On the Things I Don’t Tell You

I don’t write a lot about my kids with special needs. Partly because handling the I.E.P.s and the quirks, the delays and the frustrations, the joys and the surprises, seem, well, ordinary for us these days. Mundane. Ho hum. Like handling any of my kids’ personalities, I guess, because it turns out we all have needs in our family — we’re very, very needy around these parts — and every need takes time and is, technically speaking, somethin’ special.

I don’t write a lot about my kids with special needs because I don’t trust myself as a competent enough writer — all blah, blah, blah as I so often am — to convey the depth of love I feel for my kids who have to navigate this curious world, and the immeasurable respect I have for their relentless, courageous pursuit of life and learning. I never want them to look back here to re-read what I’ve written and misinterpret it as angst directed at them, because they are precious people worthy of endless love, like all of us, and I want them to know their mama’s always in their corner.

But I also don’t write a lot about my kids with special needs, if I’m going to be as truthful as possible, because it seems like too much. Too Big. Too difficult to wrap inside one blog post. To tricky to pull off just one piece to examine and package and stack neatly on the bookshelf, labeled correctly, and cross-referenced by topic. And so I make the occasional reference to my kids who experience delays and disorders, and I don’t follow up to tell you I’m sometimes breathless with worry about what their futures hold.

I don’t tell you, in general, about how we don’t sleep through the night around here. But we don’t. We don’t sleep though the night around here, and sometimes it’s for the usual reasons parents don’t sleep; the bloody noses and wet beds, the nightmares and the thunder storms. Those are the good reasons we don’t sleep. They’re my favorite reasons. But we also don’t sleep through the night because of the screaming and the panic and, worse, the keening that comes from my son’s bedroom because he doesn’t believe — can’t believe, deep down — that we won’t leave him, too, like he’s been left before.

I don’t tell you about the doctor visits and the counselor appointments and the brief respite my sweet son got when the meds we refused for 10 years were finally used and worked for a little while, and I don’t tell you about the guilt I have for not using the medicine sooner.

I don’t update you to let you know that a dog named Zoey, whose name means Life, gave us back a piece of ours by giving our son comfort he can’t receive from us.

I tell you about my younger daughter’s developmental delay even less than I tell you about my son’s, because her needs, while significant, pale in comparison to her brother’s, and so she draws the short end of the attention stick, both in public and in private, and I fret about whether she gets enough from us. She does and she doesn’t, I suppose, like all our children; getting enough and too much and not at all enough from her mom and dad, but I can’t help but feel we should give this 8-year-old stuck in a 13-year-old body more, somehow, you know?

I don’t tell you that I’ve cried myself to sleep watching the status updates of friends with daughters my daughter’s age who play and laugh and sleep over and bake and craft and make memories of girlhood together. I don’t tell you that because it’s unfair to my friends and to their kids and even to my own child to burden them with my grief and steal from their light-hearted joy. My daughter isn’t sad, after all. She’s not lonely. She has no sense of missing out. The other girls? They’re kind to her and gentle and sweet at every turn. Anti-bullies, every one. They include her when she’s around. They write her special notes. Every year for 6 years now, they champion her at camp, and give her a soft space to land, and meet her where she’s at, and engage her as much as she is able. What more could we possibly ask when there’s no more she wants or more to give?

There are no villains in my daughter’s story; she has thousands of sword-wielding, horse-riding heroes and heroines, instead. The people who would slay a dragon for this kid are legion.

It’s not my daughter who is sad or lonely. It’s just her mama is for her sometimes. Because even now — even 13 years after this precious little one came into my life and I realized she’s her own, unique, very different soul — I can’t help but think about what could be. What her childhood could have been like. And I mourn the loss of it for her. Right or wrong, I do. I mourn what she doesn’t want and will never have.

And gosh, I realize I sound so down. So terribly sad. And I want to lighten that. Lessen it. But it’s a window to a dark piece of my heart, and I don’t know how to wave from the dark and let you wave back unless I let you see it, so there it is.

