Life Got in the Way—again! Part 2.

2015 became another year of planning, planning, and more planning. Forget about all of the 4-hr drives to my mom with Owen, I ended up needing 3 more knee surgeries on my “problem child” right knee. Oct. was the simple scope, Dec. was the horrid 6-inch incision that required full crutches for 6 weeks and not even a toe touch. Yesterday (Mar.2, 2016) was operation #3  to remove massive tons of scar tissue impeding the rehab/bending necessary to finish the rehab form the big Dec. surgery—thankfully we planned ahead for the Dec surgery and long downtime for me afterwards, but this scar tissue setback has us frustrated, requiring even more hard work , time, and energy on my husband’s part–and he’s one of the great ones! 🙂

Granted things can always be worse, but my health isn’t all we have to think about—my child HAS TO EAT!!!! I know everyone has something  challenging in life, but my family just can’t catch a break. We won’t even talk about my husband’s elbow surgery in June of 2015. He and Owen lost most of their fun togetherness over the summer, but luckily my knee didn’t fall apart until the week before school started. God truly works in odd ways sometimes!! 🙂

I guess my over-riding point here is that you can’t plan too much with food allergy kiddos, especially corn (and soy!!). I also need to work harder at keeping up with this blog. I never know when it may help just ONE person!!!

 

 

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It’s Been A While–Life Happened!

 

Life has been crazy and hectic in our household these last 2 years. I lost track of this blog shortly after the summer of 2014 when my dad became terminally ill. I can definitely say corn allergy has taught me to be prepared, more than anything. One never knows what life will throw your way, and preparedness has saved me from many a disaster.

My husband can attest to this. From June-August 2014, I was gone from my family  for approximately 15 days, split between 3 separate trips to see my parents. That doesn’t sound like much, but when one must leave lists of medications (and when to administer them), lists of foods one can/can’t eat (even after 8 years, my husband tends to rely too much on MY memory), lists of where to buy food in case my 100-year supply MIGHT run low, plus instructions on how to make a lunch in case of a play date (I kid you not!!)….you can see how these things can just get complicated.

Don’t get me wrong. 🙂 We took 3 of our summer weekends to go visit my parents as a family. All of us wanted Owen to have as many memories of his grandfather as possible. He’s a deep kid….there was really no keeping him away. He’s been enamored with death since the age of 3, so we felt it healthy and informative to keep his anxieties at bay. We already had enough of those anxieties without adding in the unknowns of Grandpa’s impending death.

So back to those solo trips. I left Owen at home each time, as it was summer after all. Who wants to spend your summer vacation helping Mom sort through thousands of papers (I’m not exaggerating!!) and make a million phone calls all in the name of helping someone die…and believe me, there was A  LOT to do. Between the phone calls, nursing homes, bank visits, paper-sorting marathons (and hours of necessary shredding), I was TIRED! Did I mention all of the driving…..it’s a 4 hour trip just to GET there, let alone get home…the final tally came to my making 6 trips in 10 weeks, sometimes staying 4-5 days at a time. All in all, we agreed the kid just didn’t need the extra stress in his life.

Not that it mattered anyway. 😦 My child is a stress barometer. He can detect it from miles away. Anyone’s stress. Mine, his dad’s, the cat’s, a bee. You name it, and he’s attuned to it! He was in some room in our house (lurking usually) many times when I was crying on the phone with my mom and brother.  He even read my cursive writing when I thought he could only read print at the time (the sneaky devil!). He just wanted information so he could understand the situation. I couldn’t blame him. I thrive on information too. He was waiting for a new school year to begin (meaning another new teacher!!), and to compound the stress,  he was preparing to test for his First Degree Black Belt in October of the same year. Shawn and him were in that part together. They loved the callenge/camaraderie/fun, but it was still loads of practice, conditioning, training sessions 45 minutes away, etc. They don’t just hand Black Belts out to anyone, you know?! This was a long, 2-year effort coming to a conclusion, and all of us were worried Grandpa was going to die the week of Black Belt Testing. Well, that’s not quite true. I was worried!  Did I mention I’m a worrier too–No?? Well, I am, and there were plenty of people reminding me the death of a loved one does NOT trump the earning of a Black Belt…but I still didn’t want Owen’s big day to be a Downer. Or his birthday in late September…..I’ll just confess here and now that now knowing the day of someone’s IMPENDING death is just plain stressful. Life must go on, whether we want it to or not. All we can control is how we handle it.

