by example

*

I hear the doctor’s words, but they’re coming at me from a distance, as if under water — or through one of those telephone pipes the kids love at the playground. She’s inches from me, but miles away.

“I just want to prepare you for the fact that we will almost definitely want to admit you. We’ll need to keep you overnight for observation. Although it looks like there hasn’t been a cardiac event up to now, we need to be sure that the symptoms that you’re experiencing aren’t precursors to one yet to come. We’ll keep you on the heart monitor and check your cardiac enzyme levels three times over the next twelve hours.”

Unbidden, the tears begin to fall.

My babies. I’ve got to get home to my babies.

To Brooke — she can’t sleep alone. We don’t know … We just don’t know.

The tears squeeze my chest; with them, what was discomfort becomes unbearable pain. I can’t breathe.

My babies.

The young doctor looks at me with earnest, concerned eyes. She sets a gentle hand on the railing of the gurney. “You did the right thing,” she says, “you need to be healthy for your girls.”

I will hear almost this exact sentence again from a different doctor not even twelve hours later. Both times, I will drown in the words. My girls. I have to be okay for my girls.

Throughout the night, sleep will tease but it will never stay long. The constant beep beep beep of the monitors, the nurses in and out of the room with a constancy that makes me want to call out, “Grand Central Station” (but humor fails). A pattern emerges — Date of birth please? Vitals, med check, blood draw … Date of birth please? Vitals, med check, blood draw … Date of birth please? Vitals, med check, blood draw.The faces change. Some are gentle, humane. Some are not. The flourescent lights are flipped on without regard to the hour. At 3 am, as the nurse growls trying to find a compliant vein, I tell him this is the worst hotel I’ve ever stayed in. He doesn’t laugh.

Luau didn’t want to leave, but I pleaded with him to go. I needed him to be with Brooke. “Until we know,” I said “… until we know, that’s where I need you.” He was still reluctant. I told him that I needed him to leave for me. So he went, leaving me alone, and yet in a room suffocatingly full — full with the fear of what might be happening, full with the guilt of having brought it on myself, full with what I won’t be able to unknow, full with the work that I have to face is ahead.

In the morning, they let me go on my own recognizance. My heart is fine. No, my heart is healthy. Different. The pain has subsided; but it hasn’t gone away. It’s three days later as I write and it still hasn’t gone away.

They leave me with nothing. “See your physician next week and look into tweaking your anxiety meds.”

Thanks, guys. You’ve been helpful.

But that’s okay; I’ve seen this movie before. Different stars, similar plot: Diagnosis. Pat on the head. Have a nice day.

I can find my own way. I will make my own map. I’ve done it before. I’ll do it again.

Over the next few days, a plan takes shape. Small changes. Somewhere to start.

Nothing big — no weeklong trips to Canyon Ranch, no tropical vacations, no month off from work. Just baby steps that will, in time, make a difference.

So this is where it starts. Not tomorrow, not next week, now.

Gently, lovingly, forgivingly, now.

**

Step one — Take the pressure off where it can be taken off.

I can’t turn off my Mama duties at will. Doctors, therapists, educators, team meetings, forms to fill out, e-mails to send, and people to nail down remain.

I can’t shirk my responsibilities at work. I have to make a living or we won’t eat.

But the rest? The rest can wait.

Like writing — I will write when I am compelled to write — not because I feel like it’s expected.

Saving the world is going to have to hold off until I’ve saved myself.

Step two — Rest.

Really, really rest.

Shut down.

Not halfway; completely.

Fill the tank.

Replenish – mind, body, soul.

Step three — Become reacquainted with these.

trainers

I need a physical outlet for all of this. Writing is one thing, but, as much as Luau may complain that I destroy my keyboard, I can’t pound my stress into the letters.

The gym.

The pavement.

A path through the woods with a friend.

I don’t care where or how, but every day, I will move my body with purpose. Because, as I proved this weekend, the emotional is physical and the physical is emotional and one can bring the other to its knees.

Hold me to it, would you? This one isn’t easy for me to stick to. I have a list of excuses a mile long.

No more.

Step four — Stop pretending that this is food …

Unknown

And that this is a paper weight …

57443063_5-feet-on-scale

Get back on the scale. Be mindful, not fearful, of what it’s telling me — and remember that there’s a lot that it can’t tell me too.

