Monday, September 12, 2011

Positive Aspects

Scouring the internet the other night (read that: vegging on various facebook statuses), I pondered a question that sought genuine answers..."What are some positive aspects of having a child with special needs?"

I found that it was a hard question to answer...not because there aren't positive aspects to this specialized life, but that in our situation it contains way too many of the admirable aspects of normal life to be deemed as "special". If you looked past all his "equipment", numerous meds, the fact that he is the size of kids half his age, and his waning energy level compared to other 3 year olds...well, Nathan is a totally normal kiddo living life exploring and learning and enduring and loving. He is living this life as if he doesn't have a clue that it is indeed considered a "special life". As a carefree preschooler, he is blissfully unaware that he is different. And in a lot of ways, we are as well. 
But if I reword the above question to "What would you miss if you didn't have a kid with special needs?", the answers are easier to retrieve...

The obvious first answer is: the numerous people we've met through the unusual circumstances of this life. I feel like I am beginning to sound like a broken record in mentioning how thankful I am for the amazing people who have greatly enriched our lives the past 3-1/2 years...people who we more than likely would have never met if it weren't for Nathan's life. People who we call friends. People who we love. Those amazing individuals have made our lives better in many different ways, and I don't want to imagine our life without those relationships.

But the most influential part about this life that I would miss if it were different is the way it has changed we have grown individually and as a family. We look at life completely differently now than we did before Nathan was born. We have been given the amazing gift of truly enjoying each and every day in a way that most others can not fully understand and achieve. Thinking about the future has been replaced with thinking about the beauty of today and the amazing moments of daily life in our family. That, to me, is the most positive aspect of having a child like Nathan.

And speaking of the little guy, he got home Friday night from a short 24-hour stay in the hospital again. He had a rough week motility-wise with some intense retching, pain and bloating and just not tolerating food or his g-tube feeds well at all. He also couldn't tolerate the large volume of meds that he takes each morning and was vomiting them all back up within 10 minutes of having them placed through his g-tube, despite the anti-nausea meds we were giving him. A quick trip to see our surgeon Thursday morning confirmed our suspicions that one of the leads of his temporary GI stimulator had come dislodged again. Since he won't get the permanent one for another month, we agreed that the leads needed to be replaced.
So, he was admitted Thursday night for overnight fluids, and he went back to the OR Friday morning for the revision. He had a harder time coming out of anesthesia this time around and was horribly combative when he woke. He also had a harder time with nausea and vomiting afterward as well and didn't start to perk up until late in the afternoon. I think that having sevo (one of the anesthetic agents they have used) 3 times within 6 weeks has taken its toll on the little guy, as his response to it is getting worse each time. Hopefully the docs will use a different cocktail of drugs for the longer surgery coming up. Anyway, we were discharged Friday evening. And with the exception of a neuro appt this week, we hope to take a short break from the medical world for the next month. With his surgery and a trip to Houston coming up(as long as Nate is recovering well by that time), October is going to be nuts.


jengame on September 13, 2011 at 10:55 PM said...

Love and hugs for the little man. He is so brave and adorable!

Kyla on September 23, 2011 at 11:59 AM said...

When will you guys be here in October?

Amber on September 23, 2011 at 12:59 PM said...

Kyla, I actually just canceled that trip this week. It was just too close to his surgery to put him through that long trip. We're hoping to be able to come in January, as long as we can get the appts during the same week...still working on that.

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