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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I love this. And I totally get it. I have experienced this firsthand. I have also had the other end of the spectrum. The people who felt the need to tell me after my child had her first seizure about the child they knew who was never the same again. The one who’s development went backwards, until she was merely a vegetable in a hospital bed, hooked up to machines. This was a good friend. I believe a well meaning friend. But how in the H-E-L-L is that helpful in any way?
I realize people don’t know what to say. Don’t understand how it feels. But sometimes, many times, opening their mouths or typing on their keyboards can make it worse. Your suggestions are so simple and so powerful. Thank you!
ohmygoodness yes. I didn’t even think about that side.
It’s so true.
People don’t know what to say.
And they just want to be helpful.
We all do.
Which I guess is why I feel compelled to write posts like this. Not to crucify anyone, or make them feel bad or guilty…but simply to say “Words matter. Words can hurt even if they are meant in love. Choose them wisely.” Because for those who may have never walked this journey (yet…because I believe we all do at some point)…they don’t realize how it feels on the other side. And they can’t be expected to know. Unless, perhaps, I can explain to them, in the most loving way possible, that it may not be the best choice.
Goodness gracious girl- you cannot start my mornings out with tears like this. I don’t know how many times and different ways I can tell you that your writing is amazing and powerful. But it is.
Yet again, you have written my heart in this post. It cut me to my core.
I had actually never really sat back and thought about how if things do eventually turn around that it wouldn’t lessen the journey and all the years of pain, heartache, struggle, etc.
My “alright and ok” are SO different than 99% of my friends (you are in the 1% ;). I still playback comments in my mind occasionally. One of my very very best friends of all time made a comment about “That’s why we chose not to vaccinate” and “I tried to tell you.” Ummmmm – it still KILLS me. Because in fact, I DID talk to my doctors, I DID research and I didn’t go blindly into vaccinating J. And yet, we still sit where we are. After that I chose different for Julia & Drew….but it still doesn’t take the sting of horrible comments one should never say to anyone let alone a best friend.
Anyway- i could go on and on and on and on some more on this. But I love you and I love Jilly. And all those cute kids of yours. Someday I hope I get to hug them in person.
Mique´s last blog post ..Printable Chore Chart
i love you.
mean it.
I love this post. As a mama who is missing my baby, I found myself thinking yes, yes, yes! to everything you wrote. I have been so lucky over this last year to have friends who have just loved me, not tried to fix it or me. The little acts of service that say ‘I love you’ speak volumes! I also have to say that the best way I’ve found to pull myself out of my dark places is to find people that I can give those little acts of love to myself. Thanks for a great post.
This is so very powerful.
this reminds me of Job’s friends. Well meaning (maybe) but totally off the mark. Sometimes we just need someone to sit with us in our pain. To validate our feelings about our sucky experiences. Not to encourage us to feel different, but to encourage us that our feelings are understandable. And definitely not judge us for it. I know you wrote this from your experience as a mom who’s heard Alright and Okay, but I’ve learned about validation through my marriage crisis. In any relationship, across the board, we need to be better about sitting with people in their pain. I also appreciate your suggestions for how to help someone who tells you they don’t need/want help. Thanks. Great post. xo
Anne @ anne b. good´s last blog post ..my week in review: 6/28-7/4//2013
I love your suggestion. I’m planning on using it! I get it but I’m not good with words. You have given me more love to share. Thank you! You’re good! That’s why I keep reading your blog.
I found this post from a link from Facebook. Wow, you really opened the flood gates for me. Every single word hit so close to home. You are an amazing writer!!! I am sorry about your neighbor too. Thanks for writing this post.
You just made me cry on a Tuesday morning…because I have been on both sides of this situation…thanks so much for this…spreading this like wildfire!
Lauren@ Warm&Fuzzy´s last blog post ..Good Morning Sunshine!
Thank you. I love you!
Jenny from Mommin’ it Up´s last blog post ..School Zone Publishing Workbooks Giveaway
A resounding AMEN from a women whose nursery has been an office for a long time. Thank you for writing this.
Through seven painful years of infertility struggles, I heard the same old cliches over and over again. “It’s just not the right time” “It’s just not meant to be” “A baby just isn’t in God’s plans for you right now” Every word, though full of good intentions, cut through my already broken heart like a razor blade and “Everything happens for a reason” is by far the worst thing that has ever been said to me. After having been blessed with a baby, I still have friends that are struggling with their own infertility issues, and I find myself saying “I know how you feel” to them a lot. But that’s a big, fat lie. There’s no way I can possibly know how they feel, as each monthly heartbreak can be wildly and emotionally opposite to the one the month before. I struggle with my words because I know how they hurt and I want to be the blessing, the encourager, not just another well-intentioned but hurtful friend. “I’m so sorry you’re going through this” and “I’m praying for you as you go through this” are just about the only things that can be said that don’t hurt. Thank you for this post. And all your posts. Your words and photos inspire me in so many ways.
