Category Archives: Musings

All the Moms in the House say… Caayyy-ake!!!

Listen up to all my mommy friends. I’m far from perfect. Let’s get that out there first.

Here’s the thing… I’ve been a workaholic, adrenalin-seeking mom for almost 8 of my 15 professional years, sheesh, and now in a round-about-way I’m a stay-at-home-lose-my-marbles-daily kind of mom, too. THEY ARE BOTH THE HARDEST THING EVER. frabz-the-face-mom-makes-when-theres-no-more-coffee-lol-20e58b

Recently, I did a wild thing. I hung out with some ladies I had never met before. It was nice. Actually, it was a blast. And I think a part of it was the freedom that I had no idea who worked and who didn’t. And they didn’t know anything about my crazy life either.

Because, let’s be real here. Some of us working moms have had those jealous thoughts toward the SAHM who has it so easy. You hear the stories and acknowledge that staying home with the little rugrats all day isn’t a piece of cake, but really, is she having cake during nap time? Well guess what, if she is, she made it her damn self, which is more than I can say. I get so easily distracted trying to cram in one more load of laundry or one text (that turns into 10),  that I can burn anything. Truly. So if she IS having cake, she deserves it! And let’s be honest my kick-butt working mommy friends,  you get lots of cake. Birthdays, appreciation parties, customer events — you’re doing just fine on that front. I’m seriously wanting in the sweets category since I’ve been sequestered to these barren pantry walls. But don’t worry, there’s still some Valentine’s candy left I think.

Continue reading All the Moms in the House say… Caayyy-ake!!!

Progress every day 

It feels like as good a time as any to put it out there. Things are pretty good these days. I still hold my breath every time she bends over or stares into space, but our little warrior defies the inevitable. And it is most likely going to happen again, so we will try not to get too high on life because I fear the fall will be much worse.

So the update aside from all things good is we have been checking on her body to see if it’s as good inside as it looks outside. Today was a new test for us. She had a stimulant test run to check out her body’s natural response because the steroid our body makes (partially adrenaline) is created when we are excited and stimulated the same as when we are sick or hurt. This will tell us if her immune system is back on track after the long-term steroid use.

Personal note: I always think I can be supermom and handle her by myself. I say how on earth can I be so spoiled to always have someone helping me. It’s just one kid! My sister manages 4 by herself many days!  I have also met all these strong moms with medically-complex children and they do it seemingly with ease. And yet, after 2 hours of trying to wrangle her, sooth her, and meet her needs, I’m ready for a nap and some wine. And that’s what reminded me that I really don’t care about how all the other supermoms do it.

Child Life provides toys
trying to find a way out of the room

The highlight of the trip was Reese’s first experience with Rover. Check out how calming this thing is for her. She loved the bubbles and the mirror combined. She was hugging it; she couldn’t seem to find how else to express her happy feelings.

This was just further proof that Cook Children’s is a great place for us and we are so grateful we have them. Plus, we saw a familiar face from the Child Life group who has helped us from the beginning and she hardly recognized Reese. But that “family” feeling of knowing people and having them know us is so comforting. It’s my favorite part as the mom who probably needs that reassurance now and again that we are making progress.

hugging Rover

[finally got a very late nap in
And today, despite the stress of worrying about her and the extra prick because the IV blew (of course it did), and having used the one diaper right BEFORE she decided to have an unexpected poop, oh and the fact that I left the urgent grocery run of milk and diapers IN the car where they sat for the two-hour dr visit, I’d say it feels like we have lots of good days ahead. So that is most definitely the kind of progress we want.

Move over Hiccup! There’s a New Inventor in town

The heart on this boy moves me to tears more often than I can handle admitting. We have secretly been feeling for a while that this boy’s destiny is tied to his sister’s and in turn helping many others. So I admit we embrace small moments to teach about helping others. But nothing over the top. We are still awfully spoiled and lacking nothing in life, except maybe time.

However, our weekend of snow has led us down a new path I had to share because what momma doesn’t boast about her son saving the world. Or even one who is thinking about it!

Continue reading Move over Hiccup! There’s a New Inventor in town

Music – even more to love

My friends know I love music. It fits me in every way — I am auditory, it lets me connect to memories and stories and the creative freedom attracts my inner artist.

But none of that tops how it feels to share my love of music with my rugrat. My love bug, who of late only wants to do her own thing, her way, has her moments of appreciating the joy of music. So capturing this moment of her attending to the instrument and the teacher for almost an entire song is remarkable compared to where she was six months ago.

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Snippets of Fall 2014

I’ve gotten too far behind on posting. It’s been dizzying how much keeps changing and how I can’t keep up with time moving forward. So consider this a drop in the bucket. A collection of moments that I have string together with a few photos.

We are in awe of our little warrior. Every day brings something new I just had to stop writing it all down. Now I have forgotten things I said I would document. But the good news is I have been there for everything and I am so deeply moved by her love for me. We have a very special bond.

It’s not just for me though. Her personality keeps breaking through and she now sees her brother in a way that is closer to the beautifully innocent admiration you see between bigs and littles. She also seems to know who is the boss. She doesn’t shy away from letting him know when he is in her way and an elbow or a grab of hair always gives us a giggle. (We will work on good behavior next year.) Right now we are just proud of our tough sassafras.

