Thursday, January 30, 2014

Ben's Bad Hair Day

Sean made fun of Ben's hair one morning. He said it was sticking up and looking silly. I told him not to make fun of his brother. Minutes later, I walked past the bathroom and saw Sean spritzing Ben's hair with water and brushing it.

The photo was hard to get, but I thought a visual may be needed.

Friday, January 24, 2014

Sean's Bad Day

When I was five years old, a neighbor friend and I decided to run away. I made it to the end of our driveway when our next door neighbor, known for his early morning hours spent manicuring his lawn, noticed me and asked what I was doing outside at 5am. I don't think I even responded, but I high-tailed it back to the house. I was grounded for a week. In the 38 years since then, I never thought about how my parents felt about my near run away. I don't remember what injustices lead my friend and me to think it was a good idea to leave the comfort of our homes and hit the road. I can't seem to remember a plan either. I do know that I wore my fancy blue shoes.

Last week, I received a text from a neighborhood friend saying that I needed to call her immediately. She found Sean walking down the street from her house and picked him up. By the time I got the message, Sean was safely in school and all was fine.

This story is pieced together mostly from what Sean shared with me and some from others involved. Break down in communication, unclear procedures combined with a scared, yet audacious boy made for a harrowing tale:

Sean was dropped off at school very early, unintentionally. He walked into the front office and not seeing the usual hustle and bustle of the opening of school, he declared that he was late to school. The secretary told him that he was most certainly not late, he was very early and although it was even too soon for the cafeteria, he could walk down there and wait for school to start. Sean protested, but in the end he was sent down the hall to the cafeteria.

As Sean approached the cafeteria, he realized it would be noisy and he would not know anyone. Sean's kindergarten class eats lunch in their classroom, so he is unfamiliar with the cafeteria. He was frightened, confused and scared. Just as he reached the cafeteria door, he made a decision and turned left and headed for the doors that lead outside. Sean's intent was to walk home, but when he spotted his teacher's car, he decided to look in his classroom windows and find her. He looked twice, but his teacher was not there.

Walking home would be a walk we have made approximately 800 times in the past four years. It is a ten-minute walk, about four long blocks and includes crossing an easy intersection with an all-way stop and another difficult crossing of a busy two-lane street.

Sean walked about half-way, crossed at the all-way stop and continued walking on the grass, along side a fence. It was at this point, that our friend found him. She could tell he was sad, but when he saw it was a familiar face, he looked relieved. My friend made several phone calls, drove by our house and when we were not available, she finally brought him into the school, which by this time was open for business. Sean was no worse for the wear and ready to get to class.

Ryan and I took several days to process the situation, understand what happened and decide on how to proceed. At the very least, all parties involved needed to take pause and understand how each small incident could have lead to a very bad result. Nothing like this needed to happen again to our child or any other.

We were so thankful to our friend for having driven past Sean at that exact moment he needed her. To her, she did nothing extraordinary, but to us, she brought our child to safety.

Not sure if it was Sean building his defense or irony when he brought home Franklin's Bad Day from the school library that very same day.

Wednesday, January 22, 2014

A Fishy Story

Last Sunday, we were excited to watch the Carolina/San Francisco playoff game and went to more trouble than we usually do and invited a few people over. Not a huge party by any means, but we had caught the football fever and wanted to share it with others. A lot of good it did us, but that's for a sports blog writer to complain about. Our story only took place on this day and has nothing to do with football.

Just as the game was about to start, Logan yelled for me. He was upset because he thought one of our African Dwarf Frogs had lost a limb. Although I was truly the last person qualified to look at a missing limb, I did. Indeed, a bloody stump was where the left front leg should have been. I also noticed, to my horror, that the little frog was incredibly thin.

Once I confirmed the injury, Logan spiraled into a crazed child, complete with unintelligible screaming, flailing and threats of fainting. Although, I was fairly calm, I was not doing so well myself. I love frogs and I hate blood. We quickly deduced the other frog or one of the fish had become violent and attacked the frog.

I really did not want to pull Ryan from the game, but I didn't know what to do. Logan was inconsolable, a frog was missing a limb and a violent aquatic animal was loose in the tank. This was a crisis.

To say Ryan was not annoyed with the rantings and ravings of his wife and son would be to lie to you; however, he is a good husband and father and within a two-minute Panther timeout, he assessed the situation, calmed Logan down, and asked me to call the specialty store where we purchase all our replacement fish and frogs.

I described the situation over the phone with the salesperson.  He was doubtful about our story that the frog was attacked. He explained that mollies and frogs are all docile, definitely not prone to attacking one another. He said it was more likely that the frog got his leg stuck in the filter.

Instantly the story finally became clear: the frog's leg was stuck in the filter and could not get food. This explained the very skinny frog. We did not notice because the tank is in Logan and Sean's room and the boys were not allowed in their room for a few days while Ben's ceiling was being repaired.

Just like James Franco in 127 Hours, the frog had to rip off its own leg to survive.

It has been over a week and he is still living. I bought special frozen worms to help him gain back his weight. It seems to be working because he is definitely putting on the ounces. He is fairly lethargic, and we have to watch that the injury does not get infected. We are cautiously hopeful.

