One recent afternoon, I was talking with a friend and she was sharing with me her current struggles in raising her young adult son with special needs.
The experiences she shared went deep down. Places that pull and tug at our emotional center. There is so much that is not in her control, yet he is her child. Her son. Her baby. And he is struggling, which means she is, too.
Her situation requires big decisions, and they take tremendous courage because she is walking through a lot of unknown territory. She finds herself reaching, trying desperately, to find the right answers for him.
She is safe sharing her struggles with me, because, I, too, have a child with special needs. It doesn’t matter that our sons differ in nearly a decade in age, or that their needs and personalities have many parallels. What matters is we both understand the day to day challenges in raising a child with special needs that are not so easily seen from the outside looking in. We feel safe sharing the soft, raw spots deep within us.
There was a time when I used to protect myself from this kind of intimacy. It’s scary to lay yourself bare like that, because those soft spots do not have any protection. If they did, then that deep level of connection would be impossible to attain. There can be no layers. So those raw places can be abused by anger, criticism, judgement and the like. I have no doubt that those of you reading this have had at least one experience of getting punched right in the soft spot, and it was so painful, the knee-jerk reaction was to cover it with stand-offish layers of protection.
I used rationalizing words for this layering; “I am an independent person.” “I can handle this by myself.”
I went on, being “independent” while I built layer upon layer over those soft places that could so easily bring pain if exposed, unconsciously denying myself that deep connection with another.
Then, Wil was born. If someone tells you that finding yourself unexpectedly raising a child with special needs does not knock a marriage off kilter, even a little bit, then let them know their pants are on fire, because they are a liar.
Wil’s diagnosis was a knock to the foundation our marriage stood upon. Matt and I were teetering in our own very different positions and perspectives on what this diagnosis meant for our son, our family, our marriage, and ourselves.
We needed to do a lot of repositioning and adjusting in our own belief patterns to get our marriage back in balance again. But that meant opening up our soft spots to each other, and at first, they were just too raw. They were too susceptible to pain, and neither of us was willing or ready to go there.
So, we soldiered on, business as usual. I continued being “independent.” I am a people pleaser and a take charger by nature, so that is exactly what I did. Matt is a thinker, his nature is to take things in a slow and methodical way. And so, he continued his slow and methodical ways of processing this new change to our family, while I jumped into a support group, scheduled therapies for Wil and buried my nose in books about Down syndrome. It was a nice mix at first. He kept me calm, and helped me quiet that demon who used to beckon constantly in my ear, Are you doing enough for Wil? Will you ever do or be enough? And, I gave Matt the space and time he needed while he worked to provide for our family of five.
As I became more involved in all things Wil, Matt and I were growing further and further apart in our level of acceptance. He was working every day, so didn’t have the opportunity to be with Wil the hours that I was, meet the people in the support group, and form strong connections with these new friends who innately understood daily life with Down syndrome. I found myself not only accepting this life, but fully embracing it.
The further apart we grew in our acceptance, the more we were feeding the proverbial 500lb gorilla in the middle of our marriage.
I felt that pressure of the growing gorilla, the heat of it, but I didn’t know what to do. I was doing what I knew how, I was giving Matt space and time, and all I was doing was creating space between us. This became so painful within me, that I talked to Wil’s social worker about it. I bared all my soft spots to her. She was a safety zone for me, and I also knew, she would be completely honest with me. She listened carefully, and gave me that steady, yet caring and understanding look she has. Then she said, “You are protecting Matt from Wil.”
That made such complete sense that it stopped me in my tracks. How could I not have seen that? But, by that time, I was too far in the forest to see the trees. Wil’s social worker pulled me back, and gave me some much needed perspective.
I realized, in that moment, how that pushy gorilla made his way into the middle of our marriage. He didn’t start there at 500lbs. He’s much too sneaky for that. Every day that Matt did his thing, and I did mine, protecting our soft spots from further pain, we tossed bones to that greedy monster, until one day, unable to bear the heat and overbearing pressure anymore, I stopped and stared in awe wondering how the hell we allowed this 500lb stinky mess into our marriage.
When the social worker hit me with that reality, I was faced with my part in feeding the gorilla. Once I clearly accepted that reality, I decided to take responsibility for my part in it. I wasn’t going to beat myself up, there really is no right or wrong here. We do what we know how to do best, and now, with my new perspective, I knew how to do better. And, that’s what I was going to do. But, that would mean I had to peel back those protective layers. I would have to share those really raw, and still painful soft spots. That was so very, very scary to me, because I didn’t know how he would react. I’d be wide open for more hurt, but things could not go on as they were. I needed us to be back in balance desperately, and the only way I could do that, was to go to that really deep place of connection with him, and back it with pure love. Pure love for myself, for him, for our son, and our entire family.
When we had that talk, he didn’t walk away, he didn’t attack that soft place I opened to him in fear and anger, he, instead, found a safe place, and he opened up, too. We connected, deep. It was a complete game changer for us.
Matt and I can now both dive to those raw places whenever we feel the need to, and feel safe doing it. We have a stronger and tighter connection than we ever did, and that brings a great sense of inner well-being. It’s our new balance. I’m not implying that our marriage is perfect, but I don’t care too much for perfect anyway. Perfect has a lot to protect so it simply can’t travel to those depths.
We are still imperfectly us, only now we know better, so we do better, and we do it completely primate free 😉
Stories of Wil, my son, who has Down syndrome 