So where was I? Planning, Corn Allergy, and Death. It’s easy to see how I got off track.  I  apologize. There WAS a point in this. 🙂 The point is Life Happens—-It happens not always how or when we expect it, or when it’s convenient and simple. But it does happen…and believe it not, God took care of things nicely. I’m still embarrassed by my lack of faith in the timing of it all. We made it to the 3rd day of school before Dad passed. My freezer was well-stocked.  I had just cooked Owen’s 4-month supply of spaghetti sauce that morning when the phone rang (thus Shawn got roped into 2 hours of stove duty while I cried and packed). I then hit the road for the 4 hour trip to Mom’s, arriving in time to cry some more and see lots of family members who showed up for support.

What was NOT surprising is how the guys survived at home for 2 days before driving down for the funeral. Some maor credit is given to my husband here. Shawn only had to text a couple of  times to insure he packed all necessary meds and food (just in case!), and that’s simply because he loves Owen too much to assume anything. Once they arrived at mom’s, we had 2 days together which helped my sanity immensely, then they left for home (and normalcy) while I stayed at mom’s 2 more days to make a million more phone calls. Dying is VERY complicated, let me tell you!! I wanted to find my mom some normalcy, and I quickly realized things were never going to be “normal” again. That’s not a bad thing, but when dealing with parents who were literally inseparable for 54 years, “bad” is the only word to describe it. 😦

I finally made it home 2 days later. I felt like I had aged 15 years in the 10 short weeks from the time of my dad’s terminal diagnosis until he actually died. As for MY home, the house hadn’t burnt down, the child was safe and well, the cats were happy, and my husband took 20 minutes to tell me just how much I was loved and appreciated. He wasn’t telling me this to comfort me after my dad’s death. He was telling me out of gratitude and thoughtfulness because of ALL the planning that goes into any possible emergency.  He definitely and hilariously made it clear he didn’t want me to leave for 5 full days EVER again…but if I had to, we all knew we would survive….and I made sure to tell him he did a damn good job of it. I was very, very  proud of my guys! That almost-8 yr-old boy finally DID turn 8 a month later, and after a few weeks had passed,  we could tell he had grown emotionally by leaps and bounds through the whole ordeal. He learned the biggest lesson of all: The world doesn’t end when Mom leaves town for longer than 12 hours!! 

As for this small OCD issue I possess which my husband likes to call preparing for the apocalypse,  I’m not changing! At All! One person’s apocalypse is simply another person’s flat tire, broken water pipe—or in our case, a family loss one can’t truly prepare for. I promise you–even if you know it’s coming, preparing for the death of a loved one is never simple. I CAN plan for dinner though. At least no one will go hungry! 🙂

 

 

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Another “First”: The Dreaded Sleepover…

Saturday night marked another “first” in Owen’s young life. He was invited to sleep over at his best friend’s house. They have had numerous play-dates together this past year, and we know the family well. The best friend is just like Owen: polite, well-mannered, hates to get in trouble, etc. They get along perfectly, and the best friend’s mom is even a nurse!!!! What more could I ask for, right? She knows good and well how and when to use an Epi-Pen or an inhaler–Woo Hoo!!!

The only problem was ME!! Mom!! I was lying on the couch Saturday afternoon, about to get Owen’s cooler of safe food packed. I was trying to chill out, but in actuality, my heart was going a mile a minute. Yeah–that’s called anxiety! I gave up chilling out and set about getting the food and clothing together, knowing once we dropped Owen off, I would relax a little.

