So for anyone that has spent even a small amount of time with my wife and I am sure that my next sentence won't come as any big shock, but for some reason it does to me.
I can not believe how different my wonderful wife and I are. With Riley going in to surgery tomorrow I am absolutely 100% confident that this is going to work and we are in the best of care and that this particular issue will be fixed - I am by no means saying I am happy about it, but completely confident due to lots of questions and research. Michele is heartbroken about the surgery and that our little one has to go through it at all. On the other hand I broke down today in the hospital due to Riley's future. We were eating in the cafeteria around a number of families and some of them had children who had disabilities - both mental and physical. I barely made it through lunch without bawling my eyes out due to the fact that all I could think about was the difficult life that my little one could have ahead of her if she has mental issues or physical malformations. My wife consoled me as I wept and assured me that we were both strong enough to get her thru and to that future.
See I am a die hard belief in science person. I am a scientist at heart and when there is lots of medical evidence, it's something I can learn and touch and almost feel. Therefore that knowledge consoles me and makes me feel almost good that there is something to fix through surgery (I know that sounds awful, but please focus on the word fix and know that I would never want my daughter to have to go through something unnecessary). My wife isn't necessarily scared of that, but she can't feel the scientific reasoning behind like I do. On the other hand - when it comes to mental handicaps and learning disabilities, those are phenomenally 'squishy' things that science barely understands and no amount of surgery or learning can fix. These unknowns and 'squishy' things bring out my fears in my ability to be anyone's father - let alone a little flower like Riley that may have multiples of these issues. I wouldn't say that Michele is comfortable there, but she is confident in that future if it presents itself. She feels that these can be overcome with work.
This is why we are perfect for each other always, but especially now. I am confident when Riley is in the today of science and doctor's; Michele is confident in our abilities to get our daughter through the possible haze of tomorrow. Between the two of us we will hopefully be able to hold up to anything that this awful syndrome can throw at us.
I promise that I won't get to preachy on this thing in the coming years, but I thought the following might be interesting to some. Ryan Dempster, a major league pitcher for the Chicago Cubs had a daughter about a year and a half ago named Riley and she has 22q as well. He and his wife have started a foundation: http://www.dempsterfamilyfoundation.org/
It is a great website with lots of information and stories from a number of families that has brought Michele and I hope and ideas. Anyway, they will be having an event here in Georgia next month - which is wow, next Friday: http://new.evite.com/?utm_source=other_email&utm_medium=email&utm_content=text&utm_campaign=invite#view_invite:eid=016FAAQZXGK5ZYRWMEO7ZMQMD2Z56Q&gid=016FAAQZXGL24EX3GEO7ZMQMM6EM4Q
Michele and I may be going to this, just to meet some other families who have fought against this syndrome and hopefully gain some perspective and courage. Hopefully in the future we may be able to do something like this for the center in Riley Rose's name.
Thank you again for all the notes of encouragement and offers of help - I can't really explain how much the notes help Michele and I. Your love and support has been and will continue to be invaluable to our little flower and us.
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