On the heels of MPS Awareness Day I am overwhelmed by the outpouring of support for Cooper, his situation and our journey. MPS Awareness day always sends me reeling. Usually I have a “wear purple!!” campaign and everyone posts photos of themselves wearing purple and wishing Cooper well. Instead of a purple campaign this year I was busy trying to generate interest in the MPS Society virtual gala and bidding on the auction items I had procured. Alas, the Gala and auction were a success and we toasted in celebration with a tiny group of vaxxed friends and family. But the excitement of the gala and MPS Awareness day is just one part of the past week.
This past Monday, the MPS Society organized virtual Hill visits to advocate on behalf of our MPS and ML affected individuals and families. We asked that our representatives and senators support newborn screening legislation and the STAT Act. We also asked our Senators to create a resolution to make May 15 National MPS Awareness Day. Senator Bennet’s office agreed to do the resolution!!! From what I understand, it’ll be presented to the Senate and a press release will be coming this week. HUGE WIN! So excited for a Colorado Senator to step up for us!
Last weekend we were blessed to become a part of the Dawg Nation family. We all had the most wonderful night, being OUT, watching hockey, talking hockey, making new friends and finding old friends. We were surrounded by people lifting us up, celebrating and supporting Cooper. I felt like I was in a dream! We are excited to be involved and pay it forward with Dawg Nation.
Of course these wonderful things happen and all the while sweet Velocity is by Cooper’s side. Everyday since February 14, 2020 she’s here. This expertly trained ball of white floof is part of our family, free of charge, as Cooper’s Service dog. Every week at infusion, she’s there. Every doctor appointment. Everyday I am reminded of the generosity and compassion of the staff, donors and volunteers behind Canine Companions.
I’ve mentioned it before, but I need to mention it again. The hospital staff is our adopted family. They see to it that Cooper has a great day, every infusion day. They’re his hockey team, his biggest supporters, and Velocity’s biggest fans. They are there with an ear to listen and empathic smile as I share our ups and downs. They’re along for this journey with us and they take care of the Tippetts. We leave every week after infusion and although we are relieved to go home after the long day, we look forward to being back with friends again next week. We are forever grateful for the compassionate care and buddies we have at Children’s Hospital Colorado.
School (noun): an institution for educating children. I am overjoyed that school for my kids means so much more. A safe place to be heard and seen. A place with friends, staff and curriculum they enjoy. An extension of home where the adults there are looking out for their wellbeing just as much as we do. Campbell is thriving at her “hockey school”. She’s made great friends, developed leaps and bounds as a hockey player, and is challenged academically. Of course the engineer in me is proud that math is her favorite subject! Cooper’s school continues to lift him up every day. His team is the best. I can’t put it any other way. Modify the bathroom for him? OK. Lower a swing? done. Need a HC accessible switch on the door? done. iPad robot in the classroom so that Cooper can attend school virtually while at infusion and recovering from surgery? sure! (We knew all about online school before COVID.) Special seating for each classroom/lunch situation? done. Speakers in the classroom or a speaker for the teacher so he can hear better? check. Customize the special class outings so he feels a part of the fun? yep. And then we’ll touch base and they’ll suggest ways it needs to be changed so it can better. Of course the IEP and Special Ed department are to thank, but this group goes above and beyond to make sure school is everything it can be for Cooper. I’m constantly full of joy and appreciation for Cooper’s experience as an elementary school kid.
So what am I getting at? My heart is so full. Our bucket is so full. We are living life to the fullest, and we need to give back. I know I do things to give back. But I feel I need to do more. Visit my new page, Extraordinary Organizations. Donate your time, talent or cold hard cash to these organizations that have lifted us up, and do so for countless other families as well. Share their missions. In the meantime, I’m going to carve more time out of my day to be of help where I can.
Thank you for lifting us up. For reading my rants. For sharing our story. My new mission is Dawg Nation’s motto – Play Hard, Play Fair, Give Back.