As I packed the food and clothing in a daze, my husband asked me what I was so worried about? He gave me the pep talk, reminding me we have to let Owen tackle things like this eventually. I completely agreed, but I still told him not to be surprised if I asked for a candy bar after the drop-off (wink). In all seriousness, I explained how it wasn’t the food that concerned me; it was the possibility of Owen waking up at 1 AM unable to breathe. Would his airway reacting to something scented in the friends’ home? What if they used those awful scented plug-ins…What about the fabric softened on every item of clothing, every sheet, blanket, etc…What about the dander left behind from the dog that just found a new home last week…What about the mom or dad’s cologne/perfume. I could have gone on for hours if I’d let myself.

Instead, I had to turn off the “what ifs” in my mind, and focus on Owen’s momentous “first.” I didn’t want it to become just another hurdle to survive. I wanted to savor this chance for Owen to gain independence and know he could be just like other kids, albeit with a little (or a lot) of help from his parents. I won’t deny the added benefit of me and the husband enjoying a date night (ha)!! So I shook off the fear, prayed for God to PUL-EEZE not let Owen wake up barking all “croup-like”, then we got the show on the road. What do you know??!! Everyone had a great night. I’m actually still in shock at just how easy the whole experience was.

I’m not saying I won’t panic again when the next sleepover invitation comes along, but at least I’ll know this particular “first” is behind us. Note to self: Much of Owen’s life CAN be normal if we simply try and make it normal. Instead of focusing on the negative and CAN’T DOs, we choose to focus on how Owen CAN DO the same things other kids, even if it means a few tweaks along the way. After all, he’s more than worth it!!

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For once, corn had nothing to do with it……

Today was a big milestone for our family. Owen came up to me at church, asking if he could have a play-date at a friend’s house. I know the mom & child well, as Owen went to Preschool with the boy for 2 years. Plus, they see each other at church frequently & have always gotten along. I had no issues with the play-date until the mom said they would be going over to the Grandmother’s house to swim later in the day. Momentary panic set in, as we have never let Owen swim unless my husband or I were present…and yes, it’s because we didn’t trust anyone else to keep him safe in the water, as he was NOT a good swimmer.

Before I go any further, I need to backtrack a bit & describe our 4-year adventure in teaching Owen to swim. It hasn’t been for the faint of heart. After 4 failed attempts at completing Level II, I decided Owen would probably benefit more from private lessons. Thus, since January he has had a weekly, 30-minute swimming lesson at the local college. We’ve learned Owen’s struggle to pass Level II comes from a profound fear of deep water, common in anxious kids. However, with time & a stern demeanor, Miss H has turned my little guy into quite the swimmer. Owen can swim the length of an Olympic pool using the freestyle stroke, backstroke, & modified backstroke. He can even tread water for a minute, plus he has jumped off the diving board into 13 feet of water—-FIVE TIMES!!!! 🙂 In summary, Owen can swim—especially in a pool that’s only 5.5 feet deep…if he just gets out of his own head 🙂

OK–So why was I such a nutcase today? Why did I clean like a madwoman all afternoon to take my mind off the fact that Owen could drown because I wasn’t there to keep an eye on him? Why did I tell God “I know I have to give him to you today, because I can’t be there?”

Well, I said this story had nothing to do with corn, but in a way, maybe it does. See, with corn, I think I can control everything in Owen’s environment—though we all know that’s not the case. It’s a delusion I’m comfortable with to maintain my sanity. See, I’m a self-confessed control freak. I have spent 6 years trying to control everything “corn.” Then add in Owen’s other medical issues, some of which were life-threatening. It’s no wonder I have a hard time letting go. I think any mom would when it comes to swimming at a friend’s house after their child has recently become a proficient swimmer. Who needs to add a food allergy into that dangerous mix, when there’s plenty of apprehension to be had just from the thought of drowning?!

The problem is Owen still has mystery reactions on occasion, proving I cannot and do not control everything in his environment. It’s a reminder of how I must continually trust his teachers, relatives, play-date moms, God, (and everyone else in our lives), to keep him safe when I’m not around—even if that involves swimming instead of corny food!!! This has easily been my biggest struggle since Owen came into my life.

