Figuring Tuck Out + Figuring Myself Out

posted on: 1.13.2014

I don't know why I'm so nervous to type this, to "announce" this, but I am. I've been sitting here at my computer for over 2 hours diddling around doing everything except writing my thoughts down. I've been fairly open before, but to be completely honest, for the most part I've been holding most of it in.

 We have had this January appointment to possibly find more answers for Tuck scheduled for 5 months. It was last Wednesday. The anticipation for answers was so high and I felt anxious for weeks before. We did get some answers. Tuck has Autism, that was a definite answer. There is also very high suspicion of the Dr. that Tuck also has a genetic disorder. A Pseudo- Down's Syndrome, which could be a number of different things, and takes a very 5 month long wait blood test to figure out, which we're doing. A step in the right direction, but not a clear answer. We have always felt that it was something genetic, and not just a global delay, so to have the doctor confirm our hunch felt good. We also found out that Tuck, probably due to what ever this genetic disorder he has, is also "intellectually disabled", (commonly referred to as mentally handicap). That was real tough one to hear. A big lump appeared in my throat when I could tell where he was headed.

Truth be told, it was all tough to hear. Even though we suspected most of it, and knew deep down it was all likely, it was very emotional. We both realized in that appointment, and throughout this weekend, just how much our life will be changing. Immediately, and possibly long term. The rose colored glasses are off, and we are both processing this slowly.

Immediately the Autism is our priority. We have not had much of the digression that can be typical with kids with Autism, maybe because we caught it early. He has stopped clapping, and used to say mama and dada, which he no longer does. What has been the most challenging has been his behavior. Lack of any communication skills + very very short fuse if things don't go just his way + increase strength, without a correlating awareness of that strength.  I am a barrel of emotions when it comes to it, and my mood and approach to it changes almost by the minute. It's all still really confusing, overwhelming, gosh it's overwhelming, and scary. I feel both a healthy motivation to jump into treatment, and a sense of defeat and bitterness to everyone who's kids are born so healthy, who never have to go through the daily battles. That's really hard to admit, and I hope it's not received in the wrong way. I try to be a positive person, I try to focus on the good. I post a lot of the good, in hopes that my mind will focus on those moments, and in turn, good will come back to me. Lately though, I have been hardened, because it seems like we're being pummeled with bad news. It would be fake for me to say otherwise. It absolutely pains me to say that, as I feel like it's a completely different person than I was 2 years ago, 5 years ago especially. I guess life has just worn me out for the moment. I'm not giving up, and I do believe I can get back to that cheerful, positive person I was, I'm just not ready to pull the pom-poms out yet, and I think that's okay. Please let that be okay.

I've decided in 2014 to open up more. The hardest part of this entire process, besides the unknown, has been the isolation. The living away from family and friends physically, Wyatt's long work hours, and putting up barriers emotionally about how we are really doing. Since we've moved to Indiana we've felt incredibly lonely and isolated, like we're battling this huge beast all on our own and no one even knows. When you live by family and friends they're in your home, you're in there's, you can gauge a persons well being much easier, and it's much easier to open up. Over the phone, email, text, instagram you get about 1/100 of what is really happening. It's hard for me not to tell myself "they won't understand". I usually say that in my head, and just keep things to myself. I am also a pleaser by nature. I know people don't like complainers, I know people like me for my "cheerful, fun nature", and so that's the side I show, even when I don't feel that way. It's sort of a double edged sword, because I keep myself isolated. Sometimes talking to people who don't/can't understand, but are genuinely empathetic is helpful, and sometimes they say all the wrong things and it makes it worse. And sometimes it's just difficult me, and it doesn't matter who I'm talking to. Just please be gentle when talking to me, and I think I could safely say this about anyone who is dealing with something similar. Listen genuinely and without "mom judgement". Don't one-up, or relate and then shift focus. Don't say things like "well, at least", "that's pretty good", or "you still have so much to be grateful for". For me personally, statements like that, instead of boosting me up, like maybe they are intended, only seem naive or insensitive. 

