Thursday, May 30, 2013

Parenting Ain't For Sissies

Yesterday was a big James day. Full of planning and evaluating and I have to say, for once in what I feel is a long while, I'm fairly excited. (We know by now that I basically always say that cautiously now. I like to keep an out.) We are still battling diarrhea and then added pink eye and a cold to that (awesome). And while that's frustrating, I think we have to finish our newest course of enzymes and probiotics and work our way back. His weight has fluctuated a bit, but that happens when you weigh daily (it just helps keep me on track with what to feed), but overall has risen. So all that is...ok.
But anyway, we went to A Place To Be to meet with the music therapists for an evaluation. First of all, such a great place to walk into. James was being super shy. And he has this new thing where he retreats into himself and becomes...a bird. I can't honestly say I blame him. He's met some awful strangers in his young life. They were all Dr so and so, or a nurse in scrubs. ;). BUT, one of the reasons we want to get him involved in this therapy is for his confidence. We are hoping that all the major trauma is behind us, and we all have to move on and act kinda normal. After a little while, he will warm up to people and start talking, but we believe that as long as you can speak in social situations, you will be ok in life. Look people in the eye, have a conversation. You're good. So, you know, acting like a bird probably won't cut it. The hard part is, it's difficult to know how far to push him, and especially in a therapy type situation. Anyway, we kind of let him do his thing for a while so they could see where the issues lie, but then had a leeetle chat with him about proper behavior. This helped a bit, but he still wasn't super into participating. They tried different instruments and made up a song about birds (which I was completely impressed with, btw). He was doing what we asked but was very upset about it. Then he sat on a stool at the piano. And, no joke, immediately started singing parts of the song with the piano, playing the keys, and repeating patterns. He was completely focused for the following 10 min, and would have stayed longer. It was a remarkable turn around. And after that he was talking into the microphone and showing Eve around. Different kid and loved it. We were then told we need to get a keyboard and a microphone because these would be key for him, and we 150% believe it after seeing what had happened. Super cool and we jump into therapy next week! I can't wait to keep you posted.
After this we headed to SMILE for a parent teacher meeting (I still giggle when I say this--seems so grown up...). First of all, one of the lovely interns watched the kids so Eve finally got time to play in the gym. I thought she was never going to leave. It was adorable. And we always love meeting with Arousha and hearing about all the amazing improvements James has made, as well as learning new things to help him develop. We still have so much to learn. This time she probably went home laughing because we, again, ended up asking parenting advice (in a therapeutic sense...I swear). The thing is, only in the last couple of months has James acted like a typical almost 5 year old. He really never did anything bad or naughty before. Because he felt awful all the time and he was so sheltered and overprotected. That's hard to break. So we are like parents who have barely been around little kids and somehow acquired a 5 year old with no prior training. We. Have. No. Idea. What. We. Are. Doing.
We are learning more with Eve. All this happens gradually and by the time they are 5, they won't behave perfectly, but the rules and consequences are in place, they work for that child, and that's your thing. We never had a thing with James. Or we just never got the chance to learn a thing. Or whatever. Basically, the first time he was little boy naughty, we were partly excited. My mom said, and I quote, that it "warmed her heart". Nice. Anyway, we are working backwards and while Tom and I are both not ones to take a lot of crap, it's hard not to smooth things over with the little one who you picture in skin and bones with tubes coming out of everywhere. But again, we are also aware that that's not great for the future. Everyone needs their ass kicked. Builds character. But we aren't always sure what's "normal" and what's happening because of James's fears or holes in his development. We're a little over sensitive too. We use Arousha to tell us what's what. Cause honestly no one else that we know knows. Got that? We are so lucky to be surrounded by such great people!
Cause, you know, parenting is hard...

