November 24, 2014

The Question I Answered Wrong

I was a presenter on a panel this week.  It was a special panel.  I was asked, along with three other mothers of children with special needs, to give insight to and field questions from a group of recent college graduates that are pursuing various careers that involve individuals with special needs.  These graduates are all currently working as Fellows at Jill's House - the wonderful respite lodge that Bridger occasionally enjoys a weekend at.

Easy peasy. I speak the language of Special fluently.  The other mothers and I gave a little glimpse to our daily lives and answered their questions.  At the end of the presentation, a final question was asked.  It was the question I answered wrong.  

We were asked how we had changed because of this special journey.  Without thinking, I let my brain recite some prerecorded message.  I said the token answer I often give to explain that this journey is not a prison sentence, but quite the opposite.  I said my standard answer, that this journey has changed the way I view every single element in life.  It has given me a different lens to look through, one that I can't take off and will allow me to see with more clearly, feel more deeply, and be released from the minutia that unnecessarily occupies so much of our daily life. . . or something to that effect.

Standard rosy answer.

It was the wrong answer.  This group didn't need my rosy answer.  They deserved the real answer.

I realized it was the wrong answer after the discussion panel was over and I was thinking about the amazing women I shared that panel with.  I had been sitting on a panel with brilliant, beautiful women.  However, we all look pretty two-dimensional in the land of Special.  So all-consuming is this special life that it has shoved every other piece of me into a corner, and I couldn't help but think I wasn't the only other one of the panel that felt that way.

How has this journey changed me?

Here is the real answer in the best way I know how to say it:

In Matthew 10:39 it says, ". . .  he that loseth his life for my sake shall find it."  

I heard an interesting analogy once upon a time that applied that scripture to the context of Motherhood.  So true.  Apply it in the context of being a special mom - then it sums it all up.

We have lost our lives.

We used to be women of many talents.  We had interests and abilities.  We had options and intentions.  Most of us have lost that.  But in losing our lives in this way by devoting our lives to the complete care of these fragile little children, we have found that His promise written in Matthew is being fulfilled.  We are finding our lives.  The process is not complete - we still mourn the lives we lost, but it is like a long, drawn out treasure hunt.  We see the glimmer of the wealth along the way of what we know we are gaining.  In the meantime, while we are still trying to follow a very complex treasure map, please understand that we have lost ourselves, and are not sure if our old selves are ever to be found.

If you happen to see my old life, please let me know.  I miss it terribly.  But, I love the new life I am finding even more.

November 21, 2014

Sharing Shoes

Empathy -

it is powerful.

Special moms -

they are beautiful.

And, they have empathy - which makes them powerful and beautiful.

I meet new special moms everywhere, nearly every day.  I connect with them at the grocery store, in the parking lot, at the doctor's office, through friends, in line at the ice cream stand, at the park, and on vacation.  We have a way of spotting each other in a crowd.  We become instant friends and exchange a hug at parting like we are old friends.  I also appreciate the ones that connect with me through this blog!

I have a space close to the center of my heart that is filled with love for my special mom friends.  There are many that have been by my side from the moment we received our diagnosis.  We have stood by each other through milestones and smilestones, through births and funerals, and everything in between.  Only with these women is it possible to laugh and cry in the same sentence.

A handful of my favorites and I traded our moccasins for some fuzzy socks as we escaped to the cabin last weekend for 24 hours of much needed relaxation.  We made it a mother/daughter getaway and took our daughters, 6 in total between us, all of whom are siblings to a brother with special needs.  We left the super dads home with all of our super sons.  

You know what we all thought was fun?  Getting out of the car at the gas station convenience mart and walking around - because, we could.  Simple pleasures. Pathetically relaxing.

The moms arrived at the cabin welcomed with a little gift I had come across and couldn't resist. . .

Seriously, we have to have a good laugh at this unexpected journey we share!  Will people dare laugh when they see us strutting around with our new totes?  More likely to just give a confused double take, maybe?

