Nathan is now officially a teenager, having celebrated his 13th birthday a few days ago. He is acting like a typical teen in many ways, and is his own “Nathan” brand of teenager in even more ways.
He graduated from 6th grade this past Spring and started in middle school this Fall with new teachers and classmates. School has been a tremendous blessing for him over the past few years. He seems to do well with an established routine. These days, that daily weekday routine begins at 6:30am as his mother and I tag team his morning. I go wake him up, get him showered and dressed, while his mom gets him some breakfast and gathers his school supplies. Nathan is still not a morning person, but by the time he’s had his shower he’s pretty much awake and ready to go. One of Nathan’s favorite words to call people is “turkey”. He calls me that many times each morning. His bus drivers pick him up by 6:55am and we don’t see him again until they drop him back home around 2:30pm.
There are many stories to share about Nathan, but I will catch you up on just a couple. It looks like one of my posts a few years ago showed Nathan’s room “decorating” abilities. Another room related experience is as follows.
Nathan was on the top bunk of the bunk bed and he got a little too excited up there, and kicked a hole in the wall. No one was there to witness it, but he looked through the 7 inch hole and decided to push everything he could get his hands on through it. In went stuffed animals, a shelf full of books, toys, his electronic devices, and many other random things from the floor of his bedroom.
We were less than thrilled with the hole in the wall and upset about all the stuff that went through it. As I took a flashlight to the hole, I discovered that it was not a typical 3 1/2 inch deep hole, as wide as a typical wall - No, Nathan had found an area that was about 12 feet by 8 feet above an angled set of trusses (that is situated above the vaulted ceiling of the room below). This meant that there was plenty of room in this cavity for as much stuff as Nathan could find. Ugh! How to recover the items was going to be a challenge, probably requiring an enlargement of the hole to be able to reach some of the stuff that had gone deeper in.
However, this problem sparked an idea. Maybe, we could build a little room in there. You can see the results in the pictures I'll post below. Now basically we have an extension to the room that was caused by the original hole in the wall. The new space, now built out, is one of Nathan's favorite places to be. On many occasions we would find him choosing to sleep in the new annex, until we decided to move his mattress in there. He loves it and we affectionately refer to the space as Nathan's hole in the wall. Consequently, we have now replaced the pokemon stickers with glow in the dark stickers of the solar system and stars. Nathan LOVES the planets!
Speaking of favorite places, we have to include his outdoor haven. We hung a hammock under the tree and cleared out a part of the barn out back and built a large sand box for him. Since it is a covered space, he enjoys time out there all year long. He particularly loves to sit in the sand, grab handfuls of dirt, hold the dirt to his face and slowly let it fall, watching the wind carry the dirt wherever it wants. This gives Nathan countless hours of enjoyment, and yes, leaves him literally covered in dirt almost every day.
Nathan's sand spot in the barn brings up another important milestone for him - animals!
I mentioned in a previous post that Nathan has been deathly afraid of animals. When a family member brought their dog to our house, he climbed up on the counter, table or anything else to get away from it. But we have read about the benefits of animals for special needs children. Could this be possible for our son, who is so afraid?
We decided to try it out with the addition of a very small dog for Christmas 2017. Though our sweet little Havanese (Sofie) was as non-threatening as you could hope for, Nathan was definitely afraid. During the first two weeks of a dog in our home, Nathan would run to his room and close the door whenever he saw her. Over time (several months), he gradually warmed up to her to the point where he would not avoid her, and now he is not afraid of her at all. His overcoming of that fear has helped a lot whenever we encounter dogs outside the home, which is a great blessing, since so many in our neighborhood have dogs and other animals.
Recently, we learned of an opportunity for Nathan to participate in equine therapy (horses). We really did not think he would be able to even sit on a horse because of fear and physical inability. Having heard of remarkable experiences of other special needs children with this type of therapy, we decided to give it a try, and... success! Tara and I were shocked the first time Nathan was atop a horse. He has been to just two sessions so far, but he is doing amazingly well. Another incredible obstacle he is overcoming. Somewhat ironically, the first horse Nathan rode was named "Bear". Bears are among his favorite things, as evidenced by his stuffed blue riding partner.
As you will see in the pictures, Nathan loves his headphones and his stuffed animals. He especially loves to listen to Christmas music and to classical music. He also likes to watch videos of Pac Man, Minecraft, and Mario Brothers, especially if they are set to fun music or special sound effects. Here are two examples of Nathan mixing his unique personality and sense of humor with his headphones. Yes, those are pancakes on his ears and yes, the dirty forehead shows that he's just come from the sand pile. 😁
At this point we are overwhelmed with gratitude. When Tara and I learned about Nathan's condition when he was just three months old, we were told that he may never walk, talk, or function like a typical person, and it tore us apart. We wanted the very best life possible for him and resolved together that we would be united in providing such a life for him, just as we desired the very best for all of our children. What I didn't realize at that time is that there are human angels on this earth - individuals who have hearts the size of planets. Those who have worked with Nathan over his 13 years are among these angels. Teachers, technicians, doctors, siblings, bus drivers, families in our local congregation and neighborhood, and now specialized horsemen have cast a blanket of peace and love on Nathan and our family. I cannot be more grateful and in awe at their generosity and caring.
Finally, speaking of enlarged hearts, let's talk about Nathan's. As mentioned previously, Nathan has had numerous surgeries to try to correct many physical issues. One of the most concerning is still ahead of us - open heart surgery. He has an enlarged aortic root that will need to be replaced. As one doctor described to us, the root of his heart is much larger than that of a full grown NFL player and it keeps growing. At some point it will rupture if it is not replaced first. However, the risks of the surgery itself are not small. So we regularly see a cardiologist to monitor the growth of the aortic root and to decide the best time for the surgery, so Nathan is as strong as he can be in order to handle the surgery. The older he is at the time of the surgery, the better it will be for him. So we wait.
We love all who assist Nathan. He continues to make great strides forward. We are grateful that others have chosen to join us on this special journey. We include you when we call him "Our Nathan". Thank you!
