The Unseen Disability, and The Hike.

"To believe I walk alone

Is a lie that I’ve been told

So let your heart hold fast

For this soon shall pass

Like the high tide takes the sand

At the bitter end

Salt and liquid blend

From the corner of my eye

All the miles wrecked

Every broken step

Always searching always blind

Never fear, No Never fear

So let your heart hold fast

For this soon shall pass

There's another hill ahead"

--Let Your Heart Hold Fast

Last year, on an overcast but warm afternoon in February, the front door of the Grey House swung open, then closed with more force than usual.  Caleb was home from school.

"Hey buddy, how was the hike?"  I asked.  Today was the 4th grade hike he'd been looking forward to.

"It was HARD.  I'm never going hiking again!"  he replied, with a lot of emotion behind his words.

"What happened?"  I asked, but wasn't too worried.  Caleb is an emotional kid, and sometimes just needs to get the big emotions out by venting, then can see through them a little more clearly.

"It just was hard, and I hated it.  And I'm never going again!"  he repeated, yelling this time.  I asked a couple more questions but he still didn't open up, so I dropped the subject and moved on.  Today was Leah's 6th birthday, and we were going to go out to celebrate.  I asked Caleb to get his homework done and clean his room, then get ready to go to the restaurant.

Normally he would react well to going to his favorite place to eat, it would be a motivator to get him to stay on task and move quickly.  Not today.  His foul mood continued and affected anyone who crossed his path.  He complained with the small things I asked him to do, he purposely looked for ways to bug his sisters, and he wasn't just teasing Leah--he was picking on her and criticizing her.

Each time he did, I stopped him, telling him to change his behavior or earn a consequence.  When he continued, I pulled him aside, reminding him of how he had treated Leah last year on her birthday.  He had been so kind to her, and so thoughtful and fun, and it had meant the world to her.  I asked him to try harder to remember this is the one day a year that's just for her.  I also asked him if anything else was wrong--did something happen with his friends?  Did he do poorly on his spelling test?  Was he tired?  He said "No" to all of these.

In the past when Caleb has treated her this way, we've been able to trace it back to an experience that's recently happened that has made him feel really insecure or embarrassed.  He takes those insecurities out on her until we can get to the root of the problem and talk about what is really bugging him.

"Okay, well  I'm here to talk with you if you want me to.  But if you don't want to that's fine, but we do not deserve to be treated the way you're treating us.  If there isn't anything else wrong then your behavior needs to change.  Now."  I said firmly.

We all got in the van and drove to the restaurant.  While we were being seated, Caleb refused to sit by Leah, saying she always had to sit next to him.  The look on Leah's face was enough, she was devastated.  I gave him the stink eye and told him with a low voice to sit down and knock it off.  He stayed quiet, but inched over to the edge of his chair.

We ordered our food and while waiting for it, began the tradition we have on birthdays, to go around the table and everyone says what they love about the person we're celebrating.  We went around, and then it came time for Caleb's turn.  He gave a half-hearted, generic answer, and wouldn't look at Leah when he said it.  I watched him inch away from her again.  That was IT.

Ben was talking with the girls when I leaned over the table and with my voice two octaves lower than normal said,

"One more thing, Caleb.  If you do or say one more unkind thing to your sister on her birthday, you and I are taking Dad's car and you're going home to bed.  I have been as patient as I can be.  If this weren't her birthday, I would not feel so upset right now.  But she does NOT deserve this and you are not stopping.  When you act this way and can't control it, you're telling me you're too tired and you just need to go to bed."

Then.

He looked at me from across the table, and his face just crumpled.   Tears spilled onto his cheeks and he began to sob.

"Buddy, come here,"  I said with my voice softened.  He walked around the table and stood next to me.  "What is it?  Please tell me, I'm here for you."

And then it all came tumbling out, in between sobs.

"The hike was so hard, Mom.  SO hard.  My legs ached and kept shaking so hard that I kept falling, and my group left me--the only one that stayed with me was the mom of one of the kids, because she felt bad for me.  I was so slow, I could barely make it.  I was the last kid up the mountain.  By the time I got to where we were supposed to eat lunch, everyone was already eating and most of them were finished.  I was so tired and wanted to turn around but I couldn't.  I fell over and over again, even wearing my good shoes.  It was so embarrassing, and I felt so stupid and slow."

My heart broke.  As he cried, I did too.  I hugged him tightly, saying,

"Oh Caleb, I am so sorry and am so glad you told me.  I had no idea.  I don't know why your group didn't stay with you, and I wish they had.  But more than anything?  I am SO proud of you.  So, so proud.  (I could barely speak because I was crying so hard at this point.) The other kids don't know what it feels like to be in your body, with your muscles.  They don't know what it takes for you to make it up that mountain.  But I do, and your dad does.  We know the tightness of your muscles that makes it so much more difficult, and that your legs tremble when they're working hard.  We know how far you've come, and how you have to work twice as hard to keep up with others.

The thing is?  You don't look different.  And while that's a blessing most days, today made things more lonely for you.  If you had crutches, or a wheelchair, or were still wearing the orthotic casts you used to have to wear, people would know, because they would be able to see the difference.  And I'm guessing that if the kids in your group knew, then they would have stayed with you.

