Thursday, August 29, 2013

The Tooth Fairy

"What are going to do about this Tooth Fairy business?"
"Well, I'm going to go home, and put on my special Tooth Fairy Leotard, and strap on my Fairy wings, and get to work."

I figured it would be many months before Isabella actually lost a tooth. She was adamant that a top tooth was loose, but it was one of those things where I didn't want to tell her that really, it was just her finger moving back and forth, not the tooth. It seems that losing teeth becomes some sort of contest between friends. They keep tabs on who lost a tooth, when, and how many times the Tooth Fairy has made a visit. I wasn't eager to join the "lost teeth club". I have dreams about losing my own teeth, so I'd just rather not deal with that while awake, it's bad enough when I'm sleeping.

And then, a week ago, during a friendly sibling wrestling match, Isaac knocked his head against her chin, and just like that, she had a very loose tooth. It was one of those cliche parenting moments, where you say, "guys, you'd better take a break before someone gets hurt." And then a minute later they come running to you because, guess what, you were right, big surprise.

The moment was not without drama. Isabella was a puddle of tears. Apparently she'd decided that losing teeth wasn't what she really wanted. Uh, I hate to break it to you, but you're going to lose them now, and then you'll probably lose them all over again when you're really hold. I'm a very comforting sort of mother. After she stopped crying long enough, we were able to assess the tooth and determined that it would not fall out that instant, hence the parting of the clouds and the drying of tears, all of a sudden, it was very cool to have a loose tooth. In other words, she was in the club, and her little brother paid her membership.

For the rest of the day, we heard about the tooth. I mean, non-stop. Who knew one person could talk about a loose tooth for so long, and who knew we could get any more excited about bed-time than we are on a daily basis.

And now, a week later, after extensive conversations related to the tooth, it fell out. As you can imagine, this event was not without drama. I really wish I'd video taped it. You see, my daughter, from a very young age, has enjoyed watching herself cry. It's like she's made for the stage and is inherently acting out some part she'll play in the future. I kid you not, she will run to her room and stand in front of her mirror watching herself cry. I've even seen her try on different facial expressions for size. This tooth display, was obviously practice for a horror film. Her hair was messed up, tears were streaming down her face, and she was holding her mouth open just right so that you could see the tooth hanging and the blood and drool collecting on her lip. I must say, it was impressive.

And then it was out, just as Walter returned home from work, and there was cheering, and she was instantly happy and excited. You guessed it, for the rest of day, we listened to her talk about her tooth.

Tuesday, August 27, 2013

"Daddy is going on a vacation"

Isabella was spreading all kinds of rumors last week. When we told her that Walter had to go out of town for work, we overheard her say to complete strangers, "My daddy is going on a vacation" and another time, "My daddy is leaving and I don't know when he is coming back". Clearly, we didn't emphasize the work part in his leaving. So, to anyone who is under the impression that we have a failing marriage and Walter is up and leaving us forever, he's not. Technically, anytime anyone in this house, gets to sleep away from home, for an entire night of uninterrupted sleep, it's a vacation. Maybe Isabella was onto something with her interpretation.  

Around the garden...

Morning snuggles...

A frog doing laundry...

Isaac follows Isabella around and says, "read book, read book"...

Our week without Walter went smoothly. I treated myself to a piece of cheese cake from a local restaurant, which lasted three days. I take very small bites. I'm the person who still has their Easter basket candy a year later. My husband, on the other hand, has a sweet tooth. If we share a piece of dessert, he eats it so fast that as I'm about to move on to my second, slow bite, I look down and there's barely anything left. So, I enjoyed savoring my cake.

I've been very busy with the start of our school year. We are gradually adding in all of our subjects and I am attempting to establish a routine even though our days get mixed up with appointments. I love the flexibility of homeschooling and that we all get to be together each day. I have a lot of fun things planned for Isabella this year, and she is very excited that she is officially in first grade!

Thursday, August 15, 2013

Back In the Game (sometimes)

I've spent three years living life from the sidelines and finally, I feel like I'm being brought back in the game. Before thinking the sideline is a bad place, I'll tell you that it was probably the most important place to be, though admittedly unpleasant at times. In April, a shift began. Slowly but surely, Isaac began to handle more diverse situations, and slowly but surely, that meant I could step into the game, cautious for sure, but eager. I've stayed home from many events and family outings with Isaac. This allowed Isabella to stay in the game and have fun with Walter, and sure, there have been times when Walter has given up his spot and has been benched with Isaac. But it's usually me, because the reality is, I know Isaac the best (Walter would agree, so don't think I'm slighting him). 