But I will leave you with this, because as many little dark corners as there are in my heart, there are more places that are light and bright, and Karen Pugsley is one of the many reasons why:

Karen Pugsley is my daughter’s principal. She is noble and wise, and, more importantly, kind, and when my daughter was hurt at school last year, Karen sat with my kid and me for what seemed like hours and days until my kid felt ready to go back to class, as though my daughter feeling comfortable and supported and loved was the most important thing Karen had to do that day. Ridiculous, right? Because what kind of a message do people like Karen send to our kids, you know? 

Well, I’ll tell you what message my kid got; she believes Karen’s got her back. She believes Karen’s worthy of her trust. And she thinks — get this — that Karen is her friend.

This week, my kid smuggled her Newest, Most Favorite, “She Is, Too, Alive,” stuffed animal, Quick Silver — a wolf, of course — to school in her backpack.

Please sit with me a moment and think about what might happen to an 8th grader who brings “She Is, Too, Alive!” stuffed animals to school.

IMG_1153Ugh, right?

And DREAD.

Except not for my kid. Because I got this message in my email box yesterday from Karen:

Your kid sent Quick Silver home with me tonight to meet new friends. They had a party. I chaperoned. We had a good time. Please show her the pix. I’m bringing the cool fox to work tomorrow to hang out.

I cried, you guys. Cried big, sloppy tears.

Because as much as Karen’s care for Quick Silver was an expression of love for my daughter, it was a reminder, again, that we don’t walk these roads alone. THANK GOD. We don’t walk these roads alone.

In conclusion, KAREN FOR PRESIDENT.

……….

Listen friends, I don’t know what today is like for you. I don’t know if you’re stuck in a dark corner or if your heart is happy and light. I don’t know if there are things you don’t tell because they’re Too Big and Too Much. I don’t know if you sit sometimes, sure you’re alone and dreading what the future holds.

But I choose to believe this — we are not alone. We’re not. And that’s enough for me for now.

Sending love to you, friends, and hoping for a Karen in your life,

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ABOUT BETH WOOLSEY I'm a writer. And a mess. And mouthy, brave, and strong. I believe we all belong to each other. I believe in the long way 'round. And I believe, always, in grace in the grime and wonder in the wild of a life lived off course from what was, once, a perfectly good plan.
29 comments
  1. I’m waving from the dark, Beth. I have been in a very dark place this year. So much is happening, and it is hard to process it all, and deal with it. My husband, a police officer, was injured in the line of duty in January. I had that fateful knock on the door that police spouses dread. Thankfully he is alive, and is slowly working on recovery. But we were kicked down last week, learning he will never be able to return to the job he loves. We are seeing the death of our future dreams die, all because someone drove when they were too tired, fell aslepp behind the wheel, and hit him head on.

    On top of all of this we are dealing with, my in laws are creating all kinds of ruckus in our lives; father-in-law getting sick, both of them needing a new place to live, blind and handicapped mother-in-law living with us for a while, FIL going crazy and walking away from his wife of 42 years and his entire family and life, getting MIL into a place to live since we have to work and cannot take care of her full time, FIL creating tons of drama and BS. It’s all a bit overwhelming, and I really do feel like my family is going at it all alone. I know that’s not true, we have an amazing support system, but people who aren’t going through it just don’t get it.

  2. No words…..nothing left to add, what you’re said is perfect….
    Waving too.
    That breathless fear that comes over you when you even dare contemplate what the future MIGHT look – I get that sooooo well.
    Thank you Beth.
    From one warrior momma to another
    Xx

  3. […] been good to hang out with you more, friends. I especially adore your responses on “On the Things I Don’t Tell You.” Thank you for sharing your real selves with me. You’re […]

  4. Count me among those waving back! My dark places get hidden behind photos of skateboarding, and baking, and projects. Photos that chronicle the light that shines down between bouts of anger so scorching my daughter and I both reel, and I am bruised from kicks both physical and mental. Visceral wounds that no one but our therapist and we acknowledge.

