This morning I felt compelled to write about my “special moms.” It was easy for me to realize why; I have a dinner with them this evening. We are all excited to see how much the new baby in our group has grown. He is the only one that has been born to our circle of approximately, nine moms in the past seven years.
I would be surprised if any of these moms have ever read my blog. They are all too busy; some are just simply surviving at this moment. Just as I needed someone to understand bereavement, so it was with having challenging children.
In this group, we celebrate joy surrounding our children, and we also share how painful it can sometime be. I am the organizer for our group’s monthly dinners. I have always felt these “special moms” appreciated my planning.
I haven’t shared that much with them recently. It’s not that they haven’t asked; it’s just that I have been in a zombie shell for a very, long time.
The background for how I met these moms goes back to May of 2003. At that time, I attended a very special retreat. It was called “Healing the Mother’s Heart Retreat, and it was a one-day overnight for mothers of special needs children. I recently received an email about it happening again this year, and I always recommend this experience to other moms that are struggling with raising a special needs child.
The retreat is held in Montecito, California. It is in the most beautiful and peaceful of places. It is woodsy and quiet, and close to where there is a monastery. I believe the facility is also shared by other organizations that are there for meditation and enlightenment. A therapist, named Diane, runs the retreat. She has a younger son with Fragile X Syndrome, and lost her older son at the age of 17. His name was Andrew, and he was born at 26 weeks with severe cerebral palsy. He had resulting brain damage, and he died of respiratory complications. Diane is a wonderful therapist, and many moms I know have seen or are seeing her.
In 2003, I was in the thick of my advocacy battles. I was in full warrior mode, and living on adrenaline. My partner and mentor, Charlotte, emailed me support on a daily basis. I was not kidding when I share that I have boxes and boxes of files, emails, and reports about my children. All of my writing ability was put in that direction for years.
When I really need some good advice, I know I can always call Char. Like my husband, she didn’t obtain a college degree but she is an amazing success story. Despite her own learning disabilities, she has a terrific job and is doing well. She now lives in Sacramento. I can share that Charlotte is a young widow, and her older son is about the same age as my college-age son. She came into my life to teach me everything she could about how to advocate in life. She still lives by that motto, and I am forever grateful to her.
And so it was in May of 2003, I invited Charlotte, and treated her to go with me to the “Special Mom’s Retreat.”
I decided to bring my guitar; it was one of the very few times I have played in the last thirty years. I stayed up ridiculously late singing with women I had never met. Since most of my songs are from the 70’s, they knew them. I had also brought my extensive, typed songbook with me.
That very first day of introductions was draining and emotional beyond description. Each mother listed her challenges. When it was my turn, I started with Jason, and went from there to my living children. There was not one story there that would not bring another human to tears. We all called it a “sob-fest.”
I won’t write a whole lot more about this retreat right now. When I left with Charlotte on that Sunday, I carried with me a lighter load. I also had a typed sheet with all of the woman’s email addresses and information on it.
We had casually mentioned that it might be nice to have a reunion dinner in a month’s time. I actually found myself inputting the addresses (I had only recently started using a computer). I was proud to figure out how to do a group email. Somehow it just came natural to me to send out a reminder, and follow through with picking a date, restaurant, and time.
That first dinner, we all needed name tags to remember everyone. Charlotte didn’t participate much after that. She had gone to this retreat to keep me company. The retreat was really helpful for mothers coping with a new diagnosis and resulting grief. Charlotte had already gone miles ahead of us in that way; her sons were older already.
It has been almost seven years since that retreat. As far as I know, no other support group such as ours has formed. Through the seven years of getting together we have formed an amazing bond. We have scheduled “get-aways” to help us disengage from our stress every so often. These moms are fellow warriors and the “walking wounded;” coping on a daily basis with struggles that few people could understand. There have certainly been some painful divorces shared at our monthly dinners.
I have one of those pangs again . . .
