09 Jun The Economy is Re-Opening. A Look into My Family’s New Reality.
Written By: Brenda Agnew, Client Liaison
As we work our way through Week 11 or 12 or even 13 of this pandemic “shut down,” and as we start to hear about the stages of re-opening, it has forced me to look at how we will approach the world in our new reality. My name is Brenda Agnew, and my son, Maclain, is the light of our lives. He has severe Cerebral Palsy and profound hearing loss due to a condition known as Kernicterus, a brain injury that results from untreated jaundice.
Staying in is Staying Safe
Having a child with a disability, on most days, I am like a coin with two sides. On the one hand, staying in is staying safe and healthy, which has been our priority. We have been rolling with the restrictions and guidelines. Sadly watching as things closed down and fears set in about finances and social isolation but knowing that all these measures were put in place to keep us safe. For our family, this is not a first, and will not be a last. We are used to handwashing, and limiting outings and having hand sanitizer on hand, it is what comes with a child with severe mobility limitations and chronic lung issues. We have been patient with the lockdown and abided by the rules doing our part also to flatten the curve. We have figured out how to maneuver through distance learning, make the best of being stuck inside, finding new ways to keep busy and entertained, which for a family like ours who is in perpetual motion has been so hard. But again, we know it has been so important, and we have kept our whining to a minimum. This side of the coin is also worried about how we will start venturing out into the world. When, how and where? We don’t want to undo all that we have done, and we don’t want to risk being exposed to the virus while numbers are going down sometimes; other days, they are going up. Opening up the world doesn’t change the fact that Maclain is still at risk. And if one of us gets this virus, we are not any good to him.
Living Life Again
But then the other side of the coin rears its head, or tail, depending on which side I guess, and we start to get excited about rushing out to start living life again. The desire to want to see people and go places and do things. I begin to think about what the kids are missing out on this summer, and summertime for us takes a lot of planning and foresight. And I mean A LOT. We almost start planning for summertime activities for the next summer practically as soon as the current summer is over. We had a pretty fantastic summer planned between a trip to Scotland to visit family, a baseball tournament in Nashville, and the ever-amazing sleepover camp for Maclain for ten days. The camp gives us a break and gives him typical summertime camp experiences and memories. That has all been cancelled, and we understand why, but it doesn’t erase the disappointment. And so when talk starts about opening up, we begin to jump up and think about what adventures we can book to replace the ones we have had cancelled. How do I fill up a whole summer with two active kids, with no baseball, no camps, no travel? Maclain LIVES for adventure and experiences. These help to fill other voids in his life, and I am feeling very acutely aware of the negative impact this will have on him if we can’t find things to do this summer.
Will the Coin Flip Again?
Maclain can’t jump on his bike and ride to the ravine with friends or to the store to get a slushie. He can’t go house to house to knock on doors and then head out to play baseball at the park. He can’t even play basketball on his own in our driveway to whittle away a few hours in the fresh air. My family, having a child with a disability, we need a break and something to look forward to, which is why we are getting excited by life on the outside starting to open up. That is until the coin flips again. The other side of the coin, which still says we have to be cautious and careful and decide what makes sense, and how much we expose Maclain to things. We get caught back in the cycle, and back to the uncertainty and back to planning for the unknown. But we have been there before, and we will be there again, this is life with Maclain, and we will figure it out like we always do. I do hope, though, that my next Brenda’s corner will be me sharing some good news about a summer adventure of some sort!
As a former client, Brenda acts as Gluckstein Lawyers Client Liaison to support and advise our clients and their families throughout their Medical Malpractice and Birth Injury case. She tirelessly advocates for better systems and programs for children with special needs.
Thank you for joining us for this edition of Brenda’s Corner. Please continue to follow her family journey for advice, insights and education related to parenting and empowering children of all abilities. Any questions? Contact Brenda directly at [email protected].