A friend of mine recently posted on Facebook how she was frustrated and discouraged by her son’s progress in speech therapy.
A small flood of encouraging comments came in response. They were all different, but quite a few of them, the ones that made me cringe, were the same.
The ones that made me want to scream at my screen were the ones I have heard for years myself.
From well meaning people. People who love me. Us. Her. Who mean ZERO offense. And I know that. Truly.
But good intentions don’t always remove the sting.
“Just hang in there! Soon, he’ll be talking your ear off and you won’t even remember this!”
“Oh, she’ll be fine. I know tons of kids who were delayed when they were babies, but now they are running circles around their parents!”
“They don’t give cerebral palsy diagnosis’ this early. There’s no way she has it! She’ll be okay. You’ll see.”
“My cousin’s baby was born with a heart murmur and he outgrew it in two weeks!”
“Just keep trying! You’ll have your baby eventually!”
“Everything will be okay.”
“Don’t worry, it will be fine.”
For my friend, for her son, the truth is, his speech is likely to come eventually.
But you know what?
Maybe it won’t.
Maybe he will struggle for his whole life with communicating his thoughts, fears, concerns, and loves.
Maybe it won’t be alright.
Maybe it won’t be okay.
I mean, it WILL be alright. And it WILL be okay…but Alright and Okay might look a lot different than you expect them to look, and it will be a journey wrought with tears to get there. To believe it.
And here’s the real thing…the other side that nags at my heart…
What if it DOES actually turn out okay?
What if that boy turns into a chatterbox that gets in trouble at school for talking too much?
What if the baby is finally born alive?
What if the sickness lifts?
What if the PET Scan comes back clear?
What if the girl runs marathons someday?
Does that discount the years of grief and struggle to get to that point?
Does that undo the long, painful months of just one pink line? Month after month after month.
Does that erase the pain of the little ones who went Home before their mamas could kiss their sweet cheeks?
Does that turn the mama who worried and prayed for the boy who ranks woefully behind his peers, a laughing stock?
The journey deserves its credit too.
Streaks of red can crush a soul in ways you never knew.
A half inch pink line has the power to knock you to the ground when it has no pair.
Our hearts can love so fiercely that which we have never even met.
Mountains of paperwork denied. Countries closed. Complex laws. International treaties. Can tear you to shreds.
Assessments and the ever widening gap between “typically developing” and your girl can be more than you can bear some days.
Getting to Alright and Okay isn’t always the point.
And for those of us whose Alright and Okay are wildly different than what anyone meant when they said it would be so…
…what then?
I distinctly remember a conversation several years ago, with a dear friend. Someone I consider one of my closest friends. Someone who loves my family dearly. Who means no harm. I know that. Deeply. But there are times that seemingly innocuous conversation plays on loop in my head. She probably doesn’t even remember it. But I do. Over and over and over again. And it angers me. Not because she meant to hurt. No, she meant to encourage and uplift. I know this. But, it stung. It stings. I remember exactly where I was standing. I can hear her voice. Telling me all about how Jill will be so totally fine. She knows this kid and that kid who…and they were way worse off, and now look at them!
And there are days, angry days, frustrating days, hard days, when I want to take my sweet friend, the one I call for support, and I want to grab her by the shoulders and scream at her. Not the pretty yelling you see in the movies, but the wild eyed, crazed screaming that comes from deep within my soul. An ugly, desperate scream. I want to tell her that she was wrong. In fact, all those kids that were worse off and are Okay and Alright now? Yeah, well, let’s talk about how deeply unfair the world is. Let’s talk about how it hurts me to see those same kids some days. How I have to leave the room because I am jealous. And sad. And I wish she had never assured me that everything would be Perfectly Fine, because this is the worst case of I Told You So I have ever heard of.
And then I want to punch her in the face.
And then I would feel really bad about it, and beg forgiveness because she is one of my dearest friends, and I know her words came from a place of love.
Truth be told, I’ve said it at some point too. I’m sure of it. Probably 100 times. Or 1,000.
“I’m so sorry. It’ll be fine. Don’t worry, it’ll all work out and be okay in the end. You’ll see.”
