You Don't Know What You Don't Know

November 4, 2017

One of the top "issues" special needs parents have, especially moms, is a sense of isolation.  Even in this overly connected cyber world we live in, with countless Facebook support groups, we still feel isolated.  Why?  Because cyber connection just isn't the same as human connection.  We get buried in our daily lives, the needs of our children (all of them), maintaining a home, sometimes a marriage, sometimes work outside the home too.  We're busy, but isolated. 

 

With all of this going on, all of these people in our lives, how can we possibly feel "isolated"?   We get on what we think is "cruise control", but what it really amounts to is chronically high levels of incredibly toxic stress.  We're in a state of "constant ON", and after a while, we forget not only that we should rest, but HOW to rest if we ever got the chance. 

 

Why does this stress feel so toxic?  Because we rarely have the opportunity for true, restorative, recuperative rest.  I'm not talking about a glass of wine, I mean real sleep.  Every parent is different, every family dynamic is different, the stresses of finances, health, school, marriage, did I mention finances?  All of these factors impact us in various ways.  Comparatively speaking, from the outside looking in, my life probably doesn't seem like I should be crashing the way I am.   Other families likely have far more stress than I do. 

 

 

When moms don't put themselves first, when we don't take proactive care of ourselves, when we're not EMOTIONALLY CONNECTED, our ability to serve and care for our families is greatly diminished.  That which is just a mole hill feels like this enormous mountain of never-ending, suffocating landslide.  Sometimes I feel like Lois Lane in her stalled-out car in the California desert, but it's not because I can't handle it, it's because I'm too depleted to handle it APPROPRIATELY. 

 

  

This perception is a direct result of lack of adequate, recuperative sleep.  A Mother's Rest was created with this exact physiological need in mind.  Our typical respite retreats are three days instead of just the weekend.  Two nights just isn't enough.  That one extra day seems to be a tipping point when decompression can actually be achieved.  You have to have enough time for your adrenaline to return to normal levels for your trip to actually be restful.  Yet it isn't just the time away, it's who you are with that adds so much to the health value of your retreat.  Having extended time away with other moms who truly understand your fatigue makes all the difference.  Conversation, hugs, laughter, tears....they are all critical parts of the healing process....a cathartic release necessary to cleaning your slate and stepping forward.  

 

If any of you have been following along in our Facebook group and public page, you know that a number of AMR moms and families have just returned from the 2017 Buddy Cruise.  The Buddy Cruise is an educational conference at sea, originally designed for families of  people with varying disabilities to cruise together.   This year, we sailed from Port Canaveral, FL to the Bahamas and back.  This was my 4th Buddy Cruise, but my first without my son, Reece.  Reece is 15 now.  He has Down syndrome, ADHD, and SPD.   

 

 

 

This year's cruise was four nights.  AMR brought twelve moms with us!  Four went solo and eight brought their children.  An amazing time was had by all, but those of us who were there solo had a completely different experience.  We so enjoyed being surrounded and engaged with families like our own!  We made friends with other disabled individuals, children and adults alike! Yet we greatly benefited from the freedom to sleep, shower, dress, eat, talk, visit, dance, lounge, swim without the responsibility of anyone else. 

 

 

 

 

We enjoyed breakfast and dinner together every night, 80's night, formal night, the hot tub, the beach, and all the other activities that Buddy Cruise plans!

 

 

At the end of the trip, the tears came fast and hard, but not because we had to go home.  We definitely could have used a few more days, but the tears came with the sudden realization of how disconnected and isolated we really were in our daily lives and even in our family relationships.  This gift of solo respite was a blessing few of us can ever adequately put into words.  We won't "miss" each other, we have Facebook and can stay in touch that way until next time.  But the level of connection, the friendships, the kindnesses, the laughter, the dance-partners-for-life that we made in 4 short days could never be achieved in a cyber chat room alone. 

 

 

 

On a cruise, you have endless food, people cleaning and cooking for you, someplace to GO!  Someplace to dress up for, some place to feel pretty, smile, laugh out loud, dance until your knees can't take anymore.  You have a place for quiet and a place for busy.  And even though you're here with a "group", it is completely freestyle, and you can come and go as you please without anyone being offended or blinking an eye.  The freedom from drama is unbelievably refreshing.

 

Buddy Cruise IS designed as a family trip, and it is an incredible learning and social opportunity for all of our kids!  Reece has really enjoyed his time on board and learned so much!  And truly, there are lots of parents who just aren't feeling the same stress others are, and prefer to bring their kids.  By all means, DO! They will make lifetime friends and count down the days until the next Buddy Cruise. 

 

 

 

I missed Reece at first, more sad that he wasn't going to get to participate this year, but by Monday night, I was like OMG, this is amazing to just be ME.  Not Mom, just Andrea.  Just for a little while.  I don't "deserve" this, I need it and I'm worth it.  Taking care of myself is good for the rest of my family too.  Today I'm dragging from the air travel back, but I'm already looking forward to the next trip, and keeping *healthy in that hope*. 

 

From one of our moms: "It's worth it ladies! You'll laugh. You'll giggle yourself breathless. You'll dance. You'll cry. You'll catch yourself in odd moments where you realize you're all alone...and nobody is calling for you; and you can have a coffee and sit down and watch the beautiful water FOR AS LONG AS YOU WANT. You'll actually get to run to the bathroom alone. You can make an ice cream cone and not have to fix one for everyone or hide a stash. You have other moms there who GET IT. You will get to have wine or coffee or tea with them and just be the woman you are and have been all along, but haven't been able to express because you're too busy being a caretaker...a mom...an advocate...a wife...a fighter. You'll decompress. It's 100% worth it."

 

 

JOIN US in 2018 for Buddy Cruise which sails out of Galveston, TX.  Nov 4-11.  if you're a first time cruiser, I encourage you to come on your own!  Enjoy the experience, learn more about it, and plan to bring your kids next time!

 

Do you know a special needs mom or DAD who could really use this respite trip?  DONATE for their deposit and make this trip a reality for them!  Gift certificates are available and perfect for the holidays! 

 

 

Would you like to be a PERSONAL, CORPORATE OR FOUNDATION SPONSOR for AMR parents to attend the Buddy Cruise?  Want to help with the cost of promotional materials, gifts, t-shirts, and our own financial support of the Buddy Cruise Foundation?  Contact me for more info on our funding and grant needs!  This is a tax deductible donation for you, and perfect for year-end. 

 

 

 

 

 

 

 

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