But the fact that you didn't quit--that you finished, you got up to the top of that mountain and you made it all the way back down, it proves again to me just how strong you are on the inside, regardless of your body's strength on the outside.  You did it, without the help of anyone.  Just you and God, getting up that mountain together.  

I know today feels like it was an awful day (Caleb nodding his head fiercely), but I have a feeling that you're going to look back on this day as one that was a turning point for you.  One where you can feel proud of not quitting, regardless of how hard it was.  You have yet again made me feel so grateful, and lucky, and blessed, and proud to be YOUR mom."

I held him while he cried for another minute, then calmed down.  The rest of the night he was back to his normal happy self and treated Leah amazing.

Watching his tears fall in the restaurant, I found myself in a strange place as a mother of a kid with an almost unseen disability.  For over two full years, Caleb's disability was obvious.  But once he learned to walk and his seizures stopped, he just kept moving forward.  He's on the small side still, but unless you look closely or know what you're looking for, you can't see his struggle.  Physical therapists spot it right away and ask, but other than that, most are surprised to find out he has Cerebral Palsy.  I have been amazed at how his body has grown, and how he has compensated from his earlier days.  I've been grateful he hasn't had to live life in casts, or with his walker.  But with this hike, I realized I was almost wishing he did look different, and stand out in some way, so others would know and be more sensitive to it.  Then I caught myself--what kind of a mother wishes for their kid to have more challenges than they already do??  

After we were home and the kids were in bed, I told Ben about Caleb's hike.  As I told him, I could feel the Mama Bear in me rising.  I had purposely written on Caleb's consent form for the hike that he has CP--even though his teacher already knew that, I wanted to give her a reminder.  I wrote that he tired easily and had less endurance than the other kids his age.  Why didn't she give him a hiking buddy?  Why wasn't there more supervision over the groups staying together?  Why didn't they start out with the slowest kids in the front, like they do in Boy Scouts?  I wanted to protect him from feeling the way he had that day, but I couldn't--it had already happened.  So getting angry seemed to be the best secondary option.  I wanted to write her an email that night, giving her my very strong opinion of disapproval at the way my son had been treated.

From the time we first knew something was wrong with Caleb, I worried about moments just like this one.  I did not know how I could bear having him hurt, or made fun of, or left behind.  I wanted to protect him from any heartache.  A few years ago, I realized that if I did protect him from all of it, I was holding him back from the opportunity to grow.  I knew the best thing I could do for him was to let him fall and teach him how to get back up, and support him by being there for him, loving him, and teaching him how to love himself.  

I believe every moment--good and bad--is a teaching opportunity when it comes to my kids.  And I know my son.  He was born with a fire in his belly, a big fun personality, and a spirited, competitive side.  He was also born with a body that has set limits on what he can do, so his spirit and his body are in a constant state of battle with each other.  The problem is, he's so competitive with himself that when there is a physical feat standing in his way, he just wants to avoid it all together.  If he can't physically be where he pictures in his mind he should be, or if he's set up to compete one-on-one against someone bigger/stronger, he doesn't want to try.  We have been through this many times.

If he's on a team, he'll go for it because the spotlight isn't on him.  But if he could potentially fail on his own, or look slow or weak--then he digs his feet in and refuses to budge.  Ben and I have had to learn how to navigate this.  We are still learning.  We want to work within his limits and be sensitive to them, while also pushing him to just do the best he can do and not give up.

I didn't send the email.  Instead I decided to sit with all of this for a couple of days and see how I felt after the weekend was over.  The more I thought about this hike, the more important I felt mine and Ben's reaction to it was.  We could either make this a big Victim moment for Caleb, or a big Victory moment.  If I really believed the words I had told him--how proud I was of him, then I wanted to focus on that.  I wanted this hike to be known as a victory.  The Mama Bear inside calmed down, and my anger and protectiveness melted away.  I did want to mention it to his teacher, but more to help her be aware of what had happened, so that maybe they could do things differently for next year.

We've talked about the hike, since that day.  We focus on the getting up part, not the falling.  We focus on the finish line, not the part where he was left by his peers who didn't know what he was experiencing.  We focus on the courage it takes to keep going, one foot in front of the other up the mountain, driven by this God-given gift of his big personality that pushes his tight, but weak muscles to move forward.

And every dang time I talk to him about it, I cry.

