Wil's Big Day

Three years ago today I went in to see my perinatologist for a weekly peek at Wil - it was more than a peek actually, he was monitoring blood flow in his brain for signs of severe anemia and checking on his activity level. This intense monitoring began when my ob/gyn discovered that Wil and I had a blood incompatibility issue going on. Or to put it more bluntly antibodies in my blood were attacking Wil and therefore making him sick. My visit on March 31, 2005 revealed that Wil was no longer safe inside my womb, the place where he was supposed to be most protected and nurtured until he was big enough and strong enough to face the world. He still has eight weeks left, this can't be good, I thought as the doctor was talking to me about his findings. My mind was swimming with questions and concerns but there was no time for any of that. He sent me, in my dazed state, to the main part of the hospital to be prepped for the OR. Oh, you mean, right now? Wil is coming out right now. I have to call James. And I don't want a c-section, I want to deliver naturally - okay, that isn't important. But surgery, now? What is the hurry? Can't I go home and pack a bag? See Luke and make arrangements for him? I don't have everything ready. And is Wil going to be ready? Will his lungs be mature enough to do their job? What is all this going to mean for him? All these things were swimming around in my head as I rode the shuttle to the building where I would be drugged up for surgery and meet Wil for the first time.
There were so many people in that delivery room. It was very surreal. My birth experience with Luke was quite different - me, James and the doctor. This time there was the surgical team, including the two anesthesia guys at my head trying to keep me from getting sick, and there was a large team just for Wil. Waiting and ready to pounce. And pounce they did. It was all eerily still. With all those people in the room it was oddly quiet, just murmurings and then. . . a little cat like cry from Wil. What a great sound that was! After allowing me a quick peek they wheeled him off to NICU where he would spend the next month. And then I puked. Awww, the sweetness of it all.
You know the rest of the story. If you are new here then this or maybe this will fill you in a little more. That day, 3.31.05, seems like yesterday and at the same time like a lifetime ago. We had a lot to take in the days and weeks following Wil's birth. We still do at times but the diet has changed and the ability to absorb it has improved.
On paper Wil is not too impressive. He is not yet walking, or talking, or doing the myriad of things that typical three year olds do. He has a hard time following simple instructions which landed him in the "extremely low" category of his recent psych evaluation for school. (Have I mentioned my irritation with these tests?) But, and this is a big BUT, in person, Wil is quite impressive in all the ways that count. He is funny, warm, loving, social, and works so so hard.
Three years ago I was pouring over books about Down syndrome, none of which were terribly encouraging or helpful, and wondering what my boy would be like. I confess that at times I even imagined him defying the odds, as if somehow the extra chromosome on every cell in his body would be overwhelmed by the amazing genes from James and me. Today those books are collecting dust on our bookshelf. I don't need them, Wil is teaching me all I need to know on the subject.
Wil has taught us countless lessons since he joined our family. The area where Wil is constantly challenging me is living in the moment. This is how he lives. He is in the 'here and now' like no one else I know. When he is angry he is angry and when that moment has passed he moves on with a hug or a silly dance or playing with his brothers or whatever. If something upsets him he expresses it, we work through it and then he moves on. With Wil there is no pouting, punishing, or lingering sour looks. I'm so grateful that the Lord is teaching me this big lesson through my little boy. It is one I will continue to be challenged with.
Wil is our "unanswered prayer," as the song says. Like most parents-to-be we prayed for a "healthy" baby and though not expressed specifically in our prayers what we meant was a typical child. I am so thankful that our prayer was answered differently than we ever imagined.
What he adds to our lives is not measureable or quantifiable. It can't be categorized or graded. It can only be celebrated. And that is what we did today. We celebrated our miracle baby!

For me?

I want cake. I want cake.

Mmmmm, more please.

Happy Birthday Wil, We love you!

Check back tomorrow for part II of Wil's big day - his first day of school!

If you can't go to McDonald's. . .

James took Monday and Tuesday off. But I hardly saw him because I got hit out of nowhere with a stomach bug. So did Wil. So James' time off which was meant to afford us some catch up time turned into him playing nurse and us hardly seeing each other. So last night before he had to teach a class on apologetics the boys and I met him for a quick bite at McDonald's near the university. We picked McDonald's because it is kid friendly, fast, and cheap - three cheers for the dollar menu! And normally it is a crowd pleaser.

Last night we arrived to find that Timothy had somehow managed to spill his milk from his sippy cup all over his shirt. I mean he was drenched(!) as I had filled his Nalgene cup (if, btw, you are in the market for a sippy cup you should check into these, we love them) to the max before we left home. So James took his shirt off in an attempt to dry it with the bathroom hand dryer while I got the boys settled in.