Sunday, May 26, 2013

5 Year Confession

This isn't much of a confession, because most people know this. James has more or less been sleeping in our bed since he was born. We have put real effort into ousting him over the years, but when Eve was born, we realized we were working way too hard on something that was just going to have to happen in its own time. Sleep is about the last thing to heal in a kid therapeutically. Well, sleeping and eating. Sigh. Anyway, we knew we weren't anywhere close to healing anything, and we found that if he fell asleep in our bed, he went to sleep on his own, and slept fairly well. You can imagine how this made everyone feel better.
I'd like to add (because I love to add little rants whenever possible), that I cannot stand when people talk about how they'd never let their kids in their bed and you should never and shoulda woulda coulda blah blah blah. I hear it all the time. Fact is, if your kid isn't sleeping in your bed, super. They didn't need to. I'm so glad that worked out for you. Basically, not much that you did made that possible. Luck o' draw.
Sometimes, you just have to do what works for your life not to be miserable. And frankly, aside from getting kicked in the head, stomach, shoulder, leg, ass, etc, it really hasn't bothered any of us too much. Especially compared to the misery of trying anything else. Also, it gave us a guest room!
A couple of months ago, we were reading about some sort of bird that had a cup shaped nest. James was soooo interested in this, so we started sort of talking up how he could have a cup shaped bed someday. We weren't really sure how we would do this, but if he was going to sleep in it, we would just figure it out.
He also wants to sleep in a room with Eve, which in theory sounds awesome to me. In But we made a deal: if he slept on a mattress in our room for 2 weeks without getting into our bed, I'd make him a cup shaped bed. Truly honestly, I didn't think he'd last more than half a night. But amazingly, he slept all night there! Then he woke up and asked if he could have a cup shaped bed. Then I realized I probably needed to make him a calendar to avoid talking about it constantly.
So for the past 2 weeks, he has spent EVERY night in his own bed! We certainly haven't had perfect nights with either kid, which totally confirms that they're not ready to share a room. But...I'm no longer sleeping at the foot of what, at some point, was a comfortable and kick ass bed. I would like to get reacquainted with it.
Anyway, I promised I would make this cup shaped bed on Thursday, and my kid will not be put off. Of anything. But of course the end of the day rolls around and I had forgotten until dinner. So I ran into the basement and hauled a whole bunch of crap upstairs and created (dum dum dum!!!!) THE CUP SHAPED BED!!

Really, kids are pretty easy to please, aren't they? Awesome.

Sunday, May 19, 2013

Forrest Allen

Things have been a little bit rough around here lately. Not horrible, but...not as positive as we'd like. James has had a significant setback in his gut healing ever since the whole croup and steroids incident. The thought is that he is still so fragile, even when we see great strides, and that the fragile balance of good and bad bacteria or yeast in his gut was upset once again and we have to figure out how to get it back. He is going to do a 30 treatment of a thing called Interfase, which breaks down the biofilms that protect the bad bacteria, and then start on a particular heavy duty probiotic to see if we can gain ground. He's still good...just not quite as good as he was a few weeks ago. And that's just...disheartening and frustrating. But we are kinda used to that so we keep going, and we are getting better and better equipped to deal.
That's not the real point of this post though. That's just a brief update and to show you where my head has been lately.
Today we had the opportunity to go to a fundraiser and event to honor Forrest Allen and A Place To Be Music Therapy. Many of you who read this know about Forrest, and for those who don't, please go to his blog and scroll through to see what this amazing young man has overcome and continues to overcome with basically the best support system I have ever seen.
Forrest's dad was my equine vet through my competitive career, and I spent many hours hanging at the clinic waiting for Dr Allen to fix up my horse. :). I had met Forrest in passing, but we are talking 10-12 years ago. Forrest was injured in a snow boarding accident a few years ago, and through the years we have actually been at UVA in separate wings, but at the same time. I have religiously followed the blog that his family, friends, and caregivers have kept up to date with his progress. And it is amazing. But you wanna talk setbacks...these folks have fought and fought and fought through setbacks like no other. But they come out swinging every time.
Today I saw a young man who has probably THE best attitude and sense of self I have ever had the privilege to see. He spoke and walked and sang and thanked the people who have supported him. And I saw a group of friends, young college age kids, who's lives have been forever changed by their relationship to Forrest. People always talk about our crappy young people it seems. Well, meet this crew. They have a perspective and sense of loyalty that truly touched me. Ok, clearly I was affected this afternoon. It will probably be one of the most memorable events of my life. I cried a lot. In front of other people. But, I mean, I certainly wasn't the only one, so it's cool.
Anyway, Forrest was the star of the event, along with his family and friends, but it was also meant to showcase A Place To Be ( It's located in Middleburg and I've had my eye on it for a while. They work with anyone who may benefit, from people with any sort of disabilities to people who are looking for...something extra, it seems. We have had it in the backs of our minds for a while now, but a couple of weeks ago, Tom ran into Rae (Forrest's supermom) and she stressed how much she thought James would benefit. You tend to listen to Rae. It's worth it. :). So we went to learn more and we are more inspired than ever! I am completely convinced that this could be a huge bonus for James, and Eve too because why not. No details are worked out yet, but I will definitely keep the blog updated on everything. And I encourage anyone interested to go on their website and see what they are doing. It's....awe-inspiring.
The only last thing to say is...we were truly honored to be able to witness what we did today. To see people band together. To see a young man show such consideration for others despite his own struggles. To see other young people who you can tell are going to be awesome adults...way better than me (despite the fact that I was apparently wearing a dress one girl wore to her prom a couple years ago....though not with flip flops...she's clearly not from SoCal). To see people who care so much about what is happening to our kids, or even to adults (!), and who understand the teamwork that it was life changing. I could go on and on. Also, it was life changing to talk to someone (Tom Sweitzer is the director), who when we talked about James said, "oh, sensory" before we did....well that never happens. I'm still reeling from the whole experience so my thoughts are maybe not formulated properly, but...welcome to my brain. The big news is we have yet another encouraging avenue and are so so excited about it. It just adds a whole other level of hope, and I hope :) that someone else reads this and goes on their website and feels the same way. Once you read about Forrest, there's no way you won't be inspired to hope.
Also, I'm still trying to figure out if I'm super cool for wearing a dress a girl (who was beautiful, btw) wore to her prom 3 years ago, or if I'm way too old...
Then again, I didn't get to go to my prom...sooo...

