Isolation. Social Distancing. Stockpiling. These current buzzwords are not new concepts for many special needs families including ours. On March 12, Kirk and I, along with our 16 year-old twin girls, Annie and Audrey (who both have disabilities), and my mom, arrived home from a 3 week vacation in Florida. Lily and Russ had already flown home 12 days prior, as they had to return to college. It had been an incredible time of relaxation with Kirk’s parents and new friends made too. After a good night’s sleep, Kirk hit the grocery store for the essentials. We knew toilet paper was low at home but found the store shelves emptied. The COVID-19 pandemic was escalating and we could feel it. Although not overly worried, I shared our TP dilemma on Facebook and were barraged with various solutions. A kind friend quickly shared her toilet paper.
Typically, our home is well prepared, since there are times we are simply stuck at home, isolated and often in crisis. I buy Audrey’s baby cereal by the case when it’s on sale, knowing I should try to vary the flavours and it’s the only food she eats. There must always be enough on hand. We constantly take stock of medications, call the pharmacist, arrange pick-ups and adjust the meds lists as changes occur due to the constantly changing nature of epilepsy that both of our girls suffer from. The best adult sized diapers are ordered from our pharmacy, which generously gives me the sale price anytime. Stockpiling and emergency preparedness are not new for us, they are everyday life.
Like any family, there are times when we dream about vacations and simpler outings. Sometimes they happen without incident, while other times the plans are suddenly changed because of seizures, illness, anxiety or other physical ailments that take centre stage. Some Sundays we stay home, we tune into online church, we get on each other’s nerves and usually end up bonding as a family. Our older, typical (young adult) kids are flexible and have learned to go with the flow. They have become others-centred and resilient. I am proud of who they are and the way they consider others in day to day life. People don’t always know how to help or what to say and so, they become distant. I suspect this has affected friendships along the way. Social distancing happens – naturally or on purpose. Grudges aren’t held but losses are grieved and hearts hurt. Personally, I do my best not to read too much into the friendship changes and to let go of situations beyond my control. I generally have, “bigger fish to fry” anyway. I cast my cares on Jesus once again, knowing He will carry it and help me to let go and carry on. I press into Him so I can press on in life. I encourage Lily and Russ to do the same.
Our family understands that true connection doesn’t rely on being physically present because sometimes we just can’t be. Annie and Audrey who also have autism and anxiety, have taught us much about connection, without physical touch; a hard lesson for this mom who just wants to hold them close when they hurt. We have harnessed technology and know the life-change it has brought when we cannot get out or need help with escalating scenarios. A video on an iPhone can be the catalyst needed for successful entry into a new place or provide the calming for a stressed mind. Transitions are never easy and creativity and quick thinking are often Holy Spirit given. I am thankful for that. I have discovered that connecting with Jesus Himself is more life-bringing than any social connection I can imagine or wish for. I suspect my twins grasp this concept far better than I know. Still, we are grateful for online churches when face to face isn’t possible.
Ideas that the disability ministry community has been trying to teach for so long, myself included, the whole world is now learning at super speed during a super stop. Isolation, social distancing and stockpiling – there is nothing new under the sun. (Ecclesiastes 1:9)
Our family is not sick but we are in isolation in our home for 14 days (until March 26). While in isolation, we will be unpacking, cleaning, disinfecting, playing games, watching movies/shows/sermons, caring for Annie & Audrey, listening and watching the news, walking, shooting hoops outside in the cold, and PRAYING as a family. Firstly, for Kirk’s Uncle Dwight, who is just beginning his battle with cancer and for many others whose names we have added to our prayer list. We will fight alongside with prayer, as a family. If you need to be prayed for, send us your list of prayer requests too. God is bigger than any disease, even when healing doesn’t come in the way we hope. We do what we can in the midst of our own difficulties which sometimes seems so small but there is nothing small about prayer and virtual online connection. For some, it’s a lifeline.
Troubleshooting seizures and anxiety is very much our current reality, as both of these with Tuberous Sclerosis, never fully subside. In the midst of isolation, social distancing, and stockpiling, be encouraged. God is still on the move and still on the throne. He is not isolated, distant or unprepared. This recent global crisis hasn’t taken Him by surprise. He is our peace, comforter, provider, and our guide. “And do not forget to do good and to share with others, for with such sacrifices God is pleased.” Hebrews 13:16 NIV