My Dad never said "I love you" when I was growing up. He grew up in a time when men just didn't say that - especially to their sons. It was something I never understood. Did I know that he loved me? Loved us? Sure. He was a great Dad. He was a great provider. He helped us with our homework, he coached my brothers' sports teams, he danced with our Mom in the kitchen and wrote her poems. But he just couldn't say those three little words.
So one day, I called him on it.
"Look, I know you love me. You know you love me. So from now on - you have to say it."
I will never know if that was the conversation that did it, but slowly he started to say it. And he never stopped. Our very last conversation ended with... "I love you, honey. Keep the faith."
I probably could have had an issue with him not saying those three words growing up. I probably could have never said a word and privately resented him for not meeting my need to hear that phrase. But along the way in my life I've learned an important lesson.
You can't hold anyone accountable for what they don't know.
I get it when you tell me that it's easier to just not talk to people now that you have a special needs child. They don't understand! They mean well, but they say the wrong things. And close, close friends that you shared everything with and always 'got each other' are not supporting you at ALL like they should. The damage may be irreparable - your friendship may not survive, you fear.
To that I say, I was there too.
I was there when I was in my early twenties and had a horrible, very horrible, nearly killed me eating disorder. I was hospitalized. Several times. I had a lot of therapy and was given a lot of new "tools" which I used - but not well. No one could understand my new language; therefore, they needed to be pushed away. My Mom, my Dad, my siblings, my friends - they were all idiots and I wasn't getting my needs met at all by them because they didn't talk or act or help like all of my new "hospital" friends.
I was there when I was in my thirties and I had my first miscarriage. Some people actually said, "It's probably for the best." and "This was God's way of taking care of a baby that was imperfect." and "You can try again." and more. I hated all of those stupid sayings. ESPECIALLY from people who didn't even have children or never lost a child. No one understood what I was feeling - this wasn't just a "pregnancy" - this was our BABY! This was a broken dream! My heart was broken!! People said and did all the wrong things. Why couldn't they see what I needed? Why couldn't they comfort me with what I wanted to hear... or sit with me silently and know that would have been perfect?
I was there when I had Gavin. Suddenly even I didn't know what I needed. The majority of our friends kept their distance. One day I was grateful for that. The next day I thought they had abandoned us and felt devastated. People that came by the NICU could never get it right, either. One day I wanted them to ask a million questions - I needed to talk about his issues and my fears in detail. The next day I wanted complete denial - pretend you don't see the tubes, the concerned looks. Just tell me he's the most beautiful baby you've ever seen and everything is going to be alright. Down the road I would hear "he'll catch up" and some days I loved believing that. Other days I wanted to scream - NO HE WON'T! WHAT DO YOU KNOW?
I was there when I struggled and struggled to conceive. I was immersed in the world of infertility and injectables and in-vitro and constant blood and ultrasound appointments and even egg donation. I heard from everyone's mother, sister, brother, aunt and neighbor about their friends cousin who... "started the adoption process and boom, got pregnant" or "took a vacation and just relaxed and boom, got pregnant" or "realized that fertility treatments were against God's will and boom, adopted from Africa" or "gave up because the Universe was clearly sending them a message that they should quit." I even silently seethed when I would hear pregnant friends say, when asked if they were having a girl or a boy - "I don't care! As long as it's healthy!" There were days I took that as a personal insult. Nobody really knew what to say.
But that's just it. Does anyone ever really say the perfect thing - in any situation?
Does anyone ever really do the perfect thing? I mean, just exactly what you need at any given time?
I think we've all been in a situation where we are staring a friend in the face and panic. We know this friend is hurting, sick, depressed and we think we have to come up with something to say to "fix it." We'll never get it right, but we still find those words, unsolicited advice or well meaning phrases spilling out of our mouths.
The truth is... as we change, friendships change. It happens when we get married and leave behind unmarried friends. Suddenly you have less in common... you sometimes drift apart. It happens when we have children and leave behind childless friends. It happens when someone gets sober and leaves their bar friends... at the bar. And it happens when you are given the unexpected gift of a child with an illness or a syndrome or a disorder or an imperfection and your friends are completely scared to death. Sometimes those friendships can be saved, but how?
For many years, I thought it was all about "them." "Those that never got it right by me." "The ones that never said the right thing... did the right thing... acted the right way to help me."
But you know what? It's been about me all along. I was the one that held people accountable for things they didn't know.
My Dad didn't get that I needed to hear him say "I love you, Kate." - I mean really needed to hear it - until I told him. I can't hold him accountable for not saying it before that. It wasn't in his toolbox. I had to tell him to add it.
It takes a lot of bravery and self confidence to tell someone what you need. And on the flip side, it takes a lot of self awareness and compassion to hear from someone that their need doesn't match your intentions... and change your course of action accordingly. It's really okay to say, "I'm scared. I am so scared - and I really need you to pretend that you're not so I can depend on you for strength. I am going to have to figure out how to live this new life with this new child that needs SO much and I'm scared. We're going to have to navigate this new life as friends together. Please be patient with me as I figure all of this out because I don't want to lose you." Along the way, your friend will screw up. Maybe she'll panic when you asked her not to. Be patient. Maybe she'll complain that you are too wrapped up and don't make time for her anymore. Be understanding. Maybe she'll say something really, really stupid. Try to have compassion and give her the benefit of the doubt. It's a tricky dance, but if the relationship means a lot to you - it will be worth all the practicing.
You have a special needs child. Will you "lose friends" because of it? Probably. But it's not because of your child. Just like all of those moments in life when one person changes and the other one stays the same... people naturally move in different directions. It doesn't make them bad people... it just happens. I promise you, new friends will come along and you'll see that your life is not going to be only about "special needs" or "surgeries" or "hospitalizations" or "therapy"....
Just don't forget your tool box. Only you know what tools you need to feel fulfilled so be sure to remember to share them.
(p.s. - for the record, I am still learning this lesson every single day: You can't hold someone accountable for what they don't know.)
(p.p.s. - I love you, too, Dad.)