However, today I accomplished a goal….I climbed the tallest tower…I tackled a horrifying fear…..I let go of the reins (well, kind of!!!)….And what did I get for it? No trophies or ribbons. No awards or accolades. Just a very happy child full of hugs for me & dad when he saw us again tonight.

Owen and his friend met us at church as planned, ready for ice cream & even more play-time. Everyone survived, no one drowned, no knees were scraped, & fun was had by all. Corn never even came into the mix, as Owen just did his own thing—-he ate the safe food I packed, & took no food from anyone. How much more simple could it be?!

Lastly, this was also a lesson in learning to trust Owen. My husband reminded me this afternoon (again!) that we must show Owen we trust his ability to self-advocate, at least in situations where he can & will. This doesn’t mean we’re no longer needed on “Corn Patrol.” It just means in the long-run, such trust will improve his confidence & take away some of the fear surrounding this allergy hanging over every aspect of his life. If I’m always afraid for him, how will he learn NOT to be afraid? I think many food-allergy parents struggle in this regard, & we need to keep it in mind when teaching our children how to survive in a food-driven world.

So to sum it up, a good day was had by all….and corn really never came into it! It’s nice to be able to say that.

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Another Knee Surgery—One more reason to plan ahead with corn allergy.

On May 13, I underwent Knee Surgery #6 (the 4th on the right knee), thinking it would be a normal arthroscopic surgery like 4 of the last 5. The last one was kind of a fluke though, but even with it being complicated & having a long recovery, there was no reason to think this one would be as difficult.

Wow, were we wrong….

I’ll leave the technical details for my family & friends, but it’s safe to say there were more things the surgeon had to fix in my knee than things he DIDN’T. My 40-year old knee is remaining to act like an 85-year old knee, deteriorating in ways my surgeon is shocked at. Considering this Orthopedist is 1) the best in the Midwest, 2) the choice of most pro-athletes with shoulder/elbow or knee problems, 3) AND the guy professional soccer athletes fly into to see from Britain, (yeah, the hubby was lucky enough to overhear that phone conversation 2 years ago), it’s obvious I’m in awesomely good hands.

However, it remains difficult for this surgeon (AGAIN!) to explain to and remind me how rare & strange my joints are. Luckily though, his job isn’t just to help the elderly get a knee replacement, it’s also to get professional athletes back to making $$$$. He has helped patent numerous technologies & cutting-edge techniques that blow the mind of even us scientifically-minded people. He has access to state-of-the-art materials just put into practice within the last 2 years. So yeah, I know I’m in the right place. I won’t lie though! The list of things he had to do this time around was absolutely jaw-dropping! My husband had to actually tell me to close my mouth 🙂

Thankfully I’m the type who tends to worry & over-plan. My husband & I had a marathon cooking day the Wednesday before my procedure, just to make the summer a little easier. At first, my husband was just calming my nerves by helping cook this truckload of food. In hindsight, he thinks I’m brilliant and will never doubt me again 🙂 It’s safe to say Owen has enough spaghetti sauce, chicken, turkey, and broth to last months. If I’m having a bad day, all I have to do is thaw some of his safe meat, sauce, or cook a few noodles to top with sauce, etc., —-and he has a quick, healthy, corn-free meal in no time…especially for those days Dad is trapped at work longer than usual.

The hilarious part is how many people laughed at my craziness when I told them about our marathon cooking day. Uh huh—now who has the last laugh-ME! Even my husband has thanked me for being “the way I am” more times than I can count, & he appreciates all I did to get things as ready as possible. He even came up to me at 4-days Post-Op, making a point to say he appreciates & understands all I do to keep the family ship afloat, corn-allergy & all. He’s always been a Super-dad & Super-husband, but the week he took off work to help me FINALLY sealed his fate as Superman….though to be frank, he was exhausted by week’s end.