I am so grateful I get to be this amazing boy's mom, and watch him learn how to pick himself back up, focus on the victories, and keep going.

catching up with our 3rd grader.

well, let's take a break for a minute from the intense, shall we?  i know i need it.  i have to be in "the zone" to write those emotionally-charged posts, and then i need a rest.

so, onto a-day-in-the-life-business!

the kids have started school.... 

caleb is in third {what?!} grade, loving his teacher who i believe is going to be amazing for him.  he's in a class with a few of his friends and doing fantastic academically and socially.  his hand dexterity is still a little behind--as much as i tell myself at the beginning of each summer that we will keep up on these things, life and having fun always seems to take precedence--so what do i expect?  but he's reading on a 5th and 6th grade level, flying through spelling and math and whatever else they throw at him.  sometimes i think he might get a little bored with it all, {he's expressed it a few times} but it's okay, because he's excelling and feels confident in this area.  much more so than he does physically, which seems to be his constant uphill battle.

today he told me that another kid asked him if he was in kindergarten....i told him to get used to it, because i clearly remember the day a kindergartner came up to me to point out she was taller than me--when i was in the sixth grade. 

he seems to be rolling with the punches now, those that seem to swing at us short folk.  this is a big improvement from the past two years, when these things used to devastate him.  but he seems to be really enjoying the school year so far, and quite possibly gunning for the role of "funny kid."  when i hear the things he says and does at school, sometimes i have to fight from covering my face in my hands because i'm not sure whether to laugh or be completely embarrassed, but i keep my composure.  he's seeming to find his niche, and is really well-liked in school by others--so i say, if he wants to smack himself in the rear and dance around like a fool to make his friends laugh, but he feels confident while doing it, then go for it!

he's back to playing piano, and i've seen again how hard and good this is for him.  his little fingers don't work the way he thinks they should, and he can become easily frustrated.  when i sit down and play with him, we get through it much easier.

we're signing him up for karate this week, and soccer starts in a month.  he is still very weak and seriously stiff, with underdeveloped muscles--although that is improving.  when he's overdone it at school during recess, his legs ache and it's hard for him to walk.  i am so grateful that even though he can be easily physically taxed and worn out, he has so much desire to do it.  i can't imagine what strings we'd have to pull if that desire didn't compel him to keep trying.

he loves spending time with ben or myself one-on-one...whether it's a run to the grocery store, or building legos--he doesn't care.  he just loves the undivided attention, and i can't blame him.  sometimes because he's older and more independent, we assume he's just fine without as much of a need for emotional filling-up from us.  ben and i decided to make a more concerted effort to focus on quality time with him.  

this kid is so lovable.  he is honest and silly, obedient and easily excited, wears his emotions on his sleeve, a complete and true extrovert, and growing up before my very eyes.  i'd love it if he stopped trying to control his little sisters, but realize this is him working out his independence.  we just keep it in check.

favorite books right now:  diary of a wimpy kid series, captain underpants series {where i'm sure he gathers his best one-liners for his comedy routine at school}, the magic treehouse series {he reads them in one day}, how to train your dragon series, and mysteries.

favorite shirts:  star wars, wolverine, angry birds, and anything that looks "tough."

favorite sports:  football and soccer.

favorite tv shows:  teenage mutant ninja turtles, wild kratts, avatar {the cartoon series}

favorite movies:  chicken little, the rise of the guardians, despicable me 1 & 2, the kroogs

favorite ipad game:  clash of clans


here's to another great school year!

swinging and bending, part 5: a friendship with fear.

“I must say a word about fear. It is life's only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unnerving ease. It begins in your mind, always ... so you must fight hard to express it. You must fight hard to shine the light of words upon it. Because if you don't, if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you.” 

― Yann Martel, Life of Pi

Read the first part of this story, here.  
 the second part, here.

 the third part, here.

and the fourth part, here.

after we moved from my parents' basement, ben and i settled into our quiet life in the apartment in spanish fork.  my anxiety as a mother to my son with special needs continued, and fear took on a new form:  isolation.  most of the time i kept to myself, taking long daily walks with caleb during good weather.  i convinced myself it was just my homebody tendencies, but deep down i knew it wasn't true.  this was more than just loving the comforts of my own home, this was creating a life of control, structure and order out of fear and survival.  ben and i went through the motions of church callings, accomplishing what was required, but didn't open up to anyone outside of family and close friends about caleb's struggles and continual demands.

the high maintenance of caleb's care kept me occupied, and when others volunteered to baby-sit for me--even family--i kindly refused.  truthfully, i still couldn't trust anyone except myself and ben to take care of him.  on the rare occasion i said yes, i didn't relax during my time away, tortured with the "what if" questions spinning in my head.  i was a classic "helicopter parent" before i even knew the definition of it.

fear continued to surround me in a storm, becoming my best friend.  it fell like raindrops in every facet of my life, helping me create obsessive control that built a false sense of security.  i didn't know that the frail bubble of fear i had formed to keep my son safe would soon pop, as they usually always do.

caleb had been having minor seizures starting at 10 days old, but when his 31 minute grand mal seizure happened when he was 18 mos old, i was traumatized.  i realize that most mothers would be traumatized, but because i had already been working so closely with fear, letting it trick me into believing i was the one keeping him safe and alive....well, in those terrifying days following the seizure when i was home alone with him, i had to sit in the knowledge that i actually had no control over the situation.  the trauma of having almost two years of built up fake-control and false-sense of security ripped away left me completely vulnerable and alone.  i knew then that my best friend was my worst enemy, and a liar.  the problem was, i didn't know yet how to fight back, combatting the lies with truth, or more importantly, how to leave the relationship with fear.  so, i coped.  i inched through each day, continuing to isolate, praying for God to help me to find a way out.  i see now how He was preparing me to find that way, guiding me to a path that would require extremely hard work.

