Anything but.......

This is Paysen's view of his "super brother"

I can remember back when Paysen was born.....long, long ago.....well actually just about 7 years ago.  I had everything figured out back then.  He was born into a life of stability. He had a schedule.....I knew exactly what he would be doing at any given time....like I said, I had things figured out.

Fast forward a couple years and those figured out things were shattered.  I am living in the midst of a family that is not average....anything but.

Our schedule is dictated by oral medications, IV medications, treatments, and how a particular someone is feeling.  I cringe at the thought of making plans, knowing that I will very likely have to cancel them. 

When you think of a "normal" family, you may think of things like, bedtimes, meal times, discipline, activities......and so on....   Our family is quite different....bedtimes are changed according to medicines that are scheduled.  Meal times are approximate and can change instantly, we all eat around the table......but usually one of us is too tired to stick it out through the whole meal.  Discipline is hard because of drug side effects and emotional experiences.  We have to pick and choose our battles and punishments, we generally choose to focus on things like manners and the way we treat other human beings rather than clean rooms and finished chores........it wasn't always this way.  Activities are a disaster to plan, we have to adjust them according to the amount of people Parklen will be exposed to, fix them to cater his weakness and inability to last long.....  So normal??  no.....anything but.

Most families may have a dad that goes off to work and comes home to rest....we have one that goes off to school, goes off to work and then goes off to study.....his schedule is nuts.....we adapt.  We will drop everything possible to spend time with him when he is able....knowing that quality is so much more important that quantity.

Some families may frown upon sharing a bed........we soak up the evenings that come with tiny toes digging into backs, kicks, shoves and snoring.....we hang on the moments of our children snuggled in tightly to our king size bed.....we thank God for each given moment of closeness, realizing (possibly more than the average parents...) the very fragile nature that is this life....knowing all too well how quickly we can be torn apart from one another....remembering that each and every day (and sleepless night) is a gift.  It isn't an every night occurrence but it is an every morning one.  The five of us spend a while each and every morning smooshed into our bed, snuggled close.  My favorite part of the day.....

I spend my days as a mother nursing an infant....dispensing meds, changing out IV drugs, managing a feeding tube, emptying ostomy bags, entertaining a 6 year old, preparing meals, loving my husband, laughing with my daughter.....playing with my sons......and most importantly, I spend my days being thankful....when I want to cry because it is all so hard, I try and choose gratitude instead.  Who knows what tomorrow holds? God does.  We aren't normal, we aren't even average.....we are really anything but.....  and I am thankful for the opportunity to participate in the craziness that is our family.

God has blessed me with amazing people in my life....I have some friends that are far past amazing.  A few special ladies are putting together a 5K fundraiser for Parklen and his upcoming transplant.  If you know anything about our boy, you know that he loves super hero's.....that supports the theme of the 5K...  its a super hero run!!!  People are invited to come and support Parklen and sport their favorite super hero costume as well.....doesn't that sound amazing!  You can find the information here, and if you live too far to participate you can find links for purchasing tshirts with a picture of "super Parky" drawn by his brother or links to just donate!