Remember that ‘no apology living’ we (I) was working on? It’s going great, I was about to start off by apologizing for not updating you sooner… (gimme a second while I write this down for the counselor, lol).
About time for a praise report, can I get an Amen?? Praise God, we are much less ‘crisis’ than the last time we chatted all night. Evidently after perusing the 50 page inspection report was not only enough to deny the extension (to get the roof), but to decide they definitely didn’t want to cover us (regardless) with ‘all the risk’ of things that need to be done. So…we have found a policy which isn’t as good, with a company not quite as good, but it buys us a little time to get the roof on and repairs made so we can go back to a good (& less expensive) insurance company! PRAISE GOD!!! (& thank you to our incredible insurance gal who has done so much to help us through all our chaos- love you V).
More? You want more praise report? Well, fortunately for you- I got it for ya! As usual- people. People are the blessing. People are the encouragers, the helpers, the ones that show up just when we feel alone as we can be. The day after my last post, my phone had several texts from a few friends who were determined to find a way. Sweet C woke up on a mission to figure out our farm & Christmas for our littles. That day had a few of those sweet calls, messages and texts…but it was certainly a day we held close together but felt so disconnected from the world we once knew. It’s part of our new reality that has been a real challenge. I wonder if whoever wrote that, ‘You find our who your friends are‘ was a spoonie too…
Back to talking about feeling the love <3. Many were reaching out, unable to do anything, but wanting us to know that they love us and are reaching out to anyone they can think to help our family. I don’t even know how you thank someone for that, if you know, I’m all ears (no budget, but all ears 😉 ). Our smallest can soooo definitely not read this- but if we had the pen & money for feed…we were even potentially offered small goats for our little farm girl. ❤ So. Much. Love. That girl would lose her sweet little mind 🙂
So, here’s the update- fortunately now we have at the very least- 30 days to figure out this roof and exterior wood rot/garage issues. Then the rest we can take our time with (as planned). For Christmas (shhhh), we had planned to do a few things…we created a list for those who had asked, talked with our amazing kiddos, and decided to ‘create them a room’ for Christmas (they know we are in the hardest of hard times & that the Santa gift-giving spirit will be coming from angels in our lives this year). Here’s a little of our craziness (thankfully breaking up the stress)… a perfect stranger (client) talked to sweet B at his work and offered him a bedroom set. For free. Hardly used. What? So, we are going this week to pick that up <3. Today I responded to an ad for a rocking chair for something crazy like $40 (have you ever priced rocking chairs?!?! what?!?!). Anyway, I asked if the price was negotiable and if so if we could look at it (we’ve wanted rocking chairs for our patios since we got here). The person was so kind and after exchanging a few emails, realized it was the father of a student of mine from 7 years ago! ANYWAY, B, he and myself all got to talking…and he is helping us find, fix & refinish some furniture and get the kids rooms ready for an epic Christmas reveal. My sweet girlfriend showed up at the farm today to teach me how to make her AMAZING chicken & dumplings, delivered us a couch (which is such a luxury after not having one for weeks). Sweet B’s work was amazing for him to be there for my lumbar puncture (post for another day…it was not a pleasant day for anyone involved, my dehydration resulted in 2 facilities and probably at least 7 spinal pokes/digging before they could tap me for sap (or spinal fluid, whatever). Talk about pain. I puked on my poor sweet nurse J (sorry!) during the first one and wouldn’t let go of her hand. Instead of sympathy puking, she just held me hand and stroked my hair <3. Why wasn’t B? Because he had just left the room getting sick from seeing them shove a needle in my backbone…glad it wasn’t just me. 😉 Unfortunately it was several painful days following, still not incredibly comfortable (& of course out of medicine :/). All in all, we got fluid so it was a success…and we’ll be happy to never have to go through that again 🙂
The days following my LP were a blur. <3). B was able to take off an extra day (or 2? I seriously cannot keep track of days this week). I kept waking up throwing up (much more violently than usual). It was odd. I slept almost…however many days that was. B- thank you for taking care of me, making sure I had meds, taking care of the house/kiddos & for always being so amazing with my daily ‘lift assist’ into & out of the shower ;). Mom- comfort food, taxi service for the kids, flowers when we got home, batch cooked food & a starter set of freezer containers- THANK YOU<3 Strangers who sent my husband home with bags of food, a whole turkey, a roast, rice…kind stranger- I pray someone blesses you ten fold! My sweet self-adopted sisters- thank you for always checking on me, for comfort food, the couch, I mean…seriously we don’t have that long- I love you both (& of course the B.I.L. for snagging us the coolest pre-kinda-lit tree ever). It feels soooo much more like Christmas. Adopted M& D- I love you, thank you for bringing us into your family, for arriving with a car full of groceries, for repairing the pump, teaching me to change the switches & for attempting to get me to eat every time you’re here (& for amazing Mom hugs when my Mom is away & for letting me ‘borrow’ Dad as my self-adopted Dad). M&D- thank you for being patient when answers take forever or when we’re impossible to get in touch with. We love & miss you. Our life…well let’s just say the things we list on the blog are a very small window into the craziness that is our world. Auntie K…seriously. What can I even say? You walked us through our baptism…and then you never walked away. You have shown up with warm food, love offerings, and hugs when we felt so alone & confused. We love you. ❤ A.A.- out of nowhere Auntie K tells us that you are ‘on it’. Your heart is so big and I love you just so much.
