the waves

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yeah, i know; there’s a typo

In other words, it looks as though we’re entering yet another “new normal,” one that I know that many of you already live. The news came right before we sat down with Dr Dreamy, Brooke’s neuropsych, to hear the results of her yearly evaluation. The timing of the meeting was merely coincidental, but as it turned out, it could not have been more fortuitous.

It seems that we saved Dreamy the difficult task of suggesting that we look into the possibility of seizure activity. He could not come up with any other plausible explanation for just how much ground Brooke has lost since his last evaluation. Last year, her language fell in the 37th percentile. This year, the 1st. By the time he ran through the numbers, Luau and I were numb. We’d been convinced that we’d seen progress. That her language was expanding, that it was becoming more colloquial, more functional. That’s music to my ears, he said, but it’s horizontal expansion. At just shy of ten, she has the language of an early six year-old. Neither of us could protest what we knew to be true.

We talked about what to do. About school. About how and where we might offer more support for her as we move forward. We talked about how difficult it must be for her to sit in a fourth grade classroom every day with the language of a kindergartener. We talked about her anxiety, and how it seems to have peaked again, and how given the tremendous disparities between her and her peers, that shouldn’t be surprising.

And then he stopped. You’ve taken a lot in tonight, guys, he said. Let’s take this one step at a time. Addressing the seizures comes first. And it may have a dramatic effect on everything else. So we’ll focus there and then come back to the rest. We can meet as many times as we need to, he said. Let’s not overwhelm you right now.

It was a good thought, but of course it was far too late.

I walked out of the meeting steeped in guilt. How did we – how did I – miss this?

My dearest friends had answers. I missed it because I’m her mom, not her doctor, they said. I missed it because I’ve been focused on my *daughter* not a list of challenges or a grouping of skills, they told me. I tried – am trying – to let their words sink in.

After the meeting, the girls asked to go to McDonald’s for dinner. Actually, Brooke asked to go to Dunkin’ Donuts for dinner, but was quickly swayed when her sister mentioned the Golden Arches. I can’t remember ever having McDonald’s for dinner. But neither Luau nor I had the strength to say no. I’m grateful that no one asked for a pony.

We sat at McDonald’s and the kids did what they do. Katie chatted about school and regaled us with stories from rehearsals for the upcoming play. Brooke hummed and beseeched us all to participate in her various scripts.

I felt like I was watching it all from underwater. It made no sense to me that nothing was different when I knew that everything was different.

We talked about the invitations for Katie’s twelfth birthday party and how she wants the girls to come to the house so we can all drive together to the party location. We talked about American Idol and we played Max and Ruby. I asked Katie how much homework she had left and we talked about today’s geography exam.

I thought about telling them – but telling them what I wasn’t sure. So I said nothing and we carried on as though things were as they’d been an hour before.

**

A few days ago, I wrote the following. I’d planned to post it today, but that was before.

I nearly balked. It felt wrong, given that it’s so wildly off of the topic that looms so large right now. But then I realized that it’s actually completely right. Because life marches on. There’s homework and school plays and birthday parties and geography tests. There’s Valentine’s Day and singing lessons and gymnastics class. And there’s no pause button while we stop to figure this out. And no matter what else is going on in our world Katie should never, ever be ‘wildly off topic’ for her Mama.

So, I give you my letter to her. Which is no more nor less important than it was yesterday.

**

My Dear Katie,

I love you so much, baby girl. You know that, don’t you? There has been no greater joy for me than watching you blossom into the beautiful young woman who I see before me now. Not a single day goes by, my love — not one — that I don’t wonder how the hell I got so lucky. I could only be your mother by the grace of a God in whom your birth convinced me to believe. There’s no other explanation because there’s not a thing I could have done to have earned the job.

It is an overwhelming honor to help to guide you into adulthood, and it is a ceaselessly startling privilege to learn far more from you every day than I could ever hope to teach you.

