Monday, February 9, 2015

Just 11 days left until SDR!

I seriously can't believe how fast time is flying. He is having selective dorsal rhizotomy in just 12 days. I never thought I would be ready for this surgery and here it is less than 2 weeks away. I got emotional for the first time over the weekend. Surgeries will never be easy no matter his age, no matter how many we have been through and no matter what the outcome is supposed to be. I think I am much stronger than I was 11 years ago when he had his first surgery. My friends used to always tell me how strong I was. I never saw it, I never understood what the meant. I didn't feel strong. I felt like I was falling apart and learning to live this new life with a disabled child. As I look back and see how far we have all come and how much we have all been through I realize I was strong, strong enough at least to keep it together and to make all those difficult decisions I had to make. I have always done everything I could for Brendan. I have been the one to make all the major decisions and researched different procedures and surgeries countless times and got us to where we are today. I have taken him to NJ for PERCS because I felt he was the best Dr. for that surgery. Now we are off to St. Louis because we all know Dr. Park is the best Dr. for this surgery. I will never stop trying to do what is best for him even if the decision is so difficult for me.

This surgery could be life changing and as a family we are in it together. This surgery is causing major upheaval in our family. We have 5 kids so that alone makes everything more difficult. We own our own business so again it is difficult to just close down and stop our lives but we agree it could be worth it. Brendan's father, Derek and I will all be there for his surgery. Derek has to leave the day after surgery to take care of the other kids who will be watched by my mom and my mother in law over the 5 days. His father is headed home the day after he gets discharged and I am staying for an additional two weeks with our recent addition, Lily, so Brendan can receive intense physical therapy. My mom is flying out to help out with the baby and we are all flying home on the dreaded Friday the 13th! I am not overly superstitious, obviously since I still booked the flight, but it doesn't sit all that well with me. I am definitely not thrilled with the idea but hey we gotta get home after a long 22 days.

Afterwards he needs therapy for 4-5 times per week for at least 6 months! Yup try fitting that into our schedule! We will figure it out and we all have to work together.

I am having a bit of mommy guilt leaving my other kids for 3 weeks. My toddler with with me 24/7. He comes to work with us every day so I am really sad about leaving him. He is such a character too. He always keeps us smiling and laughing. I will miss him so much. We will all be texting, video chatting and calling each other so somehow we will all get through it. In the long scheme of things it is only 3 weeks out of our lives. We can all get through it and I know that we will. After this surgery I know we will have done everything we could for Brendan to live his life to the fullest. This surgery could just make him more comfortable or become a miracle. We will find out over the next few years. Wish us luck!

I created a facebook page for Brendan that will be updated daily during our St. Louis trip.

www.facebook.com/BrendansSDRJourney2015


2 comments:

April said...

I've caught up on his story. What a journey he has been on already!

brat pungoo said...

thank you for sharing :)
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