ChRiStMaS tRaDiTiOnS...

It's hard being so far from family, especially during the holidays, I can not tell you how much I hate missing out on what is going on back at home! I know that there are many days that too easily forget but today I was reminded how blessed we are to be able to spend Christmas together and how even more blessed we are to have a Florida "family" to spend the next two days with!

I guess you should expect to start new traditions when you get married but even after our first year of being married in 2007 Aaron and I had family traditions that we held near and dear, including Christmas Eve with our grandma's. We somehow managed to be with both grandma's even thought they were 300 miles apart that year but it was well worth it!

Our first Christmas 2007, playing around at Grandma Royer's!

After Aaron had his accident in 2008, I knew I couldn't leave him alone in Florida while I went home to celebrate Christmas with family. I really struggled to make this decision knowing my grandmother's health was declining and it could be my last Christmas with her. Aaron was also not able to travel at this time so it meant our Christmas would be spent IN the rehab facility. I remember being pretty miserable, Aaron doesn't remember it at all. It had to be the worst Christmas I can remember...ever! This was the first year I went shopping on Christmas Eve! In between visits both Christmas Eve and Christmas day I joined friends for dinner.

Christmas 2008, looking on the bright side, we were wearing flip flops and shorts on Christmas day!

Things were looking up in 2009...Aaron got to come home OVERNIGHT for the very first time! I was nervous but excited at the same time! We had to have therapy do a home visit and needed some minor things done around the house before he could officially come home for the night. Christmas was kinda quiet and we were just getting used to the idea of being home together overnight! This year we decided to go to a movie, adding another tradition to our Florida Christmas! 

2009 at home for Christmas! Our nephew visited Santa's Secret Workshop and had sent us these aunt and uncle pens!

By 2010, Aaron was coming home for the night on a regular basis. I continued my Christmas Eve morning shopping tradition and we went to a movie Christmas day again. This was the first year Aaron could eat some soft foods, even though it consisted of oatmeal, scrambled eggs, and some pie filling...it was improvement! We spent time with friends for dinner both Christmas Eve and Christmas Day. Our good friends even blended up ravioli so that Aaron could enjoy it with us! 

2010 Christmas at home for the 2nd year!

2011 kept improving...we were home again of course! Our shopping and movie traditions continued, however, we went to the movie just a bit too early and missed out on dinner (everything was closed by the time we finished) so we had an oven pizza for Christmas Eve dinner! Of course we also spent more time with some Florida "family"!

2010 Christmas at home again!

This year we continue our Florida traditions...I have already shopped on Christmas Eve (I may or may not have filled my own stocking), we have already been to friends for dinner, and now we plan to hang out at home. Our night wouldn't be complete without at least one Christmas movie, Home Alone (my favorite)! Tomorrow we are off to more friends for dinner and most likely we will go to a movie! 

Even thought these aren't the traditions we grew up with and they don't include our family in Michigan and Ohio, I am thankful for all of the new traditions we have started and the "family" that we get to spend the holidays with! If you are reading this then there is a pretty good chance that that in some way, big or small,  you are a part of our old or new traditions and we are thankful to have you sharing not only the holidays but your lives with us! 

sHoP uNtIL wE dRoP

     Until the accident, we have always done everything together, even shop.  Anyone who knows me, even my first graders, know that I love to shop even if it's just looking. It is nice to drag Aaron along again, even though he has almost always gone willingly! 

    I am glad to be rid of the wheelchair (we do still use it for BIG trips), that proved to be a challenge in itself. His extra big wheelchair could usually fit through the main isle but between the clothing racks were a bit of a challenge. The crowds can be tricky, Aaron refuses to let me run into or over anyone! And the displays in the middle of the aisles, we still run into those no matter how we travel around the store. We trade the walker for a shopping cart at some stores unless I know we will be there for a long period of time where Aaron will need to sit and rest. We also test out Aaron's driving skills from time to time using the battery powered carts...remember those displays, we get one every time or at least a corner of a shelf!

