Letting Go

     I realized I haven't written in awhile, truth is I am often thinking of what I could write and it's just a matter of sitting down long enough to do it. The idea for this one came to me at the end of December after a trip to Disney with friends, since then two other events happened and they seemed to somewhat go along with the original idea I had wanted to write about.

Part 1: 

    Over the holiday's, Aaron's best college friend was in town and invited us to join him and his family at Animal Kingdom the following day. If you have never been to Animal Kingdom it's a fun place to visit and as usual Disney goes all out, including the authentic jungle terrain that includes imprints of animal tracks, a variety of vegetation on the sidewalk, and lots of slopes and hills. If you have a walker it feels like an obstacle course with booby traps, it is also quite the work out for whomever is helping. Without too much thought, I decided to dust off the custom built wheelchair that's been sitting in the same corner in our garage for three plus years and take it too to make our trip easier and more enjoyable for the both of us. It made me realize that taking the wheelchair is not a big deal, it is actually helpful and much less exhausting for the both of us. We were both happy campers leaving Disney that day and I was reminded that we have the wheelchair for a reason and it's not a bad one. Using the wheelchair doesn't change the what Aaron can do. The past few years I have been so set on "pushing" Aaron that I forgot how much easier it was to literally push him in that wheelchair for a few hours. 

Happy pusher!

Happy Rider!

    

Part 2:

    The next two things I am about to share don't have pictures to go with them but I am sure you will agree that even if I did they may not be appropriate for social media! I tend to rely on staff to help with Aaron, I rarely use family and friends. If you know me, you know if I leave you with Aaron it is usually because I am desperate and have no other options. 

     A friend from work had convinced me to sign up for a local boot camp, Aaron's mom happened to be visiting for a few weeks in January so it was the perfect opportunity for me to take advantage of the extra help and go at 7am on a Saturday morning. I was finishing up that first morning and had been away from the house less than an hour and a half when Aaron FaceTimed me and is laughing. All I could make out was that they "had made a mess". I rushed home thinking it was the stupid dog, oh how I wish that would have been the case. Out of no where, there are usually warning signs, Aaron needed to use the bathroom while I was gone. Not knowing that it may have been coming, I neglected to give his mom the bathroom 101 course. So two things happened here. The first thing was that someone other than myself or trained staff needed to help Aaron, granted I know it was his mom it was still something I had tried to avoid for his dignity (And from what I gather, when there was no other choice, it wasn't as big of deal to Aaron as it was me.) Second Aaron clogged the toilet, his mom tried to flush it, then it overflowed. This situation drenched our master bath in, well, you know!!! I will leave it there but you can imagine the mess, it's the kind that you don't know whether to laugh or cry. I think Aaron covered the laughing and his mom may have covered the crying...I just got what was left of the mess. It's not an everyday occurrence thankfully but it from time to time these crazy random things seem to happen to us. This  time was so much different because someone else got my perspective and I learned that it's okay. I know his mom could have done without this experience and I know that it might have been easier for me to deal with it but the reality is that I wasn't there. I can't be there all the time and I definitely can't control what happens when I am not there. 

Part 3:

      Last but definitely not least, I've been volunteering at a girls camp the past few years for an entire weekend in February. It includes over night and when Aaron moved home it meant that we needed to get 24 hour coverage for him while I was away. The first year we had people lined up and then they cancelled their shifts at the last minute, this year was not much different. The company and I managed to work out a last minute schedule with the staff that got me where I needed to be most of the weekend but there were still a few glitches to work through. 

