6 hours….

Oh dear Lord! The emotions, thoughts, anguish, fears…..

Its. All. Too. MUCH!

Lord, take this from me. Take my burdens and make them Yours…where they belong. My ways are not Yours. My thoughts are not Yours. You are The Healer, The Comforter.

What is going on, you say? Cystinosis. It’s just never-ending. It’s a thought, a black cloud that rules over my being. I can’t just push it out of my mind…be positive all the time…forget about it…I must do meds every 6 hours….I don’t have the luxury of pushing the thoughts back consistently.

Sometimes, I’m like a robot. I like it that way actually. Just do it. Right? Don’t think about anything, mix, get water, push through gtube…and go on. But sometime he asks questions. Sometimes, he says he doesn’t want meds. Sometimes he cries because he knows his tummy will hurt or it will make him sleepy. I want to scream…WELL…at least it will help lengthen your life!! But will it?

A 20-something year old passed away from Cystinosis complications just a short week ago. I want to ask her mother…was she compliant with meds? Did she visit the Dr regularly? Was it a bad kidney transplant??? WHAT WAS IT??? But, I can’t do that. That’s insensitive. Rationally minded Dawn, knows this. Questions go unanswered. I must tuck these crass thoughts inside like a little school girl wanting to pass a note her crush…but too shy….

Ugh.

Now. There’s talk of a cure. WHAT???? Oh that would be wonderful, right? Right? Oh, the joys of sleeping more than 6 hours, no tummy aches, growing like a normal child minus a needle poke every night…Oh, if it were only that simple. A bone marrow transplant (BMT). One that we haven’t even actually tested out on a real Cytinosis patient. One that has odds like 4 out of six. Yeah…so if 2 people die…SUCCESS! Success?? Two might die?? What if you aren’t the lucky one? This is a tricky game. You’re playing with my heart here! My soul, even!! I’m not the gambling kind. This isn’t good. This is actually quite bad. Like saying you can have a brand new house if you light it on fire first and pray it doesn’t burn! Like saying…like saying….your child could be cured….if he doesn’t die first. I don’t like this. Tears burn and sting like the crystals in his eyes as the sun streams in…

Cystinosis is an ugly word that turns something so beautiful like crystals…into something so very ugly. Crystals are so beautiful? Shimmering. Reflecting light…bouncing it back in a million different prisms….every form of color and light we could see…and not see. But…they’re ugly. They’re black to me. Not allowing cells to move. They freeze unwilling bodies. And sometimes…they freeze time. A beautiful young lady will forever be 20-something in the eyes of her mom and dad. Along with many, many others that fought the fight before she ever lost hers…

But…my faith doesn’t lie in  the scientists, the Drs, the others who have so bravely paved the way for my son, though their death….

It lies in Christ alone. I learn that every single day that I breathe. I re-learn it every six hours.

I learn it when my son is enthusiastically singing his new favorite country tune, or when he pops his drenched head from the shower curtain while water drops bellow and linger from his long lashes…or while he’s waving frantically toward me to look as he attempts (for the millionth time) to climb a tree… I learn it then because…instead of me basking in the thoughts of how glorious and wonderous those moments are to me, instead of living in that very moment….my mind easily wanders to every 6 hours. To the what-ifs, whys, where will we be…

I can’t live there. This I know. I try not to. I know better. I was raised better.  I have just enough knowledge about it all that it get twisted in my mind like a beautiful french braid. One tug…and it all falls apart.

It’s just where I am. In all of my imperfections, unholy thoughts and fears. It’s just me.

Today, Lord…..I ask you to strip me of the pain… of the burdens I feel in this life. Help me to feel Your Comfort. To snap out of it! Make me strong because He within me Is strong. I know you have plans to not harm me, I know by Your stripes we’re healed, I know if I seek Your kingdom…all these things will be added….I know this. Please….today…let me feel it. Forgive me for worrying when you so meticulously care for the sparrow. Forgive me for not trusting, for not reaching toward You more often. Forgive me.

Help me to be the mother he needs…the mother they all 3 need. The wife my husband needs. Help me to be a help to others. To not get caught up and wrapped up in our own lives that I don’t care for the orphans and widows. I was reminded again that this is my oldest son’s prayer every single day. Thank you for that reminder, Lord. Thank you for their hearts. Help me, the one You’ve called to instruct and care for them in this worldly life…be what You have called me to be.

Help me see this…instead.

His provisions

The past few months have certainly been a roller-coaster  journey for our family. I’ve learned different ways to cut back, like most Americans have! We never eat fast food or eat out, very rarely buy pre-made (frozen) dinners, I make our detergents, cut coupons, etc. You get the idea.

