Friday, August 27, 2010

Sweetie Pie

As the parent of a young child with complex issues, you learn little cues about your child that no one else knows. For instance, I know that when Nate's face swells just a little and his eyes gain grey circles underneath, it means that he is struggling somewhere in his body. This finding usually always makes me stay on alert for any other cues to stress or illness in his toddler-sized body. Sometimes the culprit manifests itself...sometimes he returns to normal after a few days. But there is always something in and around his eyes that cue me that the little guy isn't up to par.
This learning of secret, unspoken cues has been a skill we have been working on over the past couple of years as I learn more about my son. It isn't for just those who struggle more regularly than others though...there are clues that make me aware that the girls aren't feeling well too. Emma's glossy-eyed look (nicknamed "sick eyes") and Abby's unusual weepy emotions are what alert me that they aren't quite themselves. Through multiple experiences, we get to "know" our children better by paying attention to their unique alarms. It's a special part of being their intimate closeness that most others do not share with your children.But then, as in the case with Nathan, there is so much that I do not know about him. So much changes with him over time, and we are constantly having to partake in a good amount of guess work when it comes to knowing him better. So you can imagine my excitement when he has recently been able to tell us how he feels, what he feels, when he feels it, etc. This last bout with his belly has been tough to witness at times, as he verbalizes so much better now. His poor belly bloats so badly as the day wears on, due to slowed motility in his stomach. He routinely comes to us saying "I have a mosquito bite in my belly" while clutching his stomach in grimaced pain, or telling us that his back hurts, while putting both hands on the small of his bowed back due to the worsening pressure of his stomach. While playing guessing games to figure out what he is feeling is tough enough, it is definitely harder to hear him expressing his pain.On the flip side, we are learning more about how he feels about certain aspects of his daily life with medical equipment. He tells us which meds he likes and which he hates. He tells us which doctors he wants to visit and which therapists are his favorites. At the end of each session with his aquatic therapist, he looks at her and says "Bye-Bye Sweetie Pie" in his most adorable flirtatious voice. He definitely gets points for that one.
One of my more eye-opening experiences with his expounded vocabulary and ability to describe how he is feeling happened this morning. After being off his O2 for about 10 minutes right before taking Abby to school, I put him in his car seat and placed the cannula back on his head for him to set into his nostrils himself. He looked at me with his big brown eyes and said "Thank you for giving me my oxygen. It makes me feel so better." Had he heard me talk about that at some point in the past? That due to the fact that he has never fought the oxygen from that first day he got it a year ago is probably due to the fact that it does indeed make him feel better? Or is he genuinely able to feel the difference and express that now? I don't know. But I sat there in awe at how old he sounded and so thankful that he is able to help us understand him more each day. He's a real sweetheart, this kid, and I am so very thankful that God has decided to lend us this strong and tenderhearted son. He's my sweetie pie.


Tara on August 28, 2010 at 9:07 AM said...

Great Pictures of Nate in his cowboy hat, so cute! That got me, when you said he thanked you for his oxygen. And when I was reading and you where talking about his eyes, I said to myself he has...sick eyes and then you said it too! O immediantly started thinking about our trip to KY a couple of years ago! Love ya!

His Mercy Endureth Forever on August 28, 2010 at 10:02 AM said...

This brought tears to my eyes. Your little boy is so darn cute.

Anonymous said...

Bravo again Ams...the way in which you express yourself about your family just makes my heart swell! I think about you all and pray for you all daily!

Heidi on September 2, 2010 at 4:11 AM said...

Always love reading your ma-ma thoughts Amber. I can relate. He is so beautiful.
Heidi & Jack.

Mighty Mito Mom on March 10, 2011 at 12:54 PM said...

My baby's eyes get very "droopy" when she is fatigued.

I love your writing and your son is too cute!

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