The girls played with us, around us, and then disappeared altogether.  We thought ourselves pretty efficient that we could couple a needed respite for ourselves with bringing 6 little girls and being the "fun mom" that our daughters need to have us be.

This little trio of kindergartners - they have empathy.  They know what it is like to have your hair constantly pulled out in fistfuls as soon as you became old enough to grow hair. They know what it is like to have your toes run over by wheelchairs, to endure screaming for hours and to never get to ride in the grocery cart because you have to push your brother in a wheelchair so your mom can push the cart.  They speak the same language -it is the language of understanding.

These three older girls, they have empathy too.  Just like me, they meet a new special friend and are instant besties.  Without mentioning to each other that they have watched their brother seize, that their mother has been at the hospital instead of at their concerts, and that vomit is just part of daily life - they somehow know that they walk in the same shoes and they enjoyed strutting down our long driveway to nowhere sharing that same unspoken comfort.

And these ladies. . .(oh, so sorry friends that I only had one picture of even part of our group and it was this one - so I had to post it - forgive me? :) . . . they just ooze empathy.  With them I can take off that Normal Mom costume and just be my very genuine self, as can they, which makes for some really fun and refreshing company.

The 24 hour itinerary:  talk, sleeeeep, eat, repeat.  We returned to our boys with a bit more energy to our step and a new laugh line to add to our collection.

Empathy is walking in someone else's shoes.  Special moms -- we all share shoes.

November 15, 2014

Letting it Go

I just went an entire 24 hours without hearing a song from Frozen.  That will mark the longest such gap in the past 12 months.

We have watched Frozen, we have sung Frozen, we have Chapstick'ed Frozen, we have magnetic doll'd Frozen, we have coloring booked Frozen, we have sippy cupped Frozen, we have Nintendo'd Frozen, we have bejeweled Frozen, we have beach toweled Frozen, we have stuffed Frozen, we have painted Frozen, we have fruit snacked Frozen, we have sticker booked Frozen, we have socked Frozen, have Halloween'ed Frozen, we have play figure'd Frozen, we have Playdoh'd Frozen, we have Just Danced 2015'd Frozen, we have app'd Frozen, we have dressed up Frozen. . .

Catch where I am going with this?

I think it is now safe to Let it Go.

As a final salute to Elsa and all the joy she has brought our home, a couple weeks ago I decided to surprise the kids with tickets to Disney Frozen on Ice and go out with a big Frozen bang.  (Lance elected to go on a date with his dad to the shooting range instead.  He would rather not hold glow wand and wave to Elsa, wha?)

I am only willing to risk such overwhelming public venues as this because of the wheelchair and visually impaired seating.  Fantastically exciting for Bridger (and others) to be only inches away from the ice and characters gliding right in front of him - their skates spraying his face with the cold ice shavings.

Of course, one cannot attend such an event without looking the part.

The star of our show - our furry Sven.

A long time ago my older son had astutely told me that since people were going to stare, that we should give them something good to stare at.  A few months ago I found a sign to adorn a side table in our home that serves as a daily reminder of that sentiment, "People are going to stare -- make it worth their time."

So, true to our new mantra, we aim to please and by the amount of stares and comments we received, I think we did make it worth their time.

Our wheeling Frozen pack arrived at the arena providing pre-show entertainment.  Ty didn't know what all the fuss was about, he just dutifully wheeled along side his boss.  Ana's boots (that she insisted on wearing) were 4 sizes too big so for those that didn't see us we bound to hear us as she clomped along echoing her way down the corridor of the arena.

As soon as we were escorted to our seats at the base of a crowd of thousands, Ty Sven pounced into action.  He stood and went into a "visit" on Bridger's lap, his head pressing hard into his stomach.  Bridger leaned over him and held on and they hugged their way through the stress generated by the sounds and crowds.  Ty was not trained to provide such comfort - he just does it instinctively and I was proud of him for sensing the loud and overwhelming environment and initiating the comfort to Bridger.  Olaf and Sven hugging it out in the wide open first row also provided some an adorable photo-op for a dozen strangers that now have that scene embedded on the flash card of their camera.

