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The Story of Us

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Long story short for those of you who may not want to read the book :-) . High school sweethearts marry. Dad goes to work. Mom goes to college then decides to be a stay at home mom. They have three kids and two of them have special needs. The kids need bibs and some altered clothes, so mom gets a sewing machine and teaches herself to sew. She eventually decides to sell a few on Ebay and many years later here we are!

Our oldest is now married with her own family. And our two younger children, Jake and Katie are now 21 and 11. I sew while they are in school during the day. Jake still has two more years of school but he's really no trouble. I'm not able to sew when Katie's home (ie, after 3pm, on weekends, or school holidays & breaks). She's a.... demanding playmate :-) .

Everything is sewn by me, with my husband helping where he is able, in our home located in northeastern NC. We are pet free and smoke free. We accept Paypal, credit cards, checks, money orders, and purchase orders. We ship USPS Priority Mail.

We're happy to help you with any questions you might have! Just send us an email through the "Contact Us" form. You can call us if you prefer. Just to give you a heads up though, I don't hear well on the phone, so phone calls are taken by my husband Mike, who then has to relay the questions to me. Kinda like a game of, well... Telephone! It's not the most professional situation I suppose, but- it is what it is, as they say. And really, he's a talker. He enjoys it, and he's quite friendly. Just be prepared, he's... "a little bit country".

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Now for those of you who would like to settle in for the not quite War and Peace length novel, let's see if we can fill in the gaps I left with a wee bit of rom-com.

Mike & Micky

Once upon a time, a long time ago...

A girl met a boy....

And instantly fell....

Over a chair in an effort to get the heck as far away from him as she could.

Ahhhh. Perhaps not how most people expect their fairy tales to begin, but alas, this IS real life. And while we've had our ups and downs and will continue to do so, I promise, this story is still slated to end with it's happily ever after.

Mike and I met in high school art class. It wasn't exactly love at first sight, as I properly detested him. While I suppose he had certainly gone through puberty, maturity yet eluded him, and me being much too serious, much too introverted, & much too depressed (I mean, look at that BLACK shirt for goodness sakes! Yep, I was one of THOSE chicks) found him much too loud, too active, too frivolous, and much too... happy.  He was, in retrospect, exactly what I needed, even if I didn't know it at the time.

So I ran. And he followed. I table hopped. This was art class after all, a bit free form. And every freaking where I turned, there he was, sitting next to me. Doing something stupid. Making people laugh. Making me roll my eyes... and smile. Until one magical PG-13 moment sitting in the middle of class, I'd had enough of the cat and mouse BS and I turned the tables & pretty much dared him to kiss me... and he did... and in a class of 20 other kids and a teacher, NO ONE saw us. And it wasn't just a peck either you guys. Seriously, it was like one minute I was all goth girl... I will cut you... and the next I was in a friggin' Disney musical. And that's the beginning of our love story.

Wedding

We had Megan my senior year and graduated ( <sigh> Less Disney... more  90210). And had no clue what-so-ever what I wanted to be when I grew up. I went to college to be a teacher, and ended up changing my mind mid way to study biology. I still didn't know what I wanted. Heck, I STILL don't! If I could be ANYTHING right now (unencumbered by real life) I don't know, archaeology maybe..... until I got out in the dirt, and heat, and bugs.... and snakes. <sigh> So anyway, I had 3 years of elementary education with 1 of those doubling in biology premed. All 3 years volunteering in an elementary school for my scholarship (often working with special education students). In the mean time, Mike had began working in a grocery store and when he graduated, moved to the meat department and began his 20+ year career as a butcher.

We had been living together since we were 18 but I eventually dragged his butt down the aisle. We were beautiful if I do say so my self! So young... and... THIN! I've never been skinny, but good grief, I wish I was as fat now, as I thought I was back then!

A little over a year later we had Jake. My pregnancy and his birth were both normal, he was kind of big. 9 pounds 3 oz. I think his head circumference was 95%. As the months passed we realized he wasn't reaching any of his milestones.

Road Not Taken

And here's where our fairy tale changes course, diverges from the roads most taken, and crosses and converges with yours.