Lastly, all I can say is raising a child with a corn-allergy is hard enough, & last summer I learned that vacationing 8 days while 800 miles from home is no easy chore either. This time I was taught more a reminder—that you never really can OVER PLAN. I’ve always been a champion planner, with my to-do lists and my Post It notes in strategic places……but I hadn’t truly over-planned since my Undergrad days of college when I was terrified of any grade less than an A. Those skills served me well though, and I jumped back into OVER PLANNING MODE without batting an eye. I kind of think the Big Guy upstairs was giving me a gut feeling ahead of time that maybe, just maybe, I couldn’t be too prepared this time.

It’s now been 12 days since surgery. I’ve been stuck in a straight-leg brace the entire time for all weight-bearing. The brace was unplanned and very upsetting, as it was the main reason the last surgery had such a complicated recovery. Unfortunately, after hearing all the gory, complicated, & technical surgical details at my Post-Op appointment yesterday, I received the kick in the gut I was dreading—–ANOTHER 2 weeks in the straight-leg brace. No driving, no showering (except for 60 second stints on 1 leg), relying on more people to take me back and forth to physical therapy or the grocery, etc. I hate that part. More than anything though, I can’t just trust anyone with Owen, so play-options are limited. I need to get over it though, as he’s been a trooper throughout this whole ordeal, and I am proud of the caring, compassionate, empathetic boy I get to call mine.

No matter what, we’ll get through this. Corn Allergy has toughened me to a point that no knee surgery (whether good, bad, or shocking), is going to beat me. I have mental callouses from being a Corn Allergy Mom that defy even my own logic. I simply amaze myself at times, & I’m sure I’ll look back in 3-4 months & see this time was no different….

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Our Kindergarten Success Story….Yes, it IS possible!!

It’s been quite some time since I posted, and it’s high time I get back to all things “corn”. This spring has been crazy with illness, and Owen’s corn allergy kept us hopping as usual. There were many things to cheer about though….

First and foremost, the end of Owen’s Kindergarten year is upon us–only 10 more days of school. I would say this year was a complete success, with only a handful of incidents. Sure, there was the one friend who thrust popcorn in his face one day and blew popcorn crumbs at him 30 minutes later, but that provided a great teaching moment for self-advocating. Owen’s teacher was great about it, and we navigated through 2 days of convincing him he MUST tell the teacher when things like this happen….and it won’t get you in trouble. Unfortunately, that’s his biggest hang-up—a major fear of disappointing someone or doing something wrong. This child is often his own worst enemy. Maybe one day he’ll finally mellow some, but for now we just deal with things as they happen.

There was also the weird hives on the back of his hands that occurred twice within the same week. We were never able to pinpoint the cause of the hives, but since it was an isolated incident, we didn’t stress about it. He also rode a bus for the first time during a field trip. I purposely didn’t go as a chaperone because I know Owen has to travel the world alone eventually, and this was a good chance for me to let loose of the reins a bit and trust his teacher and other parents to keep him safe. The day was a success, and he talked about the bus ride for two weeks, proving again I don’t have to be everywhere, all of the time. It was a growing experience for BOTH of us.

So, with only 10 school days left, we’ve been busy finding the perfect gift for his teacher. It’s going to be sad, I know. This woman, who I’ll call Mrs. M., has been a Godsend this year. I didn’t even know until April that she kept his Epi-pen in her desk drawer all year instead of the Nurse’s office. She has helped him grow emotionally, especially in confidence. Her wonderful personality has helped him have a love for school every parent hopes for. She has also been key in contributing to who his teacher will be next year, and it means the world to me that she cares so much.

Sometimes I catch myself wondering how next year could even compare to this year, knowing this wonderful lady we must leave behind. Am I setting myself up for disappointment? Maybe, but I have to trust in a system that has worked well with us to this point. I also have to continue believing in myself, as this year has shown me AGAIN that I DO have what it takes to raise a child in public school, in a world where corn is so prolific. I have learned to pat myself on the back.

Lastly, I had a meeting with Owen’s counselor a few weeks ago. I was nervous and anxious beforehand, but I learned she is committed to ensure 1st Grade is as much a success as Kindergarten has been. It was another reminder how I’m not the only one trying to protect Owen each day, and I trust her to make the right decision for his health and his personality. She was just as concerned about his emotional and academic performance as his health, and I left our meeting with assurance that next year CAN be just as good as this one, if not better! Thus, I have faith this coming August will be MUCH easier than last (for me, at least!!)…and for that, I am extremely grateful.