I don't know that I'll be able to wrap this post up with a pretty little bow. Gosh I would like to. I will say that we all, of course, adore and love Tuck more than words can say. He brings tears, of frustration yes, but also of so much joy, to me all the time. Everywhere we go, he lights up the room, and makes everyone fall in love with him. I hope he never remembers these days of me not knowing what I'm doing, and that I can figure it out soon and be a better mom to him. And thank goodness he has the sweetest angel of a sister who does anything and everything for him, and a brother to whip him into shape and always be by his side.

Thank you to those who have called, and emailed. It has meant a lot and does always mean a lot. From family, friends, and blog readers. There are several emails that I haven't replied to (even ones from months ago) and I truly apologize. Please know they were read, and most deeply appreciated, and then re-read. They really lift me up, and what amazing women you are to take the time to write me something encouraging. 


Tuck and his faces

posted on: 2.25.2013

Hoping your weekend was good! It snowed here, again. Bleh. Wyatt and Tate took advantage and went skiing. I stayed nice and warm at home with the boys. 

I snapped these pictures a few weeks ago, and came across them again today. Oh boy, how this boy makes me smile! 

To see more of our day to day life visit me on Instagram.

A swift right hook

posted on: 2.19.2013

A little boy. A balloon. And a swift right hook!

These sounds

posted on: 10.25.2012

The loudest, most exciting, most animated part of the day, every day, is this.
Even though sometimes it drives me nuts, I kind of hope it never ends.
This happens every time Tuck eats.

Rub a dub Chub

posted on: 8.15.2012

I am pretty sure you'll be smiling after seeing this little man get washed up in kitchen sink.
All that chubby, wet, nakedness! I could die.

My favorite thing about Tuck?
Everything is ticklish to him. Even the kitchen sprayer.

ps- did you notice I finally got one with brown eyes?

There's another NERD in the family

posted on: 5.17.2012

I'm not the only one who needs specs. Tuck's now sporting the coolest little pair ever!
It took me about, um 30 seconds, to completely fall in love with his face in those.
Grandpa-nerd-chic is the look we're going for now. That's a thing, right?

If you're curious, they're Miraflex brand, and we've loved them. I really wanted to get him these, but I'll have to wait until he's three since they don't come small enough. 

He keeps them on quite well. It took him not a half a day to get used to them and to stop pulling them off. Like his opthamologist predicted, once he realized how much more he can see with them on he'd actually want to wear them. So far that's true.

How did we know he needed glasses so young? Every specialist we saw (which is a lot!) suggested we get his eyes tested. There were obvious signs to them. I'm glad we did because Tuck is extremely far sighted and will most likely always need glasses, says the doctor. 
I'm so happy he can finally see clearly all the wonders out there! We're basically obsessed with this cutie.

ps- of course we don't really think people who wear glasses are nerd's. we totally dig them.

*Tuck's outfit: grandpa cardigan- american apparel, t-shirt- old navy, shorts- h&m

Bucco Pads

posted on: 3.27.2012

Bucco Pads: the main muscle of the cheek.
 I learned that term my first week of therapy with Tuck. His therapist loves them, but also hates them. They're too big, too chubby she says. They get in the way of him being able to eat solids properly. Great for suckling (and sucking on!), not great for chewing. Of course, from her perspective, she's right. But from my perspective they're dreamy. Oh, so perfect. I could kiss and naw on those bucco pads all day long.
Already since Tuck started his therapy his bucco pads are going down. His liquid caloric intake has been cut in half, in order to help him become more mobile (we're working on his sitting right now) and also to peak his interest in solids. It's worked too well, because I'm feeling those bucco pads thin down when I smoosh my lips against them. It'll be a sad day when I can feel any sort of bone in there. I can't get enough.