Aaron "driving" for the first time 8/09!

    The dressing room always proves to be interesting and/or entertaining since I can't leave Aaron unsupervised (for his safety). I can either take him in with me or find a seat right outside the dressing room where I can talk through the door so that I can hear him the entire time! The picture below was taken in a dressing room where there was not seat for him to sit outside and wait, needless to say he had to go in the dressing room with me. I told him to close his eyes and this is what I turned around to...need I say more?!

Peek a boo!

   Now that I know the specifics about all of the public restrooms at most of my favorite stores that part is not so bad. In the beginning I used to only take Aaron to places where I knew there was either a single restroom or a special "family" restroom because the thought that Aaron might need to use the bathroom just stressed me out. I am not ashamed to take him in the women's but we do try to respect that other women may want their privacy so we do avoid that if at all possible! We did the men's once, that was enough. Oh yeah and I forgot to add that if I have to go, he has to go with me...now if that is not "for better or worse" then I don't know what is!

   

    

gOoD gRiEf

     There are seven stages of grief: shock, denial, bargaining, guilt, anger, depression, and hope. I didn't even think of myself as grieving until about eight months after Aaron's accident when I was talking to an old friend and he connected my feelings and thoughts due to our unique circumstances to these stages. 

    I have had a tendency to make what Aaron and I have gone through look easy, or I try to fool everyone anyways. It's always been easy for me to share the exciting steps, the happy moments, and the good pictures. Until recently, I have only shared bits and pieces with different people. I have strategically tried to spread those pieces out just enough so that no one has enough information to truly judge my feelings or choices. I haven't completely been able to admit how hard this journey has been for me personally and that's just part of the reason I decided to write about it through this blog. 

    I lived through the first four stages while Aaron was in the ICU after his accident had just happened. I remember thinking this isn't happening to us. Aaron will be ok by the end of the summer. Please just let him be ok. Why did I let him get that stupid motorcycle in the first place? Looking back, those were probably the easiest stages to go through, everything happened so fast that there wasn't time to think...I was just doing whatever it was that needed to be done. 

   The first feeling of "normal" came when I started back to work at the end of the summer of '08. I had the opportunity to change grade levels to make it easier on myself but I knew I needed something to be the same, even if it was just going back to the same grade level as the year before. As much as I looked forward to being at work and going back to my old routine, I hadn't thought about how it would be different without Aaron not being there. I wasn't prepared for the next stages of grief that were to come and are still coming after all Aaron didn't die, he lived through the worse scenario imaginable. I guess I fooled myself into thinking that this grieving thing would just magically disappear once he started getting better. 

   The stages of anger, depression, and hope have definitely continued to come and go and come back again when I least expect them. Every once in awhile the bargaining and guilt stages get thrown in for a short time along the way. 

    Another friend told me that she read that grief lasts for seven years, which would mean that I have three more to go. In all honesty, I think grieving is different for everyone, I don't think there is a defined time line. I also think we all grieve in our own ways, some of which I am not too proud to admit yet and that would have to be a whole other blog post! I used to struggle with the feelings I was having that went with each stage of grieving but as time goes on it the feelings are getting better, the stages are getting easier. I am feeling more and more like my old self and grieving has actually turned into a good healthy thing. 

    At the end of (almost) everyday, I can look back and know what I feel is normal. There is nothing that says it better than Jeremiah 29:11 "For I know the plans I have for you, declares the Lord...plans to give you a HOPE and a future." 

Our most recent picture...Saturday night date at Red Lobster!

    

pErSoNaLiTy

    It's probably no surprise that those who knew Aaron before his accident, one of the things I fell in love with when I met Aaron was his sweet personality! He was so easy going, helpful, and caring...he did whatever it took to make everyone else around him happy (including ME)!

