When you are used to being active and involved in everything, being sidelined is almost a fate worse than death. So you can imagine my anticipation and eagerness after a corrective surgery to get back on my feet and get back in the game. Oops, a little too soon and a little too fast.
The good news is that the evil adhesion mass has been removed and once I fully recover from the surgery, look out world here I come! I’ve longed to do so much that my hunger and thirst for it drove me harder, faster, more – and just a little bit of overdoing it.
There are things I’ve promised myself – no more sitting around and doing nothing! Getting out and doing things again and saying yes to more invitations. But I’ve come to realize that being sidelined has an impact on more than your physical ability. It creates new habits, new routines, new ways of doing things. I’ve already faced a couple of situations where activity was available, but the habit of staying home and drawing into myself reared its ugly head and sometimes won out.
The biggest battle I face now may no longer be physical pain, but the kind of life I accepted while I was in so much pain and whether or not to continue coasting along. God give me strength to no longer find coasting along as acceptable!
One of the hardest hurdles to cross on our journey through Greta’s ADEM experience is acceptance. I’ve learned how to say and spell Acute Disseminated Encephalomyelits, but learning to accept all it has done to our sweet girl is another matter.
Standardized test scores this year show an average of a 20 point drop from her scores the year before. I thought the doctors were originally a bit crazy or paranoid for wanting to monitor Greta for 5 years after the initial diagnosis. Now I understand why. The brain lesions are shrinking, each MRI is confirming that. No more are forming, for which we are ever grateful! But the fact of the matter is that damage was done.
So now we find ourselves moving past the urgent of getting back Greta’s eyesight in her left eye, to helping her cope with new realities. It isn’t easy. She is fairly resilient. I’m afraid it is her parents that are struggling with how to accept that things will never be exactly as they were before. It is going to require dedication and purpose on our parts to go through this with her, keep track of crazy things and report them to the doctors and keep up on forums with other parents and see how we can encourage each other.
Denying that there hasn’t been any change in Greta’s academics would be wrong. But giving up on her and not pushing her to make an effort would be equally wrong. Acceptance doesn’t mean settling for mediocre. Acceptance means finding the outstanding and excellence where you are!
What were you thinking? To any physicians and surgeons out there, I’m sorry, but please don’t take this personal. If I could go back 25+ years I would yell, scream, throw things around or do anything else I could to get the attention of those people, grab them by the ear if I had to. “What were you thinking?” What kind of a doctor takes 18 inches of colon out of a 14 year old girl then just leaves her to fend for herself? Did you not even think to check for Crohn’s Disease, Colitis or anything? Is it just a favorite past time of yours to yank out parts of a person’s body, leaving a lovely exploratory scar as a parting gift?
I’m working through the grief. After living with gastro issues for more than 25 years, I’m dealing with learning it was Crohn’s Disease all along and I’m grieving what could have been. If the doctors and surgeons had followed through, my life would be completely different. Then again, maybe they did me a favor. What did I accomplish (college degree, three kids, Who’s Who award, program director for a television network, published poet) that I might not have – had I seen myself with limitations? I had my whole life in front of me. You took out 18 inches of my colon and left me with no diagnosis, just to figure it out on my own. Was I better off that way?
Even if I could find those doctors and surgeons and was able to give them a piece of my mind, it wouldn’t give me peace of mind. In reality, there is nothing that can be done now to change anything. “I’m sorry, we didn’t know that much about bowel diseases at the time,” doesn’t work for me. They diagnosed my sister. Was I a bad girl that I didn’t deserve a fair shot at knowing what I would be struggling against the rest of my life?
I’m coming up on one year of getting my diagnosis of Crohn’s Disease. I’ve had to learn a lot the past year. I’ve been through a lot with medications, lab tests (some cost $400 a shot), weekly blood draws to ensure proper medication dosage and learning about things to do and not do for Crohn’s Disease (sure would have been helpful 25 years ago). I’m grieving a part of my life that could have been lived differently, had I known. This week, I’m working on accepting what has happened, because obviously there is nothing that can change it, forgiving the people who failed me all of those years ago and moving on from where I am at now.
This is a journey of acceptance, forgiveness and release. God give me strength and thank You for walking with me.