we were in our apartment for a year when we came to the conclusion that ben was in a dead-end job, and decided to put our life in God's hands.  we prayed and made a list of what we could do to find a career path that would help us not only financially, but also emotionally.

ben knew he would never be satisfied in a cubicle.  more than anything he wanted to help others but was unsure of which path to take.  go back to school?  take another pay cut to start in a field that was severely overworked and underpaid?  so, we set a date, giving ourselves two months of searching every avenue.  we told God that after two months if we were still out of options, we were going pick up our belongings and move to texas, which was where ben's oldest brother and family were living.  we would risk it all for a fresh start.  we picked january 22, 2007 as the day we would make our decision, and got to work.

i began job hunting for ben during the day, sending in resumes everywhere i could.  he continued trying to transfer within his company, letting his boss and co-workers know he was looking for other options. they loved and valued him, but told him their hands were tied.  ben interviewed for several jobs, and looked into higher education, but was only met with dead ends.  as the date crept closer, we prepared ourselves for what seemed the inevitable--moving to texas. we began to get excited about a scary, but fresh start.

on the afternoon of january 22, i sat down to the computer one last time, searching for any other options.  i found an online local newspaper and clicked on the classified section.

and there it was.

goosebumps ran up my arms as i read the job posting for a married couple to become "Family Teachers" in north carolina, managing and running a home filled with teenagers who had been diagnosed with mental and behavioral problems.  tears filled my eyes--not because it was something i wanted to do.  in fact, i felt the opposite, with zero desire to take this position.  but when i read the words and researched the company, the tears filled my eyes because it was one of the very few and far-between moments in my life that i knew without a doubt, it was what we were supposed to do.

when ben arrived home that night, i showed him the job opening and he felt exactly the same way.  we sent in our application and put off the move to texas, knowing we had been led to this very moment in our lives.


it was during this same time that my parents decided to divorce.

cleansed.

there was a time in my life when, admittedly, i did not let myself think ahead to this day.  there was too much fear wrapped around it, and too much unknowing of what the future held in store for him.  it was a milestone like watching a first step being taken, and giving a kiss and a wave as i watched him march toward kindergarten, and seeing the gap in his smile after losing a first tooth, and all of those moments in between and after that i could not mentally or emotionally let myself believe would come to my fragile and sick baby, just in case they didn't.

but eight years later, just like those other milestones, this one came.  and we were surrounded with love, tears, and another glimpse of God demonstrating to us again just how special this boy is, because He was in the moments that made the day so beautiful.

God was there in the quiet silence and then swish of the water as it enveloped caleb's small body,  He was there in the hugs between a boy and his two parents as he dried off and dressed in his new suit and tie, and He was there in the confirmation blessing given by this boy's father, with words to bestow upon him a Gift, and to remind caleb again of his strength to not only overcome, but to be made a leader for good and holy purposes, if he chose it.  He was there in the song softly sung by caleb's little sister and grandma,  testifying of the piece of divinity that lies within him, the thread that can never be broken, because he is a Child of God.  He was there in the tears in caleb's grandpa's eyes and the promises spoken by the primary president and member of the bishopric.  He was there in the presence and hugs of loved ones who came from near and far to be there for this milestone.

 and God was there in another piece of this mother's healed heart.

these moments used to be stolen from me by fear, consumed with apprehension and what if's, but they no longer are.  as i watched my son reach the milestone of getting baptized, that fear was again replaced with intense gratitude and a love so remarkable that i felt as if i was being washed over with it from head to toe.


when caleb was cleansed, so again, was i.


it was a beautiful day.

 

swinging and bending, part 4: the breaking.

{image found here.}

Read the first part of this story, 
here.  

and the second part,
here.

and the third part,

here.

Round and around and around we go...

The reason I hold on

'Cause I need this hole gone.

Funny, you're the broken one,

But I'm the only one who needed

Saving.

--"Stay"

Rihanna

i was 24 years old when caleb was born.

we brought him home, and i remember immediately feeling protective.  at 4 lbs, 9 oz, he could only eat from a syringe with a small tube hanging from it, guided into his mouth by either mine or ben's pinky finger.  he struggled in almost every area--sleeping, eating, pooping, gaining weight, and mostly, in being content.

his screaming began at around 10 days old and was followed quickly by his seizures.  with his screaming, something inside of me broke--the dream of having the happy, fat, cooing child.  idealistic hope was gone and replaced with desperation.  i quickly turned into the mother i had previously judged and scorned; ignoring all of the books i had read, i resorted to doing whatever it took to silence his cries.

when the seizures were finally diagnosed at 2 1/2 months, another piece inside of me broke.  the piece that knew what faith meant.  i became a mother full of fear, and without knowing it, began to believe that i was singlehandedly keeping this tiny, sick boy alive.