   I remember the first week in the ICU when I started learning about what a traumatic brain injury was. The unit manager did a good job explaining everything to me. I can remember to exact moment when she started telling about how a person with a TBI's personality can be changed significantly. She went on to tell me that especially in young men that you could see a lot of aggression, among other horrible things.  She said that often people were very different from the person they were before the accident. My heart was crushed and whatever she continued to say I didn't hear. It was an awful feeling to know that I could have him but not have him if that makes sense. I stood there thinking about how much I loved Aaron's personality the most and how it would be sad to never have that part of him again in my life. 

    Fortunately for Aaron this was not the case at all, another one of our many blessings. Slowly but surely, to this day, his brain continues to heal. As each month, week, day, and minute passes I see more and more of that sweet personality that I love so much! 

    I'll be honest, things are not exactly the same. There are what I often refer to as "short circuits" from time to time. Most often it's just me who notices or people who really knew him well before the accident. Aaron sometime says something random or does something completely off. He sometimes doesn't have as good of a "filter" as he used to and will say those things you think but aren't supposed to say out loud! He also tends to have a little bit of a potty mouth now and then, especially when he is frustrated! And there are the times he wants to be heard (literally) and it comes out as yelling....I have had to really work on not worrying about these things, especially the part about what other people think. We get most of the old him, that is enough and I am learning to thankful for that! 

    He was also said to have short term memory loss. I don't have an recent evaluation that tells me how his short term memory is but from my own unofficial observations, it seems to keep getting better and better. People used to always ask me if his memory was like the movie character that Drew Barrymore played in 50 First Dates. I can't hold it against them, they don't know but I can tell you that I will NEVER watch that movie again and for the record Aaron's memory is not even close to the character in the movie :) 

    His long term memory has been evident since early on. Little things gave me hope that he was him the first few months...like him giving thumbs up, the ways we told each other we loved each other, and a favorite nickname Aaron had for me! He has recognized family member and friends the entire time. He also was able to start recalling personal information early on. 

    He completely surprised me recently, we were in the grocery store and ran into someone we used to go to church with (I am talking back in 2006). Aaron was polite, said hello and as we chatted for a minute. As we walked away and I asked if he knew who that was he instantly told me the man's name. When I proceeded to ask how we knew him, Aaron not only replied from church but was more specific and reminded me that we had been in a small group with him. 

mY hErO!

    I have a lot of favorite memories from the past four + years! Here's the latest to add to our story...

   We went to Legoland (right by our house) for the second time this summer. Aaron is pretty new to the theme park scene. Even though is he walking with his walker most of the time, we stick with the wheelchair for these things! We are also careful about what things we do while we are there because he can't do everything...yet! 

   Even though both trips I have had a little bit of help, I have chosen to do a lot of the pushing! If you have been to Legoland you already know how far the water park is from the parking lot and you also know about a few of the "hills" and obstacles. It's not the worse place I have ever pushed but it's also not up there on my favorites!

   I need to remind you that Florida is a hot place, especially in mid July. That just adds to the wheelchair pushing fun! We don't look especially pretty in the pictures after eight hours at a hot theme park, walking for miles, and spending over half that time getting drenched in the water park but you get the idea! 

   Toward the end of the day my one pusher had to leave, no biggie. I didn't realize how tired I was and how much harder that it was making it to push. It started with the 4D theater, the staff watched me park the wheelchair and transfer Aaron out and put the gait belt on. They yelled down to me that there was a wheelchair entrance. At this point, the last thing I wanted to do was to push him up and down that ramp again...wheelchairs need brakes by the way ;) 

    Next we went on "The Eye in the Sky". The entrance was down hill...I made a sarcastic comment to Aaron about how much fun it was gonna be to go back up and he replied with "Have fun!". As we exited the ride I got this great idea, that little light bulb inside my head went on! See below...

Aaron pushing his own wheelchair up the hill! 

