Freckles, Tiny, & Bullet

Bailey, Emma, Hayden & Jarrett
with their amphibian friends

This past weekend Hayden caught three toads. He and the neighbor girls named them Freckles, Tiny, and Bullet. I sat on the driveway and observed the kids play with their new amphibian friends. They even held toad races by lining them up and seeing which one reached the sidewalk first. This seems like a typical thing kids may do, but for me it meant so much more.

Toad races, with Hayden in the lead

One of the things I used to worry about when Hayden was younger, in addition to his health, was whether or not he would have friends as he grew up. Not just acquaintances, those are easy to find. But real, true friends. The kind of friend that will look past the huge scar on his neck or his inability to ride a bike. A friend that will accept that his speech is severely delayed and who will learn to interpret Hayden's version of English. I used to pray that someday he would find a friend who would accept him and show him what it meant to have a friendship.

We moved into our house in the Spring of 2006. I remember looking out the back patio door and seeing two young girls playing on a swingset in the next yard. They appeared to be about Hayden's age. I wondered if they'd ever be interested in playing with Hayden- or would his play be too slow-paced for them?

A few days later the girls' mom introduced herself and girls to me in the front yard. We discussed our children's ages. The younger girl, Emma, was one year younger than Hayden and the older girl, Baily, was one year older than him. To my surprise the girls actually wanted to play with Hayden! They asked about his scar once, I told them what it was from, and then they went back to playing. They accepted him for who he was.

Over the past four and a half years Hayden and the girls have grown exceptionally close. They exchange May Day baskets, birthday presents, and Christmas gifts. Bailey tends to push Hayden to be brave and do things he may not have otherwise done (ride a two-wheeled scooter) and Emma is more gentle and calm, talking him into coming in the house with me when it's bedtime, or reminding him to stay back from the street. 

Often times when we pull into our driveway the girls will run out of the house screaming "HAYDEN!!!! Wanna play?!" It's like they can't get enough of him. And for some reason I'm still surprised when this happens. I'm so used to other children staring at him (adults too), pointing at him, wondering what's "wrong" with him. It's such a relief to trust that these two girls truly want to be with Hayden and enjoy spending time with him. Sometimes they'll even beg to come to our yard or Hayden will whine until we let him go to their yard.

This is why watching them Friday with their new toad friends meant more to me than it would to some mothers. I can't take for granted that my dream for him has come true. These girls have taught him more about friendship and acceptance than I ever could. He has picked up so many social cues from them that no amount of behavioral therapy could teach. I will be thankful for the friendship they have shown him everyday for the rest of my life.

The Decision

I clearly remember the day Jason & I decided we were going to try for one more child. I had been visiting my Grandma Shearer in the nursing home. My aunt made a comment, jokingly, about how someday it'll be me visiting her in the nursing home. We chuckled, but once the laughter stopped, I really got to thinking about it. I knew I would be able to visit and help take care of my parents should something happen to them. A daunting thought, but naive to think it won't happen. As selfish as this may sound, I was saddened at the thought of maybe not having anybody be able to come visit me, take care of me, look after me. It's not that Hayden wouldn't want to, it's more a question of whether he'd have the ability to. We don't know what the future holds for him, but any parent of a special needs child will tell you that the focus isn't just on today, it's also always on the future, for we have to plan ahead more than you care to know. I fully accept that Hayden may never drive, never marry, never have his own children. I have come to terms with this, and I'm not trying to be depressing- this is just a fact that I have faced years ago.

With this thought going through my mind, I also began to panic at the thought of what would happen when I'm gone? When Jason and I are no longer able to care for Hayden? Who will look after him and truly have his best interest at heart? It's a scary thought for any parent, but even scarier when you know your child does not have the skills to make certain decisions on his own. Keep in mind, I'm truly not trying to be negative about Hayden's condition, these are just my honest thoughts and it's taken many years to be okay with saying these out loud.

That day I went home from visiting my Grandmother and decided to have "the talk" with Jason. We'd often discussed another baby before, but at one point a geneticist said Hayden's condition could be hereditary. We had even altogether ruled out another child, for fear we would have another medically fragile baby. Luckily, after years of genetic testing, including a trip to Harvard Medical in Boston for lab work, the genetic theory was thrown out. Doctors decided Hayden's condition was random.

