When considering our WOW (Word of the Week), which is SUPPORT, I was thinking about the times I feel “at a loss” to be there for someone. Words sometimes feel trite, and when you haven’t walked in someone’s footsteps to really understand what they need, it can feel like you’re grasping at straws.
I reached out to two friends this week and asked them to share how they best receive support through the challenges they particularly face; challenges that are common in this world, but somewhat foreign to me personally.
My first feature is on my friend Mary Carver, who is one of the most impressive individuals I know. She is the mom of a special needs young man and she has spent more time in doctors’ offices and hospital rooms that a mom should ever have to…but she never fails to have a smile, is full of gratitude and says that while (of course) she would have hoped for David to have a life like other boys without his challenges, he has been a huge blessing to her family and a tool for growth in her life and in the life of her marriage to husband Brad.
Brad and Mary were high school sweethearts and have the vibe of a couple that is both in love as well as best friends. At age 30, she welcomed daughter Emily, now a beautiful, smart as a whip young lady in college. David was born three years later, followed by the athletic and adorable Caitlyn two years later. Though much of what is written here is about David, we didn’t want to leave his sisters out because having a sibling with special needs requires unique strength and selflessness for the other kids in the family, too.
Mary sent me an e-mail on the topic of support and what it means to her. Here’s her story in her words…
David was born with congenital Cytomegalovirus (cCMV). I carried small when I was pregnant with him, had a few complications along the way, but was not prepared to hear those words when he was born. I had never heard of CMV. Do me a favor and visit www.STOPCMV.org and educate yourself.
We were told to wait and see.
Receiving support is hard, especially if you live in a world where you want to control as many things as you can because you can’t control the one thing you want to.
David just turned 18, but he’ll always be a baby based on his abilities for self care and independence. Having a special needs child causes me to look as well as interact in the world differently.
My family is different. We have needs that get met individually, as a couple, and as a family…not always at the same time!
Stages became permanent issues rather than temporary. For instance, I would love to know how many diapers I’ve changed over 18 years. NOT!
You may be wondering, “Who is David?” Whether you knew him as he was as a child or as he is as an 18-year-old, he’s basically the same in many ways. He loves to laugh and smile and play ‘made you look’ eye gaze games. He’s non-verbal. He’s not ambulatory. He’s spastic quadriplegic. He’s incontinent. He’s smart. He’s totally dependent on others for everything, BUT he knows what he wants when he wants it and knows how to get it. He has this knack of gagging, which gets me running to him regardless of what I’m in the midst of doing.
His main form of entertainment is watching the TV. He loves animal shows, sport shows, cartoons, COP shows – a typical teenager in many ways, but yet not. He likes learning about the weather. He uses a computer switch next to his head to interact at school to read along with a computer and he takes tests. He knows his classmates, he knows his family, he notices when I get a haircut. He is easily distracted.
‘Pick up your head’ used to be common verbiage in the household and car rides for many years. Thankfully David’s neck muscles have strengthened over the years so this is something very rarely heard mentioned now. Vacations become a chore because of everything that has to be transported from the house just to feed, change, and entertain one person.
The family dynamic is stretched – affecting the siblings as well as the parents, some of this for the good and some of it for the bad.
For me, the best type of support has been from someone who can understand what you are going through. Empathy is good and necessary, but when someone knows because they KNOW, it makes all the difference in the world. Finding a support group to identify with has been one of the sanest things I could have done for myself; I just wish I had done it sooner! For my son’s condition, I have a Facebook connection with Moms all over the world who have children born with the same virus as David’s. In addition, a few years ago I reached out to some of the Moms of my son’s special needs classroom and invited them out for wine and talk. We’ve been drinking, eating and talking on a monthly basis since then…but mostly sharing the common challenges of:
- Diaper changing a teenager and the ability to talk about pee and poop over dinner conversation
- G-tube feedings gone awry
- Unexpected hospital stays
- Back surgeries that put you in a hospital for a few weeks
- Going to work when you’ve been up most of the night trying to figure out what’s wrong with your kid when they cannot tell you anything besides crying
- Planning for a future for your child
- Being there for a friend whose son had passed away a few hours prior…
It’s therapeutic to talk to others and just to be there for someone.
Knowing you’re not alone in a world that keeps moving forward while you feel stuck in the present trying not to think of the future is reassuring.
The understanding of my husband and all he does to fill in the blanks of what I don’t do is beyond measure the best and most wonderful support.
Receiving support from outside the family requires an extra step of trust to let another soul into your life – the good, the bad and the ugly.
It’s much easier to leave everyone at arm’s length and only share bits and pieces of your life. The daily responsibilities of life get in the way.
And as we age and go through our fun menopause years (lol), personalities change to make this a whole different ball game sometimes! Unfortunately, for me, it’s easier to interact on social networks. This is an area I need to work on obviously!
So when thinking about the word SUPPORT, here’s what I came up with from my perspective:
- S=silliness and sunshine
- U=understanding the no-sleep-for-days-but-still-need-to-behave-like-a-human mentality
- P=patience for yourself, others and God
- P=patience for yourself, others and God (worth repeating!)
- O=others have it worse perspective
- R=respect for the reality of potential and the reality of life
- T=trusting others to relieve the burden when it’s just too much to bear alone
Mary, first of all THANK YOU for sharing a glimpse into the life of a parent with a special needs child. We can learn much from your strength of spirit, love and overall approach to life.
Here’s one of the biggest takeaways for me from Mary’s story – and I hope for many of the fabulous folks out there who read this today: Seek out a support system.
Mary’s burden became easier to bear when she reached out and found a group of people walking in similar footsteps. If you are a budding writer and want to be published, find others who have gone before you, who can mentor and support your dream. If you’re clean and sober, seek out others who can help you be strong when your resolve weakens.
We all have our own particular brand of stuff. But we don’t have to journey alone.
The other nugget that impressed me from Mary’s story was that her support group wasn’t just a mechanism to meet HER need. It is an outlet for her to give back in a meaningful way as only someone who is “walking the walk” can. And in giving back, doesn’t it always help to lighten our own hearts?
Finally, her beautiful honesty to say “it’s easier to keep people at arm’s length” is instructive to us all. When you see that mom with a special needs child, make eye contact; extend a warm smile that can penetrate that invisible wall of protection.
Take a moment this week to show your support for a parent of a special needs child. Let them know they are remarkable and to be applauded.
And for you, dear Mary, you never fail to inspire me with how you walk through this life with such grace and cheer. Thank you for sharing your story to help us all be a little more mindful of our blessings and appreciative of those who walk in your shoes.
Please comment with a message of support for Mary or a shout out to a mom of a special needs child that YOU know…