As we drove back from our vacation a few weeks ago, Walter said that for the first time since having Isaac, he felt like we all went somewhere and we all enjoyed it. Getting to this point, has been like climbing a mountain that we thought would never end. I could list all of the things we've given up participating in over the past three years, or all of the times we've tried and Isaac and I have sat in the car instead, but that wouldn't be fun. I will say that one of the many things I've learned from Isaac (and Isabella too, in her less intense way) is to live in the moment. For a long time I wanted to escape from the moment, and that made me feel helpless. Instead of escaping, I began to realize that my job on the sidelines was to comfort when all I wanted was for someone to comfort me, to help him feel safe and secure so that one day, we'd get our chance and he would be ready to be a team player, and most importantly, even in his smallness, to make him feel accepted, because there will be many games in this life where he won't be accepted. 

For as long as I can remember, I've gone to The Ohio State Fair. I'm sure you already know, whether it's a state or county fair, it's a shock to the sensory system, so we knew it could be challenging with Isaac because it has been in the past. We arrived at 1:30 p.m. and didn't leave until 9:00 p.m. Isaac and Isabella had a blast, and we drove home completely exhausted, but so happy knowing that we all had fun. We were so excited about our all-inclusive family fun day, that we went to the zoo the next day, and then we went to the zoo again the day after that. All-inclusive fun really is as good as they say--we couldn't get enough of it.

As I'm writing this, I am thinking about how we've reached this more positive place with Isaac and I feel like I should share some things we've learned and found helpful over the past few years. 

A few tips for your sensory-sensitive child that I've found helpful: 

-Give a warning about what is to take place. Before going to a social gathering, we tell Isaac that we are going to see a lot of people (same with people coming over to our house) and there will be lots of kids at said place, and he might accidentally get bumped into (or whatever sets off your child), but it's okay.

-Slow and steady wins the race. You can't rush a child with sensory issues. If do, you're screwed--simple as that. Ease into each and every situation and pull back as necessary. I have learned with Isaac, that I need to get to every appointment, story-time, whatever, early. He needs about ten minutes to be in that environment before the hustle and bustle begins. Yes, this means we sit in waiting rooms for a long time. Yes, it is a pain. But I quickly learned that if we arrived at a therapy appointment and they were ready to take him back right away, he would freak out and the appointment wouldn't be productive. Now we get there early, and he acclimates to situations much better.  

It's tempting as a parent to want your child to participate in what you think is fun. Sure, you want them to think playing with their friends is fun, but if you stand there and say, "go play with your friends, doesn't that look fun?" And your child is thinking, "no way, they're loud, and not only are they loud, they might touch me" well, fight or flight takes over and all bets are off. I have learned from Isaac, that if I just let him observe, even if he doesn't participate that time, the next time around, he is more likely to engage.

-Accept that it doesn't take much for a big thrill. Isaac does not like slides. It doesn't matter what we do, he will not go down a slide. He won't even sit at the top of a slide. Guess what? It doesn't matter! Who cares if the kids goes down a slide or not? One day, when he's ready, there is no doubt in my mind that he will happily climb to the top and slide down. For now, he sits at the bottom and says, "weee!" and gets super excited about it. Again, what we think is fun, may scare them to death, so why push it? 

-If it is really loud, even if you don't necessarily notice the noise, but you see your child getting agitated, quickly and quietly move to a different room, or go off in a different direction away from the noise. I feel like I am constantly observing Isaac, but I know it's better to act quickly instead of let things get out of hand. Even though we try to push his limits, he does have boundaries and it is our job to be respectful of those boundaries. I think it helps that I am very sensitive to noise and large groups so I have some inkling of how he feels. 

-Have an object at hand that makes them feel safe. For Isaac, this is his pacifier and whatever toy he left the house with that he has deemed the most important toy of the day. Keep track of those items as if your life depends on it. 