The cancer comes back.
Nurseries are turned into offices.
Special needs kids grow into special needs adults.
Spouses die.
Mamas mourn too soon.
Marriages crumble.
Homes are lost.
Friends, there has to be a better way.
A better way to support one another when they are walking a painful path. There has to be a better way to encourage and uplift and love without undoing the brutality of the journey, without negating the reality that for some, it doesn’t get “all better”.
Because the world isn’t so black and white. Which is good because my favorite happens to be color.
Here’s my proposal…let’s try this one? All of us. Put this in the back pocket of your mind.
“I’m so sorry. I’m so sorry you are heartsick over this. I’m so sorry you are worried. That sucks. I’m here for you. I will pray for you as you go through this. I will be here for whatever you need.”
Don’t ask them what you can do to help. Because she will say “Oh, nothing…” Because that is How We Do.
Do not ask if you can bring them dinner. Because she will say “Oh, it’s really okay…we’ll be fine.” Because that’s How We Do.
We women, we don’t like to impose. We’re dumb like that.
Instead…just do it. Call her at 2:00 in the afternoon on a Tuesday and tell her that pizza is scheduled to be delivered to her door at 6:00 that night. She will protest. Because…How We Do. But tell her it’s been paid for, so she can do what she wants with it. It’s out of your hands.
Mail a simple note and a $5 coffee card.
Cut two flowers from your garden, plop them in a mason jar and place them on her front porch.
Keep it simple. This isn’t about wowing her with your Pinterest search skills.
This is about Love. Support. Encouragement.
Validation.
She isn’t crazy. She isn’t neurotic. She isn’t being ridiculous.
No matter what the outcome turns out to be.
Because it really will eventually be Alright and Okay. It’s just that Alright and Okay are tricky words whose meanings change depending on the details.
And you want to be there for her in the case that she must navigate a new path to Alright and Okay.
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This is so so so true. Thank you for shedding light here. My daughter is delayed (14 months, but developmentally more like 6 months) and most likely has a Sensory Processing Disorder and I have heard many of the things mentioned. Great post!
Brittnie (A Joy Renewed)´s last blog post ..Proof that miracles can happen. . . twice
A few years ago I went through a pretty terrible time when I had a stroke at age 42 with three young children. Oh, I understand the difference between alright and ok! A really, really caring nurse came to me once when I was frustrated with the inability to speak and all the “kind words” that truly loving people were saying and told me “Honey, they just don’t know. They compare their worst day with your worst day and get scared. What they are saying is I WANT it all to be ok and alright. I WANT to be able to fix this and offer comfort and love and support and help. I WANT to give more than easy platitudes but this is all I have in my pocket to give you: the easy candyfloss words of comfort.” Now, I try to remember that when folks say stuff like that it is only because there aren’t better ways of saying “I love you, I ache for you and I support you”.
That nurse was an angel. What a great thing to say.
Brittnie, My daughter has Auditory Processing Disorder. She is now 23. If you ever want to talk, let me know. I don’t know anyone else who has this. I wish I had.
Cynthia´s last blog post ..New Year, New Beginning – 2013
what a wonderful post, and something i have been thinking myself lately as friends and family try to comfort us on our journey to have a baby. the journey definitely matters. thank you so much for sharing.
b @ then there was we´s last blog post ..guest post: stress-free family vacation!
Wow, thank you for sharing this, its a great post. I can relate to so many things and it felt good to read it all and just knowing one is not alone… I have two beautiful now grown up kids, daughter with severe autism and son with LD & Aspergers. I sure have heard my fair share comments, and then once you pointed out here (the once that are to sounds supportive just come out as the fork on the chalk board). Great post!!!!
this is SO good. so so good.
sara @ it’s good to be queen´s last blog post ..Thrifted Thursday #3!
I just want to say thank you for this post. Beautifully written and true.
Jhanis´s last blog post ..My Wedding Day
Your post has really struck me through my heart. Everything you wrote about is so true.
Thank you for writing this! As a mom to an internationally adopted little boy who lives with cerebral palsy (including major speech delay among other things) this deeply resonated with me and my experience.