Eliza was mesmerized, Sadie was giddy.

Evie was in awe, I was excited that everyone was content to share a single $18 snocone in a souvenir cup.

Bridger was feeling every moment as he lyrically danced through the songs with his muscular spasticity. 

And Ty, well, he was quite indifferent to the whole thing - as he should be.  He was focused on Bridger, and every time the crowd applauded he was on his feet, head in Bridger's lap to calm him through the loud applause.  

That is the reason for that big "Do Not Pet" patch on the back of Ty's vest (that is ignored all too often by strangers.)  Every time someone pets him it diminishes his focus on Bridger.  If he learned that every stranger approaching him was a potential hand to scratch his head, he would treat that greeter with more importance than he does Bridger. He is very focused on Bridger and we need to keep that eye single to his little Olaf of a boss.

It was a wonderful afternoon of novelty and adventure for my little bunch.  I didn't mention how difficult it was to haul Bridger around this place, because whatever physical and mental drain it was, was more than replenished by the look in their faces.  I love experiences so much more than things.  I hope that by the time I am finished with this chapter of motherhood that their toyboxes may be empty and their minds may be full of memories - because you don't ever have to Let those Go.

November 13, 2014

What's Your Goal?

When my alarm sounded at 0:dark-thirty this morning I awoke to rustling and banging coming from my kitchen.  It was my 13 year old son, who had set his alarm for an even earlier hour, making a full breakfast for the family.  He had warned me of his intended surprise last night by informing me that I was to stay in bed in the morning while he made breakfast for everyone, and that he would be getting Bridger ready for school as well.  I smiled at his instructions to me last night, and smiled again this morning as I heard him bringing his intention to fruition.

I asked Alan to go downstairs and see if Lance needed any help.  Alan found Lance handling the breakfast preparation quite well, but offered his assistance.

"Actually, Dad, I am fine here," he said, "what I could use is you going upstairs and getting Bridger ready for me.  The goal here is not the breakfast, but it is to make Mom happy."

Could more insightful words be spoken by a 13 year old?

He knew the goal.  The goal had nothing to do with how well breakfast was prepared.

I was grateful for his sweet gestures to me this morning, but I was even more grateful for the important reminder that statement was for me.

I needed to be reminded today, and every day, of the goal here and why I am doing what I am doing.  Just like Lance, my goal today is make them happy, and even easier than that, to make them feel love.

All of the activities, extra curricular interests and appearances that we sign our children up for - is it to support our purpose or is it becoming our purpose?   

I was walking out of an activity with my daughter a while back as another child was leaving that same activity in front of us.  Her father was twenty paces ahead of her yelling for her to hurry up because she was going to be late for her next activity.  That angry exchange went on for several minutes until they exited the building and got into their car - the child in complete tears and the irritated father revealing a select vein in his forehead.  It was a reminder to me that what activities I do sign my children up for, what assignments I volunteer for, what goes on in our home and outside of my home should be fulfilling my goal.  My goal will not challenged by overwhelming weekly schedules.  My purpose is not to present them in all their talented glory in every venue possible.  My very calculated and methodical intention for them can be accomplished for free, inside my own home. 

Lance's goal was accomplished by a platter of waffles and some assistance for his brother.

My purpose in motherhood is far less complex than society makes it out to be.  If we remember our goal each day, then we might realize that all of those things that we are doing to for them aren't really in alignment with our goal, and therefore, things that we don't need to be doing at all. Amazingly then, mothering just became a lot more simple than many know it to be.

I feel no guilt about growing my recycling bin of all the catalogs of vast recreational opportunities, thickly stapled packets of after school activities, or products and offerings that come my way for their advancement.  I am not raising resumes.  I am raising someone's future wife or husband, I am raising someone's future mother or father, I am raising someone's neighbor, I am raising someone's friend.  The best prerequisites for each of those is fulfilled through my goal of filling them with happiness and love.

Thank you, son, for your reminder today that life is very simple indeed.  Your gift is being able to see the forest through the trees. 