Adolescence is not an easy time, sweet girl. I know that. As much as you think that I don’t — that I can’t — understand, I swear to you that I do. Everything is changing, expectations are growing and multiplying and the pressure is coming from all angles and by God, it happens at the speed of light, doesn’t it?

And you’re one of the few who gets the cruelty of the joke — who so acutely feels the magnitude of what is lost for what little is gained in growing up. I try to convince you that it isn’t so — to tempt you with lists of all of the glittery, shiny things you get to do now that you’re older. You see right through me. Through all of us. It’s a cursed talent that.

This is the time that we’re not supposed to get along, you and I. It’s the time when hormones flare and moods shift like the winds and Mamas and their girls, no matter how close, become enemy combatants. And, God, I remember that. You know, from the childhood that you’re convinced that I’ve forgotten. I haven’t, Katie. Not even close. No, the memories loom large. It hurt like hell then and the scars linger still.

But we made each other a promise, remember, baby? We promised each other that when the waves started coming, we wouldn’t let ourselves get sucked into the undertow. We plotted and planned for how we’d do it. The answers were simple, really. We’d keep talking to each other. No matter what, we’d keep talking. And we’d remember Love First. When frustration raged and tempers flared, we’d stop and remember Love and Patience and Faith In Each Other and the Bond Between Us That Nothing Can Sever.

And suddenly, I blinked and here we are. Standing ankle-deep in the water as the waves crash against our legs. This is it, my baby girl, this is go time. Each wave comes with a different threat – Distance, Resentment, Frustration, Sadness. Each one screaming You Don’t Get It and You Never Will, You Can’t Understand and It’s Different For Me. And they threaten, threaten to take us — in.

You called me on something the other night; do you remember? Look at yourself, you said. You do exactly what you are telling me not to. Look in the mirror, lady. (Not those words. You would never use those words. But that was it — Look in the mirror.) And I did. And you were right. When you hit me squarely between the eyes with insight like that, you’re nearly always right. It’s delightfully infuriating. And terrifyingly familiar.

And when you turned my pointed finger around, as pointed fingers so often need to be, you hit on an ugly secret truth of this whole messy business of parenting. You see, it is the undeniable evidence of our own frailties of which we are most afraid. And when you show us the living, breathing proof of our own weaknesses, we respond with an ire far too big for you — because it’s not meant for you. It’s meant for us. And while our frustrations with you are filtered, our anger at ourselves is not. And there’s nothing more raw than the anger that comes from the fear that we’ve failed our children.

So you were right. Right to hold up the mirror, right to say, But Mama, you do that too. And I’m sorry that the anger at me got mixed up in the frustration at you. I’m doing my best, kiddo. It’s not always perfect. But we’re human, you and me, so our best is all we’ve got.

In the meantime, the waves aren’t going to stop coming. So remember the game plan, okay?

We’re going to keep talking. We’ve going to keep listening. We’re going to admit when we’re wrong and learn from our missteps. We’re going to be gentle with ourselves and each other when we screw up.

And above all, we’re going to remember Love First.

Because there is nothing more important to me than my relationship with you. You have – and in so many ways you ARE – my heart.

So what do you think, kiddo? Do we have a deal?

I love you, sweet girl.

Even more than salty french fries on the beach.

Mama

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54 thoughts on “the waves

  1. Jess, beautiful and touching. You’re absolutely right, no matter what is going on around us or what we feel we are buried in at the moment, life marches on. And the things that were important yesterday and still important today. Some, maybe even more so. I love your letter to Katie, and the deal the two of you have made. I don’t know if my own daughter and I are as well prepared for the waves, but we’re in them. But it feels like we’ve made some of the right preparations. We’re off to as good as start in this journey as I think we can be. I have a half written letter to her in my drafts folder as we speak. :) Thanks for sharing yours.

