eeeeeeeg

Yes, we took pictures of Brooke getting an EEG. Why? Because we billed it as an adventure. And when on an adventure, one takes pictures.

Right?

Right. 

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Her Royal Highness, Princessa Brooke, boned up on the Here We Go For An EEG social story on the ride to the hospital. (For the record, she pronounced EEG as a word .. Eeeeeeg … and I didn’t correct her cause it was sort of ridiculously adorable.)

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Within a minute of the above photo, she came down with a horrible stomach ache, was kind of a hot mess and the rest of the car ride pretty much sucked, but hey, the picture’s really cute, so we’ll go with that. 

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We brought a couple of close friends along with us to the Children’s Hospital. Incidentally, did you know that because it’s called Children’s Hospital it doesn’t necessarily mean it’s a children’s hospital? I didn’t. Until I saw the signs for OB/GYN and Geriatrics and then, well, yeah, I knew. (Random fact courtesy of Diary. You’re welcome.)

Despite the signs for pregnant and elderly folks, it was obvious that we were in the right place when the woman at the front desk dipped into a royal bow when she saw Princessa Brooke. I mean, c’mon, how cool is that?

Oh and we made a new friend right away. Brooke named her Rosie. And, as you can see, she was having an Eeeeeg too.

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I had a full bag of tricks available for operation distraction, including this – the world’s coolest fidget. The whole thing is super stretchy rubber. The mice get smushed in and pulled out of the holes in the cheese. Details below on how to get it**- (and no, I don’t have any connection to nor do I receive anything from the company; I’m just telling you cause I think it’s cool and I like you so I want to share cool stuff with you.) Moving on.

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The intake nurse, Miss P came and sat with us for a few minutes in the waiting room. She indulged my girl like nobody’s business, even sitting through Brooke’s version of Simon Says (which is basically Follow the Leader) and singing Happy Birthday to one of the mice. I believe it was Mousy. Which may or may not be the one on the left.

The most amazing part of all of it was that she TOOK HER TIME WITH US. Not once did I feel like she was in a hurry. Or had to be somewhere else. She just listened.

When Miss P left, we took the chance to look through the pictures in the social story one more time. By the time that the technician came into the room and introduced herself, Brooke said, “Hi, D, I’m going with you now.”

D brought us back to her ‘castle.’ Everything she showed us was royal and everything she did was ‘fit for a princess’. She was even kind enough to remove the pea from the bed before Brooke climbed up. I think that one was lost on Brooke, but her parents got a chuckle out of it. 

D explained everything she did – from showing Brooke the silly lipstick crayon that she would use to make marks on her head to letting her see the color of each and every one of the twenty-eight wires before attaching them to her head.

It mattered. Every bit of patience mattered. Above all, her obvious respect for Brooke mattered. She talked TO her. I was grateful. And relieved. And sadly, a little surprised.

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She told her that she was doing her hair. Princesses, after all, must have their hair done. Brooke took us though the Beauty Parlor script from Elmo’s World. “Rapunzel, Rapunzel, let down your hair!” she said, in her deepest prince voice.

Who would have thought we’d have laughed? We did.

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I have no idea what’s going on here. It was just really cute. (She’s smiling under there.)

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Blowing a pinwheel? Fun. Entertaining even. And over after twenty seconds, max.

She had to do this for THREE MINUTES. That part wasn’t so much fun.

My favorite part was when the tech said that it was time to sleep. I’d told the intake nurse that it wasn’t going to happen. This just isn’t a kid who falls asleep outside of her bed. And even there it takes her a good forty-five minutes. But they assured me – sleep deprived, she’d drift off. I knew better, but what the heck. It’s your dime, kids. Give it your best shot.

The tech spoke softly. “OK, Princess Brooke, it’s time to sleep now.” The lights went off. It was nearly dark in the room. I knew there wasn’t a snowball’s chance in hell that she would sleep, but I didn’t want to seem uncooperative. I tried to sound like I meant it when I said, “C’mon, sweet love, we’re going to take a little nap now.”

Right.

Brooke pretended to snore. Loudly. I tried not to laugh. She said, “I’m sleeping.” I tried harder. She stage-whispered, “I’m really awake.” I tried even harder. A phone rang in the hallway. She said, “The telephone woke me up!”

It was hilarious.We finally gave up and I laughed out loud.

Taking off the leads was awful. Brooke yelped in pain and began to cry. Then the tech used what should have been a warm towel to get the glue out of her hair, but the water was hot.