Tuck's therapy, by the way, is going very well. It's slow, but we are seeing good progress. We've just been given permission to take a 6mo. break from Speech (feeding) therapy, and just continue to work with him on pureed foods. 
In physical therapy, we've been working very hard to get him sitting. He's very close, and will for a about 10 seconds until he topples over. Tuck has hypotonia, which makes it hard for him to reach the typical milestones, and is why he will need ongoing therapy, probably for several years. But he is such a patient, strong baby in therapy and tries really hard. He used to only last about 20 minutes before he'd tire out, and now he will work for the entire hour. He's rolling, and pushing up with his arms like a champ now too- something he struggled with before therapy.
I love Tuck so very much!

The Mustache Man

posted on: 2.27.2012

I love going in to get the boys from their nap lately. They no longer wake crying (usually), but babbling instead. This particular day I heard Finn screaming out of excitement which he does often and I thought Tuck might still be sleeping so I hurried in to pull Finn out before he woke Tuck up.

I found this.

That clever Tuck. He found good use of his mustache pillow, and no joke, with a good grip on it, had pulled it tightly over his face. He had surely had enough of Finn's antics, and just wanted some peace and quiet.
It was one of those moments that was too perfect not to run and grab the camera.

It was even better when he realized it might be me (by the sound of my laughs and camera clicking) and peered out from behind the mustache man. 

So we did peekaboo for a bit...

And then he wanted back under the mustache man again, for a good sleep.

My favorite get-you-up-out-of-your-nap-and-find-you-doing-something-funny story yet.

happy, right now.

posted on: 1.31.2012

I drove down the 75 this afternoon biting my nails furiously. I was running late, although that's not why I was anxious. I had Tuck's bag packed for a stay. We were headed to see a Neurosurgeon at the hospital. Tuck was diagnosed with Hydrocephalus right before Christmas.

Since moving to Michigan four months ago Tuck has become the patient to a Cardiologist, Pulmonologist, Gastroenterologist, Geneticist, Physical Therapist, Speech Pathologist, and now Neurosurgeon. There has yet to be a week here where we haven't needed to go see one of them.

He's a tricky one to figure out, that Tuck. He's keeping the doctors on their toes. Syndrome is the word they keep using, although no one's sure which one. He keeps me very busy, and Wyatt too worried. We're still in the thick of the storm, trying to get diagnoses for a couple different issues, trying to manage the endless appointments, but today the storm lifted just a bit.

Like I said, I had bags packed. Bottles for the rest of the day, pj's just in case, my book. The other kids had babysitters. As I drove I thought about the possible things I might hear from the doctor. Shunt was the word I really didn't want to hear. Then I thought about the weather, and how the snow on the side of the freeway was ombre looking. Probably because my mind didn't want to scare itself before it knew for sure, and the weather was safe.

The doctor put me at ease right from the get go. He was super casual. And quick too. He already knew everything about Tuck's history, so we didn't have to go over the usual rundown. That was really nice. I appreciated that. We looked over Tuck's MRI and he showed me pictures of normal brain fluid, compared to Tuck's brain fluid. Tuck has more than normal, but not an alarmingly amount more. Good news. Tuck, he thinks, only borderline has hydrocephalus and at this point, doesn't need a shunt. More good news! In fact, it's the first good news about Tuck's health that I've heard since living here. I was grinning ear to ear.

After the doctor left the room, and before I strapped Tuck back in his car seat, I squeezed him, and rocked him, and loved on him. I hoped he could feel the good news too.

I drove home with the stereo blaring, and just felt really happy for him. Later tonight I happily unpacked his bag.

kicks and thigh highs

posted on: 1.23.2012

Thigh highs. Short squishy dimpled legs. But somehow Tuck makes this look so adorable.
Oh, I could eat this little man up.

Well, Hi There.

posted on: 1.14.2012

Where to begin? The whirlwind of December still has my head spinning. I hate feeling like I have a million things I want to say, record, and remember, but don't where to start. I'm getting my stuff together though, slowly, and until then here is a little gem. A little, big, burly, hilarious gem.

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