    Keeping you all in my thoughts and prayers. I don’t know where this journey will take you next, but if there is anything I can do along the way let me know. <3

  2. Oh Jess! How I wish I could envelope you in a hug and tell you “It’s going to be OK!” I think the hardest part of all this is the waves of grief. There is no other way to explain it and it hits you out of nowhere. There is a constant need for triage and acceptance. Please know you are not alone in this! And it is OK to take time for yourself. Kate’s neurologist once told me during an appointment for Kate that turned into a therapy session for me…He said I was of no use to anyone, especially Kate, if I did not help myself first. We all love you so much and I am praying for God to give you strength. XOXO! Becky

  3. Jess, I am sending love to all of you on this Valentine’s Day. You know you will get through anything because of the love of your family. xo

  4. I know, Jess, that this may seem wildly inappropriate. BUT: I wish I could throw up for you. I know that everyone wants to lift you up and encourage you and give you hope, and that is a good thing. But, somebody needs to do that other part, too. I suspect that some of those close to you may have already done this, but just in case, here goes. When the “numb” wears off, and those stinkin’ stages of grief start marching through (’cause we all know that “new normal” requires grieving the loss of the “old normal”), as one mama to another, I want you to go somewhere safe, and have yourself a colossal meltdown. Cry until your face is a river. Let. It. Out. Rage at the unfairness. Scream at God. (He can take it.) Get out all the stuff that you can’t tell all the people who want to cheer you up and see you strong. Forget all of them and what they need to see in you. Be weak. Too much “strong” cripples us. We were not made to be tough and strong on our own two feet. Remember that when we are weakest, God is strongest in His power to help us. And, as a woman, you have the unique privilege of grieving with other other women (sorry, guys). And, if there is no woman close by who can do this with you, you send me a message. I may a thousand miles away, but I will do my best to be that safe place. The “new normal” totally sucks. There, I said it. But, my friend, I know it is the truth. Be kind to yourself. I know life marches on, but, sweetie, it is okay to take a “moment.”. Love you.

  5. Good luck!! My daughter is 14 and I still have a good couple of years left on this roller coaster called, my beautiful Bella, her hormones and the teenage years!! Remember to breath and learn to laugh, there will be so many good stories to come out of the teenage years. Most will be funny to you but will make her face red…..ahhh the paybacks. My most gratifying moment so far, chaperoning a school dance!! By the end she told me, “Next time Mom….” I don’t remember the rest because I was focused on the fact that she wanted me there for a next time!

  6. Wow..beautiful! Tears rolled down my face reading this!! As i have a 14yr old daughter who lately only wants to argue and shut me out! Then theres jacob my 4 yr old who is autistic…your posts about brooke remind me of my little guy so much! When i heard the news last night i cried..i cried for you,your family,other families going through this, and my jacob! So much has been going on lately, so much sadnes..and it sucks! I may not “know” you but when i read your writing i just conect i feel like i know you! You are a strong woman and i look up to you!! You are a strongwoman and a wonderful mother!! You and your family are in my thoughts!

  7. Holding you, all of you, with so much love in my heart and making a quiet space for you to feel, think, do whatever needs to be done without the armchair diagnosing and fixing we all so very desperately want to do. I love you, my friend, and I can’t fix it. But I, we, can walk with you in silence and help you when you feel weary.

  8. The fact that you had that conversation with Katie long ago, that you planned for the trauma of adolescence sort of proves the point about you being a terrific parent. You really are a terrific parent. To BOTH of your kiddos. You’re going to figure this out. Love you.

  9. I don’t know where to start, Jess. I love the grace and dignity with which you address your daughter — and with which you accept criticism from her. If more mothers had their fingers so closely on the pulses of their daughters… well. You get my drift.