    It helps, oh Lord, how it helps to read your words, Beth, and those of other mothers living with this kind of pain, and joy, and wonder, and fear, and hope, and dark, and light. There are days and nights when I am sure that not even God can see me, small and corner-crouched in my darkness. But then He sends messages, sometimes from you all.

    Thanks. So. Much.

  5. Waving in the dark! This is such a season of struggle and tears and worry over my sunny happy funny child, who also happens to wrestle with increasingly difficult anger management / beavioral issues. I can handle being told how much he hates me in a flash of anger when he doesn’t get his way, but it truly breaks my heart to be afraid my own child is going to hurt me, and to worry so much for his future if we don’t get this managed. Trying to get help, but it is slow. Lots of waiting and hoping the next appointment will be the one. Life right now is very overwhelming. Praying we get the answers were looking for, and are still in one pice when we get there. Thank you for this post, and for reaching out in the dark. Makes the isolation not quite so lonely. Wishing you, and everyone, what they need most today!

  6. I don’t tell things because they’re Too Big and Too Much. Parenting is hard.

    1. Yes & Amen!

  7. Please know that I am waving at you from the dark…and that, even though things are tough, I am smiling because I know that you are waving back. Thanks for making me feel less alone and for giving me hope!

  8. Sat with tears, as I know the worry and the hopes not realized. The accepting the gifts that are and not the gifts that can only be imagined. My sister with developmental disabilities lives with me, and she is a true blessing just as she is. I have been her caregiver for many years and in reality was her caregiver/protector/parent in my childhood. It took me many years to accept the gift of her, just as she is. She has a very very part time job at Starbucks, the Y, bible study, church, and friends. She lives a full life. Your daughter too will live a full and satisfying life even if it is different than you imagine. God is good, in this broken world. God Bless.

  9. Thank you, as I sat here crying this morning for my kiddos who are struggling to succeed when their teachers don’t read their iep or 504 and I have to spend hours at the school in the mornings explaining to 8 teachers my babies are not being obstinate she cannot hear you without her hearing aid and those are seizures not attitude. He cannot write neater or more clearly he needs extra time if it involves writing so please don’t say he is lying he does not know how to lie he looks 12 but his interpersonal skills are a 4 year old.I needed this now i feel so much less alone. Waving back at you 🙂

  10. Thank you for this. The stuffed animal story made me cry. My daughter is having her 9th surgery tomorrow and her 10th one in December. I’m waving to you from my secret dark place that no one knows about either.

  11. I think I needed this today. We live in the world of bi-polar, or OCD, or anxiety, or…we’re not really sure. But it’s really hard. To love enough. To be patient enough. To not let the stress of it take over our lives. Thanks for airing this out.

  12. In tears!
    If anyone at my kids’ school demonstrated such love and understanding for them I would be eternally grateful. What an amazing principal indeed. I second Karen for President!
    Also, I feel your sadness and pain for your daughter. We often feel upset and sad for our son when he misses out on friends, playing on the jungle gym, getting the prize etc because he can’t/won’t participate or do what is expected to bea part of the social machine that is school. And yet he is seldom upset by it, it’s just who he is and what he can handle and he’s accepting of his limitations and needs. It doesn’t make me not grieve for what he misses out on though and wish for an alternate universe in which he was the normal one and every activity and custom was perfect for his uniqe self.

  13. Last night my 10-year-old twin boys wanted to go their school pep rally. They are in 5th grade, which is middle school and it seemed like an activity kids should be dropped off at to enjoy with friends. Not a place for parents to hover. But one of my boys has cerebral palsy and spatial reasoning issues. I worried about stairs, I worried about him getting confused and lost, I worried about many things. But they wanted to go so badly. His fully-functioning brother promised to stick with him and stand behind him on any stairs and to make sure they came out to be picked up at a certain time. So I worried that it wasn’t fair to put that responsibility on the one.
    I went through with it and fretted the entire time, but all went well and one brother looked out for the other and they had a great time. Because 5th graders should be able to go to school events without their parents, right? Nobody understood my stress over this simple issue. But it was immense and we do not talk about these seemingly minor things because, like you said, it is too much to wrap up in a post. But I tried here.

