(Tacy, 12 years old, at Christmas time last month)
If you have been following my blog for a while, you know that my oldest daughter Tacy has special needs. As you might guess, this is such a special, different, and sometimes difficult part of our lives. We didn't know about Tacy's special needs when she was born and right now her main diagnoses are Hypotonic Cerebral Palsy and Autism. We don't know the cause and my guess is that we most likely will never know.
Raising a child with needs like Tacy isn't something you plan for and our lives are filled everyday with things like medications, care plans, nutritional supplements, therapy, special education, leg braces, appointments, Medical Assistance, diapers, and more. Tacy cognitively is about 2 years old - we see areas where she can do more, but globally that is where she is. She is considered nonverbal and we can tell that she can understand more than she can express.
I don't want you to feel sorry for us, I just want to share what is the reality of what is our everyday.
What I do want is to do something. Not just for us, but also for other families that have children with special needs. It takes a village to raise a child, and I can tell you that our "village" is huge. The network of people that we have to support Tacy and our family is one of the most important things that I have found to keep us afloat. I think that is one of the most important pieces of having a child with special needs (no matter how mild or severe that might be) is to get yourself and your family involved in the village of people that are out there and to have the support.
We have PCA's for Tacy that come work at the house so that Chad and I can have a break, have time for each other, and be able to give time to our other daughter Hana. Tacy has a whole special education team at school (junior high this year!) We have been going to pediatric rehabilitation for physical, occupational, and speech therapy twice a week since before Tacy was a year old. I am in a network of parents and am involved with different committees and organizations that benefit families and children with special needs. We are supported by the state of Minnesota on a waiver that helps us pay for things that regular insurance won't cover.
Some people ask me how I/we do it. I do it because I am Tacy's mom and I want the very best for hear and the potential of her future. If it were your child, you could and would do it too.
One organization that has been a part of our lives since Tacy was about a year old is United Cerebral Palsy of Central Minnesota. United Cerebral Palsy is a national organization that support people with Cerebral Palsy and other disabilities too. They have helped us pay for equipment/therapy that Tacy has needed that insurance won't cover, like headphones for her therapeutic listening program and horseback riding therapy. They sponsor community events that our family has attended like a bowling league and Halloween parties. UCP of Central Minnesota is sponsoring an arts program for people with disabilities that I personally have been helping plan and run.
Here's the do something part: this is our eighth year participating in the Stuck-in-motion bike race to raise money for United Cerebral Palsy of Central Minnesota. Last year, we raised over $7100 for Team Tacy and this year, we are hoping to match or even beat that total! Donating to this cause help build that village for a child and family like ours - we still get support from UCP of Central Minnesota today.
We have to have a little fun - and it is fun for our family and friends to come together to do something for this cause that is so important in our lives. We can't change Tacy's special needs, but we can her support her to be the best that she can be. It means so much to me that so many have dedicated their time and money to this cause in the years that we have participated.
Here's a video from the race last year:
I can't wait for to share photos and video from this years race - one of Tacy's favorite thing to do is watch this race video over and over on our iPad. We are silly and goofy, Tacy loves it, and we do it all for her.
If you would like to make a donation to Team Tacy, you can go to our team page here and then choose me, Heather Nichols, from the team roster. We race on Saturday, January 26!
Whether you send a donation, or just cheer us on for the race and/or everyday too, thank you so much. And thank you for letting me share something so, so close to my heart. It is my everyday and as hard as it can sometimes be, I wouldn't change it.