Listen to both.

Step five — Make time for an old friend.

Whatever God may mean to me today, let Him back in.

Start forgiving Him.

And myself.

(One in the same really.)

We don’t have to talk yet.

We can just sit quietly.

Together.

Listening.

That’ll do for now.

**

That’s it.

That’s all I’ve got.

But it’s a lot.

It’s a place to start.

**

Today is my Katie’s 12th birthday. TWELVE. For the life of me, I can’t fathom how the hell that happened. It was like some dirty trick of time-lapse photography. But by God, I could not be more proud of that child. And along with all of the gifts that I will wrap up and give to her today, in the end, the one that will matter the most is a Mama who teaches her by example that she is worth taking care of.

Happy Birthday to my beautiful girl. I love you so very much.

37 thoughts on “by example

  1. Happy Birthday to Katie and to Mama too!! One day at a time is all you have to do!! Enjoy how your beautiful daughter is growing into a wonderful young woman…that will surely bring you joy! xo

  2. I am so sorry you had such a scare. Especially after everything that has been happening with Brooke. I think this is a definite oxygen mask moment.

    You are never far from my thoughts and my prayers, my dear friend. I love you.

  3. Yes, one day at a time. You will become healthy. Your girls need you and selfishly so do I. Happy Birthday, Katie, my beautiful granddaughter and happy new day to you–each and every one of them.

    I love you,
    Mom

  4. As a friend says to me, take care of sweet M’s Mom. I had this wake up call two years ago after a long cycle of exhaustion, stress, caffeine & sugar addiction. M wasn’t sleeping & we were working on treating his seizures. It all became too much. You will find your path to wellness. Sometimes your family can join you in it but other times it will require a tiny bit of what seems like selfishness. 🙂 It’s not. It is the best gift you can give to yourself & them – a healthier you.

    Hugs.

  5. Yes, yes, yes, yes, yes.
    Proud of you. Very very proud.
    And we’ll do it with you.

    Happy birthday Katie! You’ve made my world a better place.

  6. I read this, went over to your FB page to say happy bday to Katie, and came back here still not knowing what to say. But you’re on the right track. We love hearing from you so often but we’ll survive (somehow!) if it’s less. 🙂 So proud of your commitment to the nutrition, to the exercise (yay!!), to the saying no to the things that are not critical. And really the only three critical things are living within the same four walls as you, IMO. {{{hugs}}}

  7. My mantra…
    Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest? (Luke 12:25, 26 NIV)
    Take time for yourself. You know you have a good doctor when they are honest and tell you that if you don’t help yourself, you cannot help anyone else! BTW, I have been where you are! I hid under a heated blanket for a month when I was alone. I finally decided that it wasn’t working. Got my meds changed and made the decision to get off the couch. My girl needed me to be whole and her twin brother was losing the little he was getting. You can do this! xoxo! Becky

  8. We’re all with you!! Whatever you need to do, we are behind you!! And a very Happy Birthday to Katie…!!! that girl is going to change the world!!

  9. Having already said happy birthday to Katie, I will now say this: I am praying for you, Jess; earnestly and lovingly. It’s the most I can do for you.

  10. I’ve been through similar things. I was on a heart monitor for a week. It traveled with me. Diagnosis? Sleep. You need sleep. After thanksgiving I stopped refined sugar. Every so often I have a little then realize how bad it makes me feel and I start again. What a difference! As a bonus I lost 15 pounds. But getting rid of that junk makes me feel better. If I put in junk I feel like it. One step at a time. One step at a time. Take care. I don’t know how you have been writing every day. Do it when compelled. Rest.

  11. Your plan sounds fantastic! As much as I love reading your posts every day, I’d also love knowing that you’re getting an extra hour of sleep. And happy birthday to Katie! A healthy you is a great gift to her. 🙂

  12. Your experience has “sunk in deep” for me…and probably a lot of other women out there, Autism Mom or not. We have to live forever, don’t we. So we better start taking it seriously. Thank you SO MUCH for sharing this. And as for the humorless nurse at 3 a.m. – 😛 pbbbbt! 😉

  13. Like any other recovery program– for that’s what this truly is about, recovering yourself, reclaiming yourself — one day at a time. And lean on your friends for support. Open up and share YOU with the ones who are there for you.