Every time we took Jake to the doctor I would ask him about not reaching his milestones. He could not sit up, He could not crawl or even get up on his all fours. He did not talk, made no talking sounds at all, just cried. He couldn't feed himself at all. He couldn't sit up in a highchair. The doctor would tell me the same 2 phrases. "All babies develop at different rates." and "Boys are slower to reach their milestones than girls." Which is all well and good until you're dealing with a nearly one year old who can do absolutely nothing but smile, eat baby food, drink a bottle and projectile vomit to the point I had to keep a sheet in the floor ("all babies spit up" doncha know?) We live in a very small town and had little choice in doctors.

At 1 yr a new nurse practitioner came to town and we switched to her. She immediately told me Jake was (obviously) developmentally delayed and his head was small (you would have thought the other doctor would have thought the microcehpaly important wouldn't you, especially as how looking at his chart, it had been steadily dropping down the chart since he was 4 months old!). She set us up with appointments for a CT scan, neurology, and the developmental center.

Jake had started having weird "jerks" of his body. It looked like a hiccup. Our ENT happened to see Jake do it and he said it looked like it might be some type of seizure. Well crap. So we finally see the local "clinic" neurologist and I tell him about these jerks, of course Jake does not oblige and have any! I even mimicked one for him to see. He acted as if he doesn't have a clue what I could possibly be talking about?!?! Umm. OK? We left with a diagnosis of "Well he might have some cp when he gets older. He could possibly walk with a limp." And a script for therapies. I felt.... I don't know really how to put it in words. Not babyfied...... I don't know. I feel as if I was treated I was too ignorant to bother to EXPLAIN anything. What about the HOW and WHY? What about some kind of testing, surely there must be a blood test for SOMETHING. He never explained what cerebral palsy even was. And what about these jerks?

So we left with a diagnosis of cerebral palsy... maybe. We weren't devastated, per se. I mean, we KNEW something wasn't right, but still, to hear CEREBRAL PALSY totally sucked and we mourned. The next day I called our nurse practitioner, and told her I was not at all satisfied with how the appointment went and wanted a second opinion at a children's hospital not associated with our local one. We accepted the local therapies and early intervention, but for the actual medical part, I wanted "big city" doctors who see all kinds of medical issues daily and work in the children's hospital in a major city, not a small town clinic who may or may not have ever even seen what my child has (apparently this doctor had never seen a myoclonic seizure, I don't know?).

We got our appointment with a neurologist at Children's Hospital. I think we were in his office less than 5 minutes before Jake did his jerk and the doctor said it was a myoclonic seizure. Mike's dad had driven us up for a for a 30 minute appointment and it was 3 days before we went home. Looking at Jake, the neuro thought it best to put him inpatient and get testing started on him immediately. So in the span of just a couple months (and a different doctor) Jake went from "might walk with a limp" to needs to be hospitalized for testing immediately. To be fair, all the tests that needed to be done immediately all came back fine... but what if they hadn't?

Anyway. I do remember from that first appointment the neuro looking over him and then getting his partner in to consult. I don't remember all that they were thinking but 2 of the things I do recall were Angelman's and Menke's. He has neither thankfully. In fact, we've been through tons of genetic testing and nothing has ever been positive except for one mutation on MECP2 which was deemed as nothing, and Katie also has this same mutation. It was found only after Katie was born and they decided to test her for RETT, yet I believe it was termed a nonsense or missense?? mutation and of not having any affect on the kids. Which I have a difficult time believing, but who am I to say? It was not a mutation ever seen in association with RETT.

His epilepsy has changed over the years. His myoclonics are labeled intractable. He's been on several medications, but we've never had control. Never even close. At their worst. I would say they were well over 500 single jerks a day. It would be impossible to count them all, so it was a guesstament. At different times in his life he has also had febrile seizures, tonic-clonic seizures, complex partial seizures, and gelastic seizures. Currently, he only has the myoclonics and still has over 100 a day. He's down to only 1 medication for seizures, though he has in the past been on several others.

Jake never did walk with that limp. We tried and tried, but he never was able to walk at all. He just couldn't learn the reciprocal stepping motion. He has very limited leg movements. He W sits and then lunges forward with his hands and drags his W sitting legs up under him again. When he was little they called it bunny hopping, but he's so stiff now, it's not much of a hop. He's nonverbal and can not use a communication device with any real functionality. But lets us know when he's unhappy or is hungry, thirsty, or wants tv. He loves wrestling and football and Barney the dinosaur.