Remember this morning? When the world was full of sunshine, rainbows and hope… when we were high-fiving about how great our kids are turning out and about how we have less than a month to figure a roof out?? Ohhhh….those were the good old….hours.
This day. There are so few words to describe this day…I mean, it’s a family show. I don’t even know how to describe our personal current crisis to people in under…I don’t know…an hour…then add in sobs…brain fog…and dysphasia. Gracie Kelly is a Hot.Mess. Friends. If I were to try to wrap it up in under, let’s say… one season of ‘This is Us’…it would go something like this-
Hi! I’m Gracie Kelly
Looooong story a little shorter- My husband (we call him sweet B) and I got married in August of 2015 with our feet in the sand at sunrise in auth Florida. Well….we have to back up a little. Our bridesmaids & adorable best little man were our four daughters and son. Just as a family who adopts a baby from birth wouldn’t refer to their child as formerly being anyone else’s…our children will forever be referred to as our children (even if they don’t always want us to) because as of that day in August…we are a family and they have since been every bit as much sweet B’s babies as my own. Then, as if God wanted to fully solidify this already concrete (for us) belief…an unexpected opportunity was presented for him to adopt those amazing, beautiful, talented…(proud much? #OurKidsAreAllIncredible) kiddos…he of course, never skipped a beat. Only 8 short months from the time this guy said I do…he said it again, only this time to a judge. To loving kids, even when they don’t like him. To try again and again, every time he falters, never giving up on them. He told the judge it was just the paperwork confirming the vows we made just eight months before. Normally the judge turns and asks the mother some questions as well…his heartfelt answers satisfied everything she needed to know. She smiled for photos, hugged our family, and wished us well as we finished our hearing.
Okay…fast forward again (throw in new husband/new dad…of 5…3 of which are teenage girls…and lots of other fun speed bumps life threw our direction for sake of time). Just as fast as sweet B became a new father of 5…year 1- our oldest graduated and moved out on her own. Year 2- our 2nd oldest graduated and moved away to college…2 hours away…the 3rd oldest & I (sorry if I embarrass ya Smurph) cried the whole way home together and wanted to turn right around to pick her back up. Year 3- the 3rd oldest (Smurph as you may have guessed…& just for the record- not her legal name….;) ) graduated and is off going to school and changing the world as we knew she would. So in his first three years of marriage this new dad of 5 began the empty nesting process each of the subsequent three years. And did I mention in June of this year our family was the first family baptism at our Church’s new facility?? Life crazy much???
And yes, this mommies heart and arms ache daily still for each of our grown babies…
All the while…. I had gone from working 3 jobs as a single mom of 5 down to just 2 jobs as a new (& incredibly excited but also chronically ill and worsening) bride & mom to 4 at home, affording me a little more time for wifely things…like learning to cook without using the smoke detector timer…who knew?!
This past year we made the decision for me to drop to one job…that’s another season entirely. Loooooong story short- I surrendered my position as a headmaster to preserve a mission I ran, loved and invested so much of my life into for over a decade, which was also now my sole income after expecting not only to continue my tenure…but to expand my mission and eventually, professional position. Unfortunately, life had different plans- but as with everything, God had us. I wept in the office of the pastor I worked with as I read the 5 page resignation letter explaining my heartache at the realization after unexpected expansion expenses and lack of expected funding…that I was surrendering my position to allow the school to reabsorb my salary allowing them to continue the good work as they sought funding for the needed move. It was heartbreaking. I had been valedictorian in a male-dominated education field, hold a masters from ERAU and a pilot’s license. My ability to draw a significant salary was there…but my heart never was. My heart, even in my short absence from mission work into the world of high paychecks and booshie parties…knew I wasn’t where He wanted me to be. So back to mission-work I went. It made my heart happy. Unfortunately, it didn’t make our bank account happy (hence, usually working at least 2 jobs at any given time), it didn’t make my student loan creditors happy (education does not pay what the aviation education costs…I assure you), and it did not make for much of a much-earlier-than-expected happy retirement. All the years I was there, I never put money into my retirement…because the school would have been required to match it…and the money at the school needed to go to teachers, students and supplies. Real World- 1, Gracie-Kelly- Big.Fat.Goose.Egg
Okay….are we rewound or fast forwarded? I can’t remember.