Anna´s last blog post ..Roasted Strawberry and Toasted Coconut Ice Cream
I too have a story and can identify (10 years of infertility so far, still trying to adopt the kids in our lives for five years…one being disabled not to mention a cancer bout and other stuff along the way). This was not only personally validating but a good reminder to remember not to give those pat answers to others…sometimes I need reminders even going through it myself and not ever enjoying being on the recieving end of those good intentioned but hurtful comments. Thank you!!
Beautifully stated. I’ve been through three pregnancy losses followed by one pregnancy-after-loss, and so many people told me, “It’ll be all right this time, you’ll see. Just have faith.” Of course, they didn’t know – couldn’t know. If by “all right”, you mean a live birth, my son was all right. But the journey – ah, the journey of the last four years is what has made me who I am today. Thank you for your words. I plan to share them with others.
Kristi Bothur´s last blog post ..Surviving the ocean
Thank you! I’ve been through pregnancy loss and unsuccessful fertility treatments and have heard those same sentiments time and time again. I know the people mean well or feel like they have to say more than the “I’m sorry” but like the one commenter’s story said “they just don’t know”.
Kelly´s last blog post ..Spartan Sprint – Blue Mountain, Palmerton, PA
Thank you for writing this post. It speaks for so many of us who just…have totally different points of view when you say something is OK.
I lost my first son last September. At 39 weeks, he got stuck in his cord, and that was it. He was gone. I had to go through the cruel torture of delivering my baby without a heartbeat. All of it. Just to get to the end without him. This was never in my plans. My pregnancy was textbook perfect. And all of it came crashing down.
I’ve heard everything. I know people mean well, but the mindless blabber that comes from people’s mouths kills me sometimes. When all they really need to say or do is exactly what you said–“I’m so sorry”. “I ordered you pizza-answer your door.” I’ve had people cry on ME about what happened to ME.
I’m pregnant again right now, and I’ve been told to have faith. That people are praying for me. And the truth is, I know that this time will probably be fine. But that doesn’t change anything about the journey I’ve been on, and what I will carry with me for the rest of my life. My version of a normal life will just never be what most people’s “normal” is.
But I have to own it. Because it’s mine, and it’s my story, and my son was real and beautiful and perfect. My journey has been anything but easy, but it’s what I have left.
Jennifer´s last blog post ..The things I wish I didn’t know firsthand
i totally get that sometimes the encouragement we desire isn’t the encouragement we receive and when times are rough it’s easy to be angry at those closest who disappoint us. but this theme is echoing through the blogesphere where well-wishers are “doing it wrong”. that they don’t get it, they don’t right and we’re just so damned angry at them. i get it, but i also see something wrong in that thinking too. something wrong in saying it’s okay to want to punch a friend in the face for saying the wrong words of encouragement, even if it’s just a thought. because the more comfortable we are in validating that feeling the more credit it seems to gain. and it’s just wrong. more wrong than someone trying to be there for you in the wrong way. let’s encourage each other to be better friends and not tear down the people who try.
Wonderful post! I agree with you about the well-meaning comments. Nobody knows ’til they have walked in your shoes. Here’s what has helped me to move past the pain of this: I realize that everyone will have to deal with something bad someday, but they may not have had to yet. And even if they have, we are all different and will handle it differently. We will make mistakes. I try to remember that some folks just aren’t equipped and are doing the best they can with what they’ve got. Some folks aren’t, and they are just scared something like what you are going through will happen to them, so they just “pooh pooh” or minimize it to make themselves feel better. The most profound help I had in a very low moment was for an almost perfect stranger — the wife of my husband’s co-worker — to come sit beside me in my hospital room and hold my hand. She did not say a single word for half an hour. Then she patted my hand, smiled at me and left. That memory stands out as perhaps the most selfless, human connection I can remember. I think the reason it meant so much was that she gave, without needing anything in return. Your journey should be validated and honored. It does have worth — no matter what the outcome. Keep doing what you do.
Cheryl Salinas´s last blog post ..Watercress is Lovely with Avocado
I love this! Thank you so much for addressing this very real problem that most people can probably relate to, despite our tendency to respond in these ways.
