May 18, 2013

What About Me?

We just hit the third anniversary of one of the scariest moments I have had with Bridger - when I walked into his room in the night to check on him and found him gray, covered in vomit and unresponsive.  I yelled for Alan and we gently moved him from his bed to the floor where he proceeded to launch into a full tonic clonic seizure that would not stop.  I was on the phone with 911 and went down to the front door to watch for the ambulance while Alan, with the most steady and calm voice, would shout down updates for me to relay to the 911 operator.  His dialogue went something like this:  "Ok, he is not breathing now. . . come on, Bridger, you can make it. . . Now he is turning blue. . . .Bridger, stay with us. . ." It is a side of our husband's that not many of us ever have to see.  But having seen that side, I love him in a whole new way.  He is a rock.  I have written about this incident before, but have left out some details in my previous telling.  My omission -- the part about me.
I was a mess.  I was trembling and shaking as I watched for the ambulance (as well as the trailing ambulance, fire engine, fire and rescue suburban, and two police cars) to pull up.  I opened the front door as they rushed in with all of their life saving gear in tow.  The first person in the door, however, did not rush up the stairs to Bridger's room.  She came to me -- the scared, trembling mom standing next to the door and she took me over to the couch and sat me down and put an oxygen mask on me.  She held my hand as people rushed up and down the stairs, eventually carrying a gurney out the front door with a small convulsing child on it and an EMT manually pumping oxygen into his lungs.  She drove me in her car with the emergency lights on (though it was against policy) closely following the ambulance and translated the updates that were broadcast over the radio.  She walked me into the hospital, transferred me to the care of the hospital social worker and then discreetly disappeared forever.  Despite all of the fear and critical attention needed for Bridger, she only had concern for me.
That is not attention that is often ever cast my way.  From the hundreds of medical appointments we attend each year to the countless social pleasantries I exchange to others in passing, "How is Bridger?" are always the first words out of people's lips.  Often it is followed by, "and how are the other kids?"  Once in a while, I feel a little whisper inside of me saying, "and what about me?"
Special needs moms are so smothered by the weight, commotion and overwhelming presentation of this special package that we are so far removed from anyone's radar.  I recently attended a play and watched all of those stage hands wearing black clothing, dashing across the stage making sure all of the backdrops are changed and props in place, all the while hiding, ducking and camouflaged from the common view.  That is what I feel like.
Well-meaning acquaintances will offer their wisdom that, "You have to make sure and take care of yourself."  Doctors, who see all too well the demands of this journey, know better than to offer such lofty and trite advice.  They simply look at me with the most sincere and genuine eyes and tell me I am doing amazing.  Then they bury me with a new load of prescriptions, recommendations, follow up and new specialists to see and send me out the door.
So what about me?  What about any special needs mom?  Though we don't want attention, praise or anything of the sort, a bit of respect is always appreciated for doing superhuman feats with a very human body.  Our "take care of yourself" time comes in the most pathetic forms -- we might browse the newest items of a special needs equipment catalog while we wait for an inherently late Special Education bus to arrive or we might go to the doctor for our own ailing bodies once in a while, or pause to give an extra long greeting to a friend we run into in the store as we ignore the screams from our child that come for daring to do so.  For me, my "take care of yourself" time has come in the form of a long neglected back surgery so that, after I heed my 3 months of restrictions to not lift Bridger (ha), I can lift him again with moderate pain instead of severe pain.  So here I lay absorbing a stack of magazines centered around life sustaining information like home organization and getting better abs, tuning out a home repair show, taking an occasional nap as I sleep off the pain meds, trying not to think about another surgery that awaits me in the future when Bridger grows from his 4' body to his 6' + one. 
Yep, I got my wish.  Right now, it is all about me.
*please pardon any grammatical errors, run on sentences or other nonsensical ramblings. This post was written fully under the influence of Percocet. 

May 07, 2013

My Tattoo


Don't have one.  Yet.  I am seriously considering getting one.  I have been thinking about it for a while.  What would it read and where would I put it, you wonder?

"He has Special Needs" - inked directly across my forehead.

There has to be an ink shop that has already done a couple of these because I am surely not the only mother of a special needs child that has wanted this stamp.