Jason and I discussed the advantages of having another, which included peace of mind that Hayden would have a sibling "in his corner." I want it to be known that we, in no way, decided to have Jarrett for the sole purpose of being his brother's keeper. This is absolutely untrue. We wanted another baby so badly for five years while we awaited the verdict of Hayden's diagnosis. With that being said, we cannot overlook the obvious idea that down the road Jarrett could one day play a key role in Hayden's support system.

The decision was made and on June 8th, 2007 at 10:10 pm Jarrett Troy was born. He has fulfilled every desire I've ever had as a mother. He is every bit as loving as Hayden, whom he bares a strong resemblance to. He's also kind, gentle, caring, and determined just like his brother. The two have a strong bond and learn from each other. They can be fighting all morning, but if one gets scolded or is sent to his room, the other brother is right there to defend and comfort the one who's just been punished. It's been rewarding to observe this bond tighten as they grow.

Yesterday I got a glimpse of Jarrett's protective, brotherly love shining through. They were playing in Hayden's bedroom and I heard Hayden start to cough. He didn't sound like he was in distress, so I wasn't worried. Jarrett, however, was concerned. I overheard him ask "Hayden you okay?" Then he said in an urgent voice, "I go tell mommy." Pretty soon I could hear the pitter-patter of his little feet in the hallway coming my direction. When he reached me he blurted out "Mommy, Hayden coughing. He sick."

What a little dear. My heart swelled with pride. Even though Hayden really was fine, it was nice to know that Jarrett was looking out for his big brother and knew to get attention when he thought there was cause for it. It seems small, but it's moments like these that make me hopeful for the future.  Hopeful that one brother will make every effort to care for his brother, not because he has to, but because he loves him enough he wants to.

County Fair

I love county fairs. When I was growing up my dad was on the fair board, so I remember spending a lot of time at the York County Fairgrounds. I love the animals, the demolition derby cars, the rides on the midway, and of course, all the fair food that you only allow yourself to eat once a year (namely, funnel cakes).

Last week Jason and I took the boys up to the Saunders County Fair because we heard they were having a demolition derby with combines. Now, my boys love farm equipment as much as the next Nebraska kid, so we thought this would be right up their alley. The boys, both donning their favorite John Deere t-shirts, were geared up for the derby and couldn't wait for it to get started. They were giggling with anticipation when the combines sluggishly entered the arena and took their place. We counted backwards from 5 and the derby began! Hayden could barely contain his excitement- he was standing up on the seat of the bleachers trying to get the best view. Jarrett, on the other hand, saw the combines smash into each other and instantly started wailing "No, that hurts him. No, that hurts combine. No crash combine!" People sitting around us were so nice and tried to comfort him. We were all telling Jarrett that the combines like to crash and they think it's fun. Unfortunately he didn't buy it and whimpered throughout the whole show. The last combine standing was a John Deere, so that pleased Hayden. Jarrett was just glad the combines weren't getting hurt anymore.

This past weekend the Lancaster County Fair got up and running, so we took the boys out to that Friday. Our first stop was the pig races- always a favorite with my boys. Next we visited the petting zoo, followed by the antique tractors, and then onto the horse barn. Some of the 4H kids were brushing their horses and let us pet them. We were meandering through the rows of horse stalls and I turned to tell Hayden something and noticed he was not behind me. He wasn't with Jason either. We called for him, but no answer. Panic set in...did he wander off? Did somebody lure him off? He was just beside me. Where did he go?!

Then I heard a little voice, "Mommy look!" He had found an empty horse stall, let himself in, then shut the door behind him! He was checking out what he called the horse's 'bedroom.' I quickly looked around to see if the horse's owner was near. Actually, my first thought was to search for the horse he'd just let out...but luckily it was empty. We retrieved our curious son and decided to check out the bunnies and chickens next- Hayden can't fit in those cages.

We ended the night by letting the boys choose four rides to go on. (I know four rides doesn't sound like a lot, but at $3 per ride per child, it was all we could afford!) Watching their faces light up as they went round and round on the rides took me back to my younger years. Even though the motorcycles and boats they were riding were completely stationary on the platform, I think they actually thought they were driving. They moved the steering wheels and honked the horns, waving every time they would go by us.

It was a memorable evening and reminded me of my childhood and the small town I grew up in. While there we ran into a lady from our church, a former classmate of mine, and one of Hayden's teachers. The boys (and their parents!) were hot, tired, and exhausted when we got home. But all agreed it was a fun family activity that we'll repeat every year at county fair time.