Brooke shrieked. It was just too much. I asked the tech to take a break. I picked up my screaming, crying girl and carried her to the bathroom. As we got inside she yelled through her tears, “I’m sorry!”

I knelt down to her. “Why, baby? What are you sorry for?”

“Because I’m crying,” she yelled back. My heart nearly exploded. “Oh, my sweet baby. There’s nothing – nothing – to be sorry for, OK?”

She nodded her head, then said, “That means ‘yes’.”

We went back into the room and asked the tech to use a cooler towel. A soon as she finished up, Brooke changed out of her princess dress and we all got the heck out of Dodge. We were done.

In the car, we asked what she wanted to do. Anything – the day was hers. Any food, any destination. Whatever she wanted.

Our first stop was McDonald’s. Duh.

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My child –  who weighs fifty pounds soaking wet (with a dumbbell in her pocket)-  ate THREE of these. With fries. And a bagel in the car.

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And then decided she wanted to go to the zoo. Her parents were beyond exhausted, but couldn’t say no. Besides, these birds weren’t gonna feed themselves, people.

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An “Uh Oh!” turned out to signal the demise of Brooke’s shoes and the end of our time at the zoo. Daddy had to give her a lift back to the car. Doesn’t look like anyone was worse for the wear.

**

In the end, it was a good day. Exhausting, but in its own way, good. I have never been so proud of my girl. Three years ago? Two years ago? Even last year? Not a chance this day would have gone this way.

But my girl has been filling her toolbox. And we have filled ours. Together, I’m not sure there’s anything we can’t get through.

As we walked out of the EEG, the tech stopped me at the door. “You guys are doing a really great job with her,” she said. I bit my lip. I didn’t want to cry. My girl had finally stopped sobbing, I didn’t want to start. But I was touched to my core.

Not just because she said it, but because in that moment, having done what we’d just done, I believed it.

Parenting is a job that doesn’t end. The work never stops. There are no completed projects. And parenting a child with challenges is a whole other ball of wax. We don’t get to rest on our laurels – ever. There’s no break.

But what there are are moments like yesterday – when we get to look back, see where we’ve come from, acknowledge where we are and say, “We’re doing OK. Maybe even a little better than OK.”

Whatever comes of the testing, so be it. Our girl will still be our girl – same wonderful, bright, quirky kid we know and adore beyond all reason. Same kid who lights the world with her smile and  powers it with her laugh.

So we’ll face whatever we have to. With love, with patience and with as much grace as we can muster.

And of course, with a princess hat.

As you do.

Ed note: ** I’ve been told that the hot link to the cool fidget isn’t working and I can’t seem to fix it. The company is called Pocket Full of Therapy. Click –> HERE <– and type ‘cheese’ into the ‘search catalog’ to find the toy. Sorry for the confusion.

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47 thoughts on “eeeeeeeg

  1. You always bring me to tears!! not of sadness, not of pity – but out of such joy in the way you describe your love for Brooke through your words. I don’t even really “know” you and I KNOW you are doing a great job with her, for her…… The proof of all the effort was your wonderful day with the “eeg”! So hoping that all the results are positive, but, like you said – she will still be the same beautiful, loving child she always is – no matter what!!

  2. The compassion you show to Brooke (hell everyone) is nothing short of exceptional. My charge of late, is to connect with self compassion, which as YOU know will in turn be given to everyone. Trying to replace anger is a tough one, but because of you DOAM, I am reminded of just how to do that. Sounds silly I know, given my age and what I do for a living, but we are unfinished business aren’t we? I believe that our children come to us to teach us what we didn’t learn earlier in our lives. Which brings me to you and Brooke. So thank-you from the bottom of my heart. Thank-you:) xo.

  3. I adore this whole post, minus the painful leads. It did seem like an adventure! It’s amazing the things that can be accomplished – yes, accomplished- as teams. Kudos to you and Luau and HRH Princess Brooke.

  4. So she didn’t fall asleep? Could they get any of the info they were looking for? When my son had his I thought for sure he would not fall asleep but he did (however, he was all of 4 years old so easier for us to get to fall asleep). good luck with the results! You are right – she’s still the same girl you took in that hospital no matter what the results are coming out!

    • no idea if they got enough info. i hope we don’t have to have another one! i’m a little ‘adventure’d’ out. :)

  5. Princess Brooke is a rock star as are her royal parents. Does that make me the Queen Mum? I can handle it, you know!!!