Note to self: remember my goal

November 11, 2014

If You Can't Say Anything Nice. . .

Halloween is over, yet I am still wearing my costume.  I call this costume "Normal Mom." In my special circle, nearly everyone wears that same costume.  We run around throughout our day doing our errands, work assignments, children's activities and such, just trying to blend in and hopefully not expose our real identity under our costume.  Trying to be Normal Mom for a special mom is like trying to run through quick sand while everyone else is on dry ground.

After a taxing week of seizures, health challenges and all that accompanies them, I took off my Normal Mom mask to leak out of few words of my reality on Facebook.  I shared a *glimpse* of my day and I gave a plea on behalf of every mother of a special needs child out there.

I posted, in part:

". . . It is not only me today, but a 1/2 dozen of my special needs mom friends today also, and it was our yesterday and it will be our next week as well. Reach out to another mother of a special needs child around you. The hardest day imaginable is now their every day for the rest of their life."

My position is not ever to be self soliciting, but because of my inside perspective, it is to bring awareness to a lesson in humanity, understanding and compassion that is most likely right in front of everyone's face, in the form of some friend, acquaintance or member or our community living the special life, that might not be seen.  They might be invisible because of those deceiving Normal Mom costumes.  You wonder then, why do we all wear these costumes that make us invisible?  Here is the answer:  If we were going through some short term challenge, acute illness or other trial with an ending point - we would just ride it out in our natural form.  How do you look when you have the flu or are recovering from surgery?  You wear sweats, you don't shower for a few days, you might neglect the house a bit, you go underground, call in sick, cancel engagements, call in reinforcements, ask for favors and what not, right?  But our challenge is not acute, temporary or limited.  It is our Forever. As such, we have to put on the costume and keep going.  When I said to imagine the hardest day of your life and then understand that would be the new everyday for a mother to a child with special needs - that it was our last week, it is our today, and it will be our every day in our future, I wasn't exaggerating.  Here is the experience of one of those 1/2 dozen friends I spoke of, who emailed me what her life that same day entailed:

She received a call from the school that her son with special needs attends. He was having a seizure that didn't stop.  They gave him Diastat (emergency seizure stopping drug) and had called 911.  The secretary said the school planned to let them transport her son to Fairfax Hospital if she didn't get there in time.  At that moment she had 4 nearly naked kindergarten girls (two of her daughters and their two friends) that she was getting ready to take to gymnastics.  Inside, she screamed, "NO!!!" The scream wasn't for fear of the seizing from her son - it was because an ambulance transport and subsequent hospital protocol would severely complicate her already complicated life and she could easily manage everything that was happening with her son's health at our "hospital" of choice - home. 
She throws four half-dressed girls in the car and drives like a race car driver to get to the school.  As she pulls in, only 3 of the girls have managed to get in their leotards in the car, the 4th is only wearing a shirt and only 1 of 4 has on shoes.  They all jump out of the car and run in the school - getting into the classroom just as they are about to wheel her son out on the gurney.  She has to use some pretty choice language to explain to the paramedics that she is taking him home and she is NOT following behind the ambulance to the hospital.  This all happened right before dismissal, so the the mix of 3 or 4 fire trucks and ambulances {hello, emergency overkill} are blocking the entrance so that no school buses can get in.  

Now, here is the part of the story you don't want to miss. . .

As she is walking out of the school, wheeling her seizing son and 4 half dressed, frazzled mini-gymnasts, a mom informs her with obvious annoyance that this delay in getting the rest of the kids released is going to make her son late for his Travel Soccer practice.