Saturday, May 18, 2013

My Mini Me

Time for a post all about Eva-G!

YouTube Video

No words necessary.

Thursday, May 16, 2013

A Shining Moment

Feeding therapy is hard. Really mentally and emotionally more than anything else. Unless you've done it, you just can't really know how hard it is to actually teach a kid to eat, rather than them learning it naturally. Especially when that kid isn't really sure he wants to be doing it anyway. It's like trying to train a dog who isn't food motivated (Charlotte). It requires a whole lot of creativity (btw, I'm about the most uncreative person out there). You frequently want to tear your hair out. Or drink. Or both. And by drink I mean water. Totally kidding.

Anyway, we've gone through all kinds of ups and downs and weird emotions along the way. For probably the past year and half, James would throw a complete fit if he finished everything on his plate. Like, crazy panic. This had a direct relationship with him thinking that finishing his plate meant being sick. His associations would get a little mixed up this way, but that's pretty normal with kids. For instance, they associate the hospital with the bad stuff instead of getting better. Fear and trauma is powerful. Like he remembers the one time I burst into tears in the bathroom of the doctor's office when I was pregnant with Eve, and he was only 2 1/2. We went to the doctor probably 100 times when I was pregnant, but he remembers that visit (actually so do I. It was traumatic.)
Again...aaaanyway....I swear we've made a point to leave a few things on his plate for months, and then if he did finish everything, we could never make a big deal about it. In fact we can almost never make a big deal out of anything when he does something great, particularly when it is something he has struggled with and when we are asking him to do it by himself. We just make sure he knows we are happy and proud but just kinda downplay everything.
We've slowly seen some progress of him stepping out of his shell and letting us praise him more and more, and I 100% attribute this to the SMILE school. But it hasn't really branched out to feeding.

Today we were having a quick snack of the fakest, crappiest fake cheese out there. But it's the only soy free, casein free stuff I can find that has more than 2 calories and he loves it. It's really the only processed thing he eats beyond pretzels (I don't make my own pretzels...I draw the line somewhere). I had cut it into 14 pieces (don't ask why I know that), and he had a strawberry cut up as well. In getting ready to head outside for a walk, I asked if he would eat 5 more bites of cheese and we would go. He said he actually had 8 more pieces of cheese and 5 bites of strawberry left. I said he was welcome to eat more than 5 bites if he wanted, but he didn't have to. All of a sudden he just pounded all of the cheese and strawberry, then ran around the house yelling and laughing, "I MADE MY PLATE CLEAN!!! I'M ALMOST AN ADULT!! AND I DID IT ALL BY MYSELF!!!"
Honestly, I didn't know what to say. Flabbergasted. Good word. So I just started running around the house and yelling with him cause what else do you do??