Please let me paint you the picture. I am still looking rough from my previous days illness. Cargo pants with flip flops and a button down shirt over a tank top, no make-up, air-dryed hair - which is bad news letmetellya! and here I am with a shirtless Timothy and a shoeless Wil (flat out forgot to put shoes on him) both of which are very unhappy about having to sit in high chairs rather than roam the restaurant. And Luke is playing with the condiment pumps. I am painfully aware of the looks I am receiving from the people in the booth next to our table. When James returns I go up to order for us. As I am in line a few more people come in who have no idea I am with the loud group in the corner. There were two seperate conversations going on about our family. "Are they kidding?" one woman said as Wil's screaming got louder despite James' attempt to quiet him. "Jeez, are they trying to outcry eachother?" another said, and understandably so, as W and T seemed to be in some sort of toddler screaming competition. "Great, just what we want to eat to," it went on. When our food started coming out I ran the first batch to the table so that James could get something in their mouths. Wil with his lightening speed grabbed James' burger just as he unwrapped it and hurled it to the floor. He went on to bat away the hands that were offering him food all the while crying and signing eat. I should mention we have been going through this with food, protest after protest to food that normally is well received. But we really thought a thin, cheap cheeseburger would do the trick. Timothy ate his fine but screamed nonetheless. Why? Because the food wasn't coming fast enough or maybe just to harmonize with Wil, I am not sure.

So that is how it went. We were THAT family. The loud family that others talk about, wondering why we can't control our children. The family that others see coming and switch seats. I get it. I don't want to be around screaming children either. I am generally the parent that removes my child immediately when they get loud. I am usually overly sensitive about disturbing others. But I just didn't have it in me last night. And it was McDonald's! If I can't go there with my non-compliant toddlers where, I ask you, can I go?

Theology and a five year old

Luke rarely stops talking. This includes car time. In fact it seems there is something about being in the car that really gets Luke thinking, it tends to be when we have our most significant conversations.

Yesterday when driving out of our neighborhood - still a mess from last weekend's tornado - Luke's mind started churning.

Luke: Mom, did God know that the tornado was going to come onto our street?

Here we go. Okay, no problem, I do have a masters in theology afterall. I can handle the questions of a five year old.

Me: Yes, He did. (my ususal tendency to over-explain under control at this point)

Luke: Did He send the tornado?

Me: Well, he allowed it to happen.

Luke: (sitting quietly for a moment) So, he knew it was coming and didn't stop it?

Me: That's right.

Luke: But he could have stopped it right?

Me: Yes, God is sovereign and all-powerful and He could have stopped it but He didn't and because we don't understand all the ways of God it is hard for us to understand why He didn't stop it.

Luke: Why do we have to have tornadoes at all?

Me: Do you remember Adam and Eve?

Luke: Yes . . . (and he recounts the fall of man. . . and then goes on to summarize the rest of the book of Genesis). Where did this kid come from? I barely knew my alphabet at his age? and then But if God can stop the tornado then why would he not want to do that since he loves us and made us? Why would he want our neighbors to have their house all messed up?

Me: Jaaames. . . Oh wait, he is not in the car. Who wants ice cream?

Luke: Oh, I do!

It works every time!

Turns out writing a paper on the problem of evil is easier than explaining it to this five year old.

Family, Food, and Severe Weather

There is nothing like a little heavy rain, strong wind and hail mixed with the threat of tornadoes to create excitement. It's better than a roller coaster. It feels a little frightening but in the safety of a home is exhilarating. There is something about the dark foreboding skies, the sound of the hail, the smell of freshly snapped cedar and pine trees (as long as they aren't on the house!), the pouring rain hitting the windows, the strong winds and loss of electricity that gets the adrenaline pumping.

This is what we experienced last Saturday while grilling out at my parents house nestled in the woods, surrounded by vulnerable trees. We (well, my dad) were grilling steaks as a thanks to my Aunt Tracy for keeping Wil and Timothy the previous weekend while James, Luke and I went to Gainesville to spend time with friends and attend a wedding. A bonus was that James was invited to preach at our old church. It was a special weekend for us and we enjoyed it thoroughly knowing our little guys were in such good hands with my aunt and my mom. Sorry, I'm digressing. Back to the storm.