Marry Sweet B
Go from 3 to 1 job (s)
Resign headmaster position in tears
Give up entire salary with no plan (but total family support- love you B, littles & Mom)
Decide to stay home for a bit to restore my health.
Great right? Right! Wait. No…
So then we go to our new primary doctor (who by the way is literally the best doctor with the most incredible staff you have ever hoped to come across in the fanciest, most expensive research facility…okay, he would probably be stopping me at some point in there…but seriously, how he doesn’t have a waiting list 10 yrs long for his care is beyond us)…and he (in my first visit, although I’ve told him I know it’s unrealistic to expect this of him every time for every patient…) diagnosed my MS this past July. Like. Nailed it. First visit. This guy. Keep him and his family in your prayers please because he has been an answer to ours. Anyhoo…after much turmoil and talking, we decided to forego Mayo (sorry if you already read about that) and continue under his incredible care until we absolutely have to go anywhere else (& even then we’ve threatened crying, begging, 😂). So this coming Friday- the 8th, is my Lumbar Puncture (spinal tap) followed by several days of bed rest because my body is a punk (keeping it clean, we usually call it much, much worse names…). We had hoped B would be off of work, but it looks like it’s just Mom, Me and Doc with a giant needle in my back draining out a few tablespoons of CSF. Prayers please? Thank you! (& again…for the sake of time, we won’t go into insurance fun, denial for prescriptions that would only improve ‘quality of life’ tell me again what insurance companies cover with money we have to pay each month regardless??? Because evidently quality of life drugs and things of that nature do not rate the price tag…but that’s a post for another day…, and fun things like that).
Sooooooo, where are we again? Okay…B & GK. Add 5. Stir. No, shake. Actually, put it all in the blender, put it all on high, take off the lid. Now you’re seeing it…Okay. Add in MS (Again- for sake of time, add 1 lb numb hands/feet, 1 gallon tears, 5000 bruises, 6,000 falls/trips/stumbles, 4 c of dysphasia, about $5000 in counseling, over $10,000 in medical bills fr useless tests…etc, etc)… This is not a recipe you give to a friend (not one you want to keep anyway)…
So – B & I make the decision to list our (then) current home and downsize to something smaller, easier to manage and where it will have room for me to improve my health without our financial complete implosion. So grown up right?! We thought so too! Not so much. First we were told the house would list for (are you sitting down?… It’s okay, I’m sitting down), over $30,000 more than we owed on it. Great! Right?! We thought so too! (Are you always this agreeable?!) So we went about fixing and repairing everything we could, praying for the homes future family and purging through over a decade worth of “stuff”…
Meanwhile… while we entirely expected to have at least an offer on our (then) current home before really getting serious about looking for our new downsizer/fixer upper…we found our farm. Seriously, from the first time we saw the listing. It was the one. First one we fell in.love.with. There’s a great many details in here that we’ll save for an entirely different time (as you might imagine…it’s a doozy).
Soooo we begin the process of purchasing the farm (as you know, we’ve been talking). We hit lots of speed bumps, had LOTS of new heroes (Mel <3, Jay, Mr Jones, …) and were able to get the loan to get our farm. As you may (or may not…if you’re like me- a spoonie w/crazy brain fog) remember, we bought the house because
Sweet B is a sucker for his wife falling in love (this time w/a farm), and
Sweet B used to be a lender (not a fun industry) & knew that the advertised ‘recent appraisal $40,000 above asking price’ was the equity we would need to borrow against to make the repairs the farm required to be insurable. Soooooooo…… the appraisal that we ordered didn’t come in until 3 days before our closing…also, sadly, days after our underwriter made us close ALL credit lines in order to approve our loan. If that was the only way to get our home, we were willing to make that credit-destroying decision (breaking my banker-B’s heart a little). Now, credit destroyed, all other options effectively off the table…we got our appraisal back…within a stone’s throw, and no where close to even $10,000 above asking. So there we were…(at this point, with a new realtor dynamo duo who averages 2 wks to sell a home…who also gently broke the unfortunate news that we would be lucky to break even on the sale of that home…and that they not only read our story- but were doing everything in their power to help our family…God bless these amazing women. They have done everything they’ve promised & then some… All while dealing with our current crisis mode, flairs and challenges with Grace and kindness! We, just- tonight- accepted an offer, just days after listing, on our old home and –YAY?!– SO Very excited not to pay to give up over a decade worth of daytime, nighttime, weekend working, nighttime college and ridiculous sacrifice…Praise God for you ladies <3), to get back to my original point before the run-on tangent (sorry…squirrel)…there we were…no $40,000 equity in the farm that needs a minimum of $10,000 in repairs in 30 days for the insurance to continue covering our home…so the bank doesn’t take it back… No profit in the sale of our old home….no money in the bank after months of my not working…no credit left after being required to close them all to get the loan…from falling in love with the farm, to getting the farm in the final hours…to homeless for Christmas- Not. Okay.
