When my son Lincoln was born, he needed to remain in the NICU in a Manhattan hospital for three weeks because he could not swallow. After one week he had been diagnosed with Prader Willi Syndrome and plans were being made for a feeding tube to be put into his stomach. He needed to recover from that surgery and discharge plans were made before he was able to go home.
During those first three weeks I was recovering from an emergency C-section, had two kids under four years old at home and was going back and forth from Montclair to NYC. I was pumping milk all day and all night to feed Lincoln through a nasal tube and was terrified about my family’s future. A perfect recipe for depression and anxiety.
Also during those three weeks and for weeks after, my friends and family came by to help with childcare, help with setting up early intervention and to connect me with other resources and information for his syndrome. I was brought meals for weeks and even a gift certificate to an excellent sushi restaurant when I lamented that “I deprived myself of sushi for nine months of pregnancy and then THIS shit happened?!”.
When there was little else to help me with, I remember one friend going into my linen closet and organizing it, just to do something helpful.
It would be a lovely ending to this little story to say that after those first few weeks and all the help that I received while he was in the NICU everything changed for the better and we lived happily ever after. If you have a child with a disability or know someone who does, you know that this is not how the story ends.
Now, there is no more feeding tube and there is no more pumping but like many other parents of children with disabilities, those physical and often exhausting tasks of the early days have been replaced or added to by other challenges that are often more emotionally charged. Hurtful words, exclusion from social events, conflicts at school, constant advocacy in school’s academic and social matters, financial challenges related to all off the “extras” that go along with having a child with a disability like various therapies (speech, occupational, physical therapy, social skills groups, psychiatric evaluations, etc.), along with all of the other life challenges that come with growing up.
For many, especially at this time of year, having a high school senior does not necessarily mean their child is college bound or even off to employment which can re-trigger the loss of a “typical” trajectory.
That is not to say that families with children with disabilities have it worse off than other types of challenges such as racial discrimination, poverty, and abuse. The disability community has unique challenges but challenges are challenges and they are all relative and matter.
It’s not all bad, though. It’s actually pretty great at times. Many of our children are growing up to exceed our expectations and to be wonderful, loving, engaged, valuable members of our society. We are not the downtrodden parents of yesteryear to be be pitied. We are a strong, capable bunch who get a whole lot done for ourselves and our kids. Because we parents of kids with issues are all in this boat together, we help each other. We have places like The Montclair Friday Group and Cornerstone Montclair where we learn about the help we can get and have a community of people who really get it.
Really “getting it” and appreciating the “extras” that many parents of children with disabilities and other life challenges deal with makes it even more special to know that not only our friends and family care but that our local business community acknowledges this and wants to help.
On Mother’s Day this year, The Montclair Friday Group put out a call for donations of pampering to the local community for an event to pamper moms of kids with disabilities and other life challenges and the community answered with a resounding “YES!”.
“Mothers and givers need to keep their vessels full so that they have something to give” was what Reiki practitioner Angel Kenney of “Angels Hands” said was the reason she wanted to donate her time to the event. One of the moms who received her treatment said that she hadn’t felt so relaxed or calm in a very long time and was so appreciative of how all the donors gave of themselves.
Non-toxic Make up artist Diane Emerich (www.wholemothervillage.com) who performed makeovers said that it was heartwarming to feel the long lost sense of community that we as women and mothers crave so much. The moms said they left feeling beautiful and confident, ready to take on the rest of their day.
“From a mother to a mother, I am more than thrilled to pass on some loving kindness. I love to see the smiles and the peaceful look on their faces after the massage. It’s a wonderful opportunity to witness that kind of peace.” Beth Adleman, a massage therapist who has donated her time for the last two years is looking forward to next year’s event.
One mom explained how there are so few opportunities for moms in our community to feel celebrated and seen for their contributions. She thought it was great to be spoiled for a little while by masseuse Trisha Marcoux of Hands to You Massage Therapy (www.handstoyou.massagetherapy.com) and eat such delicious food from Leap-ei (www.Leap-ei.com) who sponsored the food for the event with Rombiolo bakery in Bloomfield on Broughton Avenue, Lauren Kaiser Design (https://www.facebook.com/Lauren-Kaiser-Design-157021330996478/) with delicious pastries, Jana’s delicious Jams (http://Janasjammy.com) and Middle Eastern delights from Kwik Coffee and Healthy Food (https://www.facebook.com/kwikcoffee/).
Other sponsors of the event included Claudia Sherwood (www.claudiasherwood.com) who led guided mediation, Sara Otazo (https://www.facebook.com/SarahOtazoNutritionandWellness/ ) who offered Bemer treatments, and Linda Baker and Annette Aviles (email@example.com) who provided reiki and sound bowl treatments. Madeline Ferrar (www.MadMatYoga,com) and Richard Mack (www.mindyourbody.us) performed the Trager approach for relaxation left everyone feeling rejuvenated and strong.
In addition to the event, donors contributed items for a raffle. Andrea Silk Massage (www.andreasilk.com), Held Massage, (www.heldmassagetherapy.com), and Samba (www.sambamontcalir.com) know that moms need a little break and gave gift certificates.
We are all in this together and we offer a big thank you to everyone who nurtures others. A belated happy mothers day!
To find out more about the Montclair Friday Group, contact Alma Schneider at firstname.lastname@example.org