    So we continued on, Aaron was actually enjoying walking for a bit rather than riding. He and I were talking and he told me to sit down. I thought he was joking at first but soon realized he was serious, the gigantic chair is actually pretty light and he said he thought it would make it easier to push with some weight in it (pretty smart might I add). 

Now I could get used to this...best idea ever! 

My self portrait of my new ride!

      Last but not least...I am very cautious about rides but I had been on this particular one with my first graders during a field trip this spring and felt is was pretty safe for Aaron! As we approached the entrance, I had to giggle as I saw this sign below. How cute is that?!

My HERO for sure! 

    I just realized his shirt also has "heroes" on it lol! I couldn't get a good picture on the ride, cell phones need to be put away but I grabbed it out quicky as we were getting ready to unload and this is what I got. 

Fun times! 

     So there you have it, another day in our life and more fun memories made! 

    P.S. I do have to add that even though Legoland's terrain does not feel very handicapped friendly as you trek across it all day long...the staff was super friendly to Aaron and very helpful everywhere we went!
   

tWo WeEkS...

    A lot of you knew that we did a three day trial allowing Aaron to be at home in the evenings and at a local adult day care while I was at work this spring verse being at a rehab facility full time.

   I know it probably sounds silly but the strangest thing was getting ready to leave the house together in the morning, something that we hadn't done in almost four years! My biggest fear was managing my time...dropping Aaron off at the daycare being to work on time! I also lost some of my freedom to come and go as I have chosen the past few years, something I am willing to give up (at least most of it) to have Aaron home more!

    Other than that trial, the longest stretch I had Aaron to myself was over a long weekend in September for his big 30th birthday trip to Ohio! (Which also went very well!)

    During some ongoing discussions for Aaron's continued care, we had talked about three days really not being a fair trial to see how the reality with Aaron home would really be like. That short of time was a piece of cake but the question was could I handle him longer on my own? 

    So here it is, July 8th and we start a two week trial. I will publish this after two weeks have past but I am going to try to write as we go so I can remember it all!

Day 1:
     I took Aaron to bootcamp with me at 6:30am, he smiled at us the entire time. I can only imagine what he was thinking watching these crazy women work out!
     I dropped him off at the day program and went to Legoland water park with a friend and her sweet girls. I got at least 14 calls that day...before I picked him up!

Day 2: 
    We slept in some, I woke up to him totally on my side of the bed telling me that he was glad I put up with his crap figuratively and literally (Yes folks, these are HIS words!). I couldn't help but laugh :)  
    Back to the daycare he went, I got a lot less phone calls but he had a little attitude when I dropped him off because he thought the staff was laughing at him, this was the first time I have noticed him being really sensitive. 
   My favorite part of the day was when we had dinner with some neighbors down the street! I had been looking forward to it for awhile and we finally made plans. I always get nervous taking Aaron to meet new people and actually having to socialize, I just stress over if we will "fit in" or will they even like Aaron. I was excited when Aaron said he had a good time and he really liked them! 

Days 3-5: After I picked up Aaron from daycare at 3, we headed south to Sannibel Island to meet his parents and the kids at their condo. 
   I had to laugh because his step mom asked what I was finding the most challenging and all I could think of was THE BEACH!!!! (Of course it was not an everyday obstacle, just a problem for the weekend thank goodness because it was hard work!) 
   It was a great mini vacation full of family, food, beach/pool, no-see-them bugs, and even a boat excursion to Picnic Island!

Aaron enjoying the sunset.

Boat ride!

Oops...

Taking a break at the condo!

Beach time!

Another sunset...

Day 6: We headed home, ate at Woodys (again), and spent time hanging out at the pool hotel with parents and kids. We ended the night by snuggling into bed to watch ET and eat homemade peanut butter pie. 

Day 7: Dad, Stepmom, and kids leave...mom comes lol! We spent most of the day being lazy and catching up from the few days at the beach!

