To recap, we just need to hear that the pancreas test looks good... if that happens there may be some other non-asthma things to rule out, but the scariest scenario, Cystic Fibrosis will be taken off the table for now... hopefully forever!
The knowledge that he is a carrier (coupled with his symptoms), will leave us with some other decisions that we are currently praying about! Do we need to determine which of us passed on the gene? Would our families benefit from that knowledge at some point? At what point do we need to find out if the girls are carriers---or do we let them decide when the time is right? There really aren't RIGHT answers to these questions..... but that also means there aren't WRONG answers. So in the midst of what I hope are the final days of waiting, we discuss it and pray for guidance in the decisions.
A little more of my thoughts behind it.... because you KNOW there are many. IF Jason and I were both carriers as we spent the last few months fearing.... and IF we had known that prior to having children, what would that have done to us? Would we have our 3 sweet Ks today? Would a genetic counselor have given us the awful details of how life can be with CF...and more grimly what death can be with CF---and left us devastated-- and too fearful to start a family-- the traditional way at least? It kind of leaves me in a weird frame of mind.
I can make an argument either way with myself....and believe it or not, haven't really reached out to my normal sounding boards seeking opinions---because they'll be just that...opinions....and as parents, it's our choice....and I know with prayer, we will make the right one for our family!
Kenton's current medication seems to be doing a lot of good for him. We've had a few oxygen dips into the low 90's, nothing as scary as what we were dealing with.... but each time, it's regulated with in a few hours... unlike the days on end before. This encourages me.... unfortunately, as it seems to be with ALL prescriptions.... it comes with side effects! :/ Currently he is gaining "puffy" weight.... the doctor said he was getting "moon face" to be exact--- but if this is moon face... I think it's about the cutest moon face I've ever seen! Don't you agree??
So we'll keep an eye on those conditions, and see if we need to change our course at some point.....but for now, we're headed in the right direction.
He has been feeling great....and honestly, been a real crack up lately. Today, when he came home from school, I asked him how his day was and his response was, "I made REALLY good choices. (giggle, giggle) That's because, I left my bad choices in my backpack."
He had us doing the whole laugh til you cry bit the other night. He really struggles with bedtime routines, and the transitioning to that time of night. And this one was particularly rough. He was very upset and having a pretty good "meltdown". His amazing OT has trained us on some soothing type of rubs or techniques, and one in particular on the hands to relieve tension. Jason is the one who brings him to OT 90% of the time, because I have Kreslee at dance.... so he knows the techniques better...or so KD let me know. I grabbed his hands and was trying to do a soothing rub in the middle of his hysterics, he instantly stopped crying--and in a fighting back tears voice said, "Really, Mom?? Let Daddy show you how to do it." We started laughing so hard that of course he did too....and the situation was diffused, despite my failed technique! Those are the moments I want to remember forever.
A couple of other things to celebrate--which is such an understated word here! This momma is screamin' these new developments from the rooftop! He is starting to communicate with us more... engage us. Some of the early concerns that I referenced in one of my initial blogs that led us to the Autism diagnosis, were that he never drew us in to what he was doing. Praise was completely lost on him. Most children beam and turn it up a notch when they know they have an audience... he was completely un-phased by any attention. Neither Jason or I could recall ONE SINGLE "Look, Mom!" (or dad) to show us something he had made, seen, etc. While he can speak, make mostly appropriate sounds articulation wise, he struggles a great deal with communication--- and I've shed many a tear, just PRAYING for the day, that he'd hop in my car after school, and tell me a story about something that happened. Not answer a question...but have something in his sweet little mind, that he wanted to involve me in.
So a little over a week ago.... he was with me at his big sister's basketball game... and was sitting 2 chairs down from me, playing a game on his Nabi. He came over to me and said, "Mom, can I sit on your lap? I want you to watch me play this game!" After the puddle I instantly became was mopped up, I let him climb up in my lap... and for quite a bit, he sat there and played. Every so often, he'd glance back to make sure I was watching him. I know this sounds sooooo "normal" or minor, but for me...and HIM... it was HUGE. My mom was sitting next to me, and we just both kind of sat there stunned, but oh so happy!
Then today REALLY got me! As I was getting him ready for school... for the FIRST TIME EVER.... he said, "Mom, I want to tell you what happened yesterday at school." He proceeded to tell me a story about some of his friends in line, and although I didn't quite catch it all, it was something that he really thought was funny. He didn't bust it out on the car ride home immediately following the day.... but in his own time, he shared it with me! Something is connecting between that little brain and mouth of his!! And I have no doubt that may have been the FIRST story from my boy...but it won't be the last!
There aren't really words that I can use to even convey just how much that moment meant. Something I've waited for, for so long... and PRAYED for... being answered...at honestly the most perfect of times! I've been wanting to be able to just flip a switch and get meaningful conversation from my son... but I wasn't the one that could do it.
We sang the most beautiful song at church on Sunday. Every single word of this song can not be more true of our situation. I feel like it was written for ME....and it was a part of worship for ME! (How vain, really?---but surely you've been there before?) I was so moved by it, I could barely sing it. So I'm sharing it with you.
I beg of you to take a few minutes and listen. Believe it for you---not just me in my situation! He's there. He's FAITHFUL! We NEVER walk alone. I'm having to learn more than ever that he is in control....and the LESS control I have over circumstances---however hard it may be, allows him to be MORE in control....it allows HIM to get the glory!
As hard as it has been---to hand over the "control" of my son, and as humbling as it is to know, that sometimes WE can't fix it all... I know his Maker has big, HUGE things in store for him....and this momma is going to continue to learn how to enjoy the view from the backseat for a change!
Listen....it's beautiful!
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