Reflection

Well, it's that time of year again. Time to reflect on what 2017 brought us and what will come of 2018. Until designating time and energy into to look back I didn't realize how full this year was of life changing moments.

-Seizures were brought onto our radar. In April Layla had a cluster of many seizures including a grand mal seizure lasting over an hour. We were fearful that she wouldn't come out of it but I thank God that we were already at the hospital for this event and with multiple meds they were able to get her out of it. It was a very scary, eye opening day for us. We realized that seizures had been happening for a long time but we were unable to recognize them, and didn't know what to look for. This is an ongoing issue and regular meds have since prevented any major- long lasting seizures. There is a high chance that we will see increased seizure activity at some point but we are thankful that they are having minimal impact for her day to day activities. 

-Aaron went through a career change. It was a tough decision for him to move out of what he went to school for but it was the right change and he is in a much better work environment than he had been. 

-We went on the long awaited UCLA trip with the Undiagnosed Disease Network. There the Doctors confirmed Layla's diagnosis of Pontocerebellar Hypoplasia type2d. I wish that this diagnosis came with a treatment, that there was a way we could extend our time with her and how limited she is while with us, but unfortunately the prognosis isn't good. Our priority is to keep her as happy as possible (which she's been doing very good at lately), enjoy what time we have and now we can better make decisions with this information in mind. It has been a strange transition to be done with diagnostic testing but that has brought less poking and prodding and a little more peace.  

-With the help of many generous people within approximately 8 months we were able to fully pay off the wheelchair van. That blew me away. When we started the initial applications, I never saw that possible and it wouldn't have been without our generous community of people. This van has been a lifesaver. 

- We sold our first home and moved onto a second one that is better suited for Layla's needs. It's been a slow transition for me to bond to the new house but it's getting better. 

- And in bittersweet news we made the final decision to not attempt to expand our family naturally. The risk of recurrence was too high and we are not gamblers. We both knew that we weren't done with having kids. Our hearts have been broken and pieced back together many times over the past few years in this area. Attempting to prevent bitterness and anger is hard at times. Life is not fair. We all have these sensitive areas in our lives. Instead of focusing on what I cannot change I try to focus on what we do have control over. I knew that if the two of us gave up on having another child it will only add a wedge of sadness. So last January we met with an adoption agency. At this point we have fully completed our home study and are on the waitlist to bring another child into our lives in a different, yet still very beautiful way. We are trying to be patient through the very long and slow process. It will likely be another year or two before we bring home another child. For now, we will focus on Layla. We want to work on making the house exactly what she needs by adding ceiling tracking and a roll in shower when we can. And try and save as much money as possible to go towards this costly decision of international adoption.
A lot of things are out of my hands at this point and I'm working on trusting that I have done the best with what I have and the rest will work itself out. Looking into 2018 I already have a growing list of things to sort out. But I am more confident these days in the great team of support around that it will not be fully put upon my shoulders and for that I am thankful. Cheers to another year.