I love the line:
Because the world isn’t so black and white. Which is good because my favorite happens to be color.
A heartfelt “YES!” to this.
I know when I miscarried, the kindest responses I got were “I love you” and “I’m sorry.”
Caroline Starr Rose´s last blog post ..Best of Blog Break: The Lucy Maud Montgomery Journals Read Along
My favorite part of this entire article was your remark on how “Alright and Okay” can be very different depending on your original expectations. My son is on the spectrum and these terms have a very different meaning to me now in life. Thank you for this post. I was very real and I could feel you emotion in the journey of my read.
Jason Ellis´s last blog post ..Tools to Fix Marriage for Life Long Happiness
Thank you for this. A friend of mine forwarded it to me…it’s what I’ve been trying to tell my friends for the past year. You said it so well. One of my BFF’s has a physically disabled son, so I know I was that “It will be better” person before, but now I know. My own son is speech delayed, most likely apraxic, and now I know what it feels like to just want to be validated….not told it will get better…just validated. Thank you again.
I am better at saying “what an absolute crock”. 2 live babies don’t take away the crushing sadness of 8 IVF’s and 2 miscarriages. Don’t tell me that I need to relax, don’t tell me that what’s for me won’t pass me.
The bereavement nurse sat by my bedside after my first miscarriage and told me to go easy on myself, take a few months and then start trying again & that most women get pregnant again relatively quickly. I very calmly told her (but wanted to shout at her) that she should go outside and read my chart before she came back to talk to me. She left & came back a few minutes later with the same speech. I suggested, not so calmly, that she leave me and never come back.
This is very inspiring for all of us, thank you for sharing. Personally, do you think all words of encouragement really helps?
My son was born 9 weeks prematurely and spent 5 weeks in NICU with one really dodgy week almost 9 years ago. Subsequently, he had some developmental delays, requiring many assessments and some therapy, where the doctors/therapists assumed the worst and friends assured us all would work out.
I must say that I never felt the way you described at all. I recognized that people were offering their compassion, as well as, legitimate examples of similar situations where things did work out. And I felt that they were offering a reminder that, while you can’t just turn off your concerns altogether, you can dial it down and recognize that often you can put yourself through more stress than you need to until you know for sure that you and your child have some on-going challenges to face.
And yes, my son caught up and his develop got back on track with his peers. albeit it took longer than other preterm kids. And I am glad that my friends’ kind words shared with me, helped me to understand that children with ongoing problems and those who will be fine, can both have similar delays during those early stages and it spared me excessive worry knowing that these delays were not definitive.
I think you need to acknowledge that it’s not that some people just don’t know how to comfort someone during a challenging time but that their assurances as providing perspective that may help a person recognize that worrying excessively before anything is conclusive could be undue.
I don’t think there’s anything wrong with sharing experiences that can provide hope to someone who is struggling. But it has to be done without dismissing what the person is currently going through. It needs to be done in a way that is validating. Telling someone who is struggling with infertility “don’t worry, it will happen one day” is not appropriate . It might not happen one day (it didn’t for me). Telling someone who is longing for marriage “don’t worry, it will happen” is likewise inappropriate. It doesn’t happen for everyone. Telling someone who had a miscarriage “don’t worry, you’ll have another baby” is incredibly inappropriate, because even if she does to on to have a live birth (I never did after my miscarriages, and it’s been 6 years since my last pregnancy), that live baby does not replace the one she just lost. Babies are not interchangeable.
My son (adopted) has some developmental issues as well as medical issues. I like hearing people’s success stories, but it is still very, very hard being in my current situation. And with my son, there are no guarantees (I can’t explain why due to privacy issues). So while I appreciate comments like “it’s amazing what therapy can do; it’s a slow process but there is much potential”, I don’t appreciate comments like “he’ll be fine, you’ll see”. He may or may not be fine. We are guardedly optimistic. But even if his issues completely resolve (unlikely), that does not take away the stress that I’m currently going through. “He’ll be fine, you’ll see” dismisses and invalidates my current feelings. The intention might be good, but it actually promotes a lack of empathy and compassion.
