Days like today scare me. It’s not the treacherous roads or the uneasy steps on the ice to let the dog out, but the terrifying reality of Mabry’s future.
These days are HARD…very very HARD!
Mabry doesn’t understand that the ice on the roads won’t allow us to get in the car and go to breakfast. She doesn’t know why we can’t go out just to look for boats, dump trucks, police cars and 4 wheelers. Her frustration level is through the roof because of her lack of full comprehension and communication.
Here’s the good news for the day…the snow will melt by 2:00 today and we will be able to do those things.
Here’s the bad news. This frustration level isn’t just on snow days. It’s on summer days when we have no plans, it’s on Sundays when John and I want to take a nap, and it’s on days when it’s raining and she can’t go ride her horse at her scheduled time. These days may not go away. We don’t know at what level Mabry will reach mentally. Will the frustration ever cease? Will her life be more about frustration than shear happiness?
Mabry is a happy, loving, funny, caring and an incredibly intuitive child. She can bring joy to those who are sad and make even the most hardened person smile. My prayer for her is that these qualities in her will continue to shine through. I pray that her aggressive behaviors, fits of rage and times of sadness would diminish and not define her. The reality is when Mabry has something “to do” she is happy. What happens when we run out of things for her “to do?” What happens when the school year ends for good? When those long summer days are not made a little bit easier with the remembrance that school starts again in August. What happens when Mabry is no longer a special needs child…but a special needs adult?
The harsh reality is that there are not a lot of options for special needs adults. People are quick to help children, but seem to forget that these children grow up. These children don’t always leave for college and get married and start their new lives separate from their parents. God created us all to live in community…we aren’t suppose to go through this life alone. Why should it be any different for our special needs adults?
This brings us back to my fear. I don’t want Mabry to sit in her room and wait for us to get home from the day. I want her to have activities that are fulfilling, fun and bring her joy. I want her to have friends that she loves to hang out with, eat meals with and share jokes. I want her to have a community that she can work along side, values her as an individual and helps her learn what her gifts are and how to use them to give back. We are planning for Mabry to live with us for the rest of her life…. but what if that isn’t what Mabry wants?
Where is this special place?
Where is a place that has quality housing with well-paid, educated and kind employees? Where is a place that will provide a structured learning environment? Where is a place that will accept people of all disabilities…. even the hard ones? Where is a place that provides rest for the parents and siblings of special needs adults? Where is a place that will allow my daughter to feel like she has value and worth in her community?
This place will exist. Blue Sky Therapeutic Riding and Respite is passionate about creating such a place. Do we know the exact steps it takes to create this place? No. Do we know that we are dedicated to finding out what the answers are? YES!
Sometimes I let days like today create fear. Today I am going to choose joy and hope rather than fear. I’m becoming even more determined and dedicated to the job of creating this place for my daughter. Mabry deserves this place, just as everyone deserves a place to belong and thrive.