Grandma

So this is when the sewing happened. And I have my grandma to thank. I was at Grandma's house and mentioned to her that I wanted to learn how to sew. Well, Grandma, awesome lady that she was, told me that I could have her sewing machine. She wasn't able to use it any longer. So I pulled it out of her closet and took it home. It was really serendipitous. If I hadn't mentioned it and she hadn't given it to me, I don't know if I'd be sewing today, because I never would have bought one. I wouldn't have been able to afford it or really had the follow through to go out and buy one. I still have that machine in my closet. In fact I have it packed in a box and I occasionally take it out just to smell it. It still carries the smell of her house. (if you've ever had a chain smoker in your family you probably know just how hard that FONK clings!! LOL) But still, it smells like my grandma, and I miss her so bad it physically hurts sometimes.

So thanks to some books, and some youtube, I taught myself to sew. I sewed bibs and simple things at first. And eventually moved on to full garment construction (dresses, shirts, jeans). I ended up selling a bit on Ebay and that's how I started Something Sew Special. From there, I bought webspace and used a free shopping cart. Which worked, except I kept messing it up and deleting everyone's account. Now, we are on a paid for service where I am not responsible for the "house keeping" so to speak (ie- I don't have to install updates, etc) so hopefully everyone's safe from my non-know-how!

Jake started preschool at 3 and he REALLY did not like it. He had an awesome teacher though and I ended up going to school with him most days. I volunteered in his class and worked with all of the other kids with various special needs, and was available to Jake when he would have meltdowns or become inconsolable. Eventually he was able to stay most days without me and I was able to come home and had more time to sew! Then came kindergarten, new teachers, different everything. Pretty much disastrous. We struggled through that first year with me being called to come get him all the time. First grade started exactly as kindergarten had ended and I had had enough. I decided to homeschool him. It was the best decision. I didn't have time to sew anymore, but Jake was happy and he was learning. He matured a LOT and after 3 years I thought it was time we tried public school again. He was given an assistant that made all the difference! Now he absolutely loves school. He's officially graduated but can stay in the education system until he's 22.

Anyway-time marched on and Mike changed jobs. He continued cutting meat, just with a different company. Alas someone in the family must be the drama queen. Things must have gotten too quiet, or perhaps he REALLY just didn't want to take me shopping when he got off work one day, but for some reason he up and decided to cut 2 and a half of his fingers off in the meat saw. SIGH. I didn't get to go to Walmart. And we spent the week in the hospital. They couldn't save the fingers.

Honey, you don't know the depth of your love until you gotta reach down deep inside to keep from wringing his neck... when your man wakes you up at 2 o'clock in the morning to hold his pee bottle because "Baby, I can't pee laying down" and then proceeds to knock said bottle out of your hands, and soaks your legs with warm, fresh from the source, "hospital smelling" pee. I STILL dare him to laugh about that. I double dog dare you Mike Ashley! :-/

The accident and recovery was a huge 2 year out of work, financially disaturous ordeal, but it ended with Mike at a new job that he loved with an old friend as his "boss". It was a godsend. He was able to basically set his own schedule and take off for any and all doctors appointments. And we got on with life.

We had wanted a big family but genetics could not tell us for sure that Jake's condition was NOT genetic, so we didn't have any more children..... until we did. It took 10 years for us to decide that we were up to the challenge. We had started thinking about adoption but we just decided, ya know what? We can deal. The baby might be fine, or maybe it wouldn't. But we will deal with it. Together.

So we had Katie. Again, normal pregnancy and birth, but this time I was on full alert, with a full complement of specialists on standby. She was fairly big too.8 pounds 3 oz. I'm not sure what her head was, but it was up there, I'm too lazy to go look for her records, but 75% rings a bell. So, I was being totally mental and measuring her head circumference like every other day. Which would have been humorous, had it not started dropping down the chart, just like Jake's, at exactly the same time frame, 4 months. It was absolutely a heart breaking moment, because we knew. We just knew. I mean at 4 months, there were really no milestones to have missed, but even so, there was no doubt in our mind, so we went ahead and let all of those doctor's know. And thankfully we have surrounded ourselves with doctors who listen and who BELIEVE IN US. And truthfully, our nurse practitioner and neurologist have become like family, so they were already keeping an eye on Katie too. The neuro had already given her a good once over at Jake's appointment.