So. I reached out today to our sweet, sweet insurance gal. She is amazing, got us bids, quotes and unicorns at a moments notice for us to get our farm. I called in hopes of good news, extensions, anything. She is looking to see if she can find us a policy that will buy us some time…but as it stands, we technically had until Dec 8 to make ALL the repairs on our FIFTY PAGE inspection report…that’s in 3 days. Also the date of my Lumbar Puncture followed by days of bed rest. Okay. Still praying. Still trying. Anything to find a silver lining. Even our amazing insurance gal, not only is doing anything in her power, but offered love and encouragement to my pathetic sobs into the phone. It was Mama-Bear Panic Mode…except now I’m demylinating. I can feel it. The flare is setting in as the stress level rises. Sure enough, within hours my vision was fuzzy, foot was being a jerk & this hot guy beside me is likely to have a shiner tomorrow with my current lack of peripheral vision. Today as I learned that we may be homeless 1 day before our son turns 13 and 3 days before Christmas, I reached out to anyone I could think of. Incredible friends reached out to offer love, referrals to friends/family roofing companies. I contacted someone we were referred to who was calling around to see about helping us. He had come up with nothing. Another roof bid tomorrow…but pay with what?! And installed by Dec 22, nonetheless Dec 8! We were presented with an interruption. A completely unexpected alteration to our life. It’s hard to ‘plan ahead’ for interruptions of quite this magnitude. Even still, I thought we were adulting pretty impressively all things considered. We made the decision to sell the house, we knew we couldn’t financially withstand AND reduce stress/me not work. We decided to get a less expensive home, 40 minutes out of town, in need of love and repairs, in order to afford a farm we just love, a farm we were ecstatic about and a property for me to rest, recuperate and soak up all the vitamin D this MS body could take.
Sounds like a pretty good plan all things considered, right?! We sold nearly everything we owned knowing we would have little help for the move (C, J, Dad, other momma, mom, B, Dan, Dave & Couch…can you imagine if we hadn’t?!?! #MisFitFamRocks #DidntWeHaveFriendsOnce) and with my unsure footing, randomly numb/burning hands and often inability to drive…I wasn’t really tallied as one of the ‘adult helpers’ for the big move (at least as far as lifting/driving/walking… You know… Qualities you want in people carrying dishes, fragiles,…). At this time, mind you, we fully anticipated making between $10-30,000 on our last home and having plenty of equity for the repairs at the farm. So, we’ll just get new beds at the farm and planned to keep ‘stuff’ pretty minimal anyway. Well…here we are. No credit. No cash. No equity. No roof. No floors. No way to pay for fifty pages of repairs way out of our skill set. No idea what to do. Here we are. In love with our sweet farm. And facing losing that too. Despair? We’ve arrived.
So…I’m not sure where in our little time warp we were last. But here I sit. With you. B beside me, running his hands through my hair to calm my nerves as my fingers soar across the keyboard searching. For answers. For hope. For enough words to leave my thoughts to let me rest these weary bones. Today we reached out to many places. We are so blessed to have some really amazing people in our life. They are praying along side us. They are reaching out on our behalf. They are holding us up as we get too weary to. We close tonight’s chapter Praising His Name. Knowing that the only way will be by His Hand. Truly the way all things are. And as an incredible stranger prayed with me today, fear is not of Him…so I’m focusing on His promises, His peace and our many blessings. This kind stranger has joined arms with our out-of-the ordinary and unexpected army of prayer and life warriors doing all they can to help us save our farm. Tonight- it’s that love and support that nourishes our burdened hearts and calms our weary minds.
So tomorrow- it’s back to figuring out how to make 50 pages of costly and skilled repairs happen in…3 days. Just as I went to make a quip about the impossibility of the magnitude of the things we needed happening in that amount of time…seriously, what could be possible in 3 short days… well, let’s just say it was a timely reminder that put me right back in my place. 😉
This morning I woke up excited about a fun Christmas surprise I want to create for our amazing kiddos. This evening I worried that it may be pointless if we’re facing losing our sweet farm before Christmas is even here. As I thought about a prayer from earlier today…going to bed on this note would be living in fear. So…I’m off to work on a Christmas project that involves our children’s rooms- here at the farm. If you would join us in prayer- THANK YOU. If you want to help with repairs- we have lots of tools but not enough skills or supplies. If you are interested in purchasing a 2015 white Nissan Altima- we purchased one just before my diagnosis currently for sale for whatever we owe on it (?$15,xxx?) also desperately need it off our shoulders. If you want to help with a roof, garage door, supplies, discounts, grants or loans…you are welcome to send me a message here, text if you have my info (or call & try to decipher through tears if you dare) or you can shoot us an email at email@example.com.