My husband, has his own story to tell…but it’s his…not mine to tell. But…what I can say is that we are now more alike in much of our thinking and in doing so, we’ve come together in very basic Christian teachings that are making huge impacts in our lives and our Christian walk.

So….down to the nitty gritty. How can you save more money (or simply pay all the bills you owe) when you’re giving away 10% right off the top? All I can say is you don’t. YOU don’t. He does. It happens and continue to happens. Enter into evidence subject A.

Do you see my savings??? That’s not just my grocery store’s saving card! I actually had some awesome coupons! I’ve been shopping at this exact store for a year and 1/2. I have NEVER received a 10% off my total bill-coupon, NOR an $8 off my bill coupon!! Not to mention the misc. coupons they mailed to me personally for purchasing the particular items that I do. Even the cashier (whom I go to almost every time, so she’s not new) said, “Whoa, I’ve never seen these coupons!” She went on to say, “You should do my shopping!” She actually kept holding my receipt while staring at it when it was time to hand it to me…almost in disbelief at my savings! All total, I saved nearly $100!! I truly couldn’t believe it. I’ve tried many, many times before to use and save coupons, but my savings have never been that much! It’s not like I stocked up on random things like 100 bottles of sports drinks, or 50 bottles of mustard, or 25 tubes of toothpaste, like on those extreme coupon shows. No…I purchased every single item on my list that I truly needed/wanted!

Bottom line…(and yes….I really have known this my whole life) give God what belongs to Him. Start with your finances. He blesses you in odd, yet meaningful ways!!

Spring out of crankiness!

“Yes, Virginia….there really is a spring in Connecticut.” Oh? That’s not how that goes, is it? Well, nevertheless…it really is spring! I see the signs! Oh, if the signs of life were only this easy to recognize. If I could glance at a budding tree and know…hmmm….I should take a left now. You know what I mean? Today, I looked at this tree….…and I knew spring really is here. The calendar told me (oh, ok the entire world) that March 20 was the first day of spring….but since having moved to Connecticut, I’ve learned not to believe those. But, I also saw this…There really was no denying it. And then not too long after…there was a gleeful….Awww, shoot. My cranky behind went all in and just had to bake something yummy- lemony and cheerful. So, yes…..these are my children licking the beaters from lemon-cheesecake bars….while swinging outside, of course. I’m really not certain how the recipe fits into spring. But….it did. Quite well, actually.

questions

I can make this post quick and straight to the point, or I could philosphize. nah. not in the mood today. A Target cashier asked if Grace (2 1/2) was Joel’s twin. Joel is 7. I won’t lie…..it hurt. It really hurt. I mean, I’m all for check-out banter, but please…stick to the weather??? So, the follow-up question made by my 7 year old was understandable…but also stung. “Mom…am I a midget?” He wasn’t kidding. He really wanted to know.

Don’t kick me while I’m down

Awww…go on ahead. I mean…I’m already here. Have a go. But seriously, it is hard to take blow after blow when you’re already down. But then again, who wants a kick when they’re high atop a mountain? I suppose either way it’s hard. But I’ll be honest…I’m feeling pretty whipped!

We received yet, some more not-so-good news. Quite frankly, I’m tired of bad news. But my husband…who is like a rock (??) these days informed me that it would all work out for His good and that He knew all about this mess before we unwound it!

Whew! How much more of a pleasant roller coaster ride this is with a supportive husband? Well, pleasant might be a bit of a stretch, but I can assure you that having your husband walk by your side (albeit a few hundred miles away) can really make you believe in..well, all of this!

So, stinky day? Most certainly. Hopeful, yet? You better believe it. I believe God will take care of my family head to toe…inside and out. All of the details. Every hair, every fiber, every penny, every drop, measured perfectly…and maybe even in 6 hour doses.

Where I am, is where He wants me.

I have the super power of being able to be everywhere at once. Ok, well…at least in my mind I do. And I really think I shouldn’t label it a super power but rather ADD, a huge stumbling block. My husband said something that genuinely resonated with me today. This statement alone confounds the wise, but I digress.

Chances are you know I was raised and lived my entire childhood in Florida, in one home…one cozy, little, warm home in a place called Niceville. Yep. Niceville, Florida. There really is a Niceville and it truly doesn’t get better than that. Or does it? Well, venture inside to one bright, out-going, destined for great things, naive, teenager and the answer is quite different!

I couldn’t wait to leave that one horse town! I wanted to sing….dance….anything!! Well….I married a boy from not too far up the road… I assumed my chances of getting out-of-town had dwindled down to nearly zilch. I was ok with that. Well, things transpired and we got a job opportunity after being married only 2 years to move out to Texas. We did and I loved it, but quickly became pregnant and immediately want to be closer to friends and family.