We got her started in therapies and early intervention and all the neuro and genetic testing. And of course none of her testing showed anything either. And then of course the seizures had to start. She started big though. Tonic-clonics for her. Full blown, stopped breathing, 5-10 minutes. Jake's were never like that. We had to keep Diastat on hand for her. And she ended up in the ER a few times. Those have been under control for a few years. Now she only has atypical absence and a few random myoclonic jerks. She's only on one seizure med.

When she was 1 (I think), she had methylmalonic acidemia. I think that was diagnosed with a skin biopsy. That was treated with B12 injections every day in her thigh. And it completely wrecked me having to do that. Apparently the injections helped. Whatever levels that were wrong, righted themselves and within the year she came off the shots.

Katie's had a broken arm and spinal fractures. We took her to the endocrinologist and she has osteomalcia. She has to take calcium and vitamin d supplements and every so often, if a DEXA bone scan shows her bones have thinned again, she'll have to go into the hospital for 3 days for an IV medicine drip to strengthen her bones. Jake does not have this problem. He does have thin bones, but his is "normal" for kids with cp who don't bear weight. Katie's is different, her's is a vit d deficiency I believe.

Last year her heart had been a concern. Her heartbeat stays kind of high, usually a resting heart rate around 100. And for no reason when we're just sitting watching tv, it spikes to 150. Back and forth 100-150. Never really getting below 90 for any reason, even when she was asleep in my lap. So I took her to the cardiologist who wasn't concerned. Don't you hate that? Come on!! 150 while sitting watching tv?!?! Not that I want her on meds or anything. Goodness I don't. I've been on arrhythmia meds. Didn't work for me.<sigh> Her echo and and ekg and/or whatever else they did, all were fine and he said the 100-150 bpm he was comfortable with for her age and no physical problems with the heart. 

Jake HandWe had an appt with the gp and she decided to send Jake to the cardiologist too. She was kinda just staring at his hands, which EVERY doctor has done since he outgrew toddlerdom, and said has he ever had his heart checked? I'm going to send him to cardiology. I knew she was thinking Marfan's though no doctor has ever brought up the issue. The kid has a wingspan of a small aircraft. Crazy long finger & toe bones. And thumb joints that can wrap around his wrist a half dozen times (yes I'm being facetious). Here's his hand's next to mine. I have fairly average size hands for a woman. He doesn't have the classic "look"v though he does have a few of the characteristics, but they're all extremely minor (slightly caved chest, stretch marks on back, flat feet, high palate, positive hand/thumb test). His echo and everything was normal but we are now waiting on an appt with genetics for actual testing for Marfan's.

Katie also has cerebral palsy, though she is not as affected as Jake. Jake has spastic diplegia. His legs are tight. He has fair control of his upper body and arms, but his hands and fine motor are bad (ie- he can not hold a pen etc) Katie is more hypotonic and perhaps ataxic. She can walk with a walker and she does ok without the walker for short distances but she's very likely to fall and will most certainly sit down where ever she wants. The slightest tap will knock her off balance and she'll fall over. She's also nonverbal, though she has many signs and can use communication devices. She loves all things Disney Nick Jr, and right now she's digging SpongeBob.

2014 we began a new chapter in our story. The place where Mike had worked for 10 years closed. At the same time, Jake had turned 18 and a parent was now allowed to be his paid caregiver. The pay is a lot less but not having the 30 minute drive time each way and saving the gas money is nice.

While the kids are in school, that's when we are doing Something Sew Special stuff. We wake up and, in theory, tag team the kids, though I must admit in actuality, for the most part, I'm just standing there waiting for the coffee to brew while he's dressing them! It started off as a partnership. He dressed Jake. I dressed Katie. Then one day he made a most grave mistake. He finished Jake too early and started on Katie.... and his morning has never been the same since!

