We would enjoy watching the fourth of July fireworks together as a family down on the Evansville Riverfront. Still in fictitious world we would go shopping for a 9 month suit or tux for Auntie M's wedding on July 24th. We would be introducing new foods and exploring new worlds all while getting therapy from the wonderful Patty Balbach. On July 24th, in my fictitious world, Keegan would be able to attend Auntie M's ginormous wedding and meet family members he has yet to see, he would enjoy the day with dancing with mommy, daddy, and grandma of coarse!
But then REALITY smacks me in the face.
No water parks for us this summer, heck he can't even bathe. Between his central line and its dressing and his G-Tube that goes directly into his gut the poor guy can't even do one of the only things he loves; take a bath and splash around.
Instead of hats to keep the sun off we are putting doo rags and bandannas on his balding little head so stupid people don't ask us a bunch idiotic questions. I do hear we might be able to enjoy some fireworks from the top of the hospital when we are there in a little over a week but its not the same. We will miss our annual cook out with good friends ReXx and Laura, Shannon, Aaron and Silas, Dave, Angela and Baz and the chaotic trip down to the Evansville Riverfront to view the fireworks spectacular over the water to music.
Our therapy regimen is completely different than at home and it seems every day we have a new therapist to get use to and visa versa.
Instead of cute pictures in the sun I have dull pictures from hospital rooms with limited light and dreariness.
I know this all sounds like a pity party, and that was not my intention is writing this blog post. I just feel like so much has been taken away from us already! I see pictures on Facebook of little ones around Keegan's age swimming and playing in the sun and I am jealous. I want that soooo bad its not even funny. I know he is where he needs to be getting the attention he needs to get but how I wish this had all turned out differently. In my fictitious world when we got flown to Riley on Mother's Day we got the bowel obstruction diagnosis that was originally given, we had surgery, and we would be done, PERIOD. Our biggest worry being his developmental delay but in reality that is not how it panned out and here I am with a beautiful almost bald baby boy fighting for his life! Oh how I wish things were soooo different.