Time passed, we moved back and grumpy-ness found its way back in. We purchased our first home in 2004. I was so excited I couldn’t stand it. It was in a great neighborhood, relatively equal distance to both our families, close to an elementary school, etc. I immediately wanted to make it “ours.” In doing so….I willingly broke the bank and made Travis work major overtime to get everything the way I wanted it. Nevermind the fact that God had provided a home (a foreclosure) with no money down in a great neighborhood, close to our families…you get it, right? I turned a good deal, very bad. I suffered greatly for the risks I chose to make. I won’t blame it entirely on me…but we did lose our home. After spending nearly $40K in cash to remodel our home….we lost it. I was devastated. I just wanted our home back. Heck….I would even take it back the way it was before I invested in all of the upgrades!!!

So, on we moved to a…rental. Need I go there? It’s never yours…it’s never the way you’d like it. Something is always wrong. You feel like you have someone looking over your shoulder, constantly…blah, blah. So…yet again, I’m unhappy with where I am.

More time passes…we get to travel, stay in the Caribbean for an extended period of time…then…came….Connecticut.

I’m positive I’ve done my fair share of complaining. The weather, the price of gas, the lack of homeschooling families, the lack of sweet tea & cracker barrels. Yes, I went there. I’ve been happy too…but more often than not I’m certain I’ve whined.

So. What did my husband say? Oh, did I mention he no longer has the very job that moved us up to Connecticut? yep. You read that correctly. We’re now stranded in this…this….state. Now read this carefully….he’s….in…Florida….working. So.not.funny. God.

A lot has transpired the past 3 months. A WHOLE lot. And seemingly on the surface for the worse…but thank God….it’s actually for the better. Now…what did he say? He said….”I’m way more content than I’ve ever been. If God chose to move us all back to Florida, I don’t even think I’d complain about the heat and humidity.” That’s pretty big for him. He’s actually always way worse than I am and is never happy anywhere for longer than like 1 day. It really made me ponder (and obviously write this post). Is what I’ve been doing Godly? Have I been thankful for His provisions no matter what? It’s ok to look ahead, to wish, to dream…but to act ungrateful? ugly? selfish? No, no…I’m pretty sure those were never a command. So, somehow some way (though Christ, I can assure you) I will just be content. I will say thank-you more often to my Heavenly Father. I will try to find even more things in this place of this great country in where I can be a blessing. I will be joyful…even here….amongst the Yankees fine northern folk…..while my husband is in Florida! ;)

What I’ve learned while living in Connecticut

Well, as I re-read my own posts I realized I come across way more serious than perhaps I am. So, in an effort to convey my personality a bit more accurately…I proudly give you the following list!

Random things I’ve learned while living in Connecticut…and some things I probably should have already known.

1. How to spell CT.  No, really…thank you spell check.

2. Where CT actually is.

3. The tri-state area is apparently NOT, Florida, Georgia, & Alabama.

4. There are only two baseball teams and Braves isn’t one of them.

5. Florida cannot be where I was raised. I have a southern accent and Fl isn’t in the south.

6. South Fl is all there is to Fl. What is in the Redneck Riviera panhandle? There is more of FL west of Tallahassee…even north of Orlando???

7. They don’t like Wal-Mart.

8. “They” are still called Yankees by most of my family…yet I’m certain they don’t ever discuss the ‘War of Northern Aggression’ and we still reenact it. Please don’t tell my family we lost. It would be crushing.

9. I now know why rain boots were invented. Oddly enough, it wasn’t for splashing in an afternoon shower before you strip down after the skies are clear to jump in the pool.

10. Snow boots are real. Hats, scarves, coats, ear muffs….they’re not just cute accessories. You actually have to wear them…. every single time you venture outdoors.

11. You cannot wear flip-flops in the winter. Nor the fall…and not even really in the spring.

12. There are actually 4 seasons, not 2.

13.Basements.

14. SNOW.

15. Shovels are not in your garage to play in the sugary-white beach sand. Rather it’s to scoop and heave your way out of your yard….9 out of 12 months.

16. Kosher isn’t just for salt.

17. Bacon is supposed to go around fancy cuts of meats. Not in every single vegetable.

18. If you use the words “fancy” and “y’all” in your vernacular you will receive odd stares.

19. Grits are hard to find at the grocery store.

20. Grits aren’t served at cute little diners for breakfast or with fried catfish.

21. Oh my!! Where IS the fried catfish???? Hushpuppies???

22. Tea is hot??????

23. Tea isn’t sweet?????

24. Mullet is a laughable outdated hairstyle. Not a sacred festival on which my birth is celebrated religiously every October.

And finally…

25. I miss my family, friends, and weird redneck folks. BUT…I have met a lot of super great people here, too. We’re not so different.

Ok…who am I kidding????