gRoWiNg PaInS

     There was a period over the past (almost) eight years that it seemed that things were constantly changing and we were constantly experiencing growing pains. 

    The huge transition from the ICU to the rehab was just the beginning of our growing pains. At that point, I knew the machines and I knew when Aaron was "good". I trusted the staff. I knew my way around the hospital. I was devastated, yet relieved, to know that we had literally survived and the next steps we were about to take were in the most positive direction anyone could have ever imagined. I don't even know if I can consider this a growing pain, I'll just be honest (and probably only a few people until now know) this was a hard transition for me and I had a major melt down before, during, and after the big move.

   The growing pains continued as Aaron settled in to the next part of our journey almost an hour away from home. The new room felt sterile and somewhat reminded me of the hospital and we inherited a roommate, which I was less than thrilled about. Before I knew it we were upgraded to a single room with Tommy Hilfiger furniture and we felt like we had entered the Hilton in a different building and not long after that we were moved to a similar room uptown. Aaron continued to do well and I adjusted, there was the consistency of the staff we had grown to love and appreciate. The therapists who we bonded with and to this day are still some of my favorites! I could count on them and trust them to do what was best for Aaron, even if I wasn't there. After about two years Aaron continued to do well and we started having conversations about Aaron's continued care, after all he was surpassing what the rehab was supposed to do for him. The thought of leaving terrified me and it didn't help when we felt some push back from the rehab and their long term plan didn't so much match ours...more growing pains, to say the least. 

   Our next stop was somewhere local. I could literally drive there for a visit after work and be home by dinner. I was excited about this transition but then came the reality of a new building, a new room, a new staff. There was also a level of independence that Aaron had not yet been allowed to have and that was a huge growing pain in itself! It should have been a good thing but not only was it a transition for him but for me as well I also had to build new relationships and learn to trust new staff members. There were a few hiccups the first night and the second day but I was learning to speak up and I was getting good at advocating for Aaron. Again, we adjusted and settled in as we had done before. Some of my most memorable growing pains were some changes in therapists, several room moves due to remodeling, and some staff members that didn't quite see it our way. 

   Moving Aaron home was easy and exciting and it seemed pretty painless actually. It did change everything all over again and I pretty much felt I had home under control so I never really anticipated any growing pains once we got here. In fact, the transition has been pretty easy and we have adapted well over the past two years with little to no growing pains, at least not like the ones I fondly remember from early on. 

    This week that I realized that we still will have some growing pains. I saw this quote and it it put our growing pains into perspective today (and all the ones over the past almost eight years). 

    As much as I am struggling right now with some growing pains and how much I have struggled with the previous ones, how lucky (and blessed) are we to have the ability to grow?! 

For us, growing pains also mean that Aaron is still getting better <3 

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. 

LeAvInG tHe DoOrs Open

        When it comes to having a family of our own, adoption has been and is one of the options we have considered all along.

        We have spoken with many couples who have adopted over the past few years. We have heard their stories. Some went through agencies and had to drain their savings and one even put their child on their credit card. Others found a baby to adopt through a friend of a friend and were able to do a private adoption. And yet others fostered and were able to adopt the children already living in their homes. It wasn't long before we found out that adoption looks different for everyone. 

     In researching agencies, it is scary and there are a lot of considerations to take into account and preferences to decide on. Other agencies required thousands of dollars in advance, which is okay, but will not be refunded if the birth mother is changes her mind and decides to keep the baby after he or she is born. 

Most agencies specifically ask for two healthy parents.    

Knowing the challenge of being able to convince agencies that Aaron is indeed healthy for all intensive purposes and has some limitations is proving to be our biggest challenge when we look at adoption. 

        After talking to a few of the agencies and getting a recommendation from a dear friend's church, we were put in touch with a lawyer through Tampa. She was willing to work with us, there was only one problem, Aaron didn't live at home during that time. She had said that no one would take us seriously if I couldn't even care for my husband at home. I knew what she meant. Adoption (through an agency) would have to be postponed or would it? 

        It was that very same afternoon that I met with someone that helps us handle Aaron's care. She explained that Aaron had surpassed the need for the level of care he was getting at the rehab facility and we needed to talk about Aaron's options...one of which was moving home with me permanently. 

cHaNgInG dIrEcTiOnS

         After some time passed and we had more discussions, Aaron and I decided to forget the specialists but instead to change our direction. At that time we considering that maybe God had other plans and we needed to be open minded. 

      We first decided to consider becoming foster parents. Aaron's dad and step mom had been foster parents and were able to adopt two siblings after they were in their care so we thought that would be an option with looking at. I called our local agency and asked several questions, I shared our story and specifically went into details about Aaron's health because I knew that could be an issue. Aaron was also not at home permanently at this time so I knew that too was another potential obstacle. They were encouraging and said that they did not think there would be any problems with us being able to foster. We filled out some preliminary paperwork. The next step was attending an informational meeting, it was there that we realized that fostering just wasn't for us. We wanted a forever family and they kept stressing the importance of a temporary family. We wanted a baby or toddler and they needed homes for teenagers. It was okay though, we gave that option a fair chance and we made the best decision for us at that time.

       Adoption was another one of our options. I was fortunate to find others in the area who actually had adopted and we were able to get information from them. I have a long time friend who has adopted so I talked with her a lot. We also called around to some of the well known agencies in our area and were connected to an adoption lawyer through a friend's church. We soon found out that there were some obstacles, other than the expense that we were quoted as a minimum of $20,000 by most sources. The other main obstacle we faced is that all of the agencies required two "healthy" parents, and we were not sure Aaron would be considered as that? Plus a birth family had to actually pick us, would Aaron's disabilities prevent them from wanting us to raise their child? 