    1. This brought tears to my eyes. It may not be fair to be that responsibility on a child but what an awesome brother! I’m so glad they could go and hope that they had a wonderful time. How great that they have each other!

  14. I’m waving courageously with tears in the peace & quiet of my kitchen after another typically chaotic morning madness. My 12 y/o daughter is so bright and creative and at the same time overly anxious. Change is hard for her, so when she came downstairs dressed in wacky colors for Wacky Wednesday I laughed and then reminded her that her class was assigned a certain color. Major meltdown and her whole morning was off kilter, which causes chaos for the other 3. Finally I was able to determine her color was blue. Immediately she went to “but I don’t have anything blue…..” Well of course she did, but she was so paralyzed by the change she couldn’t think clearly! Big deep breaths momma!! Ultimately she came down with blue t-shirt and blue jeans.

    If this was random and didn’t happen daily, I could deal with it. If she was the only child with “issues” I could deal. But the thing is I have 6 kids at home, 4 of them have a variety of needs due to neglect and abuse by previous family members. I could write books about my days of chaos. I too have laid awake at night wondering what their futures hold. Or crying my pillow wet from grief of what they experienced at the hands of those they were supposed to trust, and now they don’t truly trust anyone. Not even the mom and dad who have loved them into a forever family.

  15. Oh how I needed this today! I have been mentally preparing myself for my 17 year old senior’s IEP today. I say preparing myself because I am fighting to make his special Ed school follow through with the reintegration into the local high school we have been discussing for the last 3 years. I know I will walk in and have to battle for him to have “normal” high school experiences while there is still a safety net available. To show him his “Super Momma” is willing and ready to don her sword and shield for him without hesitation. To not allow him to see that I am just as frightened and angry about his future and the struggles as he is.

    Again, thank you, from Kansas, for waving just when I needed it most.

    1. Updates: We did it! He starts today at the high school! Of course, for the rest of this semester, he will be in a special classroom for most of the day, but we did it! Out of the special school and mainstreamed with assistance! When I told him, my heart leapt with joy at his face! I haven’t seen the happiness and pride in that handsome face for a long time! Now to get him up out of bed. I don’t think he slept a wink last night! It’s going to be baby steps today, but we took leaps yesterday!

      Waving and cheering from Kansas – other Mommas, kept your chins up! I’ve been fighting this particular battle for 5 years, the war has been raging for 10, and we won this one!

  16. Pugsley for prez!!

    Thanks for sharing you. 🙂

  17. All I could think was both/and. Yes, both/and. Yesterday, I sat and cried, as I often do, for the mess of a momma that I was in my oldest sons younger years. I looked at him now at the cusp of turning 18 and battered myself with all of the protecting that I did not do. I looked at him and just couldn’t forgive myself for what I put that sweet boy through. That is the perpetual dark corner of my heart. Years that I can’t get back. Yet my son is so sweet, so lovingg, so thoughtful. He’s lived with his grandparents since he was 10. Yesterday I had a serious talk with him, based on an incident we’re dealing with with my younger son. He (the older one), extended such grace to his momma, such unconditional love. I worry too about my middle child, who also got the short end of the stick in his younger years. And although he is often thoughtful and kind and endearing and helpful, there are other moments when I wonder if he is the kid that other parents don’t want their child to be friends with. And for good reason. See, I’m his momma, and to know the grief of loving him fully and unconditionally, yet questioning his ability to have healthy friendships, most likely because of stability that I did not provide for so long, crushes my heart. But both/and right?! Then there is his violin teacher, who after I lamented to her about our struggles as mother and son. How we clash, and I’m often angry, and telling her that if he is just ever too much, please let me know. Because we’ve been there, we’ve been too much many times, and dropped. She responded remarkably. She told me that no matter his attitude, no matter what he presents, she will ALWAYS approach him with kindness and positivity. She let me know that she sees her students as a ministry, and prayerfully approaches each lesson. That she is not only there to support her students, but the entire family. Oh the encouragement that this brought, from an unexpected obscure place in our lives, she showed up! She said to me at the end of the conversation, “we all need encouragement”. For some reason that statement was profound for me that day, and has stuck with me. It has encouraged me to look at people differently. People who I think have it ” all together “, they need encouragement too, and I have been striving to be the person that provides it. Another friend who I was certain had it all together just recently said to me, ” we all have issues “. So simple, yet somehow in this season of my life, I’m able to see the truth in that, and strive to be an encourager.