Hmm, let's break this story down: 

Remember that the special mom just had the hardest day of her life everyday for the past 9 years.  She is trying to be Normal Mom and do her share of the carpool duties (because people think we are normal - and hold us to the same standard of "pulling our weight"), she is trying to help her daughters have a normal childhood and do activities like children their age do.  Then the phone call comes and she has to move like the speed of light to get out the door and to the school all the while worried and stressed about her son's condition.  Based on experience she knows the ambulance and the hospital will only greatly complicate her life and she can manage this at home  {insert: I seriously wish I had a nickel for every time someone told me to call an ambulance when Bridger was seizing - that is just not the necessary protocol every time with these frequently seizing kiddos, and everyone who has one understands.}  She is worried about the embarrassment of her daughters - that they are exposing all of the crazy side of their life to their peers, to whom they just want to appear normal and my friend is also worried that nobody will want to carpool with her after this. Her blood pressure sky rockets to make a convincing and authoritative argument as to why her opinion should trump that of every paramedic there and she be allowed to take him home.  And THEN she gets slammed by the comment by Soccer Mom that she is inconveniencing her life. . .

What do you even say to that?

I want to share all the joy and beauty of this special journey on this blog in addition to the strains of the reality. Because of that, I don't share 95% of the horrific things that are said to me.  Maybe I will do a post some time and let those things all come out - because they hurt.  When I share some of the more poignant "stingers" with friends, they are shocked that people say such things.  We want to believe we live in a society with a higher level of etiquette than we do.  The fact is, people still say the most hurtful and hopelessly unfiltered comments to parents of children with special needs. I hope we can achieve that higher level some day.

Dear Soccer Mom, if you can't say anything nice, don't say anything at all.

November 10, 2014

Party Time

Early on in our special journey, I took some wisdom from Christopher Robin.  Remember when Pooh rescues Piglet from the flood caused by, what Owl calls, the "mild spring zephyr"?  The flood also wipes out Owl's house and Piglet displays incredible selflessness and offers Owl his own house to have.  Christopher Robin knew exactly the way to recognize such acts of valor and sacrifice -- he threw them all a Hero Party.

My little bundle of acorns are constantly displaying just such acts of heroism.  Through each of Bridger's acute frightening health encounters, or sustained periods of difficulty, my little troop has shown compassion, endured and sacrificed.  Consequently, years ago, we started the tradition of Hero Parties that we have after each such challenging time.

Our latest Hero Party took place on Thursday.  We had just endured the health challenges I mentioned in my previous post.  I didn't mention in my previous post, however, the part that they each played.

Bridger's seizure was a scary one - it lasted over 2 hours.  His little face was contorted and his muscles were chomping away at the interior of his mouth, turning it into a pulp.  I couldn't pry into his mouth to keep his teeth from grinding at his flesh and he was gagging on the blood it produced.  While I was on the phone trying to get a hold of the neurologist on call, Evie's job was to hold her brother's head while he was seizing and wipe the blood that was dripping from his mouth.  

What 10 year old girl has that as her after school activity?

The following day the older two girls were at piano lessons and I had to unexpectedly pick them up.  Bridger was still experiencing the "after shocks" of his seizure.  He was still too weak to hold up his head and was vomiting.  I carefully carried him to the back seat of the car and buckled him next to his 5 year old little sister, Eliza.  It was her job to hold his head up and to place the vomit bowl under his face when he would retch and to wipe his mouth with the towel after each vomit.  

What 5 year old little girl has to go on car rides with Mom like that?

My other two children would jump in to cuddle, love, and tend to their brother.  They did extra laundry, cleaned the house, made meals and endured days and days of screaming from their brother without complaint.

Their life experience is all they know, yet I know it is so far from the experience of a typical child their age.  Their actions of the past two weeks definitely called for a Hero Party.

I secured a caregiver for Bridger, threw them in the car and whisked them off to Sweet Frog. . . *cough* for dinner.

I listed to each of them their acts of valor, selflessness, compassion and sacrifice that they displayed in helping their brother, and our family as a whole, thrive during their brother's health challenge of the past couple weeks.

They are my heroes and deserving of every Hero Party we hold in their honor.

It is unnatural, yet amazing - pathetic, yet wonderful to admit that we have a lot of Hero Parties around here.

Thank you, my little heroes!