In other news- a few quick thank you’s and prayer requests. Let’s do requests first- you know me and real names…for incredible warrior Kat & her co-worker who are kicking cancer’s rear at the moment (& even still reach out to encourage us- xo). Also Frank and his family. To be entirely honest…I don’t know what he does. A dear, dear friend & her husband sent his number (J&CC- BIG thank you <3)…so I called. I called, I cried, and this amazing man prayed with me and offered to do anything he can to help our family. He called sweet B this evening. I still have no idea what he does, isn’t that ridiculous? I’m not sure if he’s a contractor, a community resource hero, no clue. But tonight he’s on the shout out & Thank You list as well as the ‘keep this earth angel & his family in your prayers’ list. Thank you kind sir. Mom…how many stores did I walk out of bawling on my phone as you took care of everything, making dinner,….so many etc’s. You are priceless- we love you. Kiddos…who, seriously, would smile this big if we told them this was their new bedroom (Oh yeah, I’m SO not ready to joke about that…but also so not kidding- these guys are way incredible warriors for the King with hearts too big to fit in their sweet little yet much too grown bodies).
Adopted fam- you know who you are. We love you so crazy much. ❤ Sweet C- always checking in & encouraging in our darkest hours. xo M&D- thank you for your love, patience & support. There are more…but everything hurts…and I’m determined to end this night working on the Christmas idea for our amazing little people and leaving everything else in HIS Hands…at least for tonight!
For tonight, a very exhausted & weary B & Gracie in need of prayers…and a serious real life Christmas Miracle.
Sorry for the ridiculously long silence treatment. It wasn’t you, it was me…
Life has been…I really don’t know what adjective to use. Interesting? Challenging? Overwhelming? That last one probably comes closest to be honest. What a wild ride we’ve been on. I can’t even imagine trying to fill you in on the trials and challenges we’ve had from the last post to now. Thankfully, we have endured and remain encouraged from the family, friends and community reaching out to us during this season of our journey. From ‘adopted’ family arriving with a car full of groceries for us to cook our first Thanksgiving meal in our new home… to family & practically strangers sending financial help. It’s hard to be in this place. Being humble when you’re down is tough. But we are without words grateful for the small but mighty tribe who has stood with umbrellas ready to help us weather every storm.
Today we received a letter stating that our home owners insurance will be cancelled if we are unable to repair several things, the biggest being our roof, by December 22. That, unfortunately, would end in us losing our sweet farm. I’ve stepped up my praying game and keep unpacking boxes in hopes of finding a few treasures forgotten to sell to help pay for the roof. The estimates we’ve received so far are between $6800-$7200. Our underwriter required our credit lines be closed to get our home loan. Having gone through a majority of our savings with me not working…we’re beginning to run short on plan B’s…outside of a good old fashion Christmas Miracle. If anyone has ideas (or miracles), we’re all ears! We are working with an attorney to set up a Medical Trust account for those wanting to help with medical and related expenses, but have created a place here until that is ready after going through legal review and set up. If you click on the ‘Raise the Roof’ tab, there is a place to donate. I’m working on a page with items for purchase as well…hopefully up tomorrow!
I’d love to say that we’ve been pushing through all of this with positivity and joy…but that’s not always the case. We’ve been stressed. B’s been hiving. I’ve been flaring. Our littles are both sick. B and I have been doing our best to stay positive, but we are weary. The stress of the impending required roof, the aching backs & joints from the concrete floors, the constant shelves & belongings crashing to the ground from not having been installed with anchors, the ‘no water’ scare (THANK YOU to my recently self-adopted dad, friend & former owner’s brother George for getting our well running again!)…it’s been a lot. My sweet Momma is here for the week to help get errands done and the farm as cozy as we can make it this week. Friday I go for my Lumbar Puncture (spinal tap), with my punk immune system & difficulty healing…I’ll be on bed rest for a good bit following. Serious silver lining- we will be able to begin a treatment plan with our ahhhhhhhhmazing doc and hopefully get relief from some symptoms now that I am here on the farm to heal and re cooperate.
