Here We Go Again

Some of you closest to me were probably expecting a blog to roll out last night.... honestly, I was just to numb to do it. 

I laid in bed so heartbroken all night long, just praying this was all a bad dream.... ironically enough, about half way through the night... my sweet 7 year old, Kambree, came tip-toeing in... she herself had had a bad dream......"Mommy, I just need some snuggles." And snuggles she got.... the rest of the night.

A few months back, at the end of January, we were celebrating that our son Kenton had escaped a Cystic Fibrosis scare....and in that blog, I touched on the decisions we would have to face as parents in regards to whether or not we would need to have the girls tested at some point, to see if they were carriers.

Throughout his scare, I couldn't help but have fears that my older daughter, had several of the "symptoms" boxes checked. I just knew that we had to focus on one child at a time. The past couple of months, we took some time to enjoy the dark cloud finally being lifted....but every time I heard her mucousy cough..... my mother's intuition kept saying, we really needed to have her tested.  She has had this cough for as long as I can remember..... no cough syrup, allergy medicine, honey concoction has touched it.

We had her annual well child check last Wednesday.... and after some discussion with her doctor, we all agreed, the repercussions of not finding out, could potentially be worse than finding out.... and so the sweat chloride test was scheduled for yesterday.

 

If you recall from my son's test, you want the numbers from this test to be low.... a score above 40, puts you in the borderline/intermediate category---requiring some more investigation (Kenton's' score was 52)... a score above 60 is considered a positive result for Cystic Fibrosis.

 

 

About 6:00 last night, I got the call.....

 

"Kambree's numbers were very high."

 

"How high?"

 

"115."

 

And just like that, our world has once again been turned upside down.  Based off of that test, our sweet baby girl has Cystic Fibrosis.

 

Today, I am waiting for a different phone call.... what's next? Where do we go? When do we go?

 

And I'm fighting off the demons in my head.... about what this all could mean...

 

Most days, I feel like I am just barely doing all that's needed to keep Kenton on the right path with all the support and therapies he needs..... I'm having such a hard time wrapping my head around how I am going to be able to be the needs of all of my sweet children. As hard as it is for me to admit, I feel like I am drowning.... and I know that only God will get us through this.

 

Our hearts are broken.... we are stunned to say the least.

 

Here's what I do know.... I have been beyond blessed with so many amazing friends and family.....and they all just happen to be amazing prayer warriors too!  

 

1. Pray that we get more answers soon.

2. Pray that I can keep all the plates spinning, and be everything to all of my kids.

3. Pray for Jason and I emotionally, as we struggle with knowing that this awful disease, is genetically caused by the two of us together...how can that be? 

4. Pray that this going untreated for 7 years, hasn't caused any lasting damage.

5. Pray that this doesn't mean the results for my son were wrong, and that they missed something.

6. Pray that we would have the right words to explain this situation to Kambree.

7. Pray for healing.

8. Pray for a cure.

9. Pray for us to find strength and peace from the hope that we know we have in Christ Jesus our Lord!

 

 

Thank you for following our families journey, through this crazy world. Thank you for loving us.

We will get through this.... with support from all of you....and with our faith in God. 

Lost and Found

This morning on the way to church, I was thinking it was past time for an update here.... there were a lot of different things running through my mind I "needed" to chronicle. Unfortunately, they all got trumped by this afternoon's (for lack of a better word) excitement.

I've made jokes since my son was two years old, about how his "Houdini" like abilities. I've said more times than I can count, that if you blink... he's gone. He's quick as lightning, beyond discreet--sneaky really, and the longer we go through this---the humor is disappearing....and it's being replaced by sheer horrification. Is that even a word? (It didn't put a red line underneath it, so we'll go with it.)

I know horrified is a pretty strong word, but what else do you call it when your stomach is in knots, your heart is pounding, your mind is racing... you feel physically ill with worry?

Today, Kenton disappeared. We wrapped up a lovely lunch at Mama D's. We were doing the usual, clean up and load up routine.... he came in to the kitchen and sweetly requested a strawberry for the road.... took two.... and then, moments later, we were making our way to the car, and there was no Kenton.

I wish I could say this was the first time... but honestly, I've lost count of the number of times this has happened....although today---was one of the scariest.

Typically, the first few moments you realize a child is missing, you just know they are there somewhere close, right under your nose... and don't panic. For us, any time he is out of sight, we know that could mean he is ANYWHERE.

