Tuesday, December 31, 2013

Reflecting on 2013

We received the best gift this year, our sweet Alice was born!  I wasn't thrilled about my daughter being born in 2013, I guess you could say I am slightly superstitious of the number 13, because of my grandfather and how he felt about it. (long story) So...as I reflect back on 2013 I could easily talk about all the negative things that happened, I could blame the number 13 for all the bad things ...and say 2013 was a terrible year...BUT I am not...instead I am going to look at the positive things...

Our family

My mom has pulled through some very scary episodes that she was hospitalized for and thankfully is on the verge of getting some answers so that we can avoid it from happening again. My sister survived a very scary car crash, thank God!  My Grandmother has been in and out of the hospital but has pulled through and fought her way back up. She has been such a trooper! I am so thankful for all of these things...sad that they have happened but grateful that they are still here with me. Grateful for a strong support system, and my wonderful family and friends.

Alice's 1st Christmas





Of course how could I leave out the reason for creating this blog? Alice being diagnosed with Craniosynostosis. Yes it was a very scary and emotional trying time for us...but I am grateful that she was diagnosed with something that COULD be treated. Happy that it was caught early enough that we were able to get her early treatment. Blessed to come across Dr Magge that was able to give Alice the surgery that we wanted for her, endoscopic surgery. We didn't have any options, she had to have surgery...and if she had to, we knew in our hearts that fighting for the less invasive surgery was what we wanted for our baby. So thank you 2013 for proving to me that you didn't bring just negative things...but there was a light on the other side.

When I first found out about Alice's diagnosis I was a basket case. A friend of mine said some things to me that helped alot. She said,

"I know it's hard but when you are worrying, try to focus only on the things that you can change or have control over. Focus on doing the best you can for her right now and doing as much research on the condition, etc. See if there are other families who have been through it before.
Just knowing what to possibly expect will help. The unknown is the scariest"

Her words really helped me to look at it from another perspective and look at it as a way to help other families as well and focus on helping my daughter in any way I could. My friend, who I mentioned above, had been through the unthinkable, losing her sweet girl to a rare disease called Niemann-pick. I learned alot from her and from her sweet girl. Her daughter touched the lives of thousands and helped others in so many ways. Her blog inspired me... the way she shared her story, shared her sweet daughter with us, how positive she was and the way she took such a heartbreaking diagnosis and used it to touch the lives of others and spread the word about Niemann pick disease. Check out her blog to read more about sweet Kaitlyn and Niemann-pick disease at this link.  http://niemannpick.blogspot.com/  Thank you Deanna, you inspired me to look at the positive and to focus on what I could control. I know our situations are completely not related and there is no comparison to what she and her family have been through...but I just wanted to acknowledge her and her beautiful daughter Kaitlyn for helping me.

After speaking to her, I knew others would be as upset as I was initially and I knew that I needed to record everything I could to help others that were searching for guidance and information. If others were searching for help on the internet, I hoped that my blog would help them and hopefully even lead them to early treatment for their child. This is another BIG positive thing about 2013.  I have received so many messages and it makes me feel so good inside that I was able to do my part to help them...validation that documenting everything was the right thing to do.






So instead of looking at these things that happened in 2013 as bad things I look at them in a positive light. I am so fortunate to have my family...my mom, dad, sister and my grandmother and extended family. I feel beyond blessed to have my husband by my side and my three sweet babies. I look forward to 2014... to celebrating Alice's 1st birthday and I pray that things continue to progress with Alice and that she will not need any more surgery. As long as things continue to go well, Alice will be able to remove her helmet permanently by the end of the summer and hopefully we can put this whole 'Alice in Cranioland' journey behind us. I look forward to making many more memories with my family and cherishing every moment I have with them.


Checking out the lights



Happy New Year everyone!!!