I posted the following on facebook tonight.   “Typical EDS family: I slept wrong the other night so SI joint is inflamed. Tomorrow morning Josh goes in for hernia surgery. Jace just got X-rays and his foot is broken and Meli is still dealing with torn ligaments in her ankle. When folks are amazed that we all live together, I’m thinking, “How else would we survive?”. When one is out of commission, the others pitch in. This week it’s a challenge, but because we are a team, it will work.”

I posted ,the above not to complain, but as a little window into our lives.  Ehlers Danlos Syndrome is a genetic connective tissue disorder. You are born with it and have a 50% chance of passing it onto your children.  My family has H-EDS, or hypermobility type. It’s the most painful. Sprains, strains, bones popping out of joint or breaking, internal organs acting up, headaches and even nervous system disorders are typical concerns for those of us who have this disorder.  I wasn’t diagnosed until I was 52. My children were 18 and 20. They had both been emergency room children and I’d already gone through the humiliation of being asked to leave the room while my son was strip searched and interrogated as to whether or not he’d been physically abused at home.  What a thing that was for him! I’d been sent to counselors from the time I was a little girl to treat my behavioral problems (waking up at night in pain) and my need for illness that the doctors couldn’t see. It was, in fact, a relief to find there was a real physical cause for my ailments and that I wasn’t hopeless because I couldn’t make the counseling work.  I had raised my children without any family close by so my husband and I were on our own. Since my husband worked full time, actually, I was on my own. I believed them when they had pain but couldn’t get to the root cause. Doing this on my own when I had my own undiagnosed pain was a challenge.

I posted on Facebook because we so often get surprise and disapproval for living together.  Can you imagine how it might be if we were all in different homes? My daughter would be the only adult in the house taking care of a 13 year old with a broken foot…….. On top of his autism, hormonal, teen angst, and his IBS which is often an EDS condition.  IBS is tough with a broken foot not yet casted! I would be in my house with my back pain taking care of my granddaughter. And my son and daughter in law would be alone dealing with a 19 month old in and post surgery. It’s better that we’re all together. Whoever is able can pitch in and fill the void created by those who are unable.  I can do up several loads of laundry so my daughter in law doesn’t have to while she cares for her son post op. My daughter has other adults to talk with while she cares for her son and he has other adults to lean on while he deals with the pain. And there is big pain happening for him. Broken bones aren’t any less painful than they used to be.  Doctors just no longer treat the pain. Seems barbaric to me, but there you have it.

I belong to and EDS group on Facebook.  Every time I look in on it, I am grateful that my family has this living arrangement.  There are so many out there dealing with this invisible disorder without any family support.  My kids are NOT mooching off of their dad and me. They contribute whatever they have to our living arrangement.  We split the rent 3 ways. Those that work go to work and those who stay home take care of babies. When the work needs to be done, we pitch in wherever we are able at that time.  Sometimes a couple of us have the lion’s share of the responsibility and sometimes it’s others. With EDS one never knows what physical condition the morning will bring. It’s a relief to know that there will be help if help is needed and that we’ll be able to reciprocate at some point.  

There is also emotional support.  Everyone here knows what it’s like to live with this disorder.  When it seems too hard, everyone understands. If one needs to cry, it’s ok to do that.  If one feels joyful to be a 4 instead of a 7 on the pain scale, everyone cheers with him/her.  

My daughter had a persistent cholesteatoma a couple of years back and had three surgeries to remove it before it gave up and stayed gone.  During this time, she developed surgically induced meniere’s disease. Can you imagine having a disease that induces vertigo when you already have a disorder your that causes your connective tissue is too stretchy and your joints are easily subluxed or dislocated and your bones break easily?  She is now applying for disability. What would she do if she had to live on her own? She doesn’t. And, everyone here knows she really can’t work anymore. There is no judgement. We’re willing and able to help her through this period because she’s been there for us before and will be again.  

We’ve found a way to live with this disability and actually thrive a lot of the time.  I wish people could understand that. I wish my children were never judged for living in a multigenerational home when it’s such a great arrangement for all of us.  

When I sit down to supper with my husband, I would like his attention to be on me. When we’re having a conversation, I would like to know that I’ve been heard and I would like to be able to follow what he says. When I have my family around my table, I would like to be family!  I would like there to be the repartee that I experienced as a child around my mother’s table. When my daughter and I are talking about her son, my grandson, I would like the flow of conversation to be smooth.  I’m old enough that with interruptions, I have been known to lose the plot. I am old enough and respected enough in my family to be able to say, “I would like your whole attention”. What do the little ones do? Do they feel as “second best” as I do when someone’s attention is suddenly focused somewhere else and I didn’t even know it was coming because the Bluetooth makes no sound? Do they feel as pushed to the side as I do when there is no family interaction at the supper table?  I’ve been having conversations with people and all of a sudden I realize they are not talking OR listening to me. Without my even being aware of it, someone entered their earpiece and became the focus and I’m just irrelevant. It hurts my feelings and I’m old and wise (a li’l tongue in cheek), can you imagine what it does to a child?

Irrelevant.  Think about that word.  When we are talking and you answer the voice in your ear, I feel irrelevant.  If our children grow up feeling irrelevant, how does that shape their self image and we already know that behavior is based on self image.  In the “olden days” the phone would ring and we would either answer it, or not.  If we were having an important conversation, we would not! It’s not that way anymore and I wonder if it’s a piece of the puzzle when we try to understand the behavior of our children.  Our children are born needing our attention and that need never really goes away. When they don’t need us for food, dry clothing and a roof over their heads, they still need to know they are a priority in our lives.  They need to know that we WANT to spend time with them and that we are interested in them. How can they know that if, at any moment,without warning, our attention is focused on someone more important. And, believe me, that’s the message.  If someone is willing to leave our conversation to begin one with someone else, that someone else is more important than we are.

When my daughter got her first cell phone, we had a “moment” in a department store. We went shopping together and yet we weren’t together at all. She was on the damned phone for the whole time.  I stewed about it. I thought about my own teenaged years and then I sat down and waited for her to discover I was missing.  When she did and was confused about why I’d sat down, I explained to her that if she wanted to shop with her friends in her ear, that was fine.  But, I didn’t need to be there. If she wanted to shop with me, she needed to put the phone away. I think the little ones would like to be able to verbalize the same sentiment.  I remember back to when I was growing up. I really, really wanted my mom’s attention. As the eldest of 6, it was hard enough to get. I cannot imagine what it might have been like if she’d spent hours on her Bluetooth, attention on her friends instead of on her children.  I wouldn’t have gotten any at all!

When our children act out, they are trying to get our attention.  There is always some sort of reward for our behavior, even our bad behavior.  We don’t do things without gaining something in return. How many times have I heard a young mother say into her phone, “I need to go, my kid is acting out again” or words to that effect.  If the only way a child can get our attention is to act out, that’s what that child will do. If a child can gain our attention by behaving, then that’s what that child would rather do.

When we are on our phones, that’s where our attention is.  I feel so badly for the children who just want a mom or a dad to love them and spend time with them but are in competition with a phone.  Don’t even get me started on laptops and computer games.