I apologize for not posting yesterday but I had a day
Off I mean out…..well I was “off” too. Kristin and I took off for Southbend. Unfortunately our game tickets fell through but Notre Dame on game day is always a fun place to be. It is a HUGE bonus that our aunt lives there too – she is a rector for one of the dorms so we got to visit with her too (and crash for free!)
I know this MIGHT not seem like an awareness post but honest it is. Because of Rett Syndrome and Down Syndrome a day like this does not happen all that often. There is a ton of support I need to set up at home for the kids. I need to make blends, update med lists, essential oil lists, jot down the daily routine, and the list goes on and on. I am TRULY BLESSED that Jon is super helpful with the kiddos but he needs help (and also works a TON) which is where my mom and dad come in too! Mom comes to stay at the house to help Jon out and dad checks on everyone, plays, and makes necessary food runs lol. I could not take a day away like this without them.
My sister is the best for setting this all up. It was so great to have an entire day of girl time with Kristin – so much laughing, I love her so much! I have to say I feel guilty though without how much I enjoyed the day. I love love love love love my kiddos but I NEED a day away every so often. It was 24 hours of no responsibility: no med dosing, food blending, diaper changing, bath giving, kid dressing, muscle stretching, ABA stressing, meltdown averting………ok you get the idea. At one point I just looked at her and said “you have NO IDEA how much I love just walking here, with you, sun on our faces, wind through our hair, doing NOTHING.”
You see when you have a special needs kiddo every outing is strategically planned out – you have to pack as if you are traveling for a weekend away – sometimes I simply just choose to stay at home because I just do not have the energy or help – lately it has become nearly impossible for me to go out with both kids. Pushing Brooklyn’s wheelchair and keeping track of Boston who is becoming “a runner” is next to impossible.
SO yes – yesterday was AMAZING. Just what I needed. THANK you Kristin for the amazing day out. THANK you mom, dad, and Jon for taking excellent care of the kids here at home. GO IRISH!