If someone had warned me that my week would only get more challenging, I would not have believed them. But alas, the universe had other plans for this family.

Monday, January 20, 2014

Go Fish!

Gale, Ben's physical therapist, started working with him in the pool one year ago.
Ben has always liked the water. He has received lessons or therapy for the past six years, with lots of recreational play in between. Ben's progress has been phenomenal over the past year - working with Gale, his physical therapist, combined with all the water work we did in the pool last summer made a difference. Endurance and confidence in the pool increased, and Ben's ability to move his body deliberately in the water is remarkable. Ben goes where he wants in the water, and if he decides he is going to chase a brother, watch out!

Gale is jumping at the bit to get Ben in the swimming event for the Special Olympics, but she, I mean, Ben will have to wait. This sport does not start until middle school. I try to tell her it is just more time for Ben to improve his stroke, but she is ready now. Gale's excitement and enthusiasm definitely drives her to push Ben. However, she makes sure he has fun and knows that having Sean and Logan as part of the session is a way to motivate Ben.

The local YMCA has been generous and kind in letting us use the pool with Ben and his therapist. We truly appreciate their support. It is pretty cool when staff stop by to see Ben at work, and today, I noticed a fellow swimmer, stop and watch Ben for quite awhile. Many have been amazed at his improvement - he has come along way from holding onto our necks for dear life.

With a life jacket on, Ben can swim the length of the pool, especially if he is racing with his brothers. This is with minimal help and only to get his legs down from the PT. He propels himself through the water using his arms and legs.

Today, Grandma and Grandpa were there to watch and he had a smile on his face the entire time.

Ben sees the stairs as a place to rest...just for a minute. Gale keeps him off his toes, so to speak!

Thursday, January 9, 2014


When it rains, it pours at our house. In the midst of the scramble for a wheelchair (the sweet tale in my previous post does not portray the heartache of finding a chair for Ben), we developed yet another issue:

On the Sunday after Christmas, it rained miserably. The roof over Ben's room (and Logan and Sean's) is a shed roof, meaning it has a very gradual, almost flat roof. We have known for about four years that replacement was imminent. About two years ago, we made a temporary fix. In my grand plan, when the accessible bathroom was built, this roof would be replaced. Over the past couple of months, I noticed bubbling on Ben's wall when it rained and in the weeks before Christmas, I saw damage on the ceiling from water. It did not look good.

That same Sunday, the sun came out and it turned out to be a pretty day. I was thankful that the rain had not made the situation in Ben's room worse. Boy was I wrong. About 5 o'clock, I checked on Ben, and water was pouring down from the ceiling, just above his desk and computer. I grabbed Ben and yelled for Ryan.

With a nail hole to relieve the pressure of the water and a bucket to catch the stream, we were able to contain any damage. Although, it quickly became apparent that half of the ceiling's dry wall was filled with water. To my untrained, non-construction eye, it looked like it would cave soon. With Logan's help, we got the computer, books and other items out of the room.

More than a week later, Ben is still sleeping on the couch, or in our bed when he manages to throw Ryan and me out. Incidentally, I write this post at 4am because said thing just happened.

I did not want the other boys traipsing through the wreckage or breathing in the dust and insulation so all three boys slept in the family room while the worst of the clean-up was completed. It is an old house and to get to Logan and Sean's room, you have to walk through Ben's room to get there. For the boys, it was just another adventure sleeping in a different room, one with a television. They were sad to put an end to the Scooby Doo marathon when Logan and Sean were able to go back to their room.

Carpenters have replaced the boards around the outside area so a roofer can come in and do his job. In the meantime, Ryan tore out the ceiling and the wet insulation and replaced it all. Ben has a newly painted room awaiting him. But as I know better than anyone, construction takes twice as long as anticipated.

With Ben's furniture, clothing and books scattered throughout the house, dry wall dust coating every surface and college playoff games being missed because of work to be done, Ryan and I remind each other that "this too shall pass." It could have been a lot worse if the ceiling had fallen in while Ben was sleeping or while we were away. It was lucky that it happened when it did.

Ben has tried numerous times to get to his room. We have explained the situation, but it is apparent that he misses his boy-cave. By the time this posts, I am hopeful, he will be back in his own bed.

Tuesday, January 7, 2014

Bronzy Locks and the Three Chairs

Once upon a time in a city not too far away, a family went to church on Christmas Eve. Just as they arrived, their red-headed son's Convaid Wheelchair broke. The metal cross bar under the chair cracked in half. The mother, in her panic, contacted the medical supply salesman, simultaneously praying for forgiveness for texting in church.

Over the next week, different chairs were suggested and tried. One pink chair did not have transit ties for the bus, and the brothers of the boy cried, "Thank goodness!" A blue one so large, the red-headed boy's father fought him for it. Finally, after much searching, a blue one was found in just the right size. Although a loaner, it will work just fine.


Wednesday, January 1, 2014

Happy New Year's Day!

Long time ago, I heard an old tale that what you do on New Year's Day, you will do all year long. 
Based on that, Ben has a good year coming:

Running with Logan down a timed track.

Time with brothers at the park.
Caught reaching for donuts by Sean, a blossoming photographer.

Chilling watching Spud from Bob the Builder.

Happy New Year - hope your day was a good one!