Comparison- Take Two

July 16, 2010 - April 6, 2011 - 
and September 30, 2011

In April, Ayden was focused on rocking the chair. This time he was interested in taking off his socks, an activity that often captivates him these days.

Together Again

Jude and Ayden hung out today for the first time in a long while. With the possibility that Jude might have his third surgery this fall, his parents put him in isolation mode to protect him from illness. Once the cardiologists determined that Jude's surgery could wait six months to a year, Diana and I began making plans for the boys to see each other.

During this visit, I became more aware that Ayden hasn't interacted enough with children his age. He doesn't share well; he took everything that Jude was playing with and did not intend to give the toys back. He had limited concept of personal space, as evidenced by his crawling on top of Jude or by his playing with Jude's hair. When he got angry or frustrated, he felt the freedom to hit Jude. (The crowning moment was when Ayden hit Jude in the face with two pieces from his shape puzzle. Lovely.) I began to feel a bit like a referee. The funniest moments were when they tried to simultaneously squeeze between pieces of furniture, and they would get stuck until one would either give up or get trampled.

On a more positive note, Jude's ability to pull to stand, cruise, and assisted walk encouraged Ayden to do the same. They played at the coffee table while standing. Jude's mobility has always helped Ayden see the next step more clearly.

Happy OT Graduation!

Way to go, Ayden!

Ayden graduated from occupational therapy today. Ayden's therapist, Ms. Julie, was sad to end their time together, but she couldn't rationalize their visits any longer. At 17 months of age, Ayden was working on two-year-old fine motor skills. Thank you, Lord, for helping Ayden achieve these skills so quickly!

When Ayden was evaluated in April at a year of age, he tested at the 25th percentile at an age equivalency of ten months old. Five months later, Ayden is in the 84th percentile at an age equivalency of 20 months old. We are so proud of our son! Ayden, we applaud your willingness and perseverance!

Ms. Julie, I can fill out the Peabody Developmental Motor Scales Examiner Booklet!
(Let me first consult the manual.)

Some things that Ayden will continue to work on at home are as follows:

1. Use pincer grasp to pick up small/medium items with good efficiency. (He will do this only occasionally.)

2. Remove twist cap. (25-26 month skill)

3. Stack six 1-inch blocks. (He can do four. Six is a 21-22 month skill.)

4. Complete 3-4 irregular piece puzzle. (He can do a shape puzzle, but he needs to be able to do one with animals, etc.)

5. Imitate vertical and horizontal strokes. (He hasn't done this intentionally yet; he likes to play with the marker, scribble, and then go back to playing with the marker. 23-24 and 27-28)

6. String two large beads. (He tried this for the first time today and was quite fascinated. 27-28)

Julie was patient and kind. She encouraged with joy and appropriate discipline. She handled Ayden's temper well, even if, in the end, it meant catching his vomit in her hands. I personally appreciated the ideas that Julie gave me so that I could carry her teaching into our playtime at home. We love Ms. Julie and are glad that we will at least get to see her on days Ayden goes to physical therapy.

Thank you, Ms. Julie!

"My So-Called Life"

Let's start out with a basic truth: taking care of a child is hard work.

It's a full time job. There's no vacation time, no sick leave, no hazard pay. If you're like me and have a regular full time job, having a kid takes over that job's vacation time, sick leave, and pay. In some sense, then, it's both a full time job and the antithesis of one. It requires your attention 24 hours a day, meaning it's the truest embodiment of the phrase "full time." Yet, it consumes the very things regular full time jobs provide.

The preceding paragraph is undoubtedly true for every responsible parent. For those with children facing extra challenges, the pressures of the job are magnified. I'm sure every responsible parent - I use this phrase purposefully; unquestionably, there are (too many) parents who shirk their parental duties - feels a sense of loss of control over one's life. At the very least, a responsible parent's life is irreparably changed. And, again, for those with more challenging children - another purposeful phrase; no child is "easy," except in relative terms - this reality of change and loss of control is heightened. Of course, most of us enter into parenthood knowingly and willingly. Surely, we have some sense going in that things are going to change. If we don't, we have no one to blame but ourselves. Even if we are realistic about the decision, sometimes we get more than we bargained for.

I know I did.

I was not blind to what having a child would mean. Could I completely fathom how being responsible for another human life would change the manner in which I lived mine? No, but I knew it would be different. As it turned out, Ayden had his additional stuff going on, making me more clueless than I could've realized at the time. Seventeen months later, if I'm completely honest, I miss my life.

Don't misinterpret me. I'd do the whole thing all over again. Ayden is worth it. He's worth the hospital visits, the lost sleep, the feeding frustrations, the artificial limitations placed on us right now due to his defect. He's worth all of it. I'll trade him for all of that any day of the week. Even so, a lot of it really kind of sucks. Wait, I committed to honesty. A lot of it really sucks.

It was just Allison and me for almost eight years. We didn't always have very much in the way of disposable income, but we were able to find ways to spend time with (both in and out of town) friends, go to Clemson games, play golf (okay, that one's mostly me), etc. Now? Not so much. We are in midst of the second consecutive football season of seeing the games only on TV. We haven't been able to go visit any of our out of town friends. If we go see in town friends, we're basically confined to be outside, which means no more going over to someone's house to play cards. I've seen two movies in the theater over the last year and a half (tortuous for a movie geek life me). I've played golf once in the last eleven months. (I'm sure if you asked Allison, she, too, could rattle off a list of things she hasn't been able to do, despite them being a part of who she is.) Basically, we are stuck at home most of the time. I knew it would be an adjustment after those eight years, just not to this extent.