As the steaks were grilling the storm came in and intensified quickly. We watched the weather alerts as long as we could before the electricity went out and then we were in the dark. If we hadn't had daylights savings time already it would have really been dark. But being in the home of he most prepared man on the eastern seaboard we were not worried and had radios o'plenty to keep us informed. We discussed the best place to go should a tornado form and we waited the storm out. Once the worst of it was over my dad went back to the grill and we pulled out the rest of the meal which had already been prepared. It was delish! We finished with my aunt's from scratch chocolate peanut butter cake. Also delish. We aren't sure if it was the cake or the bizarre weather that got Wil going but he quickly became the after dinner entertainment.
If there was audio with this picture you would hear Wil laughing deep from his gut. He couldn't stop, so for nearly 45 minutes he laughed. He laughed at us, he laughed at himself, he laughed at the toys, you name it. Timothy got silly too and had to resort back to crawling to escape Aunt Tracy. Luke and Gavin, after being told not to play in the swamp of a back yard as we were packing up to go, were caught playing in the swamp of a back yard. And then they did this. . .

I'm not sure if they were running to come apologize for such blatant disobedience or if they were just running away in hopes that somehow they could convince us that they weren't in the mud at all. And Luke can be very convincing even when he has been caught at something red handed!

So we head home with full bellies, ready to put the boys to bed and settle in for the night. The storm seems to have passed and apart from lots of natural debris and downed trees it wasn't so bad. Then we get to our neighborhood. As I pulled onto the street that runs perpendicular to ours I felt disoriented. There were people out roaming the neighborhood (it is pretty dark by now) and there was debris everywhere. Not just natural debris but insulation, siding, shingles, glass, trash cans and trash strewn everywhere. Men were running chainsaws through trees so we could get to our street. We drove slowly, trying to take everything in. The first thing that struck me was one of the stop signs in our neighborhood, snapped in two with a big concrete ball attached to the base. A big hole in the sidewalk nearby where it seemed to have been lifted straight up. Then we saw this. One of our neighbors, who had their house on the market.

The front of their house could be found all over the street.

Our back door neighbor lost pieces of his home as well.

And there are many more homes like his. The other bizarre thing to us was that many garage doors were crumpled and pulled in. And those homes that have crawl space experienced buckling in their hardwood floors. Evidently this is from the vacuum effect of a tornado. A number of our neighbors saw the funnel forming and bounce around the neighborhood but most told us they were sitting in an interior closet for the 5-10 minutes that it passed through and only heard it. No one in our neighborhood was hurt, just shaken. A couple of people told me that from the sound of things they fully expected to walk out of their closet into the outdoors. So, clearly it could have been a lot worse. We are fortunate not to have any damage to our home, just our yard.

And our fence. So, instead of coming home and settling in we joined those roaming the streets, met some more neighbors and heard their stories. One guy ran out to try and pull his car in the garage when a house window came hurling his way and hit his car. While he was reeling from this some random person in their car came screaming into his garage trying to get out of harms way. He said the man, whom he had never met before, just sat shaking in his car. What a way to meet your neighbor. You can't help but laugh at that imagery. Sunday was spent with the hum of chainsaws in the air and today the cleanup continues.

So while I like a good storm, this turned out to be a bit much. And we thought we left severe weather behind in Florida.

Meet Austin

I love to hear stories like this one. Austin's doctors gave his parent's little hope 29 years ago, and even now, with an IQ of 41, many specialists wouldn't expect much of him. But he is proving them all wrong.

We have been fortunate to have some very supportive specialists, doctors, and therapists on Wil's team, none of which allude to a grim future for Wil. Though now that Wil is transitioning to school we have been told repeatedly by his school psychologist (the woman that leads our IEP meetings) that he scored "extremely low" on his psych eval and that he is "extremely low functioning." She tells us this with a careful, slow rhythm to her voice as if we may crack or be shocked that our son is cogvititely delayed. I'm not sure why she feels the need to remind us of this at each meeting. Maybe she is trying to keep our expectations low for Wil or maybe she thinks we are naive about Wil's abilities or maybe this is just her job. I don't know. I do know that her 45 minute interaction and experience with him does not sum up Wil's abilities. I look forward to seeing Wil surprise his IEP team.

