I could write a book on little boy #1's life - what it has meant to me and to others, how it has changed my life, etc. But, I am trying to bring awareness to the issue not write a chapter, so this is today's summary of my emotions: "a life-time of letting go." If I ever do write a book, that might just be the title. I will caveat the summary with this: my life constantly teaches me things, so perhaps if you ask me in ten years, I will have an entirely different summation of my emotions. It sounds so sad, and to be honest, it is. I have learned that it is okay to be 100% joyful about my little boy while also being sad about all he has gone through, the pain he endures, and the uncertainty of his future. Every day is a battle between rejoicing that he is still here and relishing every moment while fearing it may be his last. As a mom I perform a daily balancing act of holding on tightly and forcing myself to let go (I could break into the chorus of "Let It Go" right now if this was a video and not a blog!). In all reality, every parent, every person on this Earth, is faced with the same situation because none of us can live forever. My child will die just the same as every one else's child will die; I am just reminded of this more vividly and frequently.
There is also a positive side to this "life-time of letting go". The Bible makes it clear that this present world will pass away, and our actions and motivations should be focused on Heaven. This is hard to do when we are clinging so desperately to things (or people) here on Earth. Life with little boy #1 drives this point home and reminds me that I can't truly be putting God first if I can't let everything else go. More to come on this in a future Fuel for Friday. So with this ting-yang of emotions, what is my "new normal?" It is an alphabet's worth of new...but you probably won't read from A to Z, so I'll stick with just the first few:
Acronym Soup: HLHS, ADHD, CPAP, ABA, OT, PT, EoG, IEP, etc. - I know things I would have otherwise never known!
Bliss: his smile - it's all it takes to turn my frown upside down
Complex: in every way
Docs: if I got paid for every therapy and doctor appt I have scheduled and attended for the last 9 years, my hubby could quit his job.
Eye-opening: The special needs community is an amazing community to be a part of, even if you never really asked to join it.
Flexibility: essential to have with children, sick or not!