Daphne´s last blog post ..Quickly
I’ve been on both ends of this situation, and you just want to help and love….and some days I want to run screaming in the streets because my 4th child passed away during surgery at 7 wks and all people see are my 4 beautiful, 2 boys/2girls…”oh how wonderful, 2 of each!” And I just have to nod and smile because I do not want to go crazy on a stranger and end up crying at the cash register at Joann’s you know? So “alright” and “okay” are definitely destinations on our journey. We hope we can help others arrive there with more peace too. Thanks for writing this.
I just came across your blog for the first time this am and I am in awe. You have a new fan~truly wonderful! Thanks from the bottom of my heart for such a heartfelt read!
Oh, this resonates so deeply! After losing two children and walking through long term health issues with our other children, I appreciate your honesty in releasing us from trying to make it better through trite and shallow words. The deepest care I received in those painful times has been the presence of friends who sought to understand my experience, gave lots of hugs and shared tears, and a dinner here and there. All were deeply encouraging, more than easy words.
You’ve been one of my favorite bloggers for quite some time. This is so thoughtful and well written. And the truth. At the end of the day, we’re all in this together. We need to honor the journey for all, and to lift one another up along the way. THANK YOU for challenging me to be a better friend.
NJ @ A Cookie Before Dinner´s last blog post ..{From The Heart} Those Little Waves
I’m one of those moms. My 6 year old daughter has cancer. My own mother won’t even let me grieve that while she’s doing well in her treatments, my hopes and dreams of a simple childhood for her are gone. I miss my pre-cancer family. I’m a follower of Christ and this isn’t a crisis of faith for me – I’m just SAD! I’m heartbroken that my baby has to go through this. Thank you for writing this.
This is such a powerful post that I relate to in so many ways. My little girl was actually born a year to the day that our first pregnancy miscarried. Such joy our daughter brings us, but now having a child does not take away the fact I lost one, that it hurt and still does. Whilst on the maternity ward holding my beautiful girl in my arms I still shed tears for the baby I never got to hold. That baby was a part of me and always will be and it doesn’t matter how many more babies I may have, it hurt to lose that one. That painful time in my life is now part of my story and can not be overlooked, erased or simply kissed better. Thank you for giving me the opportunity to share about the one I lost. I needed that, I needed to remember the pain I suffered because I loved him so much.
Jessica´s last blog post ..1000 Days to Go!
ugh. so true.
How many times have I said something that I was so sure that needed to be said that tore holes in hearts instead.
Oh God, please give me grace.
Kate @ Songs Kate Sang´s last blog post ..Pollinate Media #pmedia | #BetterNights with GoodNites
Brought tears to my eyes. Such very true words. Thank you for sharing.
I totally agree. When my youngest was going through testing for we-didn’t-know-what, I wanted to screm at my well meaning tribe of friends and say “You don’t know that (he’ll be OK)! I don’t want anything fixed! I just an ear to hear me speak my heart and smile and nod and walk with me….that’s all. beacuse you DON’T know. Just be here with me and understand I am struggling.” That’s all. Great post and beautiful suggestions.
And ….he IS fine today. What they thought was cancer……is not. He has vision issues, but he IS fine.
You write so beautifully! My daughter is pregnant with twins right now, she struggled with infertility, a miscarriage and now a issue with one of the twins. She is having a boy and a girl and her little girl has a lot of problems, bladder on the outside of her body, club feet, cyst on her spine, just to name a few. The thing people say to my daughter that hurts so bad is “well, at least you still have one healthy one!” Ugh!!!! How is that helpful!! Thank you for helping me to better understand how to try and help her. I lost a baby at 24 weeks and I know how that feels but, I still don’t know how it feels to be going through what my daughter and son-in-law are going through and will continue to go through!
Love this, Jeannett. You know we’ve been there too. And part of the beauty of going through sorrow is learning HOW TO GRIEVE with others – no matter how “big” or “small” their problem is.
Wow, this was beautiful. Thank you for sharing this.
My favorite line: “The journey deserves its credit too.”
Katy´s last blog post ..June 24th (“The only thing we have to fear…”)
Thank you so much for telling what to do and not only for what NOT to do/say.
As you say many care and want to help but don’t find the right words and deeds. I want to remember that for minor and major difficulties of others.
jeannett.
i love you.
thank you for writing this.
xo
hannah singer´s last blog post ..bits from the weekend
Beautiful words, Jeanett <3
LOVE LOVE LOVE this! I remember wanting to scream if one more person told me they understood what I was going through or that it would all be ok in the end. I also remember bursting into tears when I got a card that said we are praying for you and had a small gift card in it. Just that thought that someone didn’t understand what I was going through, but thought of me anyway and took time to write a note made me feel so loved and like I could actually contact that person and talk to them.