  14. Happy birthday to Katie! And her mama is the best present she’ll ever receive.
    God is here for us even when we’ve been ignoring Him for a while. However we understand God, the strength and comfort we are able to take from being in His presence are a gift forever. I’m so sorry for your scare…. You’ll make it through. You’ve got Luau, Katie and Brooke all on your side. Let them support ou through this and give yourself permission to chill with God whenever you make the time. Be sure to MAKE the time! It doesn’t have to be long, but make time each day to just talk to the Big Guy. He’ll talk back when you least expect it!

    Major cyber hugs and prayers coming your way!

  15. One day at a time….that’s all we can do. You have been in my thoughts. Prayers for you.

    Happy 12th birthday to Katie!! She’s a lovely young lady.

  16. Dear Jess,

    I have been where you are. And I have also gotten better, anxiety free. What you discuss above are all GREAT ideas and they will help you to get partly better, but they are not the complete solution. I have a person who taught me how to become anxiety free (a therapist), well, not really anxiety free, because that doesn’t exist for people like us, but mostly anxiety free. I have led many women to that same place. I can lead you there too. No charge, no gimmicks, just because I feel your pain and girl, you need all the help you can get, but the people you are tapping for help don’t have the answers. Don’t feel bad, I went to Mayo Clinic in Minnesota and they didn’t truly have them either.

    After I had my second son, he was hospitalized in the NICU, had four surgeries, almost died countless times and eventually had a brain shunt placed. My first inkling that my eldest had autism was when I was called in the NICU by his preschool. They were kicking him out, they were the second one to do so in a month.

    It was a stressful time. I went through all of the ‘right’ channels to help myself. None of them made my anxiety better. Because no one really shares the secret of anxiety with you. So, I’ll share it here.

    Anxiety is like a fire burning in your brain. Your natural reaction in this fire is to escape it. Makes sense right? NO!!!!!! Each time you try and escape it, it’s like pouring gasoline on a fire. It makes it worse, stronger, rage bigger, brighter and spread faster. The only thing to do is face it, accept it, let it in and LOVE it.

    I myself can’t believe that I’m saying those words, they look ridiculous on paper, but you need to hear them. And you need to hear how to make them work. It’s a type of exposure therapy (you can read about it, it’s real). I have a therapist who saved me and healed me who you can use. She does therapy via skype and she had gone on to help many of my friends. Or, I can just share with you what happened to me. Or, you can even talk to these people who will vouch for me on FB. I’m not a crazy person and you need to hear the words that I have to say to you.

    I can help you if you’ll let me. I hope you won’t be too proud. You are an awesome autism advocate, but this is my wheelhouse and I am awesome at what I do – which is helping women with anxiety.

    I’m posting the list of names of FB – of the therapist and the people who will tell you that I’m not crazy – OK?

    • Carolyn,

      Thank you, love. I don’t think you’re crazy. Pushy, perhaps, but not crazy. 😉

      I’m so glad that you found something that works so well for you. It’s so important for each of us to find our own path through these woods and ultimately to our own health / wellness / peace / salvation. But so too, we’ve got to respect one another’s journeys, even when they differ from our own.

      Thank you for sharing your experience so that I can explore it on my own, and thank you for caring.

      Warmly,

      Jess

  17. Oh Like, like like like. Well said AND I HAVE BEEN LOOKING FOR BROWN SUGAR CINNAMON POP TARTS FOREVER!!!!! They are my all time kid favorite memory food. Consider yourself hugged. If we were friends we would find something to laugh at and something fun to do to break the anxiety that has built up. I have determined I must laugh really hard every day so I stay healthy. The medical community said so. Wish I. Had a joke for you. Hugs again, debbie

  18. I’m not happy that you had that scare but I am happy that you are heeding the warning and taking a step back for yourself. No-one here wants you to sacrifice your health for our reading pleasure. You are right that there is no better gift for your daughters than taking care of YOU. Today’s my bday too 🙂 I hope Katie has the happiest of days.

  19. I think being the hardest thing about being a parent of a child with autism, is taking care of ourselves. We pour everything we have into our children…finding the right doctors, therapists, teachers, programs and we run ourselves ragged. You had a major scare but you are going to be ok. Sit down count to 10, and start looking where in your schedule you can fit in time just for you. Then look again and find time for just you and Luau, because that is needed too. You will figure it out…

  20. Oh Jess. You cover a million miles in a post and never make me feel like I’ve covered too much ground until I try to respond in a meaningful way. I wish your hotel stay had been more pleasant, and yet, maybe not, because the wake up call needed to be shrill and jarring and those flourescent lights were all part of it.