I had started a post about an average (physical) day in the secret life of this spoonie. I’ll post it soon, I promise. It got a little depressing, but I’ll wrap it up here soon…maybe while I’m on bed rest (I don’t make a very good patient). I want to send big love and thank yous so a bunch of our incredible tribe (& I know I’ll still miss some…I blame the lesions 🙂 )… Mom- what would we do without you?! And the fuzzy robe w/antlers & ears…<3 Mom & Dad- Thank you so much for your help & encouragement from across the country! To our self-adopted sisters & family- you all have the biggest hearts of anyone I know. I want to be like all of you, thank you for welcoming us into your family & loving us even at our worst. ❤ No words- so much love! Auntie K- for being right there with umbrellas, even when it’s raining in your world. Your heart is so big and we are so grateful for your love, support, encouragement & for being there in times we felt forgotten. My sweet B- thank you for doing life with me…and for being willing to do hard things to be the best us we can be. ❤ I love you! Friends who have reached out bc of my silence, momma’s intuition or because you were concerned- thank you. Those words of encouragement and love nourish our hearts and lift our spirits. And a quick shout out to the amazing A/C company who helped my teacher so many years ago. They are not only coming out just to be sure our system here is up to par- but one of the owners has been an incredible encourager to me. Our son asked me a few weeks ago, ‘Mom- what are your favorite things or side effects from your disease?’. So 1- High fiving myself there for a second…we’ve raised this amazing young man to find the best in everything in life and I just love his heart. 2- At the time his question really caught me off guard. I told him I wasn’t sure that there were any and went about whatever I was doing. The question stayed with me. The next day I went to him and apologized for lying. He looked up surprised (Mom doesn’t lie..and even if she tried, she stinks at it). I told him that I had answered his question wrong- that the best part of my disease is people and clarity. It has brought some incredible strangers who have become friends and took incredible friends and made them family. It brought clarity in so many aspects and relationships in life. The value of each day, of health, of people. It also brings into focus who your tribe are. I love his question, I love his heart, and I love that he reminded me to look at the bright side- because there always is one.
Well, it’s closing in on 2am…while I don’t think the burning in my foot is going away anytime soon- I’m hoping the fatigue will outweigh the painsomnia and allow me a few hours of good sleep to get lots done with Mom here (not driving much anymore these days) and before the upcoming bed rest. Sleep sweet & we’ll catch up again soon.
Just when you think life couldn’t get more stressful… one moment can put it allllllll right back into perspective. We lost our son today. Don’t get me wrong, we didn’t set down our newborn in his carrier in the produce aisle at the grocery store and forgetfully wander away…he’s big. Well, relatively speaking (sorry bud, got that height…or lack there of, from mom…). He’s almost 13 (and very much dislikes being referred to as ’12’…that was so last year). Teen years are so much fun. I tease, but if you know him, you know he’s a remarkable young man.
So if you know me, you know I can be…a little protective of our cubs. 🙂 I’m entirely understating here, mind you. So…mom finally loosens the apron strings a hair and lets him walk…I don’t know, 5 feet, away from B, the littlest and I to get his icee and says, ‘we’ll be right there’ (pointing to the corner of the booth beside us in the shade to a teenager obviously oblivious to anything I’m doing nonetheless pointing to). Our (almost) teen son hears ‘we’ll be right there’ and thinks I’m referring to the burger joint just up the street we decided to grab burgers from. A minute later we see friends and say hello…I can only assume as our son walked right past not expecting us 5 feet away, but at the burger joint. A few minutes pass so B went to get him…he circled the food truck and returned alone. I remember thinking to myself to take deep breaths and not allow myself to panic as B made his second pass around the food truck. This time when he returned his expression no longer had the ‘don’t worry, he’s fine’ confidence it did the first time. I was still relatively calm trying to keep our littlest from panicking (don’t get impressed yet…not long after I was that mom freaking out crying my eyeballs out clutching our smallest…also bawling… right there in the middle of the festival beside the kind officer attempting to keep me calm as B & the amazing police team scoured the Main Street festival).
Before I continue…I have to take pause and say thank you, thank you, thank you to my amazing B- that was terrifying, I love you. To the incredible officer with Alachua Police Department (who I later realized was probably not even on duty but didn’t leave our side until our boy was in our arms)– thank you kind stranger for not only facilitating such an incredibly fast response team to our crisis, but for confidently encouraging us the entire heart-wrenching time that we would find him. Last, but so far from least, the kind woman who I wish I had asked her name or remembered her booth name. This woman (who quite obviously has children she loves in her life) without hesitating for permission snapped a photo of our son from the photo on my phone the officers were circulating (seriously- hats off to these professionals, beyond impressive & beyond grateful) and she sent it to anyone she knew at the festival. What felt like a lifetime later she exclaimed ‘MY BOYFRIEND FOUND THEM’…the relief washed over me. Immediately we headed that direction and ended in a full blown ‘sprint’ when he was in sight. Unfortunately I didn’t think to ask her name before we left, but if by some miracle she lands here- thank you from the bottom of our hearts for your courage to step in and help find our son! ❤ Talk about putting things in perspective. Houses didn’t matter. Jobs and income didn’t matter. Having our family safe and sound is all that mattered. Talk about perspective! This momma’s heart might not slow back down for a good minute!