Day 8-13: Daycare during the day, hanging out with his mom at night...normal stuff! 
    We have cooked out on the grill, went to Olive Garden soup and salad, and even met up with some friends one night. We've done some shopping and watched a lot of movies. He even convinced his mom to pick up an entire Dairy Queen ice cream cake!

     I can't believe two weeks is almost over and Aaron officially goes back to his other home tomorrow. In all honestly, I am kinda sad to send him back. I enjoyed being home with him and feel we did really well on our own. I am exited about all of the future possibilities and am so blessed to have had this chance to have him home with me. I have already started praying about the next step...whatever that ends up being! 


   

fOoTpRiNtS...

     "Some people come into our lives and quickly go. Some stay for awhile and leave footprints on our hearts. And we are never, ever the same. "

    I want to spend this entry bragging about some (it would be impossible to list ALL) of the people/things that left "footprints on our hearts"!

    There is no way I could ever begin to thank everyone for the big and small things they did the summer of the accident and over the past four years. I am very appreciative of all the love, support, and prayers that have been sent our way!

    I will be honest, during our ICU days, I started to keep track of the gift cards, treats, and nice things (including mowing our lawn) that people were doing for us but that became impossible as this journey turned into years. 

   

pRaYiNg FoR aArOn

Recently I was talking about Aaron, I know big surprise there, and I got on the subject of the ICU. Let me start this story by saying that I am fortunate to work for a small charter school in a small community. When Aaron's accident happened, news spread fast. I started getting many e-mails with prayers from complete strangers that only knew we worked with them. One particular email that I remember was from another elementary teacher at a nearby school that I had never met. She began by reassuring me that the hospital we were at was the best. She went onto share that her dad had been in the same ICU after his motorcycle accident just a few years earlier. She raved about how wonderful the staff were to her family and her dad. She continued to keep in touch, responding with more prayers and praise after each and every update while sharing their experiences in a positive way. Each email ended with "praying for Aaron" which I soon added to my emails because I loved it so much. Right before school starts each year, we have this breakfast and the whole charter staff comes. We were looking forward to finally meeting in person! We found each other, hugged and it dawned on me that throughout all of our emails I had never asked how her dad was doing now so I decided that is was finally time to ask. It wasn't until then that she shared that her dad had not made it. It touched me that knowing what she knew and experiencing what she had that she was such a blessing to us (complete strangers)...there are no words for how much I appreciated her positive attitude, support, and how she helped me to stay strong that summer. 

24/7

    I had a particular friend who wouldn't let me out of her sight at the beginning of all this mess. When she couldn't be there, she put another close friend of ours on "Renee duty"! There are times I found this rather annoying, I mean, I was perfectly capable of walking down the hall to the bathroom by myself but when given the chance she would not leave me to go home and sleep in her own bed...even if that meant another cold, long night on the small couches in the waiting rooms. Throughout that summer she missed her boyfriends birthday dinner, she babysat my in laws kids, took Aaron's family out to a Tiger's game for the 4th of July and helped plan a surprise visit from my childhood best friend. As we transitioned from the ICU to rehab, her boyfriend and her made special trips to see Aaron and then would take me to dinner afterwards. Then came my favorite...diner and drinks and drinks and drinks! Even to this day, I can depend on her for pretty much anything. I haven't known her forever but she has definitely earned a special place in our lives and I will be forever grateful that she stuck by me that summer and is still there for me now! 

tHe LiTtLe ThInGs

    From pens, notepads, and gum tucked inside my purse...tea from Panera....trips to Target...dinner at Olive Garden...pizza parties and picnics in the lobby...gas gift cards-when gas was more than $4...emails...co-workers...bible verses...random gift cards to restaurants...quote books...voicemail messages...sweet nurses...cards...random visits...flowers...strangers.... desserts stuck in my fridge when I got home...mowing my lawn...pedicures...family...good cafeteria...late night phone calls...food...sleepover friends...this list can go on and on and on!