     I found out late Friday night that one of the ladies scheduled to help cover the Sunday shift was only available until 11:30 am, camp ends at 12 but it also takes over half an hour to drive home.  I started brainstorming friends  who were in town and not volunteering at camp with me who might be able to help cover that time on Sunday morning. It hit me at lunch when I saw our friend's husband (she was also volunteering with me for the weekend) stopped out at camp to see for lunch. He of course agreed to help without a second thought. I jumped in the car as soon as the girls left and I could go home. When I arrived home, I walked in to an empty living room. When I realized the guys were in the master bathroom, panic set in. All I could think for those three seconds it took me to walk into the bathroom was that I couldn't believe that Aaron couldn't wait an hour to use the bathroom until I got home (makes sense doesn't it?!) and that if there was a repeat of the last bathroom incident we may be one less friend! Thankfully it wasn't a #2 problem this time and our sweet friend was listening to Aaron give directions for him to help empty the catheter. Although I was still modified and embarrassed that our friend was helping with THIS I was also overwhelmed with his willingness to help out even when it may have been uncomfortable or just a little bit gross. As I stood there looking over them and apologizing at least six times (probably more), I realized the guys were okay. They totally had it under control and our sweet friend was helping with such graciousness. My heart got big and in that moment I was reminded how thankful I was for that friend and that maybe THIS wasn't as big of a thing as I had been making it out to be in my head all these years. 

   Letting go isn't as bad as I thought it was going to be, I just need to find the courage to do it more often. I may have been uncomfortable  with it at first but it was good to be able to let a few things go recently. 

hIs TiMiNg

      In the heartbreak of knowing we might not be able to have our own family I was faced with a past full of plans and dreams that would no longer become realities, a present that I was having trouble seeing a purpose, and a future that seemed very uncertain. For the first time since Aaron's accident I was not strong, I was very broken. I had fought through the first few years without the thoughts of the future as the day to day battles were the priorities. 

          I was still keeping and had kept a lot of my feelings from Aaron. I knew he felt like it was his fault and that was not a burden I felt he needed to bear. If you knew him well before he accident then you probably know exactly what I am talking about. It wasn't him that caused this, it was the stupid accident. 

    During this time I really started questioning God's plans for our life. We had already been through so much that I felt like this one thing wasn't too much to ask for or was it? I began to also question if I just needed to accept that Aaron and I would never have children and move on? I went back and fourth with these thoughts for months. I was afraid to say it out loud for the fear of being judged or told we were crazy to even want to consider having a family given our current situation. 

   At one point, I even started questioning if we were okay not having children. I thought about the reasons Aaron and I had wanted children before his accident. I even began asking random friends and acquaintances their view on having children and the reasons they would start or had started their own family and why some of them had chosen not to have children. Interestingly enough, most of the answers I got were not rocket science. Most of our friends and acquaintances who wanted children or had children couldn't even tell me a good reason other than it was the next thing to do after they got married. 

    More months went by. I started getting brave enough to talk about what we were going through but I was guarded. When I did talk about it, I chose specific people and limited the amounts of information I disclosed. We had our supporters but I soon found out that no everyone was thrilled about the idea. No one ever said we were wrong or even that we were crazy, I could just tell they thought it was a bad idea. Some even gave specific reasons to support how I felt about their responses and what I thought they were really trying to say. Whether they were judging our decisions or note and whether they were just worried about the load that would add I am still unsure because I was afraid to ask. But it hurt and I already was struggling with it all, it just made my heart hurt more. 

   I keep talking about me but it's important to me that people know that Aaron has been involved in each and every decision that affected both our lives from the time he could finally shake his head yes or no and use a pencil eraser to point to a printed key board to spell his responses to us. Any life altering decisions since the months following Aaron's accident have not been taken lightly and most of all they have not been made without Aaron backing them. 

     I continued to struggle, mostly alone. I continued to be strong when I was with Aaron, often crying on my ride home after seeing him. I continued to push through, putting what I couldn't control out of my mind as much as I could and worked hard at accepting it for what it was. Even though I had just let a handful of people know about pieces of what was happening, I finally stopped talking to others altogether for fear that they would continue to disagree or judge what was best for our future. 