   
     As a result of the all of the above, sometime in the spring of 2012 we went back to the fertility doctor, we hadn't been there for close to a year. The doctor was very welcoming and discussed the alternatives he and the urologist had come up with. He was confident that one of those options would help us achieve our goal of starting our very own family. He seemed so certain that we shouldn't give up and was very optimistic that we could be ready to start a family within a year. We walked out of that appointment so torn. I think I was hoping for bad news, news that would force me to accept once and for all that we would never have children of our own. 

      In order to pursue any of the options that the doctor recommended, I first had to go through two tests. The one was just a regular appointment but I had to miss work. The second one was more intense, I needed a driver and it required light anesthetic (which I had never had ever in my life). Fortunatley, I was able to schedule the second once once school was out for summer and I found a sweet friend to take me and bring me home and also who I felt comfortable sharing what was going on. 

     

  

   

It'S lIkE rIdInG a BiKe...

   You know the old saying, once you learn to ride a bike you always know how. Well when it comes to a post traumatic brain injury that is not always the case, whether it's riding a bike or anything else you have known and have been able to do practically your entire life. 

    This July we were able to barrow an adult sized tricycle and a helmet thanks to some pretty awesome people. As usual, this was just another crazy idea I had that I thought we could try. With a little assistance, Aaron was able to get onto the bike. Within in minutes he was riding down the road all by himself and I was chasing after him! Steering and braking were a bit of a challenge but practice makes perfect right? We live in a small gated community with a long stretch of street that made this challenge a little easier. I even strapped Jasper in for a ride, against his will of course! 

     Aaron has definitely become an exception to many of the norms associated with what happens after a severe traumatic brain injury. So many things we were told he would never be able to do have been proved wrong time and time again. It has taken over seven years to ride a bike, among many other things, but I am delighted in every bit of progress big and small! There are so many things I never knew I could be excited about and thankful for. 

     A few weeks ago we went out to dinner, I turned around to see where he was as we walked into a restaurant. I thought he was right behind me but to my surprise he had stopped to hold the door for an elderly couple that was walking in behind us. You can imagine my surprise as Aaron always used to hold doors for people! Up until his accident he actually still opened the car door for me wherever we went! 

    "Have patience God isn't finished yet." Philippians 16

tHaNkFuL

      Each November I see the random posts of things to be thankful start on Facebook, except I usually see it too many days into it to remember to actually do it myself! This year I saw a friend's post the very first day of November so I decided to give it a try this year too. While most of the things I posted were silly little things, I happened to run across this quote and it seemed to go with the thankfulness theme and be a bit of inspiration for a new addition to my blog. 

"The thankful heart opens our eyes to a multitude of blessings that continually surround us." -James E. Faust

     Even thought Aaron is 100% a part of all this, I am writing strictly about how/what I feel and know. As he gets better and you have conversations with both of us you will see how our experiences, feelings, and memories are completely different throughout the past five and a half years. Just like he has, I have had my own battles. Even though Aaron was living and breathing and even listening he hasn't always had the capacity to help me deal with some of the tough stuff and there have been times he has I have opted to keep him out of it just for the sake of giving him a few less worries. Let me elaborate by saying that if you know Aaron well, sitting around worrying about others is something he does well and since he was doing a lot of sitting at one point I did not want to burden him with anything else with so much on his plate, leaving his main focus on getting better. 

    That last two years were a few of my toughest, I have tried to write about it many times but I just could never get it "right" so this is yet another attempt that I may end up deleting before I finish...

    One of the main struggles I have had is that I once felt the need to be "normal" (maybe "average" is a better word to use) as long as I can remember. It's not that I didn't appreciate what I had/have, because I did/do, I just wanted so much to be like everyone else…boring I know! As I get older and more experienced in life, that does seem pretty silly but that is how I felt for a long time. Just when I started feeling that I was accomplishing those "normal" things, which included; graduating from college, moving to Florida/entering into the teaching profession (that was a fiasco as well), getting engaged/married, and purchasing our first house…it all went from wonderfully normal to completely confusing and crazy within two to three days after Aaron's accident. Things haven't been the same since then but I finally starting to be able to accept how things are and the blessings that come with this "normal"! 

     Even though I know that good relationships take a lot of give and take, a lot of patience, a lot of forgiving, and a lot of accepting yet I have struggled with many relationships since the accident. I know that good, healthy relationships take work during normal circumstances but throw in a catastrophic accident and all hell seemed to break loose! I have continued to struggle with this and honestly still do.  I usually blame myself, maybe because it's easier. I have had struggles with both family and friends some known and some unsaid. I have purposefully shut people out to avoid hurt (sometimes on my end, sometimes on theirs), I have given up on some relationships because they were too hard or I felt they just weren't going to work no matter how hard I tried. I have also avoided relationships simply because I didn't know how to make them work. I used to dread meeting new people because they might not understand or might judge our situation or just feel sorry for us. I hated seeing old friends at times because things were not they way they used to be. I have been challenging myself to do better in both these areas. It's still a work in progress and I am not perfect and as you can see it's all just plain confusing.  

    No matter how I look at things or how I feel, I know we are continually surrounded by blessings big and small and my heart is thankful no matter how different things are than how I thought they were supposed to be. At the end of the yucky days and tough years…I  am ThAnKfUl because I know God's plan is better than any plan I had for myself and Aaron.