    I am going to stop here...I know there is much more I can add to this particular blog so I will update it as more people and things come to mind because I haven't even touched on how truly blessed we are by everyones kindness!

fIrSts

    Aaron has gone through a lot of "firsts" and here is his timeline that I have kept. In the beginning, it was the simple things like moving his legs and walking but now it's the exciting things like going to baseball games and water parks. I went through the ICU events in the last blog about so these events start in September 2008, after he moved on to the rehab facility.

2008

September 1: First pushed call light on his own to get his nurses.

September 6: First mouthed anything...."Hi mom"!

September 12: First time continuous tube feed was turned off.

September 19: First (high back) wheelchair came in!

October 9: First time I squeezed into bed with him!

October 21: First time left fingers FINALLY started moving!

October 27: First time really bending right and left legs on his own. 

November 12: First time standing up!

November 19: First initiated steps!

December 9: First time whispering..."hi"!

December 13: First typing... "i love you beautiful" after I asked how he was feeling,  then typed "I am okay, I love holding you".

December 20: First time rolling over in bed and got the side rail down without help.

December 30: First time writing me a letter in speech therapy with help!

2009

January 19: First started using rolling walker in therapy!

February 16: First time riding in the car for the, first time speech therapist confirmed he was whispering!

March 24: First time "minimal voicing" was heard in therapy. 

March 30: First (of many) swallow studies.

March 31: First introduced to apple sauce and honey thick liquids in therapy. 

May 6: I first started talking "at" Aaron on the phone!

May 14: First ENT appointment, good news on Aaron's vocal cords!

June 1: First time Aaron picked up his own phone when I called!

June 13: First trip out of rehab to a nearby park! 

June 16: First year accident anniversary.

June 19: First trip to the movies with friends!

July 31: First started using rolling walker outside of therapy. 

August 29: First big social event with friends!

September 12: First time coming home since accident!

November 21: First time going to church!

December 24: First time spending the night at home!

May 31: First trip to the beach!

July 3: First time out of rehab two nights in a row, first time on a (mini) vacation to see his parents in Sannibel!

August 11: First thin liquid trial, he got to have Diet Coke for the first time since before the accident!


September 25: First concert!

2011

January 22: First time Aaron was caught getting in and out of bed on own, rails up or down!

March 7: First started trials of mechanical soft foods.

June 16: First time time eating regular food! First trip to Disney!

June 22: Went to Trauma Awareness Day at LRMC and met some of the staff for the first time!

October 23: Aaron's first time flying and first trip to Ohio since the accident!

December 31: First time swimming in the pool!

February 4: First time "driving"!

June 16: First time eating at Hooters since the accident and first Rays Game!!!

July 4: First time at a water park!

oUr DaYs iN tHe ICU...the medical stuff

  Beware, this one is a LONG one! I will fill in the gaps with some other tough stuff and funny random moments from our ICU stay another time because there is a lot I can write about.   

 Side notes...

    I want to let you know that have posted some pictures below (with Aaron's permission) that might make some people a little uncomfortable. One of the nurses and our pastor both suggested that I take some pictures along the way. I was reluctant at first and I pretty much thought they were crazy at the time but I am glad now that we have them since they tell such an amazing story of what we went through. This is the first time I have ever really shared them, besides with close family and friends. 

Lakeland Regional Medical Center...

    Aaron spent a total of 58 days in the ICU, about 35 miles from our house. I have to be honest, I was a total mess when we left! I don't like change to begin with and I loved our staff who took such great care of us...praying with us, laughing with us, and even crying with us once in awhile. They were such a blessing when our entire world was turned upside down. I didn't know what I would ever do without them holding my hand each step of the way. 

Lakeland Regional Medical Center

Having faith...

