Be that as it may, Nathan is doing very well. He is now 5 and 1/2 years of age and is learning new stuff each day. He goes to pre-school three times per week and seems to be doing well there. The plan is to have him start kindergarten this Fall. We will help decide which school has the program that will best suit his needs.
Mentally, Nathan operates more on a one to two-year-old level. He is learning new words, but rarely puts words together. Most of his communication is quite simple. He learned to say his own name about a month ago. That was a breakthrough day. He has also stopped calling his little brother by the name baby. It is now Ammon. Yeah!
Actually, having a little brother has been a fantastic experience. Ammon is three years younger than Nathan but is a good companion for him. They hang out a lot together. Of course, what they are best at is making messes, so their partnership is bitter sweet. :)
Making messes...ah, yes. Now we have come to the real talent that Nathan possesses. I am pretty sure that if there were a Hall of Fame for mess making, Nathan would be a serious contender. The other day we had guests over who remarked, "You know, it seems like every time we come over here, the vacuum cleaner is running." Our only response was with a smile, "have you met Nathan?"
That has become our family's answer for a number of situations in the house. "Why are all of the newly folded clothes now at the bottom of the stairs?" "How did the 50 lb. bag of sugar end up spread throughout the living room?" "Why is there flour between all of the keys on the piano?" "Who put Chocolate Dino Bites all over the computer keyboard?" and our personal favorite, "Who decorated the upstairs bedroom with the contents of dirty diapers.....again!" Sorry if this comes across a bit too graphic for you, but hey, that is life with Nathan.
Each of the above (real) questions is now answered with a question of its own: Have you met Nathan?
Yes, he must be watched all the time unless you want to deal with another mess. But that comes with the territory. You learn to operate a little differently in order to lessen the impact of the coming mess. For example, Nathan's room has little else in it besides his mattress, his bedding and a few toys. What we have hanging on the walls all must be out of his five-year-old reach. Those upper parts of the wall and the ceiling can still be sullied as Nathan has taught us. He is actually an incredible aim and usually hits his mark on the first try. When it comes to messes in his room, he has gotten proficient at hitting the ceiling fan and thus distributes his desired mess medium throughout the room in one fell swoop.
I mentioned that having a little brother for Nathan has been bitter sweet because of the messes the two of them can create together. It is bitter sweet for another reason too. While we accept and love Nathan just as he is, it can be a little disheartening to see his little brother become his "big" brother in most ways. Ammon has now long since passed him in most aspects of development, including speech, physical ability, and mental capability. Though not a point to dwell on, it is a steady reminder of the things Nathan will not be able to do in his life.
Nathan is healthy. That has been our number one concern for him since his birth. He is perhaps as healthy now as he has ever been. In the Spring of 2012, he underwent heart surgery to repair his atrial septal defect (a hole in his heart). The surgery was very successful and later MRIs show no complications. That is a relief. Unfortunately, those same MRIs show us that we are not out of the woods yet. As mentioned in a previous post, Nathan also has an enlarged aortic root, which means that that part of his heart is disproportionately large for his age. In fact, his aortic root is as large as an adult aortic root. When all is said and done, Nathan will eventually need open-heart surgery to replace that part of his heart. That makes us very nervous. We are currently in a waiting game. We have regular appointments to assess the growth of the aortic root. We don't want to do the surgery before it is necessary because of the possible negative consequences of the surgery itself (including mortality). But we also don't want to wait to long, knowing that doing so may lead to a fatal rupture.
The really good news is that the last MRI showed that the root did not grow faster than the rest of his heart. We don't have to check it again until this Autumn.
Nathan has a few favorite things. One of these is pencils. He is facinated with them. For Christmas he was given new stacks of them. He loves to carry them around, to organize them, and to roll them down whatever slope he can find. Without pencils, we would probably never make it through a Sunday church service without a serious meltdown. They seem to give him comfort and a sense of something familiar. Of course he can make a pretty good mess with those too. You would be surprised at all the places a pencil can be found/hidden/lodged.
He also loves anything with texture that he can hold in his hands. He can play in dirt for hours at a time and never want to leave. The sandbox under our walnut tree is one of his favorite places, but really any dirt will do. We took a family trip to Sequoia National Park this past summer. He couldn't have cared less about the massive trees, but all the dirt! He would frequently stop and drop to the dirt, lift handfuls of it and dump them on his head (or on his little brother's head). Pretty soon, he would be so covered in dirt and loving every second of it that tourists were taking more pictures of him than they were of the thousand-year-old trees. I can picture them telling stories of their travels, "Oh, you wouldn't believe the strange wildlife we found in California." :)
The list of Nathan stories is endless. I can't pick which ones to share. Okay, just one more. Nathan loves cups. Next to pencils, our brightly colored tumblers are his favorite toys. He can also drag a chair to the kitchen and get in the cupboard, which explains why we frequently have a shortage of anything to drink from. He can often be seen with a large stack of tumblers all organized by color. Sometimes he uses them to make kitchen concoctions. That is one of the risks you run when leaving ANYTHING within Nathan's reach. He will mix all sorts of stuff in his cups and will pour them back and forth between cups. He has actually gotten rather proficient in the dumping process, so we don't have as many messes with these liquid creations as we used to. We have discovered that watching Nathan making a new cullinary creation serves as an effective appetite suppressant. He will mix different liquids together, add in something to get real soggy, then partially drink it, swish it around in his mouth and then spit it back into one of the cups. It may be something like a fancy wine tasting, where discriminating taste testers swish and spit. I guess Nathan is like them, though his "palate" does not appear to be all that discriminating. (I personally don't drink wine, but have watched too many Frasier reruns).
Now, you may judge me for my next admission, but it must be said. Living with Nathan adds a great deal of stress to life. Everything we do has to be altered so it can be accomplished with Nathan. Every room in the house is frequently "Nathanized" which can be taken either to mean Nathan proofed or Nathan terrorized.
So here are answers to some frequently asked questions:
Is living with Nathan difficult? Yes, absolutely. It can be especially so for our other children (ther are six all together, including Nathan). The children are learning responsibility and patience on a daily basis. Not all days are triumphs in that respect.
Would we choose to have Nathan any other way? No. We want the best for him and recognize that he is a precious gift for our family. We also know that this is only a temporary state for him. After this life, we will have lots of good laughs with a completely whole Nathan. We look forward to that day, but don't want it to come for a very long time.
Does Nathan's health worry us? Yes. Though his health is currently good, our worst fear is to find him with a spirit departed. That fear exists in us every day. Each time I open his bedroom door and see his little chest move up and down I breathe a sigh of relief.
Is our life changed because of Nathan? Unquestionably. All of us are different because of our association with this special spirit. I believe it has made us better parents, better sibings, and a stronger family. Know though, that while life is altered to help accommodate Nathan, life moves on. He is one of six beautiful children in our home and each deserves and gets our attention. We still plan and take family get-aways. Sure people stare at us sometimes but let them.
I am out of time today, but had to share a little glimpse into the latest developments of a wonderful little boy: Our Nathan.