    Speaking of which, you CANNOT blame yourself for missing things with Brooke. Seizures are horrible, sneaky things. Your neurologist sounds like a good doctor and I am sure that you will walk the path to get to the bottom of things. It may take several tries (which I am finding out myself), but you will get there — and along the way, we will all be there beside you. ((hugs))

  10. My heart goes out to you…thinking of you all.

    I hope you shared that beautiful letter with Katie. It is eloquent, and I know she’ll cherish it.

  11. Oh dear, I remember that day … when the Dr. told us that there was “no normal brain activity” on the EEG. For us it was toward the beginning of our journey into how special we were, how little those around us would truly understand us going forward, and then the opening of a world where many would become close to us because they could understand us. But, your post brought back all of my darkest days, the fear and terror of the word seizure … when it was something so scary and so unthinkable. Wishing you such peace and calm and the feeling of being held and rocked in those moments when you can’t imagine how you will hold it together for one more minute. Know that the road ahead holds many, many moments of joy and love and wonder, that you can not see. It seems that your punctuation of this news with your letter to Katie is fitting, that you know that there will be greatness and laughter again in your future. But, in those darkest moments, hold on and know that you are held, and rocked and embraced by many. BTW, my little lovely is doing awesome now, seizure free for many, many years and making amazing gains every year … the young brain is amazing at healing itself.

  12. I know we haven’t actually met on the internet, but I’d like to offer words of encouragement.
    Sounds like you’re doing a wonderful job with Katie – there’s nothing more precious for a child than a parent who is honest, and will admit when they’re not perfect.
    For Brooke, I’m reminded of something a friend said when their youngest daughter first started the IEP process. IEP meetings are when you, as a parent, want to brag on your child… but instead you have to show them what’s wrong with your child to get the services they need. It seems to me that it’s the same with doctors. Out of love for our children we want to focus on what’s right… but also out of love for our children we need to focus on what’s “wrong.” Seizures are not a fun road – each medicine affects each individual differently. A med that was a useless for my son is the only thing that works for a friend. My son’s primary med was useless for me when it was prescribed for migraines.
    So… breathe, pray, and know that you’re not alone.

  13. Oh Jess. My heart aches for B and you and all of you today. I am amazed at how respectful your 12,000 friends have been in respecting your wish for prayers, and not advice.

    If I had a friend with a “new normal”, which it seems today I do in you, I would send them to “Welcome to the Club” by DOAM. Can you read that with fresh eyes? And know this cloak will get lighter and you WILL get through this and B will still be the wonderful, funny, light up the world with a laugh girl you love.

    Love to you on Valentine’s Day. xoxo

  14. I remember when my first daughter was evaluated for Early Intervention at 8 months old and all I was told, that she was basically developmentally at the level of a 1 month old and how numb I felt after that. Even though I knew she had issues (severe hydrocephalus making it impossible to lift her head being one) it just hurt and numbed so much more having those thoughts put into numbers on paper.

    You are right life does go on. New normals come into your life as a family and know I’m praying for you. We now have our first angel in heaven and her three sisters here that I struggle to raise in so many ways. I love your letter to Katie and I need to do something similar with my girls. &, 5, and 2 I know the waves are coming and I am in no way ready for them.

    Remember to breathe and know that you have all of us praying for you…

  15. I, too, can empathize. I know there is nothing so heavy as your world right now. A world where we seek information and understanding and sometimes that information crushes us. Like a wave against a rock.
    I remember all too well, that feeling that a mother feels with a life changing ‘diagnosis’ and my heart breaks for you.
    I love Lisa’s comment about letting it out. It’s sound advice.
    Again, love and prayers from a stranger 1,500 miles away.

  16. I don’t have any wise or eloquent or even uplifting words today, but I am just thinking loving thoughts for all of you, especially Brooke. So many of us have been on this path. You are so right, tho, that life just rolls along anyway, so just do the best you can, and know that you have much support.

  17. Hugs and loves and prayers for you and your family today. Your letter to Katie is stunning and loving and wise. You are both in good hands.