    This is the part of the journey where my faith would be challenged and changed in a way I never could have imagined. I learned what is was truly like to trust in God's plan and not my own (those plans I had mentioned that Aaron and I made in one of my first blogs were null and void at this point)! I am definitely not saying that I could always 100% say "God, I am with you on this!" because I would be lying. It took a long time, a lot of obstacles, and a lot more patience for me to completely hand it all over. 

    One of my favorite scriptures is from Proverbs 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding; in all ways acknowledge Him and He will make your path straight." One night all I could do was read this over and over and hope that the more I read it the more I would just trust because there was literally nothing else that could be done, not by me or the doctors. This would also be the first of many verses that I would start to write on Aaron's dry erase board in his hospital room. It is also the one I carry in my purse to this day. 

    My philosophy...

    Our pastor had a conversation with me during one of the first days in the ICU (the first of many) and he had suggested to me to not ask questions that I didn't want the answer to. This advice was yet another blessing, it was a big reason why I was able to stay so optimistic and believe in basically a miracle! Soon enough, everyone knew that they were not allowed to ask questions unless...

1. I couldn't hear them ask. (And they didn't tell me the answer!) 
2. They asked my permission.

Looking back...BEST ADVICE EVER!!!!!!!!!

The first three weeks...

The first week.

    For some reason, during the first twenty four hours we had crazy this idea that Aaron would slowly wake up, be discharged a few days later only to end up home sitting on the couch all summer recuperating while we waited on him. Well that didn't happen and was far from the reality we were facing. 

    Even though Aaron opened his eyes and was able to respond to me by showing me thumbs up less than 24 hours after the accident, one of the nurses talked to us about "window" of time where a brain injury could take a turn for the worse. Soon after this conversation and less than 48 hours into our ICU stay that happened. From there we started our roller coaster ride and I began to hate Wednesday's. 

    On Wednesday, June 18th Aaron's inner cranial pressure (ICPs) started rising. Even though he had an external shunt placed into his brain to drain away fluids, the pressure inside his skull where the brain was swelling was still too much. The doctors decided put him on a machine called Arctic Sun, it cooled his body down to help his brain rest with several cooling pads that were laid across Aaron's body. This seemed to do the trick! 

The Arctic Sun Machine.

   Exactly a week later on Wednesday, June 25th when things seemed to be getting better again Aaron took another turn for the worse as his ICPs continued to go up again. This time they decided to put him into a medical induced coma to allow his brain to rest. Again, this seemed to be just the quick fix we needed. 

    During these first two weeks, there were times that we were not allowed to stimulate Aaron at all, which meant not touching or talking to him. We couldn't even turn on the lights in his room unless it was absolutely necessary.  Moving him, well that was pretty much impossible unless we wanted to risk the pressure increasing. 

   On Tuesday, July 1st, the neurosurgeon started discussing the option of surgery since Aaron's ICPs were still continuing to go up too high. We discussed the surgery in the morning and I signed the paperwork to have it the next morning, ironically another Wednesday. That same night, Aaron's ICPs were into the 60's or 70's (the staff started treating it as serious when the ICPs started to get into the low 20s). The neurologist that was on call came in to tell us that Aaron probably wouldn't make it through the night. My friends and I looked at each other to confirmed that he really had said that we needed to prepare for the worse. 

    Friends of ours went to pick up Aaron's brother, his wife, our nephew, and Aaron's mother from the airport. Aaron's dad, step-mom, and their kids (who had been in Florida off and on) had literally left two days earlier and had to turn around and come back down. I surrendered my cell phone and calls were made to let everyone know that it was pretty bad and the doctors were concerned that Aaron wouldn't even make it through the night. 

    It then became a waiting game. I did not leave his side and the ICU staff even allowed me to stay with Aaron during shift change. I remember sitting  next to his bed while his best friend sat on the floor for hours. That night, his friend traded places with the moms. I fell asleep against the bed rail eventually. 

