Year of 2012 in Review

Wow, I just looked back on my blog for this year. I am so grateful I started blogging. I never knew how important it would be for me to keep track of all my thoughts, worries, and the girls' medical history. It reminds me of all we have been through. It reminds me of how strong we have become. If you asked me in the beginning of 2012 what I think this year would be like, I would even have been able to start to explain what we have encountered. We saw 3 new specialists, we went to 7 specialists for Brooklynn alone. We went from exploring what might be going on, to having an answer. Life has thrown us a curve ball, and even through all the terrible things, if nothing else, it definitely brought my family closer together. This year I learned a few things... 1. Resilience, patience, and taking it "one day at a time" - these are all concepts that I have learned. I am not good at this by any means, but I am getting better. I have learned that not everything is instanteous. That there are things that are completely out of my control, and I just have to sit back and let the world guide me as it needs to. But I learned that I would do anything for my kids. 2. Being deligent and hard headed when it matters. I knew there was more we needed to do. I knew that I didn't just have to sit back and let my insurance company tell me no we won't cover it. I continued to push ahead and found other options for us. 3. Accepting help - this to me is accepting help from providers. This is me accepting the fact that the girls' dad and I don't have all the answers, and at times we need to go to the professionals (such as Firsteps) to give the girls the things they need to foster and grow. 4. I have learned how completely strong my kids are! They are only 2 and 4 and yet they are stronger than anybody I know. They can roll with the punches, they are always loving, and they are always reminding me that it doesn't matter what life throws at you, but if you have people who love you, you will get through it as best you can. 5. You can do everything right (maybe a few things wrong), but some things no matter how hard you try you can't change. We can't change that we got the diagnosis of PTEN Hamartoma Tumor Syndrome. We can only work with what we have and make this life the best we can. 6. Family truly is the most important thing. I will sacrifice anything for my family. I am the momma bear when it comes to my kids. I will protect them as best I can. And if they do get hurt, or life throws them something terrible, I will be there to pick them up. We will get through whatever it is we need to get through as long as we stick together. So 2012, even though there were times you completely knocked me on my ass, I still am grateful for the wonderful gifts I have been given. I have an amazing family, not only my tiny family of 4, but all those other amazing people I am proud to say I am related to (whether it's by blood or marriage, either way I am lucky). My hopes for 2013? That we all remain healthy. That after 3 months, we have an answer for Sam's test, and either we can get him tested and cleared of all possibilities of cancer, or we can be excited because it's negative. I hope we continue to grow stronger. That we can finally get an answer as to if we will have more kids or not. I am hopeful that all those around me stay happy and healthy. I am hopeful that no matter what, we can continue to grow strong and continue to expand our love. And I am SOO excited to see how the girls' grow and change. To see their personalities develop even more. To see how strong they become, and to see the progress when I look back on my blog and realize just how far we have come.

Update from the last month..

So our household is still adjusting to the news of the PTEN mutation. We are still awaiting Sam's tests results. So we are still in limbo of how to feel completely. We are starting our evaluation for the school district to see if we can get therapies or get admitted into their early childhood preschool. It is very overwhelming. We have to have many evaluations. Yesterday started our evaluations - we had the cognitive, autism therapist, and speech who observed her. The questions they asked were overwhelming. They saw Brooklynn in her full force - they were able to witness her inability to transition, her complete and utter focus on what she wants and inability to move on if she doesn't want to, her repetitive behavior and speech, and her sometimes "aggressive behavior" of hitting and throwing some silent fits. It was hard to see it. It was hard to hear the autism therapist ask if had ever heard the term autism with her (she was researching what her syndrome was - saw autism is 25% occurence, and even stated she saw behaviors that could possibly be concerning). It was disheartening, it was nerve racking. And next week, we go to the speech therapist, occupational therapist, and physical therapist (possibly). I also have to speak with the school psychologist to see about her social/adaptive behaviors. I won't get the official results until January 23rd. I am used to waiting, but I am so tired of waiting! I know that she needs therapies. It is just scary that I might encounter something I don't want to or that i haven't heard before with her. I asked her teacher to fill out a questionaire, and it was eye opening to really see how little she is interacting with her peers. It makes me a nervous wreck. I see her so fun loving and excited and play well with her family. But I know she has problems interacting with those her age. I just hope we can get information that helps us to improve all she needs improved, and foster her development as best we can. I am just struggling with being okay with all this. I am struggling with staying strong. I struggle with not letting it eat away at me day to day. I think time is making things better, but it is always on my mind. I am letting it consume me and I know I should not do that. Maybe after we get all these evaluations out of the way, and we no longer have to wait for things, I will finally be able to move on. But we still have so much up in the air. It sucks. Izzy had a cardiology appointment today since her PCP heard a murmur - she felt it was innocent but wanted to check with everything we have been through. We went and she passed with flying colors - her heart was perfectly normal! So one thing marked off my worry list. We are getting ready fro christmas and very excited. Life is so amazing, even with everything, that I try to take all the positive and concentrate on that. I keep pushing the negative back...but sometimes it just creeps its way to the front. One day it will go away completely...I hope :).