So now it goes like this. We get up. He gets Jake ready. I start the coffee and fix Jake's lunch and pick up in the kitchen (because REALLY why would I do that at night??). He puts Jake in his chair and then I do Jake's meds and wash his face, teeth, and quick shave if he needs it. He gets Katie dressed. I do Katie's meds, hair, face, teeth. Then we sit and wait for the buses with facebook and coffee. The buses come. Hallelujah! I continue on with a couple more cups of coffee, because.... COOOFFFEEEE. And then we start sewing. Or rather, I start sewing and Mike starts what-ever-I-tell-him-to-doing. Trust me. You don't want him sewing. I would like for him to keep his last 2.58 fingers... just sayin'.

Disney World

I can't say for certain what will happen in the future. My plans are to keep sewing. To be completely honest, we don't make a whole lot of money doing this. What little profit we make is mostly put back into buying fabric. I'm a complete fabric addict! But mostly we sew just enough so that we are able to afford to take the kids to Disney World each year. That is our financial goal each year. We went on Make a Wish when Katie was 5 and they both loved it so much that we have made getting them back to Disney our priority. They are so happy there.

We really enjoy working together. Well, mostly. It's not always super easy, for exactly opposite reasons. He's a people person. He sometimes misses the company of "people" I think. Though in recent years his extrovertness has been in steady decline. So it's not as bad as it could be I guess. And for me. I've had the house to myself for a really long time. And that's how I like it. I'm a total introvert. I like my quiet and my alone time. I like the peace of solitude. And I don't get that anymore. Ever. So it's been a complete lifestyle change for both of us. And there has been a few kinks and bumps, but I blamed the meds (and I think he actually believed me! HA!) On a serious note though, I did the SSRI merry-go-round last year, at the same time we were adjusting to our new situation. It was extremely..... well, I wouldn't advise it. You're ok, until you're not. And one of those meds was a definite NOT for me. It was like playing DUCK, DUCK, GOOSE. Except it was more like DUD, DUD, SATAN (Celexa). Do I need an SSRI? Yes, I think I do. But my body just will not agree to it.

Doctor Who

As we've gotten older, I've realized something. Everything's gonna be alright. Bad stuff happens. REALLY bad stuff happens. The kids have their medical issues. We've lost loved ones. I've been diagnosed with a disease that will probably shorten my life (for now I only have minor, painful but non life threatening issues. It's scleroderma for anyone who's curious. Mike's aunt died from it a few years ago. So we are aware how things can go.) Sometimes things are just bad. We deal. Sometimes we deal with it in better ways than others, but for the most part, we lean on each other, and we know when one of us needs the other to be the strong one. Or to tell the other they need to take a time out. But mostly good stuff happens. A smile. A hug. A slept through the night, night. Hearing Jake's laugh. A Katie meltdown free day. A slept through the night, night. (yes, I do know that's in there twice thank you very much) "Someone" folding the laundry without being asked. Happy day!!!! You have to look for a reason to celebrate. Every day.

In the end I know we are where we're meant to be, with the people we're meant to be with. Doing what we're meant to be doing. Loving each other, and loving our kids. I hope we're a LONG LONG way away from "the end" but when it's over and they write the final pages of our story, I know we'll have that happily ever after, because in the end it's the good things that's important. And we've grabbed hold of those good things and held on tight.. And we'll keep holding on until...... THE END.


Jake

Jake- microcephaly, myoclonic seizures (past- febrile, gelastic, tonic-clonic), cerebral palsy (spastic diplegia), heat intolerance, nonverbal, intellectual disabilities, reduced need for sleep, was labeled "autistic tendencies" when he was younger (not as much now), cannot walk/ uses wheelchair, needs glasses but won't wear them

Katie

Katie- microcephaly, atypical absence & myoclonic seizures (past- febrile & tonic-clonic), cerebral palsy (hypotonic & ataxic), intellectual disabilities, nonverbal, osteomalacia (pamidronate? infusions every so often to correct), arrhythmia, migraines, abdominal migraines, heat intolerance, uses reverse walker/ can walk independently a few feet (not exactly safely), wears AFO's, wears glasses, has some CVI

Micky- scleroderma, migraines & chronic daily headaches, arthritis, degenerative disk disease (early onset), arrhythmia, anxiety, restless leg syndrome, periodic limb movement disorder

Mike- unhealthy addiction to comic books... I'm just saying.... he's unfairly healthy, curse him.

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