Fiction vs Reality

I have had so many ideas for the past 9 months of how our summer this year would be spent. Of coarse in my fictitious world I would be working and Keegan would be in daycare. He would spend his days with our sitter Amanda and on Thursdays with my sister Abby. He would spend lots of time outside where he would play in kiddie pools or cruise through 4 foot pools in the cutest of floats. We would spend many afternoons and weekends at our local zoo and splash park. A trip to Holiday World & Splashin Safari would be a definite must where my sisters, mom, Laura and I would hang out with Keegan in the Kiddie area all day while the BIG boys rode roller coasters and did the slides. He would be slathered in Aveeno Baby sunscreen and wear really cute hats to keep the sun off of his face. We would take evening walks with Daddy, Duncan and Lexus around the neighborhood and into the park. He would swing in his Little Tykes swing and play in the Little Tykes turtle sandbox momma got him really cheap at a yard sale. 

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. None of this will happen this summer  Okay so some of this could happen this summer but in a very different fashion than I ever dreamed. Instead of lazy afternoons and weekends being spent at the local zoo friends and family we will be on the fifth floor of Riley Children's Hospital in the Children's Oncology wing. I will be able to take him to the zoo but not without masks, supplies in case his G-Tube was to get pulled out, and more meds than you can ever dream. Instead of applying sunscreen to my little guy I am rubbing oil on his balding head because its so dry and watching to make sure he doesn't cut himself and cause an infection his little body wont be able to fight.

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.