November 09, 2014

Here We Go

While the rest of Virginia is donning their cozy sweaters, relishing in every colored leaf and crisp breeze of fall and the invigorating feeling that it brings, I am wearing only my machine washables, with my blood pressure rising, right eye starting to twitch and dark sleep circles starting to cast their first tint under my eyes.

Fall should be wonderful.  Fall in Virginia is the closest thing to Heaven.  The hope of Fall is what got us through the icky sticky humidity filled days of July and August here.  Fall is why we live in Virginia.

I used to feel that way.

Fall is now an entirely different season.

It is the season that I begin by taking a deep breath and pushing up my sleeves, and saying, "Here we go!"

It is the season that marks the commencement of this. . .


Vomiting, fevers, worry, extra doctor visits, more insurance work, and hospitalizations - both extended stay and ER visits.  It is the season that will make me sustain days and weeks on end of no more than 3 hours of collective sleep per night and no rest to be found in the daylight hours either.

I am not just talking about your every day flu, strep and hacking cough.  Typical child illnesses are a walk in the park now.  I am speaking of the illnesses that come to a medically fragile child - which take on a whole different life of their own and are not for the faint of heart.

While most people are sipping cider and jumping in piles of leaves, I am making sure we have a bottle of hand-sanitizer in every convenient location, and hunkering down knowing that the storm clouds are brewing.

Unfortunately, the first clouds of "the season" have began to appear in the form of vomiting and fevers - those illnesses require me to be by Bridger's side nearly 24/7.  He doesn't have the instinct to turn his head when he vomits, therefore aspirating it, which leads to pneumonia, which leads to hospitalization.  If he vomits up his seizure medication, he will also not keep the seizures at bay, which will lead to more seizures, which leads to hospitalization.  If he cannot keep Motrin down, he will not be able to control his fever, which will cause more seizures, which will lead to hospitalization.  If he has a hospitalization, it is guaranteed that he will contract a secondary illness, which will lead to further hospitalizations. You catch the trend?  I need to keep him medicated, pumping fluids down his g-tube by 10-20ml at a time in 15-30 minute intervals throughout the day and night.  I *sleep* {not really} with one eye open and ears peeled listening for the sound of retching and run to his aid.  

#1 tip to survive frequent vomiting: Towels are disposable, as can be clothing at times.  That Olaf hat he insisted on wearing as he was sick, laying in my bed surrounded by {disposable} towels and vomit bowl -- well, that was going to be trash too if it had taken a vomit hit.  Glad it didn't come to that.

You want to know the deep, dark secret of this special life? If I happen to fall asleep in the wee hours of the morning and then wake up in the morning and don't hear sounds coming from his room -- I have a sickening pit in my stomach.  Do you know that I am scared every single morning when I have to walk into his room when he hasn't made a sound first?  I am scared at what I will find.  Once you have walked in the room of your child and found them gray, covered in vomit and non-responsive, it is a vision that will never leave your mind and forever leave you nervously ready to encounter that scene again.  Those mornings, I have to take a deep breath and slowly exhale before I go in. Other mornings, I just can't bring myself to face that fear and I send Alan in to check on him first.

That is not a great feeling to wake up to every morning all winter long.

After Bridger's recent week of vomiting and fevers came an exciting few days last week of seizures . . . which also comes with vomiting and fevers. . . and lots of screaming.  Some seizures come with undesirable behaviors for many days prior, and seizures also have a variety of postictal side effects.  For him, they include severe grumpiness (manifest in inconsolable screaming), fevers, vomiting, and, in this case, lots of pain as this seizure caused Bridger's teeth and mouth muscles to make utter ground beef of the interior of his mouth and tongue.  Subsequently, he refused to take anything by mouth for a week and we began the cycle of hydration/daily meds/Motrin/nausea meds/repeat throughout the day and night until until you finally get that precious smile from him that shows you have both weathered the storm.

Nurse Ty stays dutifully by his side
So, if you see me walking around a little dazed and rubbing my temples as you skip through your errands with the bounce of Fall to your step, know that we are experiencing two very different seasons.  Mine is still a beautiful season, however, because I am busy caring for my fragile Little Oak.