I am recalling a painful memory from three years ago. My suitcase was all packed and I was ready to go. However, my mother was taken to the hospital that morning. I could not go to this get-away in Desert Hot Springs. How much I missed it! As I sat in the hospital with my mother, I thought of the spa treatments I was looking forward to. One of the other mothers pretended she was me, since I had already paid for those treatments. We were able to laugh about this later.
There has been so much progress made for all of us! There are so many stories I could share about what these mothers have gone through with their children. Patty’s story is extremely heartbreaking. She has a son at home who needs nursing care 24/7 because he was severely brain-damaged at birth.
When I decided my mother needed a private nurse while in the hospital, Patty was very helpful for me. Patty is also a singer in a women’s a capella group. Our group has gone to see her perform; it is simply an inspiring thing to experience.
While my mom was in intensive care in December, there was a day when I trudged into the lobby to sign in at the hospital. I was depressed, exhausted, and running on empty. As I signed my name, I read the name of another woman who I recognized had gone on the mom’s retreat with me seven years earlier! She was not a part of our core group of moms, but that didn’t matter.
I dragged myself to the PICU where it said she was going. I had so little time, and wondered if she would even remember me. At that moment of doubt, Chris, came out to see me. We hugged and hugged. I was able to cry with her.
After that, I stopped by to see her every other day or so. It was very helpful for me. Her son was very, very ill with pneumonia and possibly had resulting brain damage from the loss of oxygen. When he was found, he was “blue.”
All of this was on top of being powerful, large, and non-verbal.
One day when I went to visit her, I found out her son had been discharged. I have not spoken to Chris since this experience. It wasn’t important for me that she didn’t attend our dinners anymore. She was at that retreat and she was a special mom in my heart.
I was glad I took the chance to open up that day and get that hug I needed. We were both so human as we dealt with our ordeals. How much easier it would have been for me to have not gone to knock on the door of PICU – it brought back some traumatic memories for me of Jason!
I have also wondered what a coincidence it was that I arrived around the time she had signed in.
One mom in our group recently had a baby. She knew she was taking a chance of having another disabled child. My hat is off now to this courageous mom and dad. They have a non-verbal son and the resulting stress every day of their lives. We are all holding out breaths that this child will emerge unscathed from autism.
This new baby in our group is named, Jason. Jason means healer, and I would most certainly agree.
On Mar 10, 2010, Chris wrote:
That was amazing!!! Glad to hear your mom made it through!! I know you were scared. How is she doing?
Steph actually came out of all that better verbally. Kinda weird. His behaviors on the other hand have sky rocketed and we are looking at placement for a bit. I am also going through a divorce and would be completely unable to handle Steph by myself. UGGGH!! Life!
Take care and I hope to hear from you soon, Chris
On Mar 10, 2010, Patty wrote:
Thanks so much for sending this link to your wonderful Blog. Thanks also for the mention. Before becoming a “Special Mom,” I was an independent rep for directors, composers, animators, and graphic artists or TV commercials. Caring for Ryan who was an infant at the time and having constant seizures and for my mother dying of cancer became too much for me to handle and still keep my company viable, so I had to close the doors.
Before then, I was a professional dancer/singer. It’s been great to be able to sing again with my group. So when you brought your guitar to our first “Healing a Mother’s Heart” retreat, I thought that this was truly a healing retreat!
It was beautiful when you just started playing and singing. I remember you shared that you hadn’t picked up your guitar for a long time. Some of the mom’s joined in and some just listened. Either way, it was healing and joyous and so much fun.
Take care Judy and thanks again!
On Mar 10, 2010, Diane Smith wrote:
Thank you for sharing your writing with me about the retreat. It is so gratifying to see in writing the impact of these yearly gatherings, which is a labor of love for me. The reverberations of your experience and ways in which you continue to connect in some way with that experience move me in a way that is profound.
I admire your courage in going to those long ago dark places as a way to come into the light.
Diane Simon Smith, MPH, MA, MFT
© Judy Unger and http://www.myjourneysinsight.com 2010. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.