Written by Maggie Miller, PRISMS Vice President and Co-Founder
To our PRISMS Parents, Families and Caregivers,
These past few months have turned most of our lives into an upside-down spiral, with little ability to control much of anything, apart from Smith-Magenis syndrome. We are all living through this historic pandemic; trying to get through each day with some amount of grace and joy, while being told “we are all in this together.” Hmm. I’m guessing whoever came up with that tagline did not have to take care of a child with SMS. I’m missing the “together” piece.
On any typical non-COVID-19 day while caring for our child with SMS, we face incredible hardships that sometimes defy description. Our dear children, as wonderful as they are, present significant challenges and leave us having to figure out so much on our own. During these past months, we have seen an enormous escalation in behaviors and a further disruption of their sleep, (not that either challenge needed any prompting). Our support system has been taken away. No school, no teachers or classroom aides, no programs, no respite caregivers or extended family available to help with the burdens of caring for our child. All of these supports were gone in an instant. There was no time to prep or make new plans. No “plan B or C.” Routine was just erased and we were left with trying to find new ways to cope and strategize and ultimately just make it through the day.
A giant chasm of despair opened up and swallowed us whole. Our children were not made for this perpetual time of isolation, (as no child or adult is equipped). They require the familiarity of a daily routine supported by professionals and caregivers who have come to know and love them. We had no way to describe to them what was happening that was sufficient for their understanding and even with subsequent “plans D and E” eventually in place, we felt that we may have failed. And then we repeated those same steps the next day with same results. It’s been awful, terrible, disheartening, depressing, frustrating, profound and exhausting. We could add many more descriptors and those would not be enough to define this experience.
But what good has come from this time of isolation? There has been some. That goodness started with our community…YOU. We have seen and experienced the endless amount of support you have given one another on our social media pages. You have encouraged one another and poured out your hearts only to receive a kind word and a virtual dose of love. You have felt safe enough to share your darkest moments and know that you will be greeted with respect and understanding and never judgement or shame. SMS has taught us well in some respects. It has stretched our hearts to make room to absorb your pain and strengthened our ability to empathize and not criticize. We get it and we’ve “got you.”
Give us your toughest moments and we will love you back. That is OUR community.
We have also laughed with each other during this time. Those priceless, funny SMS moments still rise up and our children surprise us every day and they promise us a hearty laugh or sweet smile. You have shared those joyous times with us and we are encouraged and inspired. You have helped us to forget how difficult our day may have been as we relish in the delights of your child’s happy day. Thank you for those moments.
Thank you, dear community for taking care of each other. We need you. And we want you to know that you are highly valued. You’ve helped us heal. You are marvelous. You have done well.