-Know when it's time to leave. Just don't push your luck. As much of a bummer as it is, it's much better to leave with a semi-happy child than it is to leave with a screaming one. I've been in both situations, and trust me, when you see the red flags, make for the exit. If you do leave with a screaming child, don't get mad at them, know that you pushed the limits, reassure them that everything will be okay, and chalk it up as a learning experience. Think back and consider what the triggers may have been that set off your child, and you'll be more prepared for the next social gathering.   

What to do about siblings: 

As I recall, one of my mom's favorite phrases has always been, "life isn't fair". Life isn't fair. Learn it. Accept it. Get over it. BAM! She wasn't that harsh, that's just how I feel as an adult, because God knows, I know, life isn't fair. 

We try to stress to Isabella that life isn't fair because it truly is true, after all, and more importantly, our family is a team, and being part of the team means that you have to make sacrifices. If she is unhappy about having to do something because of/or for Isaac, we remind her that we are team, and we also remind her that Isaac has to wait for her while she has her ballet lessons, and he waits for her during swim lessons, and he waits while we take her out to ice-cream, etc. Before a play-date, I always remind Isabella that if Isaac is really unhappy, we will leave. She generally complies, and I try to find a balance between making the two of them happy. Sometimes that means we really do need to leave ASAP, and sometimes it means that Isaac and I can excuse ourselves to a different room for some quiet, or I can distract him just long enough that Isabella feels she had sufficient time to play with her friends. Honestly, sometimes grandma (otherwise known as, my mom) has to come to the rescue, so that we can all spend time with our friends without Isaac. We had a very unfortunate birthday party experience last month. It was a situation where Isaac decided he wanted nothing to do with it, and nothing was going to make him happy, so my mom met up with me and took him to her house. Thankfully, this allowed Isabella to continue playing with her friends, and Walter and I were able to spend time with our friends whereas, the plan was that I would take Isaac home (again, removed to the sidelines) and pick them up later.  

Again, these are things that I've found helpful in dealing with Isaac's sensory issues. You may not agree with how I approach these situations. I don't really care. What I do care about, is making my children feel like people, building trust, and accepting them for who they are. 

Our day at The Fair. Isabella, held a snake, rode on rides, learned how to use a bow and arrow, milked a cow, watched the most amazing Sea Lion show I've ever seen, and ate a funnel cake (well, not the whole thing). 

At one point during the snake show, Isaac took a keen interest in that man sitting next to Isabella. He stood inches away from him and stared at the side of his face. Apparently he was undisturbed by our child's strange behavior because he didn't even look in his direction. We had to pull Isaac away when he began peering around to get a closer look at his glasses. 

Isaac did not like the sheep or the cows.

Isaac performed his own show before the start of the what was a very boring show on Falconry.

If you hadn't noticed, I'm trying to hand off the camera so that I'm actually in some pictures and my kids know they had a mom. One of the best parts of the fair for me, was getting to spend most of the time holding Isabella's hand. I am usually the one holding Isaac, and watching (from the sidelines) Isabella and Walter have fun, so it was such a gift to walk around hand in hand with my girl.

My grandpa would have been proud. I had a nearly perfect shot.

Until next time.


Saturday, August 10, 2013

The Mother-Son Dance

I didn't find out about Isaac's genetic abnormality in the correct order. Actually, I don't know many families that did find out in the correct order. There is an order to these things, you know. An order that is meant to gently inform the parents that the child they know and love, may endure a road unexpected. No, I wasn't let down so gently. Instead, a pre-op doctor suggested we run the genetic screening during surgery number two, and see if anything came up. I'd never met this person, and I'd been putting off the testing for a few months, but once you enter the world of surgeries and testing, you try to schedule blood work, and CT's and MRI's all at once to take advantage of the anesthesia, so I agreed.

I assumed the results were normal since I'd never heard from anyone (I know better now, I call, repeatedly, until I get answers)--it does seem like one of those tests where they would call and say, "you should come in for a meeting with us." Instead, I'd taken Isaac to his post-op ENT appointment, and casually asked his doctor if she could look up the results of the blood work. There it was, on the computer screen in front of me, the doctor didn't even need to say anything, in big, black, bold letters I read: ABNORMAL Microarray Results, Male. We were both silent at first. In that moment, I felt as though I would fall to the floor and it took everything I had to maintain my composure and calmly ask the ENT what that meant. She didn't know. She only knew that it wasn't Noonan's Syndrome, which is what she'd thought he may have.