ben was an amazing father and i knew he loved caleb deeply, but seemed to have a more casual attitude toward the instructions we were repeatedly given about his care by specialists.  his mantra of "oh, he'll be fine" terrified me, because it meant i was out in this scary world alone with a special-needs baby.  his actions deepened the fear.  we would talk about how we were going to handle big family situations with caleb, and i was in sync with what the doctors were telling us, to be extremely cautious.  ben would say he felt the same, then change his mind when we actually got in the situation.  i couldn't understand what was going on, and internalized it as somehow my fault.  that he thought i was too crazy, or overprotective, but didn't want to tell me.  so i tried to stuff down the confusion and distrust, not realizing it manifested itself as more fear.  even though there were others around supporting me...i felt i was the only one truly bearing this burden.  i became a control freak, fueled by anxiety and "what if's" that would run through my head all hours of the day and night.

ben and i have talked about this point in our lives many times, and how it was a crossroads for us.  up until then, we had been a strong team, weathering the outside storms between extended family together.  now the rain began to pour inside of our safe place, the winds carrying me to one side and ben to the opposite.

"i felt like i lost my wife,"  he has said.

"i felt like the carefree, worry-free, easily happy person i was--died.  and, i felt like i could no longer trust you to be honest with me, because you didn't want to hurt me,"  i have said.

so, there was that.

we had hoped that having caleb would help bring about a merger to the sides of family who were still contending, and maybe he did.  but it seemed like more of a cold war began, where no one really spoke to each other at family events, just passing icy smiles and nervous glances.  i was so focused on dealing with caleb, that i stopped noticing.

we lived in the basement apartment of my parents' home until caleb was 10 months old.  they had a marriage that had been full of ups and downs.  when things were good between them, they were great.  but during the time we were living there, signs pointed toward them taking a turn for the worse.

i had been witness to this for many years and had grown somewhat of a callous skin to it, but after living in a peaceful, virtually contention-free marriage for 2 years, the understanding of just how unhealthy things were became glaringly acute.  i grew up only knowing this as my only perspective on marriage, and thought it was normal.  i now knew it was not.

this was ben's first time to have a front row seat to some difficult moments.  because he loved them both, and he could not change or help their situation, this began to take its toll on him.  i could see him beginning to separate from them, requesting more space and a clarity on boundaries to define "our own family time." i could understand his desire, but because i had slipped back into my family role as buffer and peacemaker, i didn't see these new boundaries as necessary.  i felt needed, and worth more when i played this role.  boundaries and separation took that from me.  i wavered when it came to upholding them, continually giving excuses for this justification or that. but the truth is, i didn't know how to say no without feeling guilty, and i didn't know how to feel good about myself unless i was acting the part of the "good girl" that i had played for so long.

however, i did have my eyes opened as an adult viewing my parents as an adult.  even though i was still young in married life and motherhood, i began to see them as equals.

during the year we were there, i saw a cycle in their relationship that scared me, because it resonated inside as patterns of my own. enabling one's anger by allowing mistreatment, at the sake of "doing whatever it took" to make another happy.  then, because of fearing the anger or huge emotional reaction, becoming passive aggressive and covertive, using small twists of reality to portray a situation so it would be easier for another to accept.  using self-lies to justify these twists, that the intent behind doing it is to really "help another."  then the lies would be caught, and the reaction was so harsh and forceful that it caused it all to begin again.  i wasn't doing this in my own marriage, but could see glimpses of where i had done it in other relationships, past and present.

i distinctly remember having one specific conversation in that basement.

"why are you allowing this?"  i asked.

"because, when the time comes for me to die, i want to be able to look my Father in Heaven in the eyes and tell him i did everything i could.  that even if it meant taking the aftermath of the anger i didn't deserve, and staying and loving and trying, never giving up--no matter what--that He will tell me i did a good job."

"but," i replied, "i feel like you're just the pillow, catching another's fall.  which is great for the one falling, to have something soft to land on.  but what happens to the pillow?  it's flattened, with all of its feathers slammed out of it.  misshapen and crunched.  why would God want you to sacrifice yourself for another, at the risk of your own demise?  i understand selflessness in a relationship, but not to this extent.  why are they worth better treatment than you're worth?  that just doesn't sit right with me.  what is Jesus for, then?  what is His sacrifice for?  He took this, so that we wouldn't have to.  He is the pillow, not you.  He is the Savior, not you.  but if you continually put yourself in His place, then the one falling will never have to learn to rely on Him to catch their fall, if they can always rely on you.  meanwhile, you're breaking apart here.  i can see it.  i have seen it, for years.  and when you say 'no matter what,' do you really mean that? do you know what you're saying?  what if things get worse?  do you have any limits, any boundaries?  will there be anything that will cause you to say to yourself 'I deserve better' and demand for it to stop?"

that night, somewhere deep down, i was also speaking to myself.  

i could see the damage they had caused each other through the years.  i could also see myself in these things, through them.  the problems in my past relationships became obvious, recognizing the enabling and savior role i had accepted either to change the other or in an attempt to feel some sort of self worth.

in my marriage it was still difficult to detect because both of us had the same unhealthy piece of wanting to be the pleaser, instead of one extreme and another.  when we talk about it now, we can see it inside of the situations surrounding caleb.  neither ben nor myself had been completely honest, stuffing down uncomfortable emotions so we wouldn't have to have uncomfortable conversations.  our dishonesty, though small and unintentional,  caused a resentment to form that took years to understand and undo.