    Love you all,
    Self Proclaimed Queen Mum
    Mom

  6. You are so good at knowing exactly what your child needs. I am so glad that 99% of this was a lovely adventure for Brooke. Thank you for sharing your story with us so beautifully, and with pictures, no less. You are always an inspiration.

  7. I love how you took something scary and turned into a wonderful adventure. You are an amazing mom! Hoping the test results come out negative but like you said… No matter what she will still be the beautiful little girl she is now. And I have no doubt that whatever the good lord decides to dish out to you… You WILL handle it with thr same grace you have everything else.

  8. Bravo. All hail Princess Brooke and her king and queen (or duke and duchess or whatever royal titles you prefer) of a mom and dad!

  9. Love this post. We did the same thing when Matt checked in and had to get his EEG. It was a huge adventure.

    What amazes me the most is the patience, caring, and love that the majority of people who help our kids have. It makes things a little easier for Matt and I’m so grateful.

    I hope the results come quickly and you have good support for next steps. We just went thru this last spring so please let me know if you have any questions and could use a fellow Mom’s support. =)

  10. We had a hospital visit last week. Wyatt was calm the whole time and did his best to go along with the nurse and drs wishes. I am happy that he is finally in a place where he is confident enough in himself and others to be able to handle these types of things without losing himself to fear and anxiety. I was so proud of him and am so happy to hear Brooke is growing in her confidence as well.

    Glad the 1st part is over…

    Keeping my fingers crossed.

  11. We’ve been through more EEG’s than I can count (including one where Nik freaked out so badly that he managed to escape from a papoose board, ripping out an IV in the process; he was four). I know full well how this COULD have gone.

    I am moved to tears by yours and Brooke’s creativity, the courage she showed, and the compassionate patience of the staff. All of it. And praying that you get information which leads to answers. xo

  12. I am so glad that Princess Brooke made it throught her EEG and that the Royal King and Queen made it too!!! Our little prince will be doing the same in a few weeks. The courtship has added a MRI to the the list of acts that will need to be performed. It will also require an overnight stay and sedation at the palace as our prince will not let anything I mean anything near his head. I will say that Princess Brooke and you, Queen Jess, gave me great hope by sharing about your royal adventure to the Hospital Palace. It helps to make this Queen of Dawsonville a little less anxious about our upcoming visit.I mean REALLY helped me a lot. So here is some princess fairy dust and an extra royal crown to say THANK YOU!!!!

  13. Such style!
    Kudos to all of you – technicians, the whole gang – for making something scary seem…okay.

    I know this stuff is overwhelming, but looking at the pictures of her, I still see the strongest kid in town. Don’t let her size or autism fool you.

    She’s a star.

  14. That was beautiful! I’m so proud of Brooke and happy for you all! It’s the BEST feeling when you can look back and see how far you’ve come. I often feel the same about my girl…though it’s only been 6 months. The past two weeks or so she’s been going through a regression. I have no idea why and it’s breaking my heart. I feel like she’s slipping away from me and all I can do is watch. I’m waiting and praying every day for signs that she’s getting through this down slope and back on track. It’s painful to watch, especially knowing how far she has come and what her potential is. Your story today gave me a little needed inspiration. This too shall pass…. Thank you Jess.

    • oh, regression is so painful. so, so damn painful.i’d submit that it might seasonal – we always struggle (as do many, many here) with seasonal transitions. spring to summer can be the hardest for school age kids, b/c the end of school crazies (as our teachers call it) descend on everyone (teachers, typical kids, everyone) and structure tends to fall apart. lots of special activities (ugh) and messed up calendars (ugh) causing upheaval in the routines can throw our little ones into a tail spin. the more structured we’re able to keep home during those times the better. hope that helps a little. in the meantime, it’s so hard to watch.

      hugs.

  15. Oh man, if we ever have to have (another) EEG, I am totally traveling across the country to track down D and the rest of those fantastic people.

    • or – send your folks this post and teach em how to do it right. (except tell em to be more gentle on the leads and check the dang water – now that would be perfection). :)

  16. You are incredible! Your ability to help your daughter through her challenges is so inspiring. Thank you for sharing and teaching us all.

  17. Love this… it reminds me so much of trips to the opthalmologist with Ryan (severe autism plus pediatrice glaucoma… yes ma’am… such fun) and again, you band-aided my heart with the acknowledgement that we can’t just take a break. Thank you so much for sharing your heart!!!

