June 27, 2012

Happy Campers?

When Alan and I were married, one of the gifts purchased for us from our registry was a very large tent.  We loved the outdoors and, anticipating having a large family one day, we wanted room to grow.  We got a lot of use from that tent early in our marriage and our friends that we went camping with often made fun of us for having such a enormous tent.

Then the babies started coming and our anticipated family camping trips never seemed to come to fruition.  The entire first decade of the 21st century found me pregnant (don't want to sleep on the ground in that uncomfortable state) or with a newborn (don't want to take those wee ones camping).  So besides the occasional back yard stint, that big tent gathered dust.

With that blurry decade now a distant memory and all the little ones somewhat more managable, I decided Father's Day weekend was perfect time to dust off that tent.  We bought Alan a great new sleeping bag for Father's Day that we were excited for him to use.  The girls and I readied all of the classic camping food and off we went to a fun campground.

Bridger was showing his ultimate excitement with our adventure by wiggling every muscle in his body as we walked into our campsite.  We set up the tent where the kids played while I got dinner ready.  Every few minutes Eliza would unzip the tent to yell, "MOM, 'sure having a good time in HERE!" - then disappear from whence she came and the tent would continue rocking.

We roasted hotdogs and invented a new s'more -- the Reese's Peanut Butter Cup S'more, which soon will be patented.  Bridger had to copy his siblings and hold a hot dog on a stick - even though he didn't understand the concept of proximity to the fire while holding that stick.  It was picture perfect, the camping trip of our dreams.

Then night came.

We nestled into our tent.  The once ginormous tent was filled to capacity and then some.  We gave Bridger his ipad to settle him down with.  There was no settling down Eliza.  She pounced and danced all over our faces.  Perhaps she had one too many of my signature s'mores.  Then the tent started shaking with the sound of dad's snoring.  Nobody was going to sleep through that.  So at 2am it was decided for the benefit of the other 6, that he was to go sleep in the car.  So that left me and the five kids - four of whom had finally fallen asleep.  Except for that naughty little thing.  She would not even so much as give a long blink.

Bridger also has uneven sleep patterns and as I lay there in the dark I would hear him wake up and go back to sleep.  That is, until I heard his older brother talking to him for some reason.  I said something in the fierce mom whisper that all mom's have, Lance rolled over and went back to sleep.  But his tent mate, thinking it must be morning now, hollered, "BRUDDER, BRUUUDDDDEEERR!" at the top of his lungs that echoed through the entire campground.

3:30 a.m., there I lay with two wiggly ones on either side of me, not having slept a wink.

The climax of misery happened when, at 4 a.m., I heard the car start from the parking lot down the trail.  Alan was freezing.  He finally came into the tent at 4:30 and I groggily welcomed him to join our party and offered a slurred, "happy. . . father's. . . day".  We finally got Bridger and Eliza to sleep around 5:45, woke up at 7 and came home.

Not sure if camping will be in our near future.  Miraculously, all that the other kids remember was mom's amazing s'mores, Alan remembers freezing in the car, and I remember how much I enjoyed Alan's new sleeping bag  - even with its 2 uninvited guests.

June 10, 2012

Those Others

**Some may think this blog is a little Bridger-dominated.
answer: that is the point.  I want to share a glimpse into the life of a special needs family and for Bridger to share the gifts he has with as many people as he can to help fulfill his purpose and design in his life's journey.

**Some may think our world revolves around Bridger.
answer: My world revolves around my family.  Bridger is a critical part of that revolution and has changed us, refined us and molded each of us, individually and collectively.

**Some may think the other children are forgotten.
answer: They are not forgotten.

Quite the contrary.  I speak for special needs families collectively when I say that because of the strain and stress that a medically complex child places on a family's life, that those mothers lose sleep at night to figure ways to make the most of every minute.  We over compensate to make sure that the other children do not feel the overwhelming strains and pressures of this life style -- but only the good and the love.  I make sure that they get alone time with me, date time with mom and dad, group times as siblings without Bridger and family time that makes them glad he is part of our family and not the center ring of our circus.   As a consequence, they have learned gratitude and appreciation.  They do not take for granted the sight of seeing their mom or dad at their basketball game.  They act like they have won the lottery when we take them on a mom AND dad date.  They have come to expect special times that they can open up and share their feelings.

Evie and I led the Brownie troop activity a few months ago.  We invited an author to come present her book on disabilities with her special daughter.  Before the author spoke, Evie presented a report she had prepared about children with special needs.  Before her presentation, I invited her up to stand next to me as I spoke to the Brownies about kids who have disabilities in their life -- not the ones we often speak of that have the diagnosis, but the other kids we don't talk about that have disabilities in their lives -- the siblings.  I talked about Evie and all that she endures so patiently, all that she loves and accepts and sacrifices and how it has made her such a sweet daughter, shaped her into the best sister and transformed her into being the most wonderful friend.  Her face was beaming like she had just won an Oscar and she was bursting out of her Brownie vest.

Mothers like us cannot give in to time-sucking activities like pinterest, facebook, pouring over our hair or wardrobes, needless complaints or negative energy because we need every.  single.  minute.  We have enough already that consumes all of our daylight (and much of our moonlight as well) - specifically 20 medical appointments in the past 12 days and the accompanying 7+ hours of administrative work with insurance that follows closely behind.

Though my journey continues without any knowledge of the freshest crafty decor, without knowing the latest happenings of 316 "friends", with severely neglected hair and my circa 2001 Walmart jeans, my heart is full to know that those other precious four are never forgotten.  In fact, the beauty of this special journey would not have been near as tender and refining without witnessing them as a part of it.

Years ago I posted THIS.  I marvel as I read it again.  I had hoped and anticipated a future time that Sadie would be the one Bridger would crawl to, that Evie would be the one that Bridger would say his first word to, and that Lance would one day share a doughnut with his brother.  Fast forward to the present and indeed, Bridger moves for Sadie as they cut a rug together that is worthy of any dance-off.  One of Bridger's first words was not to Eva, it was for Eva.  His little mouth hollers for "E-Bee" from all over the house, and Lance and Bridger regularly eat off of each other's plates (as long as it is ice cream, pancakes or Lucky Charms).  Some may see these as developmental coincidences.  But where others choose to see coincidences, I choose to see miracles - miracles that those siblings created that I could not.

A lifetime of perfect mothering could not have formed the hearts in these others that just 5 years with their special brother has.  But hopefully, I will be able to take credit in shaping those hearts just a little in between all the therapy, sleepless nights, medical appointments, hospitalizations, IEPs, tube feeds, vomiting, etc. that come along with this life.  Those four others, they are special too.