I have a fresh recollection of what a CHD diagnosis can do to emotions since we spent 7 hours in the ER with little boy #1 last Friday. Thankfully, it was not as emergent as some of his other ER visits have been. Nonetheless, there is nothing like sitting in a hospital room to bring a wave of raw emotions crashing down on your head. The last few days of the CHD Awareness campaign I mentioned on Monday were aimed at bringing attention to the emotional side of CHDs and one's "new normal."
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!
...
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!
...
 New normal = Playing in the swimming pool at 2:07 in the afternoon. Lying in the ER at 10:49 that night. |  |
This post is meant purely to allow someone who has never experienced the effects of a CHD to gain insight into this world. Awareness is necessary before action will be taken!
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