I called the geneticist right away, and after arguing with an unsympathetic secretary who wanted us to wait two weeks before seeing the genetic counselor, we got in two days later. Like I said, this is not how all of this is supposed to happen. You are first supposed to meet with a genetic counselor, prepare for the testing, and have a post-blood work meeting in place.

Our meeting with the genetic counselor went as well as could be expected. She was wonderful, and calm, and thoughtful--she'd learned to do her job well. I don't remember much about that meeting. I know I have notes written down somewhere, but this is what stood out: I asked if he would ever be able to graduate from high school and go to college. Maybe it seems like a dumb question, but in that moment, it felt like that was the key to any future he could possibly have. She said she didn't want to sound like a jerk, but the reality of the situation was that we didn't know if our typically developing child would go to college. Basically, she was telling us that anything could happen and we had to stay open minded.

I try to balance open-mindedness with reality. And reality hits harder than ever at the most unexpected moments. It almost always hits me smack across the face as I watch the mother-son dance at a wedding. Sure, sometimes those dances are awkward, or you can tell the two of them just don't have a close relationship. But many of them, I feel like I know what that mom is thinking, I feel like I can see the flashbacks run through her mind as she pictures key moments in her journey of mothering this son, whom she held as a baby and now again as a man, on his wedding day.

As I watch these moments between mother and son, tears fill my eyes, and the sadness creeps in because the reality of the matter is, sure, Isabella may choose not to get married, but that is a choice, and my son, more than likely, will not have a choice. Though I will, and have, shared many moments with him that are equally as special, I won't get that one. I won't see my son grow to be a husband, or a father.

I told Walter about this, and he suggested I take Isaac to one of the community mother-son dances when he is older. Maybe we'll do that, but for now, we have dance parties at home, and I tell Isaac to shake his hips, spin around, jump up and down, and wave his arms in the air, and he thinks it is the funniest thing in the world. And I try to think like a mom, and remove from thoughts, this a really good PT session


We went to The Ohio State Fair last Friday, and we were shocked that Isaac wanted to try everything, including, rides with me, and archery. You must understand, he usually does not like situations where he doesn't have control over his body or feels unsteady--like a ride that goes up and down and twirls around. He also does not like people touching him, so when he let the park ranger touch his hands and help him pull back on the bow and arrow, we couldn't believe it. When a situation like this comes up, we give him the opportunity to try something, but he always runs away crying before actually trying what he was initially so eager to do, so this was all very exciting and encouraging for us.

Experiencing pure joy on a ride with me...

Next time I'll share pictures of Isabella practicing with the bow and arrow.

I leave you with a quote from One Thousand Gifts: A Dare to Live Fully Right Where You Are

"Who would ever know the greater graces of comfort and perseverance, mercy and forgiveness, patience and courage, if no shadows fell over a life? I dare flip the cue card over and I make out the words on the back side, 'See now that I, I am He, and there is no god besides Me; It is I who put to death and give life. I have wounded and it is I who heal' (Deuteronomy 32:39 NASB). I nod. I know. I know. And these truth words reconfigure the battlefield under my feet" (Voskamp 90).

Wednesday, August 7, 2013

Vacation, Part 3

Whenever we go on vacation, I bring a ridiculous amount of reading material. After attempting to read more than twenty-five pages in two different novels, I gave up on day two of our vacation and said to Walter that I wasn't going to try to read anything. Since Walter was around to help with the kids, I did end up spending some time planning out our year of first grade (news flash: we're homeschooling again--more on that in another post).

While driving around downtown Pen Yann, I spotted a bookstore. I absolutely cannot pass up a small town book shop. Walter knows this, despite the fact that he probably rolled his eyes, when I shouted, "Look, there's a bookstore!" The shop was so small we basically took it over, while Walter stood on the sidelines observing the book craze. Isabella found a science book she just had to have (it was only $6, since this was a used bookstore). How could I possibly deny her an educational book, since she has hardly ever shown any interest in traditional learning? I couldn't. She was up until 10:00 that night looking through the science book (which just so happens to be a sixth grade textbook, but who cares). 

Our visit to the Garret Memorial Chapel:

Isaac loves holding Isabella's hand. 

With the picture of dead people residing in their cozy crypt, I'll bring these vacation posts to a close. I find it is fitting that I just now finished blogging about our vacation since yesterday, I finally unpacked our suitcases. All in good time...or slow time...or avoidance, I don't know.