As most things I've found in this feeding therapy, this may not happen again for a long time. Or it may. Who knows. But for this moment in time, I felt like we did SOMETHING right. So I'll take it!

Wednesday, May 15, 2013

Mother's Day

Every mom I know kind of just wants to be alone on Mother's Day. But alas, as most things about being a mom, it's not really about us. :). So what Mother's Day usually entails is getting pampered by your family while a huge mess is created that you'll clean up later, but no matter what, we really do love it all. I prepared this year by full on cleaning the house the day before so I didn't stress about it. Great plan, btw!
This past month has been a doozy with me being stupidly sick with all sorts of different things and being full on miserable the entire time. I was FINALLY better and it was deemed that I would live, but you can bet I didn't feel the need for anything fancy for Mother's Day. Just a frigging break.
So my day consisted of sleeping til 6:30ish, moving myself to the couch where coffee was served to me repeatedly. We went for a family stroll, I sat on the couch some more and champagne was served to me. I took a nap. On the couch. Tom put the kids to bed while I drank champagne. On the couch. Then we had dinner. Guess where? I love my couch...
I loved every minute. And when someone whined, I said, "go talk to Daddy." That was fun too. Or funny...either way. :)

But the best quote came from my wonderful and long suffering husband:

"It maybe wasn't the best Mother's Day ever, but it sure beat your birthday!"

Indeed, my love. Indeed.

(Please excuse the shirt in the underwear. I was off duty.)

Tuesday, May 7, 2013

Three Years

About three years ago, we were admitted to the hospital with James on April Fool's Day and finally came home on Cinco de Mayo. Hard to forget. ;). I remember driving home that afternoon, armed with tubes, formula, and feeding pumps, and just enough knowledge to make us dangerous. We really thought that we were down a very different road to recovery. Everything was going to fall into place! Once that tube was out, we were golden.
Wow. That...really wasn't the case. We had no idea how loooong this frigging road was. And bumpy. And dirty. Lol. And it's sort of funny that I seem to mark time by this first hospital stay, because we had a second stay this past summer that was just as bad, if not worse. But I guess we were pros by then, so it didn't have the same effect. That's kinda sad too.
Anyway, all that to say, we have learned so much, and not just about James's condition (cause we actually haven't learned that much about what it is, go figure), but about ourselves and definitely other people. We have met so many incredible people during this journey. Turns out this crappy road is a well traveled one.
Yesterday I had a couple of dr appts down at UVA, with some wait time in between. So I found myself back in those halls where I used to drag James back and forth in a wagon, trying to navigate other people, other wagons, children, and the IV pole. I remember realizing in one moment that I was the person that people looked twice at, wondering what was wrong with their child, wondered were they going to make it, and felt genuinely sorry for. That never bothered me. Sometimes well placed pity is just what you need. It was a sorry situation. But I sat in what used to be a big lobby with a piano and now is just a hall with a lot of chairs and I watched the parents carting the IV poles for their kids to go hang in the cafeteria, or buying ridiculously expensive toys in the gift shop just to make things a little more interesting. And I listened in on phone calls to relatives updating on whatever condition. I watched a 9 day old preemie go home with happy parents. I saw a new mom laugh so hard she spit her drink on her new baby's head. And I sat with a perfectly healthy pregnant girl on her due date who was just praying to go into labor to get the giant baby out. Lol. So there's good and bad and in between.
We all feel sorry for ourselves in varying degrees at different times. But we are maybe usually more vocal about the stupid stuff. When you are in the trenches, people seem to find the positivity in really simple things. I remember recently someone was talking about those hours of dragging James around in a wagon, joking about making the best of things with a fake smile on my face. The thing was, it wasn't a fake smile. We hung out with the nice nurses and laughed and played and just lived a different kind of life for a while.
So I would encourage anyone who is feeling out of sorts, or discouraged, or even a bit wrapped up in their own world (aren't we all), to go sit in a high traffic area of a hospital and observe. It will give you so much perspective, and you never know, you may even find a way to help someone, even with just some nice words.

Then go home and have a drink.