A weekend a few weeks ago was particularly challenging. (actually, who am I kidding, every weekend is challenging)  We were on a road trip and Bridger had been screaming quite a bit in the car.  Cars are challenging to him.  With his vision impairment he can't watch out the window, so I guess I would feel a bit of angst if I had to stare at my lap or the seat in front of me for a long drive.  It is especially fun when he gets in his "road rage" and reaches forward and yanks my hair from behind as I am driving. 

We proceeded to go into an activity center where Bridger was told he could not participate.  My previous thought that we were going to be having some family fun was sunk.  We left and went to Walmart for some groceries to continue in our road trip.  Alan was holding Bridger upright in the cart and I had dashed down the aisle for an item.  Bridger let out a shriek, to which the lady next to me whirled around to stare at him and say in her very loud voice for all to hear, "What is WRONG with him?!?"  Not knowing that his mother was standing right next to her I looked her dead on and said in my most even tone I could muster, "HE has Special Needs."  She let out a little "ohhh" and Alan and I pushed our shrieker and other little ones to the checkout and left the store.  

My retort that I was saying back to her in my mind was "nothing is wrong with him.  What is wrong with you?!  What is wrong with you that you have zero tolerance for anything that is outside of your realm of acceptable and normal that is so atrocious to you that you feel you have no choice but to comment?" *sigh* of course I would never say that.  But I think it a lot as the situation described above is something that happens nearly every day.

Our mistake was that we dare put him in a cart.  I sometimes am grateful for his wheelchair because it makes him look. . . you know, 'special'.  It serves as his 'tattoo' and hopefully is accompanied by some piece of a benefit of the doubt when others may be quick to judge, criticize or comment.  My friend who has her share of similar situations with her son that has autism has a 'tattoo' on her van in the form of a bumper sticker that reads "Autism Speaks".  When she is dragging an awkwardly heavy 12 year old to her car in the middle of a tantrum amidst the stares and shock of spectators, she is grateful for her tattoo - that perhaps allows judgment and criticism to be passed over.

People don't see how many medically complex children there are out there because there are very few places to go that are worth the hassle and extraordinary effort it takes to simply get out of the house.  But when we do, we just want to blend and be normal.

Just the other day I took my kids to a farm and a woman was walking towards us from the opposite direction.  For a good hundred yards away she stared at us, gawking with her mouth hung open.  I watched her out of my periphery through my sunglasses as she got closer, wondering when she would get her eye full and close her mouth.  She never did.  We may have some extra wheels, extra movements and extra sounds, but we are not blind.  It wasn't until I decided to have some fun with her, (because you have to have fun with people like this some how) when I looked at her the same way she was looking at me, that she brought her chin off her neck and finally looked straight ahead.  Brave woman - there were far too many flies swarming around that barn to leave your mouth hanging open that long.  Shocking that we would be more of a site for seeing for her than the newborn lambs or the milking demonstration.

So I want my tattoo.  Loud and clear on my forehead.  I want people to stop staring, commenting, sharing criticism masked as 'advice' -- and did I say staring?  Until then, I think my days of just being a wallflower are through.

May 03, 2013

Here I Am

AWOL, hibernating, underground, or perhaps all of the above.  Whatever you want to call it, I was off for the winter relocating my zen.  Where do you find yours?  You know, your zen, your inner-harmony, or (my new favorite descriptor) your flow?  Flow [the noun form] that is the mental state of operation, an existence where time doesn’t dominate, living in a complete state of contentedness and calm, experiencing and taking in the now, unaware of future happenings or to-do lists, absorbing  every single breath, sight and sound of what is.  Tricky stuff, that flow is.  But when I have it - and manage to keep it, I wouldn’t trade it for a million dollars. 

I find mine in the most unexpected places.

I find it here. . .

