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!