When your child is in a race that he never asked to run.

I feel like I’ve done everything I can for tonight’s pregame event. 1) cleaned the house, okay I scrubbed every floor, washed every dish, dusted places that I had forgot existed. 2) lin…

Source: When your child is in a race that he never asked to run.

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When your child is in a race that he never asked to run.

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I feel like I’ve done everything I can for tonight’s pregame event.

1) cleaned the house, okay I scrubbed every floor, washed every dish, dusted places that I had forgot existed.

2) lined up help for both the Tot and for Maggie dog.

3) put out reminders not to give him food or drink after midnight.

4) called the nurse so many times she’s now promised to come to Christmas at our house this year, no kidding!

5) avoided any word from the Hero of what was to happen in the morning time.

Even when he mentioned “vacation” tonight at dinner, I just let him ramble on about what all he wanted to do on this made up getaway he had planned in his mind already.

Don’t fault me, I’ve been down this road at least 2 dozen times in the past couple of years ….you just can’t calmly tell him “oh, you’re going in for surgery tomorrow, it’ll be fine love!” NO! You don’t, that news would be a lot for any child to accept ….then triple that by a child with autism and add in a PANDAS patient! Not happening!

I’ve gone over all the risks of surgery, like I said above, the nurse has actually had to listen to my countless questions until even SHE has called back to let me know she didn’t realize the surgeon did this or that for a PANDAS patient. The diagnosis still baffles many including the medical world!

I don’t really know what an athlete would do in the wee hours of the night before a big race but I can tell you what we have done to prepare for this event.

For two years now, more than 730 days we have walked a walk with our child that started with an illness. The illness, strep throat, began to minimic other cells …the healthy ones and because of an immune system gone array, an autoimmune reaction occured that allowed those cells to cross the blood brain barrier which caused the inflammation on our Hero’s brain. We have spent the last two years going from doctor to doctor, traveled and was treated out of state by a specialist, done at least 8 rounds of bloodwork to date, purchased enough medication to require a small mortgage loan, and treated with more supplements than I ever cared to know about!

During all this time, our guy went from a happy, social, fun loving kid whom just happen to have autism …into a child we no longer recognised. His entire being changed …he was but a former picture of himself. Nothing about his personality was the same, he was plagued with anxiety and would scream for bandaids or anything to help stop his obsessive compulsive thoughts! He began having panic attacks so badly that I didn’t want to take him anywhere for fear it would hit him while we were away from home. He had tics, both vocal and motor tics that did not exist prior to the PANDAS. Along with all of that his academic abilites regressed. He quit reading and could no longer spell or do math. Lastly, he had problems controling his bladder and he would wash his hands over and over again out of a fear of germs!

All of these symptoms got better while our Hero was on a long term antibiotic treatment. At nearing the one year mark we decided to ween him off and see if his body could then handle sickness.

His supplements, herbal treatments and new diet worked for nearly six months before he came into contact with a strep infection. Every symptom came back within just a few days of the illness. Like anyone who runs a marathon, you learn the tough hills and how to get over them! For us, we knew to go right back into an antibiotic treatment again.

After one month on his treatments we went to an ENT consult about the Hero’s perforated eardrum. We had put off the thought of a second surgery, (the first one having been nearly two years to the new consult), after the PANDAS diagnosis in large part due to the worry of any new bacteria being opened up into the blood stream. The Hero’s ENT whom had been his same surgeon for ear tubes years ago, took one look at his tonsils and described them as “chronic for bacteria!”

After leaving that appointment our guy ended up with yet another sickness that lasted for three weeks. It was then that we knew we could no longer hold out due to any risks involved, we scheduled the surgery for asap.

Tomorrow brings runners to their meets with marathons to run. It potentially brings him to the finish line of a marathon of which he never asked to run!

Our child, like many show up at marathons every day. They battle their way over hurdles seeking the finish line!
We as parents can tie their shoes, suit them up and drive them to the race but we cannot finish the race for them! We can only watch and be hopeful of what lies ahead!

Stealing Moments

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2016 was about moments ….and how we went about capturing them.

Stealing moments with God. Asking through prayer for things wanted, not always needed. Mostly requested was hope, strength, healing, and closure.

God never turned me down, not once and I found His word through His book and exposure.

Stealing moments counting pills, recounting steps from lost ground. Recreating patterns, studing test results, looking for answers only to be found…. that the regiment was working and he was on the rebound!

Gaining structure, gaining calmness, gaining a smile once hidden by confusion. Beating the illness in those moments was no longer to be an illusion.

Stealing moments on courthouse steps with hugs and tears a flowing, while waiting on the ink to dry and finally, finally knowing!

Moments with an addition that was once thought not to happen as if to only to be a lie. Not true, nothing even close but by God’s grace he joined our family and forever more, we became a  party of …four!

Stealing moments in the sun, with just a hose pipe yet they had big fun. Stealing Moments sometimes staged not every moment was always free,  but those boys though they fussed and f0ught together they would be.

Moments making it “perfection” proved to tire my soul and mind, in those moments pouring an extra cup of coffee and attempting to not get too caught up in the daily grind.

Stealing moments with my better half oh how hard that was to do, just a few moments together getting out was almost more than we could do!

Our moments though short with a tiny outing here and there; proved that our love will last forever and never question the when’s and where’s.

