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. 

aDjUsTiNg the SaiLs

     Last spring we decided to pursue adoption to grow our family...again. This time as we carefully considered our options when it came to adopting and after many prayers, and previous setbacks we decided to pursue adopting through the state agency. 

    Children I have taught, children Aaron's parents adopted, as well as foster children my friends care for all have been part of this agency at one time of another. This would open us up to children of all ages and even sibling groups. These would include children who could no longer return to their parents for different reasons. Most of these children were and are already in foster care and needed a forever family. 

    It started with an informational meeting about 30 minutes from the house on a random Monday night in April. After the meeting was over we stayed to ask a few questions. I had my doubts that we would be the parents that they would want to consider but through some encouragement from friends we went ahead and filled out the packet of paperwork and sent it in. About a week later I received a few phone calls for some clarification about Aaron's health and some minor details surrounding it. A few days after that, I found out that we were invited to join the class (a requirement to be able to adopt through the state). 

    We spent each Tuesday night, all throughout the summer going to class. Classes lasted about three hours each. We also got homework and participated in several actives and assessments. We had to complete even more paperwork. Classes ended just in time for school to start back up the end of August and we "passed" and received our certificate. 

   Once the class was completed the agency had to recommend us for our home study. This was a big deal and also one of the final steps leading to us being able to adopt! Our home study was scheduled on afternoon shortly after school had started. It made it just a little easier that we at least had met the woman coming to do the home study over the summer when we had dinner with a sweet friend and her foster children. 

    I must say that the home study was a lot less scary than I had anticipated. I had been nervous and my already clean and organized house was even cleaner and more organized than usual. The home study consisted of me (and Aaron) talking about ourselves for about 2-3 hours...you know I was right on that! We gave a short tour of our house too, again piece of cake. Oh and we had to have plans, if you know me well you do know I always have a plan...an A, B, and a C plan even! That was it. I couldn't help but think we had said or did something wrong since it seemed so easy. 

    As much as we wanted to share with the world what we were doing this whole time, I was afraid to jinx us. Knowing that we had tried other options to grow our family and had gotten nowhere we decided to keep this adventure to an as needed basis which included some family, friends, and people who needed to fill out paperwork for us! As we progressed through the steps successfully we did get a little braver and did start sharing just a little more.  

    About a week ago, we received our home study to review. We requested a few minor details be corrected, nothing major at all. We were able to sign off by the end of last week that all of the information on it was accurate. Today (which also would have been my grandmother's 79th birthday) we received news that our home study was approved and we are now eligible to be "matched" with a child or children that could potentially become our forever family (this is the final step before adoption and all the legal stuff that goes with it). 

    We don't know when or how this will play out. Some families are matched within months, some it takes a year or even more. Some families are matched with young children, some are matched with teenagers. We have been keeping an open minded throughout this process and we are even willing to consider a sibling group. We have not requested a specific gender or race. Aaron is more open when it comes to ages, he is wiling to consider teenagers (which need forever homes) where I am more comfortable staying with elementary school aged and younger (what I know best). 

     As we have continue though the process to be able to adopt it's becoming more and more apparent that we are in the right place and this is the right time and we have chosen the right agency. The blessings we continue to receive can not even be counted. 

      All this to say, we are not longer trying to "direct the wind" and we have had to really "adjust our sails". We couldn't be more at peace with our decision and excited for the possibilities. We are also thankful for all of the prayers and encouragement many of you have given us along the way!

   

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. 

tHe RiGhT rOad?

         As a side note, what I am about to share here through this particular post will pretty much sums up where we are at in the present. I know a few people who have been asking what the current situation was and wanting to know if I have any exciting news or surprises...oh and be prepared for even more up close and personal.

    After we went through some preliminary testing and more procedures during the summer of 2013, Aaron and I decided that we were finally ready to "try" to get pregnant during the fall of 2013. This would only be possible with the help of the fertility specialists who were convinced they could help us make having a family of our own a reality. We had looked at all of the other options and discussed the pros and cons in depth, this option seemed the most reasonable. It allowed us to be making the decisions and not having to rely on others to decide whether or not we could be parents. Believe it or not, it was one of the more affordable options too even though insurance doesn't cover much at all. 

      Everything appeared to be in order. The doctor we see recommended insemination, the easy and the least expensive approach offered when dealing with our obstacles, given that I was healthy and young enough. Our chances of success were pretty similar to those who are trying to get pregnant under normal circumstances each month. I was apprehensive, Aaron was supportive, and the doctor remained optimistic. 

   You would think me, the planner, would be ready for this. Every step of this is planned down to the day and sometimes to the hour. Of course it is planned around my body's schedule and my body does not run like clockwork, making it more of a challenge. Many appointments are scheduled as a result of timing of my body, sometimes giving me as little as 24 hour notice until an appointment. I should mention, the specialist we see is also on the other side of Orlando so the unpredictable traffic can sometimes add stress to the whole thing. And of course, if you know me, I  do anything and everything to be at work and make appointments in the late afternoon and/or vacations as possible which has been difficult and not even an option most times. 

     The first time we did an insemination probably was the worst. Since I have never been pregnant, I have no idea what to expect if it were to work. Turns out the "two week wait" as they called it makes you absolutely crazy, well it makes me crazy anyhow! Google didn't help either. I did know, however, the day it would show up on a test. I was advised not to test until that 14th day. And let's be honest, I felt it was highly unlikely that we'd be successful that first time. That would have been much to easy. Only Aaron, my mom, and my "Florida mom" as I often refer to her as knew that we had done the first round. I didn't need to go out and buy a test since I didn't even make it to the 14th day that month.

    For the second time around, I was even more apprehensive but we decided to go through a second cycle anyhow. Only Aaron knew this time. The doctor had recommend at least 3-4 cycles to start out. This time I couldn't take it, I just knew it wasn't going to happen so I tested a few days before that 14th day. The test was negative, just like I expected. 

     Again, the doctor remained optimistic. He encouraged us to finish out at least one to two more cycles. In the meantime, we added a medication that made sure I ovulated regularly (even though we were pretty certain I was). This also added an extra appointment each month to make sure I had not developed any cysts, a side effect of the medication. The medication somewhat enhanced normal PMS symptoms for me, which also can be easily confused with pregnancy symptoms. And IT was confusing and annoying. I did not want to get my hopes up. We did cycle three and four with this medication, both were unsuccessful. 

    I was ready to quit. This obviously wasn't working. The doctor remained optimistic and kept encouraging us that there was still a good chance that we could have a family of our own. He said we needed to give it a year. We eventually added an injection that I gave to myself each month that would ensure our timing was absolutely perfect. With this came more appointments and ultrasounds to check everything regularly. More "symptoms" occurred which I was used to from the other medication but I kept getting my hopes up because maybe this was it? My body seemed to be cooperating from what the doctor could tell me, my "numbers" even indicated high enough levels to be pregnant at times. Again, it all of the attempts were unsuccessful and came with more disappointment. 

    As of December 2014, we have done six inseminations and all have been unsuccessful. I keep thinking about quitting. Aaron is supportive either way. The doctor is still encouraging and hasn't ruled out any possibilities or recommended another type of treatment at this point.

 

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.