  18. This too shall pass. I know the wave feels like a tidal wave, but something will work out. The road may be tough,but you don’t have to travel it alone, just remember that, we are all with you. hugs.

  19. I had to come back and read this again, when I had more time to digest your words. First off, I’m so sorry to hear the news was not good for Brooke. You will carry on, and find the answers, and help your girl, just like you always do. That’s not so suggest there is anything easy about any of it.
    And I take my lessons from you on parenting teenage girls. It’s years off for me yet, but i have a feeling i will blink, and we will be there. Nothing terrifys me more than having the kind of nightmarish and rocky relationship, like I had with my mother for years…with one or both of my girls. i pray I can do better. I pray that we can navigate it together. I pray I have the wisdom and strength to guide her through the rough spots. I know it won’t be perfect. We’ll both make mistakes. But I need to be better. Better than what I had growing up. No one should have to suffer the insanity that was my mother. I just want to do right, and do better than that.

  20. You and your family are in my prayers. I especially want to sent out some support to Luau. As another autism dad, I know how much it hurts when you want so desperately to make things better and there is nothing you can do. We are here for you all in whatever way we can.

    John Mark McDonald
    Scintor@aol.com

  21. Jess, so sorry to hear the news on Brooke. Sigh. My heart to you.
    On teen girls, add in seeing the humor in the process…the other day, when my 16 year old daughter was leaving the house after a weekend sick in bed, my husband said to her,”Feel better, honey.” She loudly replied, “Don’t tell me how to feel!!” Gotta laugh at the absurdity of it all.

  22. Jess, I want to tell you so many things today. First and foremost, you are a rock and you have the steel in your spine forged by this thing called Autism and your love for your daughter. As a community, we hold you. Please go back and read your Welcome to the Club post, because shifting from Autism as a Mental health / Neuropsych realm disorder and fighting for awareness to Autism as a Medical / Neurology disorder and having to fight for medical treatment is a big shift. Its like getting hit all over again with the diagnosis and you need to go through the same grief/release/anger/steel-in-the-spine cycle. And I have no doubt that you are doing and will do the absolute best you can.

  23. Jess, what a beautiful tribute to Katie, she will treasure this always. I’m so sorry, the waiting is terrible, and the knowing sometimes is too. Make sure you and Luau take care of yourselves as well as Brooke. Our thoughts are with you and your family.

  24. Brooke is beyond amazing. She will make it through this and so will you. Please don’t beat yourself up. You are a great mom.

  25. The EEG data is good to have, right? And my heart cool, smooth stone with a hidden core of hope inside. What a time this is, and what dichotomy in child-rearing. You have many Mamas loving you!

  26. Ok, I have been away with my family and am just now catching up. I want you to know that I am carrying you. Right. Now. So you do what you do – -collect the data, analyze the circumstances from every angle, consult the experts (but then go with your instincts), stay flexible, move with agility and with purpose. And I will do what I do – – pray for you and your family with fierce faithfullness, send you focused energy and claim now the breakthroughs that are to come for Brooke down the line. You don’t need to worry about that because I have it covered. I have you. I really do. So go . . . XO

  27. OMG. This Dear Katie letter is so beautiful and so true. You hit the nail on the head when it comes to my parenting thoughts. We are so afraid of our own weaknesses manifesting themselves in our children. Your words bring life to my feelings. Thank you

  28. You have every right to be devastated, to be scared. I’m only connected to you through reading your blog, yet I couldn’t help but feel my heart sink when I read about the results. It’s not fair–of course it’s not fair–and it’s absolutely horrible, all around. I feel for you, for Brooke, for all of your family during this undoubtedly difficult time.

    I can only speak from personal experience. When you don’t know what you’re up against–when you don’t know that you’re up against anything–it’s impossible to fight it, to overcome it, to live with it. I remember vividly the first time I went to the psychiatrist, someone who was able to put words to what I was experiencing, someone who was able to offer solutions; it was a relief. When I first started poking around online, and realized that I fit the mold of Aspergers pretty darn well, I felt the same kind of relief. There’s a name for this. There’s an explanation for why I can’t handle people a lot of the time, for why I couldn’t survive high school. There are strategies for me.