We started the New Year with Bridger quite sick.  Subsequently, we spent another week in the hospital in quite fragile health.  He had layering complications which ultimately were causing his liver to shut down.  One may think that would be a very trying period.  Indeed it is.  It is never easy to carry on with a normal life for the other four at home, managing activities, meals, homework and hugs while a mom is in the hospital and dad juggles being a busy attorney and a Mr. Mom when he comes home from work.  We go through it all too often and it doesn’t get easier, it is just part of our life.  But that is where I find my flow.  Our hospital room was so peaceful - Bridger oozes love even when he is in a practically comatose state and the nurses, doctors and staff feel it and comment to such.  I am told from the nurses that when the new nurses come on for the next shift our previous nurses boast to them how lucky they are to have us on their caseload that day.   This hospital stay was full of moments to reflect, time to chew on some deep thoughts that get buried inside me, wonderful conversations with nurses and doctors that resulted in a new possibility to be a presenter to medical students on the critical balance in maintaining a healthy, thriving family while caring for a medically complex child.   I came out as refreshed as if I had just spent a week in the Poconos.
So how do I find flow in our hospital stays?  I have to give credit to a couple of wonderful neighbors who are truly compassionate and serve because of that.  Too often people serve out of duty.  Service doesn’t necessarily breed compassion, but true compassion always breeds service.  Harmony came in the form of  a wonderful visit from a  dear friend that lives a parallel life caring for her daughter with special needs.  But I think the larger force in finding my flow here is realizing when everything is out of your control, that there is really nothing you can do about it.  So that takes away the need to worry, to plot, to plan.  You just exist where you truly are and savor what truly is.

I also find it here.

I really do.

Disney, for us, is just like the commercial states – Magical.  There was no better way to celebrate restored health than a week in Florida.  I will do this vacation justice in a separate blog post to come but will sum it up with three words.  Best week ever.  We flew down, rented a super huge white extended van complete with vinyl floors and a electronic back-up beeper (which the kids thought was the best car eVeR), stayed in our favorite off-site 3 bedroom  accessible condo, and hit all the parks.  Best week ever.
Bridger loves Disney in a way that is hard to describe.  Every morning since, the first thing he says when he wakes up is "I wah go DEEDEE".  No translation needed.  He cried every time he got off a ride, despite our best efforts to convince him that there would be another fun ride in a matter of minutes. 
I was told once by a woman that, “You people,” ('you people' was referring to you special needs families) “have it so easy!” She then launched into a nauseating monologue on how her son can’t stand in line for an hour for a ride at Disney either and how all of our perks make life so easy.  Comments like that are real zen-deflators.  May I interject that I would wait in line for a hundred hours for the Peter Pan ride if it meant that Bridger could stand on his on legs beside me.  I would trade bypassing the Splash Mountain lines if it meant that he wouldn’t have a seizure waiting in the parade line.  Disney World for us still comes with hours of Bridger screaming from over stimulation, with finding quiet cool places to tube feed, change a very large diaper or lifting 65 pounds out of his chair and into rides dozens of times a day, along with the regular challenges of herding the other 4 cats around an overcrowded park.  But despite all of that, I find my flow there.  It is a place where I see true excitement and utter joy screaming out of Bridger’s eyes at the same time of all my other children.  What is exciting to the others usually is quite the contrary to Bridger.  To have everyone smiling all at once is priceless. 

Lastly, I find it here.

The small and simple pleasure of taking a scalding bath in my extra long soaking tub filled with chocolate fudgy cake bubble bath from Sephora, an organic peppermint candle and a good book.   And when the lights go down in our big top at 20:00 hours, I can enjoy utter silence and my simple pleasure of my long bath.  I find my flow there too.

I don’t find my flow in yoga classes wearing the cutest yogini tops, or in exotic tropical destinations with my husband.  Groupon and Living Social are such evil teasers – blasting me with visual reminders of the incredible sites and travels I am missing out on for unbelievable low prices.   Those sites torment special needs moms as we realize we will never have those experiences.  It is a luxury  when we can go grocery shopping.  I won’t have palms and white sand any time in my near future. I can’t put off waiting to find my inner peace in a bulky bit if “me time”.  I won’t find my flow in any of these places because these things will never happen.  I find that time stands still in those every day moments like now, when I am having a second to think and type, while I entertain more medical phone calls in between sentences, crunching on some delicious almonds while my little spunky girl sits next to me drawing and spilling her juice box on my to-do list.  Yes, even in my flow, I still have one of those silly lists.