    Beth, just giving you a hug. Because in ” real life “, that’s what I would do. Give you a parting, until next time, knowing, I feel and share your pain, rejoice with you in the victories, hug. <3

    And thank you all for sharing the dark corners, as well as the light 🙂

    1. If you met me, you’d think I’ve got it together. But trust me, I don’t. I have a brilliant facade though. Your story of the violin teacher made me cry.

      So I’m waving at you in the dark

  18. I have a son, a beautiful, wonderful son, who is a ten year old in a twenty-year-old body. And I, too, mourn the things that he didn’t have, and the things he may never have, and I go to the IEP meetings, and I wonder what will happen to him when I’m no longer here.

    I wish we had a Karen.

  19. Big sloppy happy tears for you and Karen and your daughter. Your writing is beautiful as always.

  20. Love, grace and peace on your whole everything. What I get most from this beautiful post is just a need to be real. Gosh, even in our confessional, no holds barred, “24-hours-of-broadcasting-every-thought-in-every-head” world, I realize there are limits to how vulnerable and conflicted we allow ourselves to be with one another. I can complain about my kids but it has to be in an exasperated, funny way. Not a “I am really worried we won’t make it through this” kind of way. Not the whispers of a heart that are tired and sad and lacking confidence. Not the souls who long for nothing more than to be “normal” for a brief respite. I see you, and I’m waving back.

    You’re not alone.

  21. Oh all the feels. All the longing for lost potential and missed moments we want back. Us mommas, us warriors, us protectors of our kids hearts. If only we could change it we would and we do. All the time. No matter how hard it is. Tonight I am lying awake in the dark. My body sore from my days struggle to get a house full of love and people and stuff, so much stuff, ready to sell. Not because I want to move. Nope, because when in separate incidents last year both my daughters were sexually harassed their principle actually said to me in a meeting about why for 30 minutes on a bus my daughter had to be repeatedly exposed to the genitals of a boy in her third grade class, that principle actually said to me “they are good boys who are just being boys.” No need for a change in policy. Nothing serious. No apology. I have to sacrifice my lovely home and neighborhood because my kids aren’t safe at school and their principle is a sexist jerk. I am so angry about the lack of love and concern my actually good kids get in school. I can’t just transfer them because all the better schools are full. Private school is out of reach. I am furious that one lazy selfish man can cause our lives so much hurt. Thank God you have Karen. Leave early and tell her so as soon as you can. I will be packing.

  22. Tomorrow my son is coming home for a visit. He’s on a break from college and he has a dental appointment he made himself. He’s going to show up and hang out with his sister. Hopefully I’ll be able to feed him something he likes. I hope he tells me about all the interesting classes he’s taking. All the new things he’s learning. Then he’ll decide it’s time to go and he’ll get on the bus and go back to his good life. I miss him so much. Eight years ago I was up nights trying to find new ways to help him have any sort of happy life. Doctors, meds, IEPs, therapists, mentors, meetings, family support, we did it all. It was hard work and slowly, slowly he gained ground, and lost ground, and stood up and decided to move forward a step at a time. I’m in awe and disbelief and profound gratitude to the community that holds him up and helps him move forward and every single one of us is grateful for all the light and laughter he brings to our lives.

  23. Waving in the moonless dark, wishing for some anti-bullies. At 18, I don’t think any are going to ever show up. Love, love the depth (and wonderful light, and often laughter) that your posts bring to the surface. Thank you for sharing so much with so many! It’s good to not always feel so alone.

    1. Keep looking. I don’t know where you are, but I will be praying that you find what you need. In the mean time, I encourage you to be the kind of person you are looking for, because someone else is looking too.

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