    Seizures are a completely different beast, there’s no denying that, but I hope that your experience is the same. That you can move past the initial terror and devastation, and use this opportunity–as I know you will–to help your girl. I hope that you’ll someday look back on this time, and recognize that along with the pain, there was also a new beginning to be found. I have to believe that this time, of finding out what you’re dealing with and learning how to combat it, is the beginning of things getting better, not worse.

    I know that you’ll do everything you possibly can for your girl. You’ll surround her with medical professionals who can help, you’ll do everything you can to fight this new demon, and you’ll continue to be her mother and love her with all of your heart. Please, do your best not to blame yourself for not knowing sooner. You did your job, when you took her to the ER; you did your job when you worked with he doctors to schedule an EEG. Please, remember that you did exactly what you were supposed to. You were focused on your daughter, and that is not a failing.

  29. Jess-this post really is everything. It’s how life hits highs and lows, and how we are all so lucky and unlucky at the same time. Hugs to all of you. I hope that along this journey you find comfort. Thinking so much about you. xoxox.

  30. I’m here at 15 with my oldest, and I’m telling you…keep talking like you do and like you are and the waves should be much easier to surf. There have been bad days and hard times for my first kiddo, but while I’ve waited and waited for the prophesied rift to open up and swallow my heart, it hasn’t. Because we talk. Chatter. Gossip. Sometimes she closes up and the talk bounces off of her, but more often than not, she comes to me. I didn’t do anything ‘right’ or anything that any other parent does, I’m sure; it’s all luck and love. But if there’s anything I can take on as having helped, I credit the talking.

  31. I am hoping there will be a silver lining to the cloud of the diagnosis re Brooke. If the seizures can be treated medically, perhaps she will find herself more free to blossom even beyond the growth you have seen. Sometimes knowledge, even bad news knowledge, can be power. I am confident that you and your team will handle this latest challenge well.
    Wishing you good news days in the future.
    And re Katie, wonderful letter you sent her and congrats on being so proactive and honest with her. I had some rough years with my daughter when she was in middle school but she now is one of my strongest supporters.
    —– Joan in PA

  32. Sending love and prayers for your daughter and your family. I am new to the world of autism and of everything that goes along with it, it is the seizure risk that scares me the most. I hope they are able to find answers they can work with to help mitigate the seizures and allow her to resume making gains in her skills.

    She’s a very blessed girl to have such a loving family.

    All the best to all of you.

  33. I feel like you get so many comments that mine will get lost in the rest, but I wanted to let you know that I also have a 9-year-old daughter with high functioning autism. She is a lot like Brooke and I love reading your blog. My daughter gets occasional absence seizures when she is sleep deprived and so I do what I can to keep them at a minimum.

    I wanted to tell you what helped us. A few years ago some parents of another spectrum child told me they did the GFCF diet. I thought it was nuts, my doctor said it was BS and it didn’t make sense to me, how food could affect the brain. But after trying out the diet I have found out there is a lot to the “natural” route. It is the difference between low and high functioning autism for her. She is bright, brilliant, sassy and wonderful. She is an artist and an actress, she laughs and cries and loves like other little girls, but, well, you know better than anyone else what the challenges are.

    I know it is hard, but I want to urge you to start to try the natural route. Dump the chemicals in Micky D’s and do the organic and the dairy-free, low sugar, fish oil etc. It is a lot to learn and implement. But it gets easier and easier and is a heck of a lot better than the seizure meds. Just try it for a couple of weeks. If it doesn’t help you enormously, then ditch it.
    My heart aches for you guys and I want you do discover and find joy in the success in the only thing that helps us.
    -Shena

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