Bonding Over a Frog

Last night Hayden was walking around the house with his little hands cupped around something. When I asked what he was doing he presented a frog to me. Just like that. As if it were normal to be walking around with a frog inside the house. Some children might carry around Matchbox cars, action figurines, GI Joe dolls (oops, sorry, my brother always used to tell me GI Joes are not dolls). Anyway, most children play with nonliving objects in the house. Not my Hayden. He has always been fascinated with bugs, frogs, and worms from a very young age.

I agreed to let his new friend stay in the house, so long as it lived in his bug habitat. We got the critter set up with some water and grass in his new home. Hayden even named him Billy, after his favorite tv show Billy the Exterminator. (Does this surprise you that his favorite show would be about an exterminator?)

This morning we got up and Hayden helped me make monkey bread. I was cleaning up the kitchen following breakfast when I heard squealing and hysterical laughter coming from upstairs from both Hayden & Jarrett. This struck me as odd because all morning they'd been fighting, pushing each other's buttons, and tattling. Curious, I walked upstairs and followed the happy sounds to our master bedroom, and then to the master bath.

I found the boys side by side, both in t-shirts & undies, intently watching something going on in my shower. As I approached I discovered the source of excitement: Billy the Frog had been let loose and was hopping around in my shower. (Mental note: spray shower floor with scrubbing bubbles cleaner & scrub before entering.)

I sat there and watched the boys before quickly running for the camera. Who would have thought that a frog could have caused these brothers to go from bickering to bonding on a bathroom floor?

With cinnamon still on their faces from breakfast,
Hayden & Jarrett share a moment with Billy the Frog.

Hayden's Plan

As a mother, every now and then you will have a moment when your child makes you so proud, and at the same time, pulls at your heartstrings. This afternoon Hayden & I were leaving a building following an appointment he'd had. As we were walking down the hallway I couldn't help but notice the smell of it reminded me of my Grandma Shearer's house when I was growing up. I've heard that out of the body's five senses, the sense of smell is more strongly linked to a person's memory than any other sense.

I told Hayden about the hallway smelling like my Grandma's house. He did know my Grandma, but unfortunately his memories of her consist of watching her wither away due to late stage Alzheimer's. I took Hayden with me to the hospital when I'd visit Grandma in her last weeks. It always amazed me how gentle he was with her. In fact, the day before she died he wanted to brush her hair. That's the last memory I have of her is watching my little boy brush her hair and seeing a smile come across her face because she knew she was being cared for. 

Of course during the funeral Hayden was very concerned about the casket. Was Great-Grandma in there? Was she sleeping? Where was she going next? I couldn't help but wonder what was going on in his mind. Death is hard for any child to understand (even adults!) but when his brain doesn't work normally, I can only imagine the idea of death being even harder to grasp. I think the hardest part for him was not understanding where Grandma's body went after the funeral. I tried my best to explain it, but felt like I failed miserably in that department of parenting.

Today when I mentioned my Grandma the first thing he said was "Grandma die." Even though it's been nearly three years, he is still concerned about her death and funeral. He followed that with "Grandma buried?" I answered that yes, my grandma wasn't with us anymore & we can't see her, but that we can still think about her whenever we want. And then he said something that for some reason just broke my heart, but also filled it with warmth. He was tagging along beside me in the hallway and asked, "Mommy die?" I hate to think about this, I don't know anybody who does, so I tried to answer matter-of-factly that yes, Mommy will die and that everybody dies at some time. He proceeded to tell me his plan: "Mommy sick, Hayden take care. Mommy die, Hayden bury."

Ack...hang on, let me get a tissue! I can't even describe to you what this meant for me. I remember years ago, while visiting this same Grandma in the nursing home,  I had an awful feeling that as I get older, I may never have a child who is able to look after me, care for me, visit me in a nursing home or hospital. It was almost a feeling of panic, not only would I be alone, but Hayden would be on his own if I were sick. Granted this is years in the future, but at the time it was a daunting thought for me.

Many times Hayden has surprised me with his insight and I have come to realize he comprehends a lot more than I realize. This was one of those times. I had no idea that it was even a thought of his that he'd try to take care of me. Like I said, it just tore my heart out when he said it, but at the same time I was overcome with a feeling of proudness that only a mother can feel. Apparently I should not be worrying too much about the future, for Hayden has a plan.