I thought I would take a quick look back at 2012…..a few highlights.
January – brought the end of the bottle and beginning of the sippy cup for Boston (does not seem noteworthy to most- but in the life of a Down Syndrome/Preemie kid – this was HUGE!)
February – I completed a 1/2 marathon. It was in Disney and is was to raise money for Rett Syndrome – I am in no way a runner now. But I did it and it. was. AWESOME. (I still hate running)
March – I lost my amazing dog Harley. She was my rock – my cuddle buddy through the Rett Syndrome diagnosis, Boston coming 10 weeks early, the Down Syndrome diagnosis, Charlies affair/my divorce, moving out of our house…so so so much. I know people without dogs probably do not get it – but I lost one of my best friends this year :(
April – brought us hip reconstruction surgery for Brooklyn. This was one of the hardest things to go through physically for her. Once again though – she proved to me what a brave and strong little girl she is….months of recovery was in store.
May – My little girl turned SEVEN, where in the world has time gone, I can’t have a SEVEN year old!!! May also brought the Mobility Awareness Month van voting – we ended up not being one of the winners but the love and support I felt throughout this entire process was AMAZING. (oh yeah – it also marked the five year anniversary of Brooklyn’s Rett Syndrome diagnosis! WOW – five years.)
June – I had the opportunity to attend the 7th annual World Rett Syndrome Congress – this was the first time for it to be hosted in the United States and like any time I get to spend with my Rett Syndrome family – it was AMAZING! I met some new families and was able to reconnect with families that I have been friends with from the beginning of my Rett Syndrome journey. Another huge event in June was Brooklyn sitting unassisted for the first time since her hip surgery!!! I told you – she is a tough little girl! Oh….and I joined twitter :)
July – Brought a special milestone as well – the kids and I moved in with Jon. Most of you closest to me know Jon and how unbelievably amazing he is. We met last summer at his brother’s wedding and my life has not been the same since! I have not talked much about him on here (or facebook really) I feel bad, he is a private person and well – I am an open book – blogging/facebooking about everything in my life – I try to keep his life private which is hard sometimes when I want to shout it from the rooftops!
August – This was a BUSY month! We saw the Wiggles in concert again – it was their farewell tour so we HAD too, we even got to meet them again – even Greg! (We raised a little awareness too – Anthony now has one of Brookie’s Purple Cards!) August also meant I now have TWO kiddos in school. Brookie started second grade – and has an AWESOME teacher, she is fully included for the first time. Boston started preschool…and as scared as I was to see him go – he is really doing well! We lost a sweet Rett Syndrome gal this month as well – Karly. Anytime I hear of an angel passing it is tough but once I have met them – it almost becomes unbearable.
September – This meant my baby turned THREE! Oh how far my little guy has come since his tiny 2.3 pound entrance into this world. September also marked Brooklyn’s first hospitilaization for pneumonia :( <yes – this one scared the crap out of me> We also lost ANOTHER dear sweet angel to Rett Syndrome…..Anna. Each death gets harder and harder….especially the little ones. I did also have the opportunity to meet up with all of the Executive Board members of GP2C for the annual board meeting – it was a time of renewal for me and it was encouraging to look as we move into 2013. It is an honor for me to be a part of such a wonderful team!
October – Brought another year of Down Syndrome and Rett Syndrome awareness all month long – ok – who are we kidding – awareness is an EVERY month thing in this house! It also meant ANOTHER hospital stay for Brooklyn with pneumonia :( I also meant more equipment in the house as we now rely on “The Vest” airway clearance system to help keep her lungs clear, and a suction machine. (ugh) The good news is that we hosted another Rockin For Rett this year and Team Brooklyn raised another $10,000 this month!!
November – We lost yet another sweetheart to Rett Syndrome…Emma. I just realized I never blogged about losing Emma. Maybe because I just couldn’t. Beth was one of those moms that I just clicked with….we chatted on facebook weekly, sometimes daily. I was able to attend the funeral – it was by far the hardest thing I have ever had to do in my life. It is a reminder of the reality of Rett Syndrome. We are not promised another year, another day, another hour even. It was a reminder of why I am a part of Girl Power 2 Cure and why I fight each day to raise awareness, to raise funds, all to END Rett Syndrome so that more mommies do not have to bury their baby girls.
December – I almost for got – WE GOT AN ADAPTED VAN last month too!! (No, we did not win it, but we were able to get a great deal on it) and it is LIFE CHANGING. It is just so much easier to get out and about with Brooklyn!
2012 – We had some love/hate moments like with any year but when I look back I can reflect on the smiles along with the sadness. Life is hard, it is a journey – we have to take the good with the bad. We can only hope that the giggles outweigh the grief at the end of the day..and you know what….most days they do. I pray…I hope that 2013 brings many blessings to each of you reading this post. Until tomorrow – thank you for another year of love and support for me and the kiddos!!!