Thank you for speaking for the motley band of How We Doers out here, this is so refreshing. My wife and I have been on such a journey and very much understand the bewilderment and awkwardness and hope and chaos that you are describing, it is encouraging to come upon this blog and see other people writing with the same pen and ink. Please keep encouraging others.
Jeff Miller´s last blog post ..Leave right when you leave
Thanks for your post. It really resonated with me.
My son was born with a congenital heart defect (undiagnosed in utero) and after 30 hrs of “normal” we had a boy going blue and within hours a boy that might not survive. He had open heart surgery at 7 days old and we were caught in a whirlwind. Overall, because we were in a hospital NICU bubble with most family and friends ages away, I was out of any of that “it’ll be fine” talk. But my father-in-law obviously couldn’t deal with his grandson being this ill and basically ignored the situation, even though he was less than an hour drive at the time. My husband basically had to force him to come and see us. I’ve never fully forgiven him for that (though he’s always been fine with our son since). Luckily, for us it was “alright” and he is ‘okay’ but heck, that was a crazy journey and we treasure it and honour it and share it often.
But I get it more with the miscarriage (who cares if it was early on, it still was the baby we longed for as a sibling) and with the ongoing lack of baby (worse because there is always assumptions we are stopping at one and so the comments that go along there) but I really really really hate the comments of “if you relax it will happen” and “don’t keep stressing about it” – actually I rarely do stress about it because I treasure the one I have, but who are you to tell me not to stress about it when you don’t even know my story?! URGH.
Anyways, thanks for sharing, I look forward to reading more of your story.
Annet M´s last blog post ..Starting a 10K training plan
Thank you. I know you did not post this today, but I am slow at catching up. I have been in a weirs funk and a friend who is going through something big. Like big big. She is super down. Fortunately I have not said any of the it’s going to be okay things to her, because honestly, until I see her face to face I don’t know that it will. I am picking her up for the weekend so she can get away, and I am glad that I read this.
Gwendolyn T´s last blog post ..Mommy Time
Here it is some 21 days later and this post again resonates deep in my heart. I loved this post the first time I read it. And then today a friend came forward with her journey that she kept a secret from her family – her struggles with infertility and a miscarriage. Just today she asked, “Why be hung up on this **** when things worked out fine in the end?” And I shared this blog post with her. Because the the journey deserves credit too. Thank you for this!
I love this post. It resonates so deeply with me. I think that’s because I know how many times I’ve said it and I also know that I’m living a different “okay and alright” and they are better than I ever imagined. Thank you for this.
Jeannett, you hit the nail on the head. We have all been in a scary situation like that and every single thing that you wrote rings so true. I am sharing this, everywhere and I hope that everyone I know reads it. Honestly one of the VERY best blog posts I’ve EVER read. Thank you. For being kind, compassionate, and for writing from your heart always.
Alyson @Vintage Sunshine´s last blog post ..eight two thirteen
Jeanette,
I am overwhelmed by your post. The feelings and perspectives expressed are familiar to my wife and I. When our 18 yo son was diagnosed with cancer it was so hard to express to the well wishers that the prayer “Thy kingdom come, Thy will be done on earth as it is in heaven.” was real prayer — not a sound bite. Not a sparrow falls, but it is seen — yet the sparrows still fall. I also needed to not hear that God gave my son cancer for a reason. I needed and still need to believe that God is even more angry about what happens to his children than I am. Really what a person needs to hear at a time like that is not “theological answers” or an explanation how the apparent evil is really a good thing.
What we needed to hear is “I am willing to cry with you about this. I am willing to sit in the ashes with you. I am willing to live in fear with you.”
Michael is now in Glory. We will go to him. We are not okay. We are not alright. There is nothing to justify the horror that Mike went through, there is no moral or lesson to be taken from it that will make it “all better”.
Forgive me if I have said too much. I guess it touched a nerve.
Bob Maxell´s last blog post ..home
God bless you, Bob. I am so sorry for what you’ve been through, and sorry that there were people who (while probably well intentioned) minimized and trivialized your grief.