Gaining confidence

I think we are also seeing her be a little more sure of her body and her surroundings. We have been able to enjoy the park a little more this fall and she recognizes it now. She got very brave in the photos where she is holding into the rope, she is also standing on a rope. I was propping her back for a while and she was testing her legs and arms. But I could tell she had stopped using me for support and she was really pulling herself to center to hold balance (core tummy muscles) and we grabbed this shot if her being pretty proud of herself.

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Independence is another challenging topic with her. Of course we are so excited for her to be understanding some new concepts of life. We are even cautiously trying to give her those moments of exploration and research. Sometimes I feel like she’s in this soundproof glass house and we are supposed to just watch her and not interrupt her little world. But we take every opportunity we can to reinforce communication and the practices we want her to follow.

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The ride back from Austin after Thanksgiving was a funny example. D sat in the way back so I didn’t have my usual assistant shuffling things around in the back. Plus, we had too much stuff crammed in around the kids and the dog that My sweet, innocent little girl found herself right next to a big bag of pirates booty. (White cheddar rice puffs) The pic doesn’t do it justice but not only was she reaching in and serving herself handfuls of puffs, she started to put some back when she was done. No matter that a couple were slightly gummy from a test drive in her mouth. All this to say the girl will figure things out her way and we are merely here for supervision and her own protection. Otherwise, it’s best if we just stay out of her way when she gets an idea in her head.

So that’s just a taste of Reesey introducing herself to us. It’s spotty and many times it’s almost like it never happened. She reverts back to a fussy baby in my eyes and I forget she was just climbing on a stool trying to wash her hands. It’s still an emotional ride, but we will take it for sure!

The Princess and her Pillow

This girl… She has no idea how spoiled she is. And you can’t blame her. 4 brain surgeries pretty much earn you anything you want in my book. You can’t see Daddy’s arm perfectly propping up this pillow to have the optimum drinking angle. Hopefully some day we will all get good chuckles from all the doting. #epilepsywarrior #purplepower #spoiledrotten #earnedit #purpleprincess #reese #okwithchange via Instagram http://ift.tt/1poGJbx

Reflections on the playground

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Preschool playground. All I can think about is germs.

I had to come add more musings to this one. It’s been a rough few weeks, and not because of any health issues. At least not directly. It’s more the emotional toll all the constant change has taken on us as a family. It’s hard to explain how much of a weight hangs over this house, I think we all feel it and we’re so used to this heaviness that we forget it’s not supposed to be there. It’s our normal. But it’s still a huge shadow over life.

So here’s the deal. We are now in the throws of making the second biggest decision for Reese. Medical being first, but now her education has become top priority. As always we have choices and it’s a long process, so it’s not like there is anything happening tomorrow, but it FEELS like it. Because the holidays will come and time will leap forward while I sleep and all of a sudden it will be her third birthday in February.

That’s right, despite her waif-ish frame, and her living life like a 15 month old, our BABY girl, will be “eligible” (it’s a new fun state-appointed word), for public school because of her physical and mental disabilities. Yikes. I hate that word. But putting all the stigma and the euphemisms aside, that’s what we are dealing with. That’s FIVE half days a week away from home. And that’s overnight! So, of course this crazy dragonmom doesn’t just sit around and wait for change, she jumps off the cliff screaming like bloody hell into the wind. And THAT is why, it has become THE conversation for me. I refuse to give up control of our options, so the more time, the better. That’s why overnight we’ve started entertaining the idea of two days a week in private preschool now, to ease into the real deal come February. Yes, even if that means we drag out the stress of it all, too, I think.

So I am taking a moment to check my perspective.  While my precious, completely unaware angel lies here, I see her little feet are bigger and I know that she now snuggles up into my side like a little person and not on my chest like a baby, but I don’t think I am ready for this change. No one knows what she needs outside of this house. We are asking strangers to learn her non-verbal, non-communicative language and be ready and waiting to meet her challenges when she serves them up. I don’t think we can ask others to do this. We are too hard on ourselves to be responsible for all that she needs or does that impacts others. I cringe at the thought of asking others to own this with us.

We are also hard on the world for there not being an easier way to accept Reese into its crazy ways. There’s no easy way to say your head hurts, or that you’re scared, when you don’t even realize you feel this way. Our table-loving, sitting-still school society is not going to handle her busy feet very well. And um yeah, there’s also those seizures. In a hurricane of 8 toddlers, my silent baby will have no way to call for help, and that makes it hard for me to breath.

I will be stressing about these decisions for a while I think, and I am not going to be letting go of how heavy our hearts are. But as always, we are going to find a way to handle this change and not let it handle us. And that is all the perspective I can muster right now, because from here these toes still look pretty little to me.

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Peace of Mind

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We all are looking for that piece of mind… Whatever “peace” you are searching for, I hope you share it with others when you find it. I am definitely trying to do my part.

Parents as Partners: my new motto

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Last night was a new kind of good feeling. Came home energized from good conversation & new faces. Realized what a big deal it is that a staff member nominated ME for our hospital’s main Family Advisory Committee. There is so much good to be done and with a new circle of people with whom I empathize in a way I could have never imagined. This is our world and we are embracing it.