   Early the next morning on Wednesday, July 2nd our own neurosurgeon was back. There was a small window of opportunity to do the surgery so we decided to take it given the alternative. Those few hours in the surgical waiting room seemed to go so slow. Only two family members could be there at a time so friends, family, and one of our pastors took turns trading in and out to sit with me. 

    The plan was to take Aaron right back to the ICU room after surgery and as soon as he was settled, I would be let back. The surgeon called us into the hall as they wheeled Aaron by. He explained to me and our friend that the surgery went well but he was concerned that Aaron's "pupils popped". (We had an amazing nurse with us through this stretch and she later explained that this meant that his pupils were larger than they were supposed to be and this was a sign that he could have serious brain damage that he would never recover from.) 

Aaron's after the surgery.

July 18th...

    The following weeks were relatively quiet, it was still a very painful waiting game. Not only was my faith tested but also my patience. By this time family came and went, Aaron's mom who had just retired was able to stay behind temporarily. 

    The head nurse came into Aaron's room one afternoon. Standing only inches away from Aaron, she explained that she knew we believed in God and she wanted to give us time to pray about things. She said that the doctors would go through the protocol and start taking Aaron off some of the medicines soon and would be looking for signs of his reflexes to start coming back and him to start waking up. She told me she wanted me to know what was expected so that if Aaron didn't respond, I had time to decide what I thought HIS wishes would be. 

   Even though I know what his wishes would be, I went out of Aaron's room immediately to call our pastor. Since things with Aaron had proved not to be consistent and he often surprised us, I often kept that kind of news within a small circle to see how it played out before we made it a public announcement. Our pastor and I discussed who I should tell, given the worse case scenario. He helped me decide that I would talk only to Aaron's parents, brother, and some of my family about the conversation I had just had. If things progressed great, if not it would be then when I had tell everyone else. 

   I often called to check on Aaron throughout the night during his stay in the ICU, I was lucky to get four hours of uninterrupted sleep that summer. When I called that same night the nurse told me that she thought that she had seen Aaron's eyes open slightly! I was so ecstatic that I called back less than an hour later to make sure it was still happening and since it was I called his brother at 3am in the morning because this just couldn't wait!

   6 weeks in...

    Aaron had finally began to make slow progress but he was still on a ventilator at this point, not ideal this many weeks into this but it was one of the things we had no choice over. There was a lot of concern that there could be complications, after all they only recommended them in for about 2 weeks. On July 24th, they were finally able to get a trachea in as well as a PEG feeding tube for nutrition. 

The trachea finally in! 

The little but BIG things...

July 25: Aaron started yawning.

July 26: Aaron responded to stimulus (he moved his hand when they used tweezers to squeeze his nail beds).

July 29th: Aaron followed a command to wiggle his toes. 

July 30th: Aaron breathed on his own during a trial!

   

August 1st...

  

 One of the nurses was always making us laugh and when they started giving Aaron simple commands they were not sure if he was actually following or it was just a movement he randomly did at that exact moment. This one nurse decided to have him do something out of the ordinary to see if he was really following commands. We returned from lunch that afternoon only to be greeted by the doctor and a couple of nurses in the hallway who were thrilled to tell me that Aaron actually smiled on command! (Probably one of my favorite stories from the ICU!) 

August 10th and 11th...

    I had just gone back to work, fortunately another blessing was that I had been summer vacation this entire time. 

   They did a 24 hour trial with Aaron off the ventilator. It was successful so they were able to move him to the trachea collar, which gave him oxygen and let Aaron do all of the work to breath on his own. It was so strange to go into Aaron's room and have the ventilator machine missing from the corner of the room. One of the nurses also had Aaron moved into a chair one afternoon, where he would sit up for the first time all summer! 

No more ventilator!

August 13th...

    Aaron was discharged from the ICU, AMEN right?! He was taken by ambulance (non emergency) to a specialized rehab about an hour south of the hospital. We said our goodbyes, well I did, and we started a new chapter... that is coming eventually!