Stealing moments getting ready for him to go, a toddler wont stay small for long and there were things he’d need to know!

Moments crying as he learned new names and faces and counted his very first ABC’s, not too long after that he was on to his 123’s.

Stealing moments when summer had passed with new settings, new teachers and so many new rules, our big kid stepped foot into something called the “middle school!”

Moments pacing, moments circling, moments talking about what “if’s” ….moments thinking to myself, “Is he about to fall straight off the cliff?”

Stealing moments as school became success and we found that middle school was no longer a four letter word but instead more of a common ground.

Moments where meetings came and passed and his anxiety seemed smaller, almost gone – at last!

Stealing moments as I watched from afar, the cute little girl you tagged as “it” almost as quickly as you jumped out of the car! Her grandmother was not happy and looked you up and down, when the little girl got scared of you, I saw that grandma frown.

Moments are sometimes hard ones, not always sure what to say. One thing I’ve become pretty good at however is educating those that seem dismayed! This grandmother was happy to know and so encouraging of her grand, our kids played to the end and almost completely hand in hand!

Stealing moments with good morning kisses, chocolate milk and oatmeal too when finally Santa came to visit we sat down to teach the children a thing or two.

Moments sharing the true reason for the season …on a level our boys could perhaps understand. We then shared a prayer together, holding on to each others hands.

Stealing moments at the end of this year is really all that mattered …no worries about the bills, the needed hair cuts or a house all torn and tattered!

If moments weren’t made …what would we do with our days and our nights? our years would go by and time would lead us to the light. Moments to count each one as THE best, love unconditionally and try to let go of all the rest!

What Red Ribbon Week didn’t teach my son

So last week was our school districts Red Ribbon Week in support of drug addiction, awareness and the harmful effects of drug use. We didn’t get some pamphlet about how to talk to your child or any thing tangible to assist in this “drive” to help detour young minds from doing drugs. In fact, the only thing I remember getting was a reminder sheet of what silly, outlandish clothing item to dress my child in each day! Now, this is not to say that there wasn’t some talk about it in the classrooms or maybe some rally in the gym, although I think with my special needs child I would have been told if his daily routine had changed as that is the usual protocol.

Each day of the week I made sure my child showed up to part and joined in all the other ’round up against drugs’ rodeo recruits, and every afternoon my kiddo came to the car with absolutely nothing to say about drug awareness week!

So, by Wednesday afternoon I made it a point to ask him when he stepped into the car if he talked with anyone during the day or did anyone talk to him about drugs or drug awareness? His answer was simply “no!” Then he went on to ask me “What is drug awareness?” This question span some talk because I had confused him with the word : awareness. By the car ride home I was sure I had made an important topic some mystery by tossing a few words in that didn’t compute with my child….mom fail?

By the time I had everyone inside and backpacks unloaded it hit me however that even though no big rallies about the issues of drugs , nor printed “how to talk to your child….etc” had made its way in front of our eleven year old ….it was okay, he already knew “why” drugs are bad. It was at that moment I thought back to a rather shocking conversation that had happened about three weeks prior between my husband and the kiddo. I recall my husband walking into the kitchen and saying exactly these words:

“Well, Connor is not pregnant and ….he knows exactly why Colton came to live with us , forever. He really understands that part!”

I about dropped the pan I was washing as I gasped “what ??”

My husband began to explain the conversation that he and the Hero had just shared behind closed door in the Hero’s bedroom. My husband said the following about what took place:

Hero: “Dad, I think I’m pregnant!” (let me interject that the Hero’s fav subject is science and wow they’ve been studing plant reproduction….he took it to heart apparently, lol!)

Dad: “No, you can’t get pregnant, that’s only a mom thing!”

Hero: “Oh, well my tummy hurts. Anyway, how are babies able to look like their parents?”

Dad: “Well, that has to do with DNA and how babies receive some things from the mom and some things from the dad.”

Hero: “Why did Coltons Mom and Dad do drugs for?”…This was bad!”

(WOW, HOLD UP I KNOW THIS DID NOT COME UP DURING SCIENCE CLASS…)

Dad: “Well buddy, they had a problem with addiction and well, they loved their drugs more then they could love and care for Colton.”

I was dripping soapy water all over myself and the pan I’d been holding but I didn’t care. The ability for my child to truly understand how drugs affected anothers life and the consequence of their actions blew me (and dad) away!

Sometimes, because he’s speech is delayed some and because he doesn’t always say much, we forget just how much our Hero really IS paying attention to the world around him!

No, I don’t need a Red Ribbon Week to teach my child one thing about the affects of drugs…he’s already got that down pat!

In light of the efforts of our school system and the tough job they have trying to teach about the harm of drugs it cannot all be done at school….

Please talk to your kids while they are young. Please don’t assume they get it and why it matters! Lastly, don’t think that the dressing up like everyone else and the “fun lesson”  is going to keep them safe from what lurks just outside their reach…

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It matters!

Xoxo

 

 

 

 

 

 

Friends are a lot like shoes. They often fit into one of the three…

a) They fit better with time and the longer they’re with you, the more comfortable you are.

b) The longer you have them, the more they start to stink!

and

c) You’ve thrown them out or they’ve been lost in the shuffle…and, you miss them terribly.

Pick your shoes wisely! And should you step in poo with them, clean them up and keep walking!

Oatmeal & Bakugans