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Even us “old pros” still lose it occasionally……

Yesterday was simply one of those days….

January is always a stressful month. I miss the sun, warmth, & green of trees or plants common to the Midwestern U.S. from April to November. I’m not a winter person at all, & I’ve always known it. My body aches & twinges from the cold, with my muscles protesting day & night. I usually grin & bear it, knowing a midwest Spring can show up anytime in February, March, or at the latest April. This means Mother Nature is closer to the end of winter than the beginning….yeah, for some reason, that’s not helpful this year. 😦

Unfortunately yesterday, I already had a “mad” on from the bitter cold & dreariness this week. Then the doorbellk rang—it was our mail carrier. She had an envelope I needed to sign for, which was an oddity. Upon opening the important piece of mail, I recognized it as coming from our Mail-order pharmacy. Inside was a name-brand pescription and the corresponding bill. What struck a nerve was the portion of the prescription I was responsible for….$165 more than it should have been.

The ensuing crying fit made me realize I was at the end of my emotional rope, & I’m hanging by a thread. Dealing with the food-allergic child isn’t cheap, with corn allergy being one of the more expensive food allergies to have, so wasting money simply is NOT an option.

Opening that letter led to me making some phone calls. The short story is a Doctor’s assumption (note I didn’t say error) resulted in me being responsible for $165 of nNamebrand prescription medication instead of the generic equivalent. Thankfully, after 45 minutes with a very kind service representative, the problem was resolved. I’m embarrassed to admit though how this woman had to listen to me quietly crying while I explained my family’s food-allergic situation. I explained how this medication wasn’t important & is a choice for my quality of life. However, most of what keeps my son safe & alive (food AND specialty compounded medications) IS a necessity, and it’s VERY expensive. She totally understood I didn’t have $165 to waste on a Doctor’s incorrect “assumption.”

This was a grim reminder of the reality I live in—–there is always some financial snafu just waiting to smack me in the face with a two-by-four. Because od recent changes to my husband’s health insurance, there was no way to send the medication back and substitute the generic unless we cold prove the mailorder pharmacy has messed up…which they hadn’t. I still don’t know ow she fixed it, but somehow she did, and I refuse to look that gift horse in the mouth.:)

See, this time there was no financial hurdle to jump across. There was no unplanned medical emergency or auto-repair bill. Nothing actually “broke the bank.” So why was I so stressed about a money situtatio that, in the end, was resolved. Well, it’s all about the unknown. See, for the first time, I have to anticipate (meaning GUESS!!!)what this year will bring in medical bills. We will shoulder a much larger burden of our healthcare costs (thanks to those many changes in our insurance), along with planning for any other emergency that might arise…..and trust me, we haven’t had a year yet since Owen was born that didn’t involve at least one medical emergency. As much as I know this & try to plan for it, I still have with this huge chip on my shoulder. Apparently I’m just daring the Powers That Be to knock it off. I can tell I have a lot of anger, resentment, & sadness regarding the financial aspects of corn allergy….and I WISH someone had told me it wouldn’t go away, even after years of dealing with Owen’s food allergy (& other medical “stuff”) situation….

I used to say I had moved through the stages of grief, as they relate to food allergy. I spent that first year in somewhat of denial. There were at least 2 good years spent in LOTS of anger. This last year or two has seemed to be the acceptance stage. Now I’m not so certain, as I still have a great deal of anger about it all. I think most of that anger is aimed at the financial aspect of food allergy though, not in anger at Owen having the corn allergy. Maybe I need to accept that as progress and take what I can from it, knowing there is still along road ahead, with more progress to be made. A close family member once told me God doesn’texpect us to be perfect….he just expects us to make progress. This entire experience has been a reminder that I still have a ways to go, but at least Ihave made SOME progress.

I really need to work on that chip on my shoulder though…..

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