After the "obvious" places came up with no sign of him, SIX adults dispersed----inside, outside, calling his name.... and NOTHING.

I was running  around my parent's house, just praying I'd see his little feet sticking out from under a bed, or hear him snicker in a closet as I walked by..... just like he does when we play hide and seek. I kept thinking I'd hear my father's famous whistle signaling he'd found him.... or see my husband walking up the hill holding his little hand. But none of these things were happening.

I know every parent reading this, can relate to some degree.... that moment where you realize your child is out in this big wide world, and you "their protector", has not a clue where they are.

That tiny little part of me that stays calm in situations like that, continued to say, "He's fine. He'll turn up. He can't be far...he was JUST requesting strawberries." And a much larger part of me, was thinking of headlines I've read about children with Autism disappearing, and how many of those don't have happy endings.....and feeling like I was on the verge of a 911 call....and a full out search party.

Just when I was really starting to lose it---and give in to my helplessness, I heard some yell, "We've got him"....... and all I could think was "Thank you, Jesus! Thank you, Jesus! Thank you Jesus!" The entire search was probably 5-10 minutes..... but I assure, it felt like an hour.

My mother gets the award for finding my sweetie---she noticed a light on in my dad's vehicle in the garage, and he was laying still and flat in the back..... playing "hide and seek". I do not know what possessed him to go and hide, or what made him think of getting in there. He does love confined spaces... or maybe he was just blocking out the chaos? Most likely, he just gave in to his impulsive nature.

Long story (blog) short (they never are).... he is found! He is safe in his Daddy's arms, watching a movie.... and after a long snuggle-fest and talk with him..... and about 1000 "I'm sooooo sorry Mommies" with this expression....

(looks JUST like his Dad here)

 

....I will spend my day 1/2 wallowing, and 1/2 thankful.

 

 

So allow me to take advantage of the "It's my blog, and I'll cry if I want to!" rule! I do try to stay pretty positive.... and I KNOW that the blessings in my life FAR out weigh the struggles... but man, this is hard stuff.  I don't feel as though I can EVER let my guard down. EVER! Every time we go anywhere...it's a death grip on his sweet little hand. I do feel like we are attentive parents... but situations like this, leave you with such a huge feeling of inadequacy. Questioning your abilities to keep him safe. They leave you wondering how many "close calls" you can get through, before one of them doesn't end so well. Today, as it turned out, he was "hiding".... other days... he's "wandering".... both equally scary.

 

I know.... "all kids wander off", "all kids have tantrums"--- remember, I have two other kids... I do know this to be true.  I assure this is not my attempt at saying, "I've got it worse".... that's really a competition I have no interest in winning.... but the facts are... it's different. This involves dealing with a brain that views the world differently. Children with autism.... have an impaired sense of danger. When you add that to their often impulsive behavior and curiosity....it's downright scary. 

 

I've read many articles on the "wandering tendencies" of children on the spectrum. It's truly terrifying.  One article said it best.... that the wandering "is terrifying at it's best.... and tragic at it's worst"..... and that is what we live with. The fear that next time this happens.... and it will... the ending won't be one of hugs, and long talks, and "I'm sorries." It could be one that permanently leaves us with that inadequate feeling.... and much, much worse.

 

Just knowing how many attentive and loving parents have gone down this road, and not gotten their happy ending makes me physically ill with empathy.

 

So what can we do about it? For one, if you see a sign like this in a neighborhood....

we can try to be extra attentive. If we see a child unattended, and something doesn't seem right.... we can err on the side of caution...and investigate.

 

We can remember the next time we see a headline of a child who has wandered off, to let our feelings be that of concern and empathy....and not of judgment on "what were the parents doing?" It may be that the parents... just blinked.

 

We can PRAY. Pray for parents that struggle through situations like this daily. PRAY for safety for these beautiful children, whose impulsive nature, can lead them innocently in to harm's way.

 

Through the beautiful world of Facebook, I've been connected with an amazing mom from Oklahoma, who has been instrumental in getting communities set up with "first responder"  information for children on the spectrum. Getting police informed with things they are interested in and drawn too, as well as a photo on file, so that in the event that the child goes missing.... it can be dispatched out and the search can start with more time efficiency. I've neglected to make that call, to find out if we have something like that in place....and if not, to see if I can be instrumental in helping to accomplish something of that nature here..... so tomorrow.... #1 on my "to-do list" is to see what I can find out.

 

That will be far more productive than replaying today's events.