So….before the minor heart attack, I got enough medicine & motivation in me to rally for a fall festival with my amazing B & sweet littles today. I will pay for it (physically), especially with the added stress, but man was it worth it to see my tribe smile! Before we ‘lost’ our son (who by the way was calm as a cucumber the whole time knowing we’d find him), I enjoyed watching them bounce off of each-other playing Knocker-Ball (Dad even joined in the tumbling fun!). We fed goats, enjoyed local music and laughed with one another. Lately it feels like our life has revolved around a mix of what needs to be fixed, painted, sold or cleaned and the groans over cereal, frozen dinners & the brief hot-pocket period (whoa nelly, have they always smelled that bad??? I”ll be soooo happy when I can cook again! Never thought you’d hear me say that huh Ma?!). A day of sunshine and smiles made the silver-linings oh so brilliant and beautiful.
Loving the goats
Sweeping her off her feet
Last but not least…an SOS call to our tribe! As you may or may not know- we’re getting the FARM! We close on Wednesday this coming week. If you ask my sweet B he’ll be the first to recruit volunteers- why? Because this amazing man is the very man who totes an air filter machine from room to room because he knows without it I’ll be struggling in less than an hour and certainly doesn’t want me pulling nasty carpet or trying to clean with chemicals that cause me days of recovery. This man won’t turn down help not for himself but because he doesn’t want me to over-do it any more than I have been these last few months. ❤ LOVE ❤ If you talk to me, I’ll be the first to ask for volunteers so that this amazing man who will try not to let me help will have the help he needs with his side-kick (that’s me) pretty much out of commission until I can breath in there.
Carpet has to GO
In need of love…& copious amounts of bleach
Our sweet sweet Farm
We both sometimes struggle to ask for help, but right now, we’re praying that amazing tribe who have held umbrellas for us through these storms…might be willing yet again to put their rain boots on and join us this week to get our sweet farm ready for move-in day! We have downsized in preparation for no help but are praying for plenty! Wish us luck, I’ll update you next week with photos! My amazing spoonie sister Samantha (you heard from her earlier, if you haven’t already definitely check-out the last post!) is helping plan and decorate from afar fixing up our little farm on a shoestring budget, this is going to be a great adventure, I hope you’ll join us!
Much love from your super excited, incredibly grateful & very sleepy spoonie,
Hey folks! Gracie has invited me to join her with a glimpse into life with chronic illness. When I was diagnosed I didn’t know that a woman I’d only had a handful of conversations with would become my spoonie sister. Gracie seems to understand the symptoms, complications and emotions that come with this in a way that few do so I appreciate the opportunity to share.
One of my favorite characters as a kid was Dorothy Gale. I had to have the braids, the dress, and even made my poor dog play Toto (he was an unusually patient little mutt). Looking back, I’ve realized that everyone faces their own version of the yellow brick road with lions and tigers and bears (…oh my!). I never thought mine would turn into something as simple as getting through Halloween.
Five years ago I was working 60+ hours a week at a job that had brought me so much joy. I loved work. It gave me a sense of purpose and I never imagined NOT being able to be so productive. On October 31, 2012 I was diagnosed with Postural Orthostatic Tachycardia Syndrome. Since I have had dizzy spells for my entire life and been known to faint on occasion, we didn’t think this would be much of a game changer. We learned that I should be able to keep it mostly in check with fluids, medications, and exercise– I wasn’t too thrilled by having to start that part but I figured I could handle it. We even thought we had found the underlying conditions and were getting them under control for a couple months.
Since I was diagnosed on Halloween it has become the day by which I track my progress. By October of 2013 my fainting spells seemed to have become more frequent. In 2014 I was experiencing such overwhelming fatigue, brain fog, and weakness that I had to leave my job. 2015 brought on the symptoms of bone pain and hair loss. And we started fighting this as an autoimmune disease in 2016, which came with insurance denying immunoglobulin treatment and all of the appeals.
So here we are, Halloween 2017 and I feel crippled by a Halloween parade and a batch of cookies. Once again I spend my weekend glued to the floor because I feel like I’m going to fall off of the couch. I’m still unable to go back to work, which leaves my parents stuck with all of my medical bills *I don’t have enough space in this post to get started on how amazing and supportive they are*. All I’m left with are tears more often than I care to admit.
Don’t get me wrong. These guys are absolutely worth being down for a week. Just look at how cute our little Shine and Jack Sparrow are.
So for now it’s parades, and cookies, and tears… oh my! But we’re still trying. Between the most recent discovery of Autoimmune Autonomic Ganglionopothy and the advancements in subcutaneous immunoglobulin, Dr. Goodman thinks we have enough to push for treatment again. Here we go on appeal number one… again. Wish me luck!
With everything in life going haywire, we decided to hold the Mayo…
We did a lot of praying. A lot of research. A lot of talking… And decided to hold off on our trip to Mayo Clinic. The expense was just too much right now and with no idea what’s happening with our housing situation (11th hour much?!)… it was too much to pile on. So we reached back to our ahhhhhhh-mazing doctor (whose birthday just happened to be that same day- HAPPY BIRTHDAY DOC!!!!) and we will be moving forward with a lumbar puncture (aka spinal tap- ouch) and treatment plan under his incredible care. We both feel great about it and are excited to move forward.