what was finally clear during that year in the basement apartment, was where i had learned and formed this unhealthy, codependent, enabling part.  i had been watching it unfold in front of me for my entire life.

luckily, ben and i still loved being together.  we both pushed our uncomfortable feelings aside, and tried our best to enjoy what we could of being a young family under stressful situations.  we celebrated the milestones caleb would make, breathed an enormous breath of fresh air as his continual crying finally began to cease when he was around 5 months old, and found our new normal creating happiness within the reality of life with our difficult, but miraculous baby.  in many ways, our love strengthened during that time.

ben was hired at a new job about 2 hours south, and we decided to take it.  by this point, we were waist-deep into appointments with specialists and physical therapists and developmental pediatricians for caleb.  my life was consumed with him.  and because of the fear that had taken on full force, i rarely trusted him with anyone besides myself and ben.  when i was around, sure.  but leaving him?  no way.  i had told myself i wouldn't be able to forgive myself if something happened to him, and since no one really knew how to take care of him the way i did, if something happened when i left him to--heaven forbid--go on a date with my husband, that would also be unforgivable.

as the breaking inside continued, i clung more tightly to the only thing that was becoming familiar to me:

fear.

learning to ride.

Well I started out down a dirty road

Started out all alone

And the sun went down as I crossed the hill

And the town lit up, the world got still

I'm learning to fly, but I ain't got wings

Coming down is the hardest thing.

yesterday had an unusual moment in it.  a moment where ben and i were able to look at each other over a blonde, fuzzy little head of hair and know that we did something right as parents.

we've been working with caleb on riding his bike for over a year now, and it has been a battle of both physical and emotional wills.  ben has taken the brunt of these, because he's been the main trainer, though i've gone out a handful of times with him.

one of the hardest things i've found being a mother--especially caleb's mother--is knowing when to push, and when to ease up.  teaching a child with disabilities has tested ben and i, at times causing tension between us.  we've been forced to look inwardly most often, humbling ourselves to see what is ours, and what is his.

ben is the pusher; coming from a place of wanting his only son to know he can do anything he puts his mind to.  i am more cautious; concerned that if we push too hard, we will not only break his fragile body but his fragile self-confidence along with it.  there have been countless conversations, going back and forth about crying it out as a baby, nursery at 18 months, bedtimes, half-day kindergarten, diet, tying his shoes, physical therapy, which sports to sign him up for, and many others.  we start out the same way; stubborn, both believing we are doing what is right and best while believing the other has no clue.  sitting on opposite sides of the see-saw, going up and down as the conversation begins.

where we end is what is most important.

sometimes the resolution is found after a few minutes....sometimes it's found after more than a few minutes, and it only comes when our fears are laid to rest.  ben letting go of his fear of caleb always being viewed as smaller, weaker and incapable.  me letting go of my fear that i am not protecting the child who actually was born smaller, weaker and less capable.

we have to work within caleb's limits, his reality.  a place without the fear and insecurities of his parents.  it isn't easy to find this reality, though it sounds like it should be.  luckily we're finding it much faster than we used to, working together instead of against each other.

when it came to teaching him to ride a bike, we assumed it would be more simple than it's been.  we have heard friends tell us of their own children, self-taught without training wheels, who just take off and never look back.  we knew it wouldn't be this easy with our boy, the boy who needs us to break each thing down for him into small pieces.  the whole package overwhelms him physically, which causes his emotions to spike and creates mental barriers.  and once those mental barriers are set, heaven help us all... caleb has a really difficult time breaking through.

we pushed too hard, initially, and caleb's fears of failure came to the forefront of our teaching.  it became a mental game, full of motivational techniques and a lot of affirmations.  we scaled back the pushing, but kept trying.  the focus of our family walks became less relaxing, and instead were filled with his cries of resistance.  we would turn another corner, me pulling the wagon with the two girls, ben jogging alongside caleb as he yelled and sobbed and tried to convince us to turn around.  after each walk, ben and i would re-evaluate.  is this too much?

a couple of months ago, we decided the bike was working against him--even though it was practically brand new, it was from walmart and we realized while watching him that his legs just didn't have the strength to pedal for long periods of time with it.  so we took him to an actual bike store and bought a legit one, after watching him test it, pedaling with ease.

we took him out that day, crossing our fingers that this new bike would help build his confidence and ease his physical burden.  and it did, but the mental barriers were still there.  so each sunday night we went back out on our family walks, disrupting peaceful neighborhoods with his bouts of frustration.  ben would tell him affirmations he needed to say, and as the girls and i would notice the flowers and stray animals crossing the road in front of us, i could hear caleb behind us, yelling these affirmations through his tears.

"I CAN DO THIS!"

"I'M DOING A GREAT JOB!"