Amen. 100 times over AMEN.
Monica @ The Writer Chic´s last blog post ..Adios, Google Reader
More true words were never spoken. Thank you for this post, Jeannett.
Heather O.´s last blog post ..Insane Goals – June 2013 Update
Thank you for this! I feel like I always say the wrong thing. I will try your suggestions from now on. Sometimes words don’t need to be said, problems don’t need to be fixed, we just need to be there for each other. Great post! :)
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We had so many well meaning, caring people say some things, that to this day haunt me. We found out at 23 weeks our son had Hypoplastic Right Heart syndrome and knew in that moment things would never be okay. His childhood was gone, his long life gone, but we were determined to help him live as long as he could. After his transplant he took a turn for the worst and I started not speaking to people as they wouldn’t just let me grieve. He passed away a month after and it is never going to be okay. I am okay, my family is okay, we are dealing, but it will never go away, never be fair and I will never be the same. I so enjoy reading your blog, and your thoughts are so close my own I feel like you are taking the words out of my mouth.
Hailey
Hailey´s last blog post ..A date and new paint
Jeannett you hit the nail on the head. When my little was in treatment, everyone rushed at once to tell me he would be better before I knew it. They all meant well, but it always hit me hard. I didn’t want to know he would be better, I wanted to take his pain away now…which of course is impossible thinking.
One of my best friends would stop in every morning with a newspaper and a cup of non-hospital coffee. We didn’t talk about illness, pain or the future, instead we sipped our coffee in silence. After a while I was comfortable enough to leave her for a few minutes and sneak in a shower or just step outside the hospital for a moment. She would leave without fan fare 30 minutes later or so and every so often would “steal” my dirty laundry only to return clean clothes the next morning. It was everything I never could have asked for….cause that’s how we do.
Now that my household is healthy – I feel like it is my mission to pay it forward. Dropping off a frozen casserole because “my freezer is full” or if the kiddos are feeling up to it – whisking kids away on an excursion so mom can nap. (My line always is – what’s two more? This is why we drive gas guzzling SUVs.) I never want to put anyone on the spot or force my help onto a mom whose plate is already full…but there’s something to say about being present and offering something that is easy to accept.
*Oh and one tip, always use containers that you do not want returned – and leave a note expressing the same. There’s a level of guilt in not returning a plate/pan “fast enough” that I cannot describe.*
Beautifully written! I thought only I wanted to secretly punch someone in the face for saying things like this to me about my son. Haha! Thank you for sharing so more can know these comments are not helpful. This brought tears to my eyes.
Exactly!! Thank you for sharing this. If we say we’re alright or okay that’s one thing, but others telling you all will be alright and okay is totally different. My husband has cancer, my daughter has multiple health issues, we have a genetic disorder being discovered now after several family members have died from complications…this journey is NOT ok and alright…we don’t know what is to come…we can’t just choose the best outcome. This journey has painful moments, days, years…it is just that, a journey. We choose to allow The Lord to use each disease, diagnosis, flare, basic everyday issues from these things for His Glory but there are days it is just HARD and PAINFUL. Thank you for being the voice of those of us struggling with this very issue.
yep.
This was perfect for me to read today! I completely understand what you are saying and even though I know I’m guilty of it at times too, we all need to be better at it. In the last 1 1/2 years I have struggled with both a miscarriage and infertility. I’ve heard so many comments that came from love but HURT. Sometimes I feel like I will just scream the next time someone tells me “your young, it just takes time”. It is a long hard journey and one I never thought I would have to experience but I wish my friends would say “I’m here for you, I know its hard and sucks”. Thank you for bringing attention to this and encouraging all woman to be there for each other.
This hit close to home in a few ways. Late cycles… failed adoptions… family members who told us to “just get another dog”… “WHY did you get ANOTHER dog?!?”…
The thing that struck me the most though was thinking about a little autistic boy we know. He used to pretty much only speak Taz. He is a little more into English now. I think the day I fell head over heels in love with him is when, in the midst of an AWESOME Taz tantrum, he turned those baby blues up to me and said “Peas”. It was so sweet and innocent. He had me at “peas”. He makes his dad shake his head and remind us that he is stringing us along. Yup. And we are enjoying the ride.
