I've written this post multiple times. Put my thoughts on the page and then just didn't have the desire to hit publish. It wasn't until late last night, when I finally sat down to open our mail that I read a card from someone very close to us that brought everything back in to perspective. Even though the holidays are going to be hard this year it is still okay for us to be thankful and really, we have a lot to be thankful for.
When I sat down to try and come up with my list I realized that some of the things I am thankful for this year are all a direct result of Riley getting sick. And I wonder how crazy that sounds to someone who hasn't walked in our shoes over the last 11 months. I mean I am not thankful for many things as well. Not thankful for what Riley's illness has done to her body, to her mind, to her soul. Not thankful for the way our lives have been turned upside down. But, I am still thankful.....
Riley's illness has shaken every bit of me. Twisted my thinking, realigned my priorities, made me really look deep in to who I am as a wife, mother, sister, aunt, friend and person. And I am finally okay with that. In fact I am thankful.
I've wondered often over the last week what my list would have looked like if Riley hadn't been sick. Where we would be in life. And then the reality that I can't change the past or rewrite
it set in.
I'm trying very hard to stay positive and make it to the end of 2013. Each day I feel like we are holding our breathe waiting for something to go wrong. And, for many reasons I didn't even want to think about Thanksgiving and the actual day because my fear was so high that we wouldn't be together as a family. And that would have devastated me.
As we watched Logan's Thanksgiving program last week "Attitude of Gratitude" I was teary. 50 or so K and 1st graders really got to me and I knew that it would be my attitude that would get me through the next few weeks. Who knew the little people in our lives would be another reminder to me that it's all really going to be okay.
Riley is doing better this week. Last week I was certain we'd be heading back to the ER at any moment. She had a few break through seizures that while short they were concerning. Thankfully, the levels of the medications in her system are where they should be now. While still sleepy Riley is waking up more and more each day. She was even awake for most of PT yesterday morning and participating! I recorded a short video of Riley rolling on a wedge.
Riley Rolling
Yesterday, the GI department called and her endoscopy and biopsies all came back normal. Just hearing someone say normal as it relates to Riley was a huge relief. We're still waiting for the PH Probe results but, we're fairly certain that those will be normal as well. So maybe when we head back to GI doctor in a couple weeks Riley will be able to be weaned off of some of her GI meds???? And most of all we're hoping to hear that we can finally table the fundoplication procedure for good.
Riley also had an ENT appointment yesterday with the new doctor we've decided to go with. Works in the same office as the old doctor if you recall. I had Dave go with Riley because I really wanted him to meet Dr. Ho. And, Dave left feeling nothing but positivity from him. Encouragement about the importance of having the CI surgery done and belief that USC and the doctor doing the surgery were an excellent choice. Quite a bit different from the feelings we got from Riley's old ENT. After the first of the year and after Riley has had some time to heal from the CI surgery she'll have a bronchoscopy and laryngoscopy done.
I am looking forward to the next few days with family and friends. And to celebrating a Trojan win on Saturday:). We sincerely hope you all have a wonderful Thanksgiving with your family and friends. Thank you for sticking by our side and continuing to pray for our family and for sending us all of the good thoughts you can.
I know that right now more then ever I am truly thankful for my family; Dave who "gets" me and is my rock through thick and thin, my 3 kiddos (even in those moments when I want to ship the boys off to Grandma's house), our families (every single one of you), our friends that are more like family, the roof over our head, the food on our table, the nurses that care for Riley in our home day in and day out and the fact that I have another day with my family of 5. And we're thankful for all of you. For all of that we are truly blessed. And thankful. And today and always it's okay to feel this way.
Happy Thanksgiving
and
Fight On!
Love,
Dave, Megan, Logan, Mason and Riley
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