This will be my first open letter to you, my love bug. A dear friend suggested I leave you my thoughts while they are fresh and have the conversations I imagine we would have if you could tell me what you are thinking. And with that in mind, I couldn’t just post this video today, I had to break it down.
Reese, you are amazing to me. I believe you deserve to see this progress, when you’ve started reading, you will be able to celebrate how far you’ve come. Because it’s all YOU, baby!
Your progress the past 6 months has been overwhelming and there just hasn’t been a way to keep up with documenting it. You have to watch this 3-4 times and each time let me point something different out to you, because only your dad and I, and your teachers can see it.
First, Watch your demeanor and your attention.
Sitting, following instructions and looking where your teacher is guiding you.
You are calm and not fidgety.
You are aware of your friends sitting around you.
You followed through on the whole task… meaning you didn’t get distracted.
Watch your little dance – it’s become your way of showing you are paying attention.
Now observe your clothes. Today I was feeling quirky, so we both have our best funky outfits on. You can thank me later for your sense of individual style. But it’s more than that…
You have a necklace on. Historically you have taken these off. They bother your neck. Today you’re cool with it. Progress.
These leggings are almost too small, but I had to get them on and then cover the booty up with shorts. And you were ok with that, too. And then there’s one leg bunched up — you did that on purpose.
You put those black boots on by yourself this morning. Socks, too. A HUGE win! (It’s a special word, highly overused these days). You pulled them open, slid in the foot, and zipped each boot up. And you did all this without really looking at your hands and what you were doing. It’s easier for you to focus when your eyes aren’t taking in so much information.
Now look at your physical actions.
You’re sitting cross-legged. Ok, first, you’re sitting. No grown up behind you, no special Elmo fuzzy chair any more. You are equal to your friends.
Your teacher insists on you crossing your legs. This is great for coordination, it also keeps you from rocking. But you don’t need to rock when you’re engaged and comfortable.
Watch your head turn to each child when she says their name.
Look how you dance your head and move your feet with purpose. You have gained so much physical control and awareness.
Your hands sometimes are your biggest challenge but you grab our card and know exactly what to do with it.
You have become a full participant in circle time and I honestly didn’t know if it was posssible two years ago. You belong here and you are so loved! And I know everyone’s belief in you spurs you forward, but this is definitely all your doing.
So wherever you are when you read this I want you to hold your head a little higher, and smile big, because you inspire people. You are so deserving of so much admiration.
And that is why I am here today, with you ever day. You inspire me. I love you. We all do.
I’ve been a little lost lately — fighting that need to be valued– a lot of people probably never grapple with this, because your work keeps you connected daily. For me, feeling like I contribute to society more than just upholding the economy with grocery shopping and soccer games, tugs at my ego and my identity daily. A part of the challenge is that overwhelming feeling of where do I start? What’s my motivation and where can I make the most impact?
So I’ve opened my mind to going full time and it’s been stressful.
My time with Reese is strained, and many parts of the day I find myself flustered or frustrated, but I hate the thought of missing out on any of her amazing moments. And lately, our bond has been very strong, and very important to the balance of her day. We see her initiating a connection with me when I pick her up from school and her teachers say they can tell if we didn’t have time together in the morning or like the night before, when I am occasionally out to a board meeting or soccer practice runs late.
That bond is also important for me. I know I’m hard on myself and the whole family because I feel like we should be able to juggle more, or do it better. I am slowly accepting that we just aren’t like every other family. And the mess and the confusion and the uncertainty is ok if we are happy and we are able to enjoy our time together. So, when I’m frustrated with myself or Reese or just life, then I’m not able to be happy or in the moment with my kiddos. I see myself from the outside and I can be critical and empathetic at the same time. It’s the oddest feeling. I catch myself laughing under my breath as my nimble daughter climbs out of the Target cart for the third time in a 30 min visit. I know people are judging and staring and no matter what I have done to prepare for entertaining her, it won’t be enough. So I laugh at my situation and I laugh at the world who can’t see what I see.
The truth of our happiness lies in the balance and I am working on it every day. So if I look a little frazzled one side of the pendulum or the other, I’ll take a smile and a “you’re doing fine” any day that you want to give it.
And for working more, we shall see. The kids and I are just going to enjoy our pinwheels while they last.
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.
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.
I am an experienced communicator. Not just a little bit. It’s pretty much the core of all I have ever done in my career. I’ve recently had the aha moment that it’s because of this natural tendency to understand visual cues, translate people’s wants, find middle ground and all kinds of other puzzles that come with sending and receiving messages — that I struggle so much with this challenge I live with every day.