This is my so-called "life."

No one should have to live like that. It's not natural. We, like everyone else, need (adult) human interaction. Of late, we are trying to be more purposeful about returning some bit of normalcy to our lives. As I type this, Allison is on her way back from spending a weekend in Birmingham with her mom. She spends the vast majority of her time at home with Ayden, much more so than I do. She was long overdue for a break. I'm going to visit a close high school friend in a few weeks. I've got some theater gift certificates that expire at the end of the year, meaning I'll probably see more movies in the next three months than I have in the previous seventeen. So, we're trying to do better in this area. We need to, as our mental health in no small part depends on us finding ways to have some semblance of a life separate from being Ayden's parents.

Lots of things tend to fall by the wayside when you're focused on taking care of a little person. You'll ask yourself things like: "When's the last time we cleaned this bathroom/floor/kitchen counter/etc.?" "When's the last time I took a shower?" "What day is it?" So, finding the time to go out and do something can be quite a challenge. That's only half of the equation, though. Having a kid can have just as much of an impact on your finances as it does on your life. We've gone from a two income, two person household to one with one income and three people. And that third person brings some additional, unexpected costs with him.

Even if you can find the time to get out and do something, you have to decide if it's in the budget. You find yourself measuring the cost of things in something other than dollars. Thus, a round of golf isn't X dollars, it's X weeks worth of formula. Getting out of the office a couple of times to grab some lunch is worth how much in diapers? A few movie tickets would be how many prescription co-pays? (Maybe that last one is mostly unique to me.) I find it hard to think about things in this way without some or all of joy getting sucked out of them. I know I'm no different than most parents (except that I have a blog upon which to post my rantings). Having a child is a sacrifice. You just have to give some things up. That doesn't mean you have to like it. And I don't.

I miss my friends. I miss going to Clemson games (which are as much about spending time with friends as seeing the game). I miss playing golf. I miss going to the movies. I hate having to say no to things because I'm thinking that's money I could use to pay for diapers, formula, prescriptions, whatever. I hate that Allison is stuck in the house much of the time. I hate that she doesn't get to do things she likes to do either. (An added layer to all of this: I feel guilty getting out of the house to do something. Why? Because that means Allison has to stay home with Ayden. I know she feels the same way.)

I hate it for Ayden, too. He needs the human interaction just as much, if not more, than we do. I know he would benefit from it. I know it would help his development.

If all of this sounds negative, well, it is. This is certainly not what I envisioned when Allison got pregnant. But what are you going do? We are doing (or not doing) what we have to in order to keep Ayden safe. That's more important than all that other stuff. I don't like it being this way, but I can't change it. Fortunately, there's another basic truth: it won't always be like this. I'll eventually get my life back. Not all of it, but most. At any rate, and without question, he's worth it.

There's some positivity for you.

My Buddy & Me

 

Ayden and I spend a lot of time together, and because he's still only post-Glenn (one more surgery to go!), most of that time is one-on-one. We occasionally go to run errands (he's famous at Target and Wolf Camera) or to eat at restaurants (everyone knows him at Fulin's, Moe's, and Jersey Mike's), and, of course, he has therapy two or three times a week. Due to Ayden's feeding and nap schedule, as well as the constraints placed for his health safety, a considerable amount of our hours together are spent at home. We stack blocks and cups, tease each other with insect finger puppets, create artwork, play ball, roll cars, dance, sings songs (yes, he sings!), and make music (he likes to drum, shake things, or play the piano).

Taking off the marker cap and putting it back on are the best parts about coloring!

I try a lot of things with both hands, but I'm probably left-handed.

If weather and schedule permit, we try to get outside. Ayden still enjoys strolls (or races!) in his red car. He soaks in the environment as he observes every car, every person, every blade of grass. Nothing gets past this child! (On one particular day, Ayden was obsessed with making a kissy face in almost every picture. See below.)

Howling at the sun?!?!

Ayden's feeding therapist convinced me that I needed to get Ayden in a swing. So, armed with Clorox wipes, we went to the local park, and Ayden got to swing for the first time. He smiled, and laughed, and talked the entire time! He also watched the few other children present on such a cloudy day.

Oh! Now I get this thing! Yippee!

Sometimes we get visitors to keep us company. Today Ms. Callie came to play. She filled me in on the goings on of her precious children. She loved on Ayden as well. They invented a fabulous counting game.

Ayden also does an excellent job playing independently. If he needs my attention, he'll come get me with arms outstretched. He doesn't usually want me for very long, just long enough to feel that I am with him. One of his favorite things to do by himself is to pull out all of his toddler books and briefly peruse them.

Though some days are naturally more difficult than others, I try to never lose sight of how blessed I am to be so much a part of Ayden's growth and development. I get to be included in his miracle life on a daily basis. I am there to comfort the sadness and to relish the laughter. I am able to teach and to nurture but mostly just to love and be loved. I get to be Ayden's mother.

Play-Doh! (Best when licked!)