Two wheels

Luke has been bugging us for a while now to teach him to ride his bike without his training wheels. We always have a justifiable reason for putting him off another day. It is hard to give Luke the attention he needs to learn this new skill with Wil and Timothy in tow. When Wil and Timothy are napping, well, I want to be napping, or at least crossing items off my never ending "to do" list. And really, if you must know, I dreaded the inevitable falls. I may have mentioned before that Luke does not handle any degree of injury well. For example he came into the kitchen the other day wimpering about his finger. I tried, I really tried, to see the scratch that was bothering him. I just didn't see it. But he felt it and obsessed over it the rest of the day. His preschool teacher once asked me if he had ever gotten scratched up before. She asked because that particular day at school he fell, scraped his knee, and evidently it was a pretty traumatic scene. She didn't have to explain it to me because I knew all too well what it was like to clean up and comfort Luke after an injury. It is not for the faint of heart. It requires a great deal of patience (which James will tell you I am sorely lacking) and compassion (which I have, until the screams over a splinter cause me to grow cold). All my boys are helping me to work on both of these weaknesses thankyouverymuch. :) The other issue is that I am feeling lazy these days and I just didn't want to deal with Luke falling off a bike. He is comfortable with his training wheels, he can tear up the asphalt, why mess with a good thing? I have too much going on with Wil and Timothy. And then the mother guilt set in. So Luke is going to be put off the rest of his life because his younger brothers demand more? I can just hear the therapy sessions now!

So today, during Wil and Timothy's nap, when Luke asked about learning to ride his bike without the training wheels, I thought to myself, I cannot put him off any longer. So I said, "Go get your dad." And he did. And together we (well, mostly James) taught Luke to ride on two wheels. I wasn't much help at all. My yells to "slow down" or "watch the curb" fell on deaf ears as Luke took off.
And I do mean "took off!" I don't know what I was so worried about. There was no wobbling and weaving or cries from Luke for James not to let go. He was steady and confident and gave his dad a workout as I pled for him to stay close. They went around the block, practiced turning in the cul-de-sac, and then Luke asked if he could ride over to the neigborhood hill.

So we had a big day around here. Luke learned to ride without training wheels and I have learned to let him.

And Wil and Timothy? They are up to the same ole' thing . . .

That is Wil's dinner plate Timothy has in his hand. In the blink of an eye Timothy, who had finished his dinner and was on his way to the bathtub, returned to the table to polish off the remainder of Wil's turkey sandwhich. And then politely handed the plate back to Wil. Maybe they have a scam going and I am just now catching on.


When Luke was just a baby my cousin (by marriage), whom I have mentioned before, gave Luke a soft little blanket/lamb that was embroidered with his name. The gift was referred to as a "Lovey" but somehow I heard "Lubby." Luke being my first child and all I knew little about blankies, binkies, lovies, and other such things meant to comfort babies so I just accepted this odd name and started referring to the blanket with a lambs head as Lubby. And eventually so did Luke. Luke attached to Lubby within 30 seconds of receiving him and has not let go since. Until about two weeks ago.

Luke has really led the way in all of his big transitions. He told us when he was ready to use the toilet. We worked on it for a day or two and he never looked back. He was done with diapers, wasn't interested in pull-ups, and knew exactly what kind of underwear he wanted. I wonder where he gets this from? He told us he was done with the crib shortly after that. So into a big boy bed he went. The rails lasted about six months before he decided those were too babyish (and they were destroyed by him kicking them). Thumb sucking was next to go. We did initiate this with him at the request of his pediatrician and frankly thought it was going to be tough because thumb sucking and Lubby went hand in hand. He had a very particular way that he held Lubby while sucking his thumb. But he surprised us and dropped the thumb not long after we brought it up with him.
This is Luke around 22 months with Lubby and Clifford (who fell out of favor shortly after this photo).
Lubby? Well he is another story. We never pushed Luke to retire Lubby. We didn't think it was important, we wanted him to have that comfort, and frankly it was one of the only things left that seemed remotely little boy (apart from the emotional breakdowns, interest in lizard tails, and fascination with bodily functions). Luke has occasionally, over the last six months, made his own attempts at sleeping without Lubby but he always caved, telling us he was "very uncomfortable without Lubby." "That's fine," we would tell him, "there is no hurry."

Then one random evening at bed time Luke announced that he would not need Lubby anymore. "Why don't I put him in here in case you change your mind," I suggested. "No, mom, I don't need to sleep with him anymore." Just like that, really? But I didn't argue. I knew he wasn't going to budge. Sure enough he went to sleep without him. That night and every night since. I realized a few days later that I hadn't even seen Lubby since Luke made his decision. So I went searching. I eventually found him in our guest room closet, like this. . .
I am still not sure of the significance of the diaper on his head. Maybe Luke couldn't bare to look at him or have Lubby's bleached out eyes staring back, begging to be held. Or maybe the diaper was to remind Luke that "lubby's" are for babies in the event he lapsed and went in search of him. Of course, my mind goes to shame. I think he started to feel shame over still needing Lubby. And I don't know why. Our best guess is that someone at school was making fun of kids that still sleep with crutches. Just speculation mind you. But it sure did get us thinking about the impact of peer pressure. I'm not sure I am ready for all this growing up.

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