I apologize in advance for the quality of this post! We sought out to find treatment for our beautiful brain-injured child and surprisingly returned with a brain-injury of our very own!
I have done so many things today that prove I am at or above maximum capacity. Here are just a few:
* I ran the bath water for Aviana and completely forgot about it (thank goodness for the overflow drain)
* I washed Aviana with shampoo/conditioner rather than body wash.
* I had noticed that Kama gained a few pounds at her Uncle Jeff's and figured she looked extra hungry for that reason. I realized at noon that I never fed her *or* let her out to the bathroom.
* I cleaned the kitchen this morning and later found the cordless phone in the fridge. WTH??
Just think, the above person is administering medication three times daily to a certain someone. That's comforting. Anyway...... We arrived home yesterday from the most intense, overwhelming, exhausting, exciting, hopeful, encouraging, worthwhile 11 day journey of our lives. I have never experienced anything as important.
Imagine for one moment that your child was involved in a terrible accident and after an almost three month stay, she returns home. All you want to do is help her in every single way possible. You're chomping at the bit for any and all information or help.
You are more ready than you have ever been to get going and this is what you are told, "Your daughter will have therapy ONE to TWO times a week for 30-45 minutes." This single sentence stopped us in our tracks. I questioned this fact over and over with the same discouraging result. Dave and I would do two more sessions of therapy everyday in order to pick up the pace. Honestly though, everything we did just didn't seem like it was enough.
I would sometimes look at Aviana and not know what to do with her. Sure, I certainly know how to love her all day long, hold her, kiss her, hug her, take her on walks, etc. But what I didn't not know was how to make her better. To make her crawl, walk, talk, eat, etc. It is the most frustrating feeling I have ever experienced. I felt we were not being efficient enough. Effective enough. Nothing felt like enough.
As of today, I am armed with more tools than I could ever have dreamed of. I am now ready to fight the brain injury battle on every level. We have a strategy. We have a plan. We have help. I could not be happier. I have so much to say about the past 11 days and think it's best to break it up into different posts.
The Institutes have continuously struggled with how to relay 50 years of information into 5 days of their most important findings. While I am not up against that daunting of a task, I do question how I am going to break down 7 intensely long days into a few paragraphs here and there.
My brain is so fried today that this is all I can handle for now :o) I also can't wait to tell you about what we did in our free time!! There wasn't much of it, so there won't be too much to tell, but we definitely had a great time.
Talk about not running on all cylinders.... We left Lamby at the hotel in Philadelphia :o( Luckily they found him and are sending him back. Poor Lamby, he has really been through it! For Mother's Day this year, Dave bought me a brand new beautiful digital SLR camera. Can you believe it, we left it on the shuttle in San Francisco.
Are you ready for this....they FOUND it and have it THERE for us!! There are so many wonderful, honest people in this world. While this has (by far) been the most trying year of our lives, we have seen some of the most beautiful random acts of kindness ever.
That is with the exception of the most hideous, mean spirited man on the face of the earth. We had the great pleasure of sitting next to him on the plane all the way back to California.
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So wonderful to hear it sounds like you got some great information and help.
ReplyDeletePrayers that all continues well. Looking forward to the information and pictures.
I am so glad that you had a successful visit, and can't wait to hear about the new progress Aviana will make!
ReplyDeleteI can't wait to hear more about your trip to the Institutes! Isn't it pretty there? I loved all the trees. I used to love walking around the grounds there. How about those bells? are they still ringing inbetween sessions? Is it still FREEZING inside the lecture room? Brrrr.
ReplyDeleteI remember feeling exactly how you are feeling right now -- exhausted, yet so eager to start the program. My head was just FULL of information. I just wanted to share what I learned with everyone.
I can't wait to hear more and I KNEW this is how you would feel. The people at the Institutes are some of the most amazing people in the world I feel :)! I'm so happy you went there!!!
ReplyDeleteHi Jen,
ReplyDeleteWhat a great surprise to have logged on to my computer last night at 9 PST (while in, ironically, SFO airport (quick business trip) awaiting the 10:10 PM redeye back to Phila) and find your upbeat post. Given that even without training you and Dave appeared to be powerhouse parents with intuitive skill when it came to helping your daughter heal, with this new knowledge you'll be unstoppable.
Sincerely,
Ellen S (now back in Phila)
I'm SOOOO happy that you guys are back and had such a positive experience in Philly!
ReplyDeleteBut....How could you leave Lamby?? OMG!!! :-O
Do you want me to get your camera for you? Sue is here this weekend...I could get it to her to bring back to Rsvl! I'll call you!!
Missed you! Glad you're back! Can't wait to hear the rest of it!
Oh...and as long as you don't put the phone in the oven, you're probably still ok! =)
Janet