It feels like failure to not be able to communicate with my own daughter. It hurts every time I try to guess. She makes unexpected eye contact and grabs my hand. I say something like “are you hungry? Want to play?” But she walks away. Clearly I’ve failed. It’s been a hard existence to feel your hours and days building up and the failures outweighing the successes. We’ve spent many hours together where I just stare at her thinking it will hit me. If I watch her long enough I will be able to crack the code.
I have been stewing on this feeling for more than a week now. There is a huge guilt overshadowing this entire two weeks of spirited festivities. I haven’t been in the spirit really at all. Yes, we’re exhausted, and yes, we don’t see an end in sight so I think that Ground Hog Day feeling has set in. And yet, we are so very grateful for one thing, the only thing I asked for in all of 2013 and 2014 and now we have it.
The truth is it’s not enough. At the time it felt like it would be a miracle to go one day feeling normal. We just wanted to get through special occasions without our world being overturned in an instant. We didn’t want hospital stays to be our measure of life going by. And we have it. We officially have gone 365 days seizure free, (and a couple extra for good measure because we are somehow ridiculously superstitious about a disease we couldn’t control, predict or understand).
We live in a world of dates, deadlines and milestones. I catch myself measuring each special moment and holiday in reference to “last year” or the “last time.” The good news is we are beyond grateful for having the chance to say these words. We loved those moments like they might really be our last. But I want to push myself beyond the milestones and monthly markers and yet I find it’s much harder than I thought.
I can’t decide why and I’m not sure there is one single answer. Maybe it’s partly because we were trapped in a time warp for two years and it feels unnatural to actually move forward. But it’s also maybe because we got stuck in a safe place and staying in that rut is easier than starting fresh, even when the rut includes the scary memories always haunting us like silent ghosts.
As I have reviewed this weekend’s photos I am reminded of our pumpkin photos last year, how we felt, what we worried about and I wonder if maybe next year it will be too far away to keep up the comparison. But I also don’t want to ever forget, because this fight never stops for our little warrior nor for hundreds of thousands of others.
It’s almost November, our month to share, so I’ve decided it’s not all bad to keep reflecting on the crazy moments. It keeps us vigil and empathetic and these qualities are what I am most thankful for learning through our journey. It’s about the baby steps we keep taking and making sure we keep an open mind for the change we face.
We celebrate where we are and we want to make sure we spread the awareness so there will be many other stories like ours.
Beautiful night to sit outside after dinner. Even if it’s not a peaceful or relaxing moment.
Just a little peek into our special kind of craz here. Manis/pedis are NOT fun this little hyper-sensitive busy bee.
Bubba doing what he does best, distracting Reese during one of her not so fun sensory overload moments. Notice how she licks her hand the whole time? That’s her new “I’m uncomfortable” response.
It’s hard to tell Davis to stop and honestly sometimes I think he is helping distract her. Her happy senses are lights and music and bouncing. Her not so happy is any kind of pressure on her hands and feet. It is something we work on every day.
And then we see new signs of learning by our little love bug. She is following the simple task of picking up her toys. We do hand over hand a few times but she eventually does it by herself. It’s like Groundhogs Day around here though. Just because she figured it out yestersay doesn’t mean she will remember today. And then she figured it out again and we repeat. We repeat a lot. The good behavior and the bad. I admit we are so tired we don’t stay on top of her like we know we should.
But then we see the funny moments when she gets to explore by herself. Like bedtime. I never had to think about what was around her crib before this month. Now, she has discovered she can pull everything through the slats! I laughed so hard first time we found a slew of clothes, formerly folded in a stack outside her crib, now providing a second layer of blanket INSIDE the bars. It’s a good problem solving challenge for her so I keep letting her do it. Tonight it was a soft book and a fake wood spare shelf. Tomorrow who knows…
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.
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.
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.
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!
I am repeatedly blown away by people’s support for our journey. Both dear friends and complete strangers praise our strength and give selflessly of their love. I admit it helps even if only for a second to know someone is recognizing it’s not an easy road.
But here’s the other side. I am reminded daily that we are so far away from being the worst of cases. And while our daily worries and struggles are exhausting, we have a more often than not healthy child, TWO actually! And we cannot be more thankful for anything on this Earth.
So, over the holidays, while I couldn’t make time to go give to others the way I wanted to, I did spend time filling up my heart with stories of other courageous mommies and their beautiful families. Theirs are the inspiring kind. The truly heart breaking and breathtaking that I admire now in a way I couldn’t appreciate before.