelled to write this blog after communication I received regarding my post about going to New York. I think the best comment I received was from Charlie's mom who understood what it's like to struggle with a situation very different from other families you know. Charlie's family struggles with the same situation we do. Do we take Jude with us.......knowing he will be miserable, stay home and not get away, or leave him behind and feel guilty. Sometimes it's a no win situation, but getting away and recharging your battery can sometimes be a great thing.
I also felt compelled to write based on my own hold ups. I am a busy person. I work full time, I run my daughter's charity, and I run a natural pageant system. The pageant system is my pride and I work very hard at it because someday I believe it will be a great success. To accomplish this success I feel the need to travel a few times a year with Emily. This normally requires two days on the weekend. I sat down and started to think about our time away from Jude or home. 3*2 = 6. Mike and I went to Hawaii for 5 days and if we travel to New York it will be 3 days. That's a total of 14 days. Let's add four days to that just to add in time away for parties, airport delay's, etc.
That's 18 days. After listening to my fellow need special needs moms respond privately to my blog I wanted to voice something. Bash me if you want. 18 days.........put that in perspective. God knows I love my children with ALL my heart. Every night for 365 days (well minus the 18) a year we draw Jude's medications, we change his diapers, we accept he won't be potty trained, we hook up his IV feed, we sedate him, we give breathing treatments, and we wake up...........no less than 4-5 times a night. I see people complain about less on facebook. We get up at a MINIMUM 4-5 times a night. We love our son more than life itself so we leap out of bed to reposition him.
The point is that if a special needs mom bestows the blessing on you to ask you to watch her child while she sleeps at night or recharges her batteries than please be like my family. Offer to sit the child without resistance and never wonder who will be there with you. Never wonder if a nurse will be beside you...simply learn how to take care of the child. You offering the help is the best gift anyone could ever give. A recharged battery always supplies a better flow of energy to the receiving party. We all understand that we accepted this life and our little ones have blessed us so much, but having someone to help is priceless.
We are lucky to have amazing people in our lives to step forward and help us with our jobs, my children, and our lives in general. We are also blessed to have two amazing kids. Thanks to those who help us out without question or judgement. A prayer to those that do not have the help I do because I am blessed.