"I'M TRYING MY HARDEST!"

as we would end each walk, caleb would completely melt down.  one specific time, ben let caleb release all of his frustration on him, giving him permission to scream and yell and even punch him.  i was in the kitchen making spaghetti when i heard what sounded like a mini-exorcism take place, with guttural yells and tiny fists hitting against a father's chest.  after he had let it out, all that followed were the sobs of a 7-yr-old and ben's soft words of praise for his son and his hard work.  i peeked around the corner to see ben holding caleb in his arms as he cried.

i'll admit, there have been times when i've felt a little hopeless because it looked like we weren't making much progress.  we both knew caleb was capable of this, we knew what we were pushing him for wasn't because of our deep-down insecurities to have a son who couldn't ride a bike.  but fighting these emotional battles with him each time made me weary, wondering when {or if} we would see the day that he believed in himself enough for him to push physically to accomplish it.

last night as i stepped into my walking shoes, i felt dread.  i admitted this to ben, silently mouthing over caleb's head "i don't think this is a good idea tonight," because i was not in the mood to have what had been a mostly-pleasant and peaceful sunday interrupted again with yelling and frustration.  caleb clearly did not want to go, whining and pleading before strapping on his helmet.  but ben held firm, so the rest of us got ready.

before starting off, ben gave him some affirmations and i motivated him with the green gatorade he'd been asking for, telling him it was his if he could work as hard as he could with a good attitude.

i began walking, going ahead with the girls around the cul-de-sac and nearing the park.  normally within a minute or two i would hear caleb approaching me with his yelling about how he was going to fall or run into the curb.  but this time, there was silence.  i kept going, assuming they had gone the opposite way down the street and we would meet in the middle.  after passing the park and rounding the corner of another block, i heard them.  but instead of crying and frustration, i heard ben's encouraging shouts.

"KEEP GOING, BUDDY!"

"YOU'RE DOING AWESOME!"

then suddenly, zoom!  caleb passed us on the left, yelling an excited, "HI, MOM!" with a smile on his face.  i watched him pass, widening my eyes, looking at ben jog next to him.  he smiled at me too as they kept going down the street.  they circled back around, and i took pictures, feeling warmth hit my toes and work its way up and over my body, knowing tears would soon fill my eyes.

as i watched him go, tom petty's "learning to fly" came to my mind, and has been stuck in my head all day today.

when we got home, there were no screams and fists, only hugs and congratulations.  ben pulled me aside as caleb chugged down his green gatorade.  he told me that caleb started saying his own affirmations as he pedaled, and ben said when caleb yelled the words, "THIS IS THE BEST DAY EVER!" he had to hold back his own tears.

this parenting stuff is hard work, full of constant re-evaluations and prioritizing and checking our egos at the front door.  most of the time i have to fight the feeling that what i do here is mundane and meaningless.  i know it's not, but it's easy for me to get caught up in trying to find the meaning in the daily little things, fighting feelings of discouragement.

but sometimes we see rewards like the one we saw last night, and it reminds us to keep going, to not stop trying.  that what we're doing is making a difference for the better, helping a little person build self-confidence and overcome a challenge that would have been so much easier to just give up on.

i'm glad we didn't give up.

to my second grader.

{oh, i love you bloggy friends.  you gave me some great ideas/advice about bedtime.  we've been trying some of them....and things are easing up just a little.  thank you thank you!  i'll share the details when the outcome is a little more consistent. } 


and now, a letter to my son.



“You know that place between sleep and awake, the place where you can still remember dreaming? That’s where I’ll always love you. That’s where I’ll be waiting.” 
― J.M. Barrie, Peter Pan

Dear Caleb,

I didn't want to start this letter out with a downer, but I want to be honest because I know you'll read this someday, and one of the rules of our house is to be honest--with kindness.  The 6 and 7 year old years have been extremely bittersweet for me.  I think it's an in-between age, where you're not a little boy anymore, but you're also not a big kid yet.  You seem to be crawling out of your skin, wanting more, and I find myself sad that part of the little boy who adored his mom and dad, when we were all you needed, is growing up.  I know it's supposed to happen, and is a good thing, it's just that change like this has been harder for me than I expected it would be.

Up until this point, I've been the mom who doesn't mind when her babies grow and change and turn into toddlers like most moms do.  Watching puffy feet and rolling thighs turn into thinner, stronger, running legs.  I've loved each new stage even when it meant saying good-bye to the last one because it's replaced with more things to love.  I've tried to revel in all of your moments so that I didn't feel as if they had passed me by too quickly.  So this sadness of watching you become a big kid, knowing what it means you are leaving, has snuck up behind me and taken me by surprise.

I've watched your imagination go, where your old toys no longer satisfy you the way they once did.  You have always been an old soul, with an understanding and maturity that can sometimes shock me, so much that I often have to remind myself that you're still so young.  You want to know exactly the way things work, but you are no longer believing in things that keep childhood magical and alive.  Like when you came to me, telling me that the Tooth Fairy isn't real, and when I asked you why you felt that way {assuming you would say that one of your friends told you}, you informed me that you knew she wasn't real because fairies aren't real, so obviously she isn't.  And I said that if you felt that way, I understood.  It made sense.  But that you could either believe, and see what happened when you lost a tooth, and see if something showed up under your pillow... or you could choose not to believe, and I'm sure you would be right-- nothing would happen.