That guy in the picture above ⇑… he is my real-life superman, my knight in shining armor. As I type we are literally in the final hours trying to find out if we got our little fixer upper farm. This man has been working day and night to get a loan for our house, help repair our house to sell, try to keep stress-hives at bay…and still manages to squeeze in being the most incredible husband and father. Tonight he is feeling the stress. He came home and just fell apart. This man is incredible, the strongest man I know. We will know within hours, maybe less, if we have the house… prayyyyyiiiiiinnnnnnggggg!!!!
As always, we have tribe to brag on and be grateful for. From friends who showed up with bags of clothes for our growing littles, who had them over for pumpkin carving & fun, to our adopted aunt bringing dinner again to fill bellies and warm hearts. From friends & family to tribe we don’t even know…the angels that have prayed for us, friends who have cooked for us and who have been there every step of this challenging journey… it really does make the road less lonely.
Well friends, I feel like I am all over the place. We wanted to send an update about holding the Mayo (trip). I wanted to brag on the guy holding the Mayo (whipped). And now I’d like to announce that…at literally like the 11th hour…we have signed and sent the final closing disclosure (*insert ridiculous joy & exhausted celebration here*). After weeks of no sleep, hives and a plethora of new symptoms. After having to pay off credit cards and then having to close all of our credit lines… we will be closing on our sweet little fixer upper farm on Wednesday, Nov 8th! We don’t have much to move, but lots of carpet to pull, floors to lay and paint to roll and would love help! Let us know if you’d like to join us!
THANK YOU to the incredible team who all pulled together to get this done in time for us to get our home. It is a much-needed win for our family! This team will remain in our prayers, we are grateful for you!
We have plenty of hurdles ahead, but for tonight- victory!
MS/World- 0 , Gracie/Sweet B & Friends FOR THE WIN!
Sleep tight friends. Thank you all for the prayers and encouragement, they mean the world. You may be in for a treat soon and hear from my amazing spoonie sister across the country (& dare I say maybe even a peek into the secret life of a spoonie spouse from my sweet B soon….)! Thank you for taking the time to take a peek into our secret world of spoonies! I’ll be updating you soon with the many details this sweet man of mine thinks you’d want in on (dental emergencies & spinals & symptoms…oh my… 🙂 )
Time to celebrate with this hunky hubs of mine after weeks of stress! Goodnight friends!
If you read my last post…I’m sad to tell you that our positive thinking didn’t quite get us there… yet. We are praying that we somehow get to miraculously close on our sweet little fixer upper farm tomorrow. If it’s possible, I know it will happen. We have had some really wonderful folks working hard to get us there (if you could maybe add our angel M to your prayer list, she’s been an incredible blessing!). 🙂 We have been fortunate enough to sell almost everything we were trying to sell. A few last pick-ups and this will be our lightest move…maybe ever!
This has been quite a week. A sweet friend brought dinner Monday night. There is nothing better after a long day of work, school, and packing than having friends show up with hugs, comfort food and encouragement. It filled everyone’s bellies and lifted all our spirits. I attempted to cook again over the weekend…still not so bueno. By the time it was done I left it to sweet B to dish up while I lay in bed sick to my stomach. Hopefully once things settle after the move I can get back to cooking.
With me not working finances have definitely taken a hit. Some of the things we’ve been working on selling we’ve priced based on some of our more immediate needs. One of my favorite scriptures is in Matthew, when Jesus feeds the masses with just five loaves of bread and two fish. I like it so much I named my first blog after it. What I love about it is that in our flesh we see not nearly enough to get by. He sees more than enough (they filled baskets with the left overs). If only I would remember that when all I can see are a few crumbs and a fish stick.
As my sweet B and I fretted about unexpected expenses and expensive medicine…God had the bread and fish standing by. Not only has He brought some of the kindest friends to our door with dinners for our family…but He heard our challenges and every need. All in His perfect timing, every need met. Every challenge conquered. This week we opened a card from friends we’ve never met with a financial gift that didn’t only meet a timely need, but reminded us about His promises. We sold a piece of furniture to a friend of a dear friend for more than we were asking…and exactly what we needed to cover medicine. At every turn our needs are met. At every challenge there is a friend, an encourager, a call, a text, a dinner…5 loaves of bread…2 fish.
So for tonight…we aren’t going to worry about whether we can close tomorrow (I never said I wouldn’t think about it…or pray for it…). We aren’t going to worry about how everything is going to fall into place…we’re just going to have faith that it will. Thanks for walking with us. Time to try to get a little sleep and see what tomorrow brings us!