Tuesday, January 8, 2013

Dear You, About Those Friends...

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.

Dear you

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.)



  1. Thank you. You have no idea how I needed to read this today. I'm forwarding this to my best friend right now. Thank you for your healing words.

  2. When I read your post this morning I was reminded of when my own father passed away. We each knew he loved us dearly, but this also was in the time when it was not "the thing to do" to say those three little words. My brother even mentioned it in his eulogy of my father. After reading your post, I wish one of us would have had the courage or whatever it would have taken to ask our dad to say the words to us. It would have meant so much. Sometimes we need to ask for what we each need! Words can be so hurtful at times, we "think" our friends, relatives, etc. SHOULD KNOW what to say or do, but it's not easy. Thank you for your writing.

  3. You are pretty amazing.

  4. THIS is why I read your blog. Thank you so, so much.

  5. Wow -- I don't have kids with special needs. I don't even have kids. I don't know why I read these blogs, but I do think I've learned a lot. I don't think we have a whole ton in common, but I really appreciate you and your insights. And wow -- are you on a ROLL lately. There are people who need to hear these words, and you are writing them. Beautiful, beautiful. In this, you are fulfilling part of your calling. God Bless.

  6. Thank you so much. I do not have a. Special needs child or any children at all. I am the one who has had incredible health issues arise at the age of 27 that have left me in intense pain, completely isolated and require me to depend financially on my boyfriend. I have difficultly walking and everyone stares since my nerves don't work and I walk like a robot. Just today I wrote my friend to tell her that although I am her Co-Maid of honor, I won't be able to travel to her bachelorette party in another state because my body is unreliable. All this time I have been so hurt that she has virtually ignored my situation. While she lives in another state, I couldn't believe I never got a call, card, text or even fb message. I kept telling my mom I would be on a plane the first second I learned of her problems if situations were reversed. What your incredible post has reminded me is that maybe she had no idea what I wanted. Maybe she didnt know what to say. Maybe she didnt want to barge in or make me feel uncomfortable. Maybe, just maybe, she can't read my mind and I must use my words to tell her. Thank you for saving a friendship of more than 25 years by sharing your incredible insight.

  7. Just when I think I "know" you, you surprise me. I never, EVER would have guessed you struggled with an eating disorder, I did, too, and know that it is no joke. You are so brave for even telling everyone that and it makes me love you and relate to you even more. If I went through half of what you've gone through over just the past five years, I'd be mad at the world. I wish I knew how you stayed so positive. I'm hoping that if I keep showing up to read your blog that you might rub off on me, Kate, I bet your parents are so proud of you for what you are doing with your writing. You're touching and helping a lot of people.

  8. Dear Kate,

    Thanks so much for this post. This is so beautiful. I think everybody should read it. I have a child with severe brain injury and I have felt such loss of friendships and this really made me see my part in it. And that it is so true that sometimes people are only in our lives for a short time. I am going to make an effort to tell those that matter to me what I need. Thank you.

  9. Reading this was like reading about myself!

  10. Thanks for linking up on the Boy Named Silas blog index! You just got the Liebester Award: Special Needs Edition! Find your questions at: http://boynamedsilas.blogspot.com/2013/01/liebester-award-special-needs-edition.html


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