Wednesday, June 23, 2010

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.


  1. I could have written this post word. for. word. I'm so sorry you're going through this. Praying.

  2. I'm so sorry Beth. This just breaks my heart! He is such a sweet sweet boy. While you may not be out there this summer doing those things, please hold faith that he will be out there doing those things next summer! I think of you all daily and continue to keep Keegan in my prayers.

  3. Beth, keep the faith that next year you will do these things. When you get through this, it will make every moment so much sweeter. So sorry Keegan and your family are going through this, praying for you all.

  4. Beth, I wouldn't wish this on my worst enemy. I am so sorry that you guys have to go through this. We all wish things would have turned out differently. Keegan will be in my heart every minute of my wedding day. Next summer will be so much better!! I love you guys so much,stay strong Beth!
    Love, Mary Ellen

  5. I wish things were different for your family too. I believe that they will be next summer. I wish I could give you warm words of wisdom, but you hear great advice every day through all of the people in your huge network of love. Just know that we all love you so much and can't wait until all of this is past you. Keegan is a fighter and you and Ryan are the best parents he could have ever asked for. We love you! Shannon

  6. Beth,
    I think and pray for Keegan, you, and your whole family everyday. I know sometimes we just want to ask "why," but in the end I truly belive that God has a plan for everything. Please keep your faith. You are such a strong person, and I am sure Keegan has your determination as well. Keegan really is a special guy and blessed to have you as a mom.
    Love ya,
    Julie (Ransom) Dunn

  7. it's okay to have a 'pity party' as you say once in a awhile - it just helps to get those thoughts out sometimes. please hang in there - you and your family are in my prayers everyday!

  8. Oh Beth my heart breaks for you! Im so sorry you have to endure this as a mother. You are, however, doing it with grace, faith and so much love and Keegan feels that. You are all in our prayers.

  9. I would feel the same way! Looks like it's time to head to the dollar store and buy some tropical decorations so his room feels a little more like summer. Make yourself a virgin pina colada, put some Hawaiian Tropic stuff on so it smells like coconuts, and turn on some Jack Johnson or Bob Marley. Bring the summer to him! Fake your own pics! ;) Hang in there.... pity parties are totally ok!

  10. Don't ever feel bad about writing what you feel. It helps to get it out and we know how to pray for yall. My heart crys for you and your family. We don't always understand Gods will but we have to know his will is the best. God is right there with you every step of the way. You are never alone. You faith will hold you up during this trial. Someone told me to do this when my husband was fighting brain cancer. Close your eyes and think about all the prayers going up. It gave me peace during times when my life felt out of control. God wants you to lean on him so do that. Jessica Cox sent out a prayer request and I have been praying everyday for you.

  11. i found your blog through kelly's korner. just wanted to tell you i'll be praying for your sweet baby boy! (we only live about 45 min. north of evansville).

  12. Hi Beth. My name is Brooke Rogers. I was blessed to meet your sister last Saturday. I can absolutley sympathize with your situation and all of your feelings! I know that 5th floor very well and those dreary rooms too! I don't have any great words of wisdom to make your pain less. I wish that I did! However, I can tell you that you are in a great place with the best doctors and nurses anywhere! As a matter of fact, if you have Sally up on that 5th floor, you've got the best!

    Just keep your faith! Though it may not seem like it now, God is carying you through. It is ok to ask why and to even be angry. Just always know that God has a plan for us. Though we cannot always see it and we cannot always understand it!

    It sounds like you have great friends and family and that is wonderful! As I told Abby, if there is anything that I can do to help, please feel free to let me know!

    My family and friends are praying for your family! Keegan is absolutley beautiful! Take care!

    With Love and Prayer,


We love feedback; however, if you have nothing nice, encouraging, uplifting or insightful to say don't say anything at all. Thank You!