Our eldest daughter, Jessica, has a rare chromosome abnormality, uses a wheelchair, and needs total assistance with all daily life skills. Jess was born in 1982 and within the year we knew that there were many developmental issues. Jess just turned 38 years old and is a joy to all who know her and love her!
So, what do you do in the 1980’s to meet others going through similar circumstances when your child has a rare diagnosis? How did I find other families without Facebook, Twitter, Websites, and Texting? It was through hard copy research, library visits and asking doctors and organizations for contacts.
Today, as I am cleaning out drawers and I came upon letter after letter from other families going through a similar journey. These letters were replies to my attempts to reach out to other families. I received long legal pages which included hard copy photos. One writer said she was sorry about sloppy typing and she needed a new typewriter. Another responded to my letter stating she was glad she was not the only one who sits down and writes even though they are so tired they cannot spell (this was before spell check existed, our spell check was the hard copy dictionary). The same mom said she was sorry that the photos weren’t good because every time she takes a photo they are overexposed (Yes, this was back in the last century when we used film and waited to see the final product; before thousands of iPhone photos existed!) The letters were so descriptive, so filled with love of their children, that I really had the sense that I knew the family and their child; we connected.
Today things are so different – we write in code – OMG! TTYL!NVM, BTW Etc., and our texts are brief and numerous but are they meaningful?
I have found that since the Covid-19 Stay at Home was put in place that I am communicating at a deeper level than before. Zoom, Facetime are ways of face-to-face talking while keeping a distance. Alone yet together. Seeing another person’s reaction, looking into their eyes and acknowledging our harmony.
My grandson and I recently wrote real letters to my daughter and her group home housemates. It’s fun to get mail, everyone should try it! I hope when we are all able to be together that one change we can embrace is our ability to connect more profoundly. I will remind myself to stop being so busy that I cannot chat on the phone or spend quality time with a friend. What will you do differently when we are able to be resume a “new” normal life?
Vikie, you and your family are wonderful role models for anyone with a developmentally handicapped child. Your dedication, devotion and outpouring of love are wonderful examples for all of us to follow both in our personal and professional life. Best to all the Rubin family.
WOW! That was a great note to see first thing in the morning. I truly appreciate your comment and you taking the time to read the blog and reply. I know you have worked with thousands of patients and families, which makes your comment even more meaningful to me. I hope you and your family are keeping safe and sane and look forward one day to seengyou in Wegmans or federation – wishing you all the best – V
You always inspire me Vickie with your love , faith and positive outlook. Glad to know you!
Karen, Thank you for your beautiful note – It made my day! And during this time of isolation that is a gift – I am also glad to know you and hope to see you in-person one day SOON! 🙂
Vicki,
What a beautiful and touching story. I love the pictures! Keep writing- it is therapy.
❤️
Thank you Roslyn, I appreciate your comment – xoxox <3
Thanks for sharing Vickie. You are able to write from the heart. Very touching story that helps me better understand Jessica and the value she has brought to your life and that of your family’s. 💓
Thank you, Max! I truly appreciate your beautiful comment
Stay Safe, V
do what I am doing now waiting each day to call you (my Daughter) and my son
Trying from a distance to stay involved with my family, and taking great pride in how you both turned out
I love talking to you everyday and look forward to our laughs and chats. I love you! XOXOX