You walked away, only mildly satisfied with my answer because I would neither confirm nor deny your suspicions.  Unfortunately you have yet to lose a tooth {which has been driving you bonkers for the past 8 months to a year now, and has become quite the hot topic at our dinner table}, but when you do, I'm curious to see what you will choose.  

I hope you choose to believe.

Childhood only lasts for so long and in my opinion, not long enough.  You had to go through something this year that has taken a piece of that, and your dad and I had to figure out how to balance the situation.  It wasn't easy.  You were brave though, and we were so absolutely proud of you.  I wondered what other situations were going to come to you to challenge your soft heart. I say a prayer every night that you are able to overcome whatever is given to you, and that I have the strength as your mom to help you through these things in a way that will shape you to become a man who will use these trials as a piece to build your foundation so that they bear you up with courage instead of tear you down with fear.

You have such a strong spirit, Caleb.  Your competitive side has pushed your body physically to run all of the Fun Runs, no matter how difficult they have been.  At recess you choose to play football, and basketball, and wall ball, instead of do the less-physical things some of your friends choose to do, even when the physical games are so much harder for you.  I absolutely love this about you, and want you to love it about yourself.  You know your limitations, but you're constantly challenging them.  I'll always encourage you to do this.

A couple of my favorite ways to spend time with you lately are playing baseball with you {you are seriously awesome at it}, or on Sunday evenings when we play Monopoly just before dinner.  You are hilarious to watch!  We've played it probably 6 times now, but you've memorized all of the prices of all of the properties and how much they charge in rent when you land on them.  You've won almost every time we've played and get so full of yourself, it cracks your dad and I up.  

But my most favorite thing to do is read C.S. Lewis with you at night.  You lay on my shoulder and wrap your arms around mine, and we get nervous during upcoming battles and excited at the latest adventures.  You are my little boy again, when we read together.  There is nothing else except you and me during that time.  

I love that you still love to be around me, asking if we can hang out, just you and me "without the kids" as you put it.  And when I had to remind you that you are, in fact, a kid, your reply was so typical-Caleb, a shrug of your shoulders as you whispered so your sisters couldn't hear you "you know what I mean, Mom."

For this year, my wish is that you hold on just a little bit longer to childhood.  As much as you want to be an adult, I promise that it's not all it's cracked up to be.  Much less-fun than it looks to you right now.  So hang on, if you can.  Just until I get used to the idea, please?  I promise to be more ready to face it.

Know how much I love you, how much I adore your little face.  Your dimples, your olive eyes, your dark lashes.  You are an amazing boy who will take on the world someday.  Thank you for all you show me, for making growing up as easy on me as it can be because you are such a joy to be with every day.


Love,
Mom

raising a child with special needs.

here's a video ben and i recorded for my work,
talking about some of our thoughts and struggles while raising caleb.

there were so many extremely difficult moments during those first few years,
and so many rewarding moments. it's something i've written about many times,
but for some reason when i talk about it, vivid memories come flooding back to me.

i know there are many others out there, several of my own friends,
who have children who are struggling.  whether it's physically,
behaviorally or emotionally, it's something that can be hard to face as a parent.

personally, being a mother to caleb has been a journey.  i fought bitterness for a long time,
feeling like i somehow missed out on the motherhood that all of my friends and family had talked about.  i felt overprotective and worried that others thought i was crazy at times,
but i also knew that i was the only one who knew my son.  i tried to find a balance between
treating him like he was different....and treating him the way ne needed because i knew that he actually is different.

i'm still working on that balance, and so is ben.  we try to put our own fears aside
when making decisions about caleb.  i push away my worry about the past,
ben pushes away his fear of the future.  and we do our best to live in the present, and the
reality of what caleb is facing now.

being a parent isn't easy, and being a parent of a special needs child is even less easy.

but there is nothing like the bond that i have with him, and like i say in the video,
i wouldn't trade one moment that i've had with him.

learning to love holland.

my fantastic friend, meggan, emailed this to me a long time ago.

i've been writing how i feel about it, but haven't gotten my jumbled thoughts just right about it yet.  about how my "trip to holland" brought out anxiety, and fear, and stress.  how i have been working extremely hard the past year and a half to try to quiet that anxiety and let go.

i will finish writing my experience, because i think it's important.  not just for me, but for other moms who have had a child with disabilities or extreme health problems that has brought out anxiety in them, because the letting go process has helped me enjoy being caleb's mother so much more than the anxiety did.  the anxiety was a false sense of security that kept me wound up tightly, hyper-alert, taking away my ability to truly enjoy.

anyway, my piece will come.  but until it does, read this.  even if you haven't ever had a child with special needs, read between the lines and apply it to other situations in your life.  whether it's becoming a parent, or a marriage that takes a turn, or a job that wasn't what you thought it would be, an unexpected death, or even that your life just isn't what you hoped.  where you went into something expecting one thing, but finding another.  there is the need to grieve the loss of certain things in life, and that's okay.  

i've learned that once i've recognized and acknowledged the loss and grieved it, the most important part is releasing it.  seeing the blessings that are there, in any situation. 

appreciating the tulips.









WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.