  18. Thank you for sharing your light today. It has been a terribly difficult 24 hours on our homefront. One of my weaker moments last night turned into a sleepless night for Jonas, my husband, and I. This morning I became unraveled. I found myself grasping at straws of sanity, balance, and hope fruitlessly. They simply trickled through my fingers like water. I cried, pounding my clenched fists to my head, vocalizing what I never thought that I could nor would. “I can’t do this anymore!” I burrowed my head under the blankets as my son screamed and my husband struggled to comfort him. Depression and sleep-deprivation floored me, turning me into the most fragile of souls, the weakest of beings. And though calm now, I find my eyes involuntarily welling with tears. I’m tired. So very tired. My bones ache, my heart aches. And though I know everything will be all right, that everything will work out the way that it is meant to, I cannot escape this feeling. Balance evades me. And I know that I am not alone, and I know that all will soon be well again, that soon I’ll restore my unyielding warrior spirit that exudes hope, but right now things are bleak and dismal. So, you cannot imagine how much I needed to be witness to the light you brought to my screen this morning with your tale of Princesa Brooke. Thank you, Jess. From the bottom of my heart, thank you.

    • oh honey, i know. i really, really KNOW.

      it’s saturday. hand your husband the reins today and go. doesn’t matter where, just go.

      the to do list will wait. it really, really will. the people you’re supposed to see will understand. don’t tell them why, just say, i’m so sorry, but today we can’t.

      take some time today to be alone. to breathe.

      go outside.

      that’s where the balance is. it’s outside.

      it’s in the trees and the clouds and the smell of spring. it’s in the flowers that are making their way up and insisting on coloring in our world – despite the odds of the seemingly endless winter. it’s in the water – a pond, a lake, the ocean.

      it’s in breaking out of the cycles that feel endless and leaving them, for just a few minutes, on the other side of the glass.

      you’ve got this, mama. you know how this works. oxygen mask. yours first.

      GO.

  19. Affirmation of all the hard work you do, that you sometimes don’t know if it’s working at all, and always seems unfair that other parents don’t have to work so hard at it, is THE BEST. Congratulations on a great as it could be day. The pictures are superb.

  20. side note: I was an OB/Gyn patient at Children’s. At 16 I had surgery there. (and while I wasn’t one, unfortunately sometimes babies have babies) Lots of times they take folks who have been under intense care all their lives as adults too, thus the different specialties.

    Also, I LOVE that social story book….I mean LOVE it! Do you know if that company makes any more?

    and you are doing a really great job. Props to you!

    • no idea, but the website was on the bottom of the story, so check it out ..

      http://www.maxishare.com/

      i’ll tell you, though .. dr google rocks. i googled ‘eeg social story’ and instantaneously had four to choose from, including a VIDEO!

      . :)

  21. Could relate to every second of your rendering of this incident…..& no one tells it better then You Jess! Brooke actually did wonderfully fantastic. Have a feeling that nothing is up with her looking upward; but, of course You had to check. Waiting on the test outcome…..

    • me too .. the more i watch her, the less i believe that this is the answer, but we have to do what we have to do.

      thx, darlin

  22. You cannot know (maybe you can) what finding your blog has meant to me. It is like reading a day in the life of my daughter. I cry EVERY time I read a post, not because I’m sad, but with gratitude, because I feel so much less alone. Thank you so much for sharing your story with all of us. I am so grateful for your time. Thank you so much.
    smiles, Nancy

    • i do, because having people like you here to tell me that makes ME feel so much less alone. it’s a pretty wonderful thing. ;) thanks, lady.

  23. Not the fact that you all had reason to do an eeeeeg, but for the look back to see how far you’ve come. (and the fact that she called it an “eeeeeeg” Love that.)

  24. “I’m sorry.” Our Bells says that and it breaks my heart.

    You all have a wonderful, long weekend together. Keep the loving going. gail

  25. I would love to post some awesome thoughts, but I am a little fried myself. Just wondered where you got the fidget from and the link is broken.

  26. I am from Canada and my son has seizures. When we do an EEG we stay awake all night. We do this for a few reasons. One is my son would never sit still for all the wires to be attached. The other reason is this guarantees he will sleep for it and my doc says you get better results if they are sleep deprived. We have gone through a few of these. He is 10 now and no seizures presently but in his sleep. No meds required now we just need to keep an eye as they may return. Just thought I would share this info with you. We turn it into a party as well. Hope you are able to get the info you need. The waiting is hard.

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