Fear- I remembered that there was another medical issue that we'd need to deal with once the pneumonia got in check. Looks like Miles has some late appearing Epstein pearls on the roof of his mouth. Very late arriving. They should have been here 9 months ago and gone 8 months ago. If they are normal Epstein pearls, then no medical treatment will be needed. But since these spots do not correlate to traditional medical time lines, I am freaking out a bit. Does Miles have oral cysts that will need surgery? I don't know. His pediatrician wants to wait. I want her to check with a pediatric orthodontist. She agreed to my request today and will follow up with a colleague. She's a great doctor who is willing to help Miles with anything.
Depression: I am still sorting out the emotional trauma of Miles' heart surgery. Will I ever come to terms with that fear? Anger at myself for not having resolved my guilt over Miles having Down Syndrome. Disappointment in myself because I am not more optimistic. Very ironic, I know. Depressed that I am depressed. Ugh!
Back to the fear: Are we going to live from one medical emergency to the next? What good news will I ever get to share about Miles' health? What does the future hold for my family? Will I be strong enough to support Miles and Jesse?
A classic Anna tailspin. When something scary happens, like Miles' hospitalization, I bottle everything up until the end. I pretend to be stronger than I really am. Coping strategy, for sure, but I need to devise a healthier method. Especially since we are starting down a long road of many ups and downs. I need to remember that being courageous does not mean acting courageous.
I started reading my first parent account DS book today. I have been hesitant to read most personal stories because I don't want to compare our situation to theirs. I started shortly after Miles' diagnosis, and I wasn't ready. However, after coming to terms with my feelings from yesterday and realizing I have a whole host of other issues to sort out, I decided to see how someone else did it. I am reading Life as We Know It by Michael Berube. A friend lent me her copy months ago. Today, by page 70, I understand why she wanted me to read this book. When I am done, I will post my thoughts.
On a positive note: Miles' follow-up appointment went well. He is to continue the antibiotics for 6 more days. His energy and spirit has returned full force. In spite of my struggles, I know a miracle when I see one- and I just kissed one good night.
1 comment:
What we all need to remember is that the future is out of our control -- whatever circumstances we are dealing with. Life right now is all we really ever have. Maybe focusing on that, even as you make appointments with new specialists, will help you avoid the fear pit. The true courage for dealing with whatever comes is in staying present. And you can do that, Anna; you are doing that in the middle of crises. Just keep doing that after the crisis passes and life will be easier.
Here's a bunch of electronic hugs and kisses for you, Jesse and Miles.
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