    We don’t expect you to do one single thing. Those expectations are built from predictability, but I would follow you, care for you and admire you no less if you wrote once a year.

    Happy birthday to your darling girl. I’ve “known” her since she was 9. She is growing up amazingly. Celebrate her thoroughly! xo

  21. This is right on! When it comes to step 3, can I suggest trying new things until you find something that makes you feel the way you’ve described skating for Katie? It might be something you’ve never thought of trying before. For me, I started karate almost-two years ago, along with my kids. It’s something I would never have imagined myself doing, and really only did because it was something we could do together that we were all rank beginners at. Now, my kids have moved on to other interests and quit karate, but it does wonders for me and I can’t imagine stopping. It keeps me steady, now my anxiety has decreased enough that I’ve gone off meds and don’t need therapy anymore. There is really just nothing quite like yelling “hi-yah” while kicking the %&(# out of a wavemaster, for getting my tension out. 🙂 Hope you find something you love as much.

  22. Oh Jess… You are doing what is best… and you have the love and support of hundreds. ME INCLUDED. And, I am so happy that you are spending time with the creator of the universe. He loves you, ya know. We all do!!!

    Blessings today!

  23. BTDT, got the t-shirt…. in my case, it was a broken wrist that 5 years later still gives me trouble… sometimes we just won’t listen to that quiet little voice any other way, so God has to grab us and MAKE us pay attention… 🙂 You have a loving supporting family, and at least a jillion online supporters, so we are all behind you on this – do for YOU…. make it as much about you as you can for quite a while, and then ever so slowly, add in the rest of the world (outside your family), but always stop and check to make sure you have left enough room for YOU.

    And happy birthday to Katie, who truly is a remarkable young lady (just like her mother!)

  24. I am so pleased to see you’ll be taking better care of yourself. My daughter is autistic and is diagnosed as moderately mentally retarded. After gaining weight and having heart palpitations I have made a concerted effort to lose weight and put my health first. She will need me for the rest of her life and for as long as I am blessed to live. She will never understand the concept of death, the finality of it, why did momma leave, where is momma, when is momma coming home…never, it will always be beyond her intellectual level. So the days my fears grab me, threaten to take me into a depression abyss, and shake me to my core, instead of reaching for some type of junk food to soothe myself with, I cry, pray, and get on my treadmill.

  25. These are all completely doable, smart things you can do for you and your family.And you can’t save the world unless you save you first. Good for you for taking these steps.

  26. Wow. You have done it again. Another amazing and insightful post. Maybe we (you and your readers) should all do this thing together…this thing called taking care of ourselves. Huh? What’s that? It’s probably been on the top of my “To Do” list for two decades, as I’m sure it has yours. Happy birthday to your beautiful daughter. Enjoy her today. And take an extra pause for yourself to reflect on all of the riches she has brought in to your life over the past twelve years. Nothing better than that for a little well-earned soul food. xo

  27. Wonderful. So beautifully done that I will share it widely, because I need to take these steps for myself (some of them I’ve been trying; others not so much) and I’m sure that many people in my life also need to be reminded to take these steps too. Thank you. And now that you’ve shared the steps with all of us, please step away from the computer and put on those sneakers, or take a long bath, or schedule time with a friend to talk. If we all do the same, perhaps we’ll miss your daily posts less and we’ll appreciate the posts that do arrive even more. ❤

  28. Happy Katie’s birthday to the wonderful girl herself and to her amazing mom, who inspires every day. I think your five point plan is worthy of you, and that’s saying a lot!

    Karin

  29. I needed to read this today. I suspect you have kick started a few of us to make some changes. Happy Birthday to Katie. Wishing you both a wonderful time away together.

  30. What a lovely post, although I know this is a very stressful time for you. I, too, have suffered from depression and anxiety. I had a moment when yelling at God about it all that I heard in a very small voice, choose life or death. It was simple, i chose to live, it is not always easy, but it is worthwhile. I hope that you will hear the phrase and quote that will bring you to renewal and hope. Thank you for your honesty. DAF

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