I love this. I love your blog & writing. Thank you for putting words to these feelings! I especially love this song that reminds me how and WHO will one day make all things alright and okay, not the circumstantial reasons that others want me to hope in.
http://www.youtube.com/watch?v=Y50EDNEJvTA
A friend’s mom recently passed away. I told her the only thing I know to do during times of loss is scrub toilets and wash floors. Since I couldn’t stand the thought of her coming home from the memorial service to a dirty house (one that looked like mine does right this minute) I grabbed a friend and cleaned. I am sure I felt better than she did…
Oh goodness. This resonates in me for so many reasons. Mainly because I’ve spent the past two days trying to communicate this to my own blogging community. It’s so, so tough to know that you’re probably going to say the wrong thing, but not saying something is sometimes the wrong thing to do too. It takes loads of grace, good forgivers, and intentional nurturing of relationships to really encourage each other. Thank you for this.
Amanda {A Royal Daughter}´s last blog post ..Tearing down walls that divide mamas and want-to-be-mamas
Thank you. During our first journey through infertility, people said some of the craziest things and now as we are trying to get pregnant again, I am much more selective about who I share our journey with but even those closest to me and the most well meaning still say hurtful things.
Thank you for those right words, “I am so sorry you have to go through this.” My 32 year old has muscular dystrophy that is only noticeable if he climbs stairs, an auditory processing deficit and ADD without hyperactivity. All invisible. I was crying with a friend when he was maybe 12, then realized that he had a normal life expectancy, while my friend’s child would not make it to 20. I acknowledged her situation as worse than mine, but she knew my struggles were real. She loved me. Makes me cry remembering the struggle.
Yes indeed, the journey deserves a lot of credit! My 6 year old son was born with a cleft lip and palate. He also has some mild hearing loss, which further slowed his speech development. We had the very ambitious goal of having his speech developed to the point that he could begin first grade in a regular classroom by age 6. Nearly 3 years of speech therapy and many prayers later he has been tested and accepted into the private school that our older children attend. I almost shudder now when I think of the many hours we spent here at home drilling sounds and words. Reaching our goal feels wonderful but the journey almost looks worse looking back than it did while we were in the hardest of it!
Hi Jeannett!
I’ve been reading your blog for some time now. I’m not a mother, nor do I hope to become one any time soon (I’m only 23 and that’s a longgg way off). But your blog has provided me with comfort several times, especially when you write candidly and emotionally about children with special needs, as I have two sisters with varying degrees of special needs and I feel like I understand and appreciate my parents even more after reading your posts. You write about a topic that is deeply emotional, and often hard to articulate, and you do so beautifully. Thank you so much for that. I demanded my blog readers come over here and read your post today, because I really think this is something that everyone (not just women!) need to read and understand about life’s obstacles.
Thank you again for your beautiful words!
Erika´s last blog post ..The Joy of Less [Book Reflection]
For more reasons than I can even begin to put into words, your truth is exactly what I needed to read today! I have been on both ends of what you have described–I have been on the receiving end of “he’ll grow out of it, you’ll see, it will be fine” and I have made promises of “it will all be okay” even when i didn’t believe the words as they were coming out of my mouth. I think I have just wanted it to be “okay”…
Thank you for reminding me what matters most–and that’s validating those we love through their journey…with love and support and compassion and sensitivity.
You have a beautiful spirit and a beautiful message to share with the world. thank you for your words!
ashley @ little miss momma´s last blog post ..DIY Striped Baby Gift
Thank you for writing what has been in my heart for YEARS!!!
The one that makes me want to scream and rip my hair out when a mother is pregnant “Oh it does not matter what gender it is… as long as it’s healthy and has TEN fingers and TEN toes!” Well, what IF it’s not healthy. What IF the baby does not have all it’s fingers and toes… THEN what??
Everyone told me:
“My friend had an unclear ultrasound too.”
“Oh, one day she will walk.”
“it will be just fine.”
And she was not. My daughter was born disabled. She can not walk. She will never be able to walk…. and that is O.K. because we are happy and we found a new normal and we witness miracles daily and we feel blessed.
But there are still hard days. There are still days (like yesterday) where she gets one too many stares from little kids and one too many comments and questions that are hard to answer. There are still hard days.
Thank you for shedding light on this. Thank you for helping us to realize that our words can sting, even though we think they are coming from a good place.
Thank you for this beautiful post.
Penelope Lane´s last blog post ..Update on Little Penelope Lane
this was excellent.
win
so very much win
Thank you for this. For both those in a struggle of any kind and those who are trying to help, this is an important read. While I am not disabled, I have a chronic disease that affects every piece of my life, and I’ve had many of those same comments directed at me because of it, this is a what I needed to hear, and I’m sure given time will be what I need to say to many friends along the way. Thank you for this insightful post.
Oh my gosh. This is perfect. So glad I checked in today…now I have a mason jar and some flowers to find. Yes, the journey is life. Really good lady! I thought you were going to say you wanted to punch your friend for giving you shit about belly dancing in college ;)
Sorry for that, by the way.