    I was communicating through Facebook with an old friend from a small group I had been part of right after Aaron's accident. She was also struggling with infertility on a different level and had written some things on her page. I don't remember exactly what she wrote but I remember reading it and driving in the car on the way to work a day or two later and it hit me on morning, that a-ha moment where it all made sense and I realized God hadn't said no but he had said not right now. I got it, I felt peace on this subject for the first time in months. I was able to focus on the positive, I knew it wasn't a good time to start a family whether it was possible or not. We weren't ready, I wasn't ready, and there were still too many what ifs lingering. This realization bought me some time and helped me go back having Faith in God's plan and more important, His timing.  

SoMe Of ThE nOt FuN sTuFf

       After a few weeks in the ICU one of the nurses noticed this weird movement that would run down Aaron's shoulder, through his arm, and down to his hand. It was just on the one side. It wasn't long before they were able to give it the name of mycloclonic seizures. One of Aaron's neurologists worked hard to finally find two therapeutic doses of medication that would control the seizures, which we also found out were common with brain injuries.
   
      Once we moved out of the ICU to Wauchula…somehow, somewhere one of Aaron's doctors felt we should be able to take Aaron off one of the two medications to control seizures. (This was a good thing as the one medicine they discontinued wasn't supposed to be used for long term.) Aaron had no problems after going to one medication and every time they examined him and did any testing there seemed to be no more signs of the seizures we had seen in the ICU. We were elated! 


       Fast forward to the facility in Winter Haven almost two years later…what do you know I go out of town for one of the first times since the accident for fun and Aaron has a full blown seizure. This was something we had not ever experienced and truthfully, I thought we were way beyond this point in his recovery so it was pretty stressful. (Especially since seizures can cause falls and with a brain injury, another fall could be devastating for Aaron.) I had left about 10 hours earlier when I got the call. There was a lot of drama surrounding the first seizure and trip to the hospital but thankfully my school secretary was available to go and sit with Aaron at the emergency room to all hours of the night. Did I mentioned that the hospital wouldn't tell me anything because of HIPPA and Aaron was not good on the phone at that point?! 

       From that day on, Aaron has continued to have what our current neurologist has diagnosed as "breakthrough" seizures. I had some of my own theories but since I haven't been able to prove them 100% I will keep quiet, anyone who has ever been a caretaker or parent can probably relate! It seems as if when Aaron gets a mild infection it can easily cause full blown seizures, the infections that would leave those of us who are healthy miserable and might cause us to miss a day of work. Again, it is something that comes along with a brain injury and is unfortunately unpredictable.

      Aaron has had several seizures over the past three years and they never get easier. After each one I go back to worrying and as time goes on, I almost forget to worry about them just in time for another one to sneak up on us. He doesn't seem to remember them, which I guess is a good thing. He has fallen during one. I have witnessed one myself. He has also been sent to the hospital on more than one occasion due to a seizure. 

       Last fall, we were having way more "stay-cations" at the local hospital than either of us would prefer.Throughout this past few years we have learned that due to strong infections, the quick fix for Aaron is to have a strong dose of IV antibiotics which are usually started in the hospital. When they feel Aaron is improving then they are able to send him back to the rehab where they have the ability to monitor the infections closely and continue the antibiotics. Aaron was in the emergency room and then admitted twice in two month time period. There were other complications that made it a little more stressful and anyone who has sat in an emergency room knows how much fun that is. 

     Aaron's neurologist was able to recommend a newer medicine shortly after the last trip to the hospital to go along with what he was already taking. Fortunately it was the perfect match because as of 11/16/13, we have been seizure free for an entire year!!!!!!!!! This also means we don't have to go to the neurologist as often, we have been upgraded to every six months and the last check up we literally spent five minutes with our doctor (who is awesome by the way)! While I hope we stay seizure free, there is always the possibility that Aaron could have another but I will take ONE YEAR without a seizure as a HUGE accomplishment! 

    Here are a few pictures documenting our first hospital 
stay-cation last fall. He was much sicker during the second trip so there were no pictures from then. 

Aaron kept asking for shorts,  I'll be the first to tell you that he is NOT a good patient to have lol! 

Sweet friends from small group brought milk shakes and french fries to Aaron to make him feel better!