O, Christmas Tree

For whatever reason, kiddo has really taken to the season of Advent.  Frankly, his interest tickles me because it's also my favorite time of year.  You can say whatever you like about the actual day of Christmas, but it's the waiting...the wondering...that anticipation of what is yet to come that has always interested me.  I find myself more introspective, more thoughtful, more curious and more patient during this time of the year than any other.  So it’s very sweet to me to hear kiddo asking to participate in this liturgical season, with the traditions we have chosen to carry into our home.

For many years, I’ve kept an Advent wreath and calendar, going through the devotions for myself because kiddo was too little to understand or not interested in participating; however, that started to change last year.  During his time in our church’s worship center (for kiddos in pre-school through 2^nd grade, while the adults are still in worship), he began to show a lot of interest in the story, the journey and the process of the season leading up to Christmas.

When he was still in the NICU seven years ago, we didn’t know if we’d be celebrating Christmas at home or with him in-patient.  That was a tough pill to swallow.  Halloween hadn’t been too bad to spend in the hospital.  I mean, really -- he was only about six weeks old and wouldn’t have been trick-or-treating anyway.  But after getting news on Thanksgiving Eve that he had developed GERD and was aspirating my breast milk into his lungs, we started feeling bleak about his prospects of coming home before Christmas.  Yeah, I know it’s another day on the calendar…but the thought of spending all of Advent, Christmas AND New Year’s Eve/Day in the hospital was almost more than we could bear.

So, to try to add some sense of normalcy to the daily grind of being in the NICU, I looked for an Advent calendar to put by his crib.  Hospitals have lots of rules and regulations about what can and can’t be put in a patient’s room, and those seemed to quadruple when it came to what could reside in the NICU.  Of course we didn’t want to bring in anything that could carry/spread germs because he was in a nursery with six other kiddos who were also fighting for their lives; the stakes were far too high.

Thank goodness for my mom.  She found the cutest little wooden tree that was okayed to occupy a spot on the counter right by kiddo’s crib.  It had twenty-four hooks on it, and sat on a pedestal with little presents around the base.  Within the base, there were the same number of drawers; each holding an ornament to hang on the tree.  The best part, though, was that the tree was battery-operated so it spun around, the star at the top blinked on and off, and it played Christmas carols any time one of the drawers was opened.

You should have seen kiddo’s face light up in wonder when we showed it to him.  The nurses loved it, and we’d often find it with run-down batteries because someone had left it on too long since it was just so dang cute!  The joy that little tree spread around the NICU was fantastic, and we were glad we were able to share that with the other families who were facing similar, long-term challenges and the uncertainty of their length of stay.

As the days continued to pass, I wondered when our precious kiddo would come home.  I prayed that God would let us bring him home before Christmas.  And, after a necessary surgery early in December, kiddo’s prognosis started looking brighter.  He was off oxygen for a short time, and his stats continued to improve.  I was cautious, though – I didn’t want to get my hopes up only to have them squashed.  I remember looking at the calendar that day and starting to count back how many days he had been in the NICU.  I couldn’t believe it had been ninety days.  Really?!  That number seemed unbelievable!

I remember praying that night – begging God, really – saying, “Please don’t let us get to one hundred days, God.  I can’t do triple digits.  I don’t know how I’m going to handle this.  Please, please, let him heal and come home!”  After all, his due date had been December 10^th, and we had been told many NICU babies are well enough to be released by their original due date.  That wasn’t a promise, though – just a hope that we wanted to materialize.

When I got the call on December 11^th from our primary nurse that the doctors had determined kiddo was meeting the goals necessary for his release, and that we should get ready to take him by the weekend, I remember saying to her, “Are you serious?!  I can’t handle it if you’re f*cking with me!”  (Side note:  that nurse was worth her weight in platinum.  She knew how tough it was for me that kiddo was still in-patient on his due date and had been of great comfort to me throughout his stay.  She also had a wonderful sense of humor and rolled with my mood swings like a pro.)  She laughed at my words and replied, “How soon can you take the CPR, oxygen and monitor training you need?  Your kiddo’s coming home!”

I quickly scheduled our necessary trainings, called my husband to share the good news (my parents were at my home that morning when I got the phone call) and then we all burst into tears of joy.  I couldn’t wait to go in that day and add another ornament to our little Advent tree.

As it turned out, kiddo was released on December 15^th that year…exactly ninety-eight days after he had entered the world.  Somehow, we managed to avoid the triple-digits milestone I’d been dreading, and we were able to bring him home where he belonged.

Of course, that little Christmas tree came home with us, too.  I had thought about leaving it at the hospital, but there was too much uncertainty as to whether or not it could be used by anyone else; I hated the thought that it could be thrown out after spreading so much joy, so it was an easy decision to pack it up and bring it with us.

That first night we were home, I put kiddo in his sleeper and we all sat on the sofa together as a family.  The lights from our full-sized Christmas tree were the only things illuminating the room, and there was some soft Christmas music playing in the background.  It was a magical moment – quiet, thoughtful, joyous, and emotional – as I realized that I’d been given the best gift I could ever imagine.  It didn’t matter to me if I never received another present in my life – I had everything I ever wanted in that moment.

As it happened, the ornament I hung on the tree that day was a little present.  To this day, I always put that present in the box that has the number fifteen on it as a reminder of the incredible gift we received.  Last year, kiddo asked me why I put the present in it, and I told him the story of the day he came home from the hospital.

Last night, when we were getting ready to put all of the ornaments in the numbered boxes, he remembered, “The star goes in the first one, because we top the tree to start; Santa goes in the last one because he comes on Christmas Eve.  Oh, and there’s the gift, Mom.  That one goes in the one with the fifteen.”  I asked him why he thought that and he said, “Because that’s the day you brought me home from the hospital.  You said I was your best gift ever.”

I had no idea he had remembered me telling him that story.  Indeed, little one…you are the best gift.  Ever!

Once Upon a Time

I just finished another application for a grant to help with the expenses of kiddo’s therapies.  Since the deadline is tomorrow, and we’ve all had the crud for the past week or so, it took me until this afternoon to complete the paperwork.  Of course, I still have to deliver it tomorrow afternoon on my way home from teaching, but that just means I’ll know it arrived safely at the intended destination.  So, while I’m breathing a sigh of relief now that it’s finished (minus the delivery part), I’m also feeling pretty vulnerable.

For years, I’ve dreamed of being a successful writer, penning the ultimate must-have read that’s too engaging to put down.  Instead, I’ve found myself writing narratives about my experiences as a parent of a micro-preemie and the territory we have to navigate to get help with his special needs.  It’s personal…really personal.  And, just like the questions on the application, that’s what makes it so scary. 

One of the questions I answered had to do with kiddo’s history and why he’s a good candidate for the scholarship; another required me to track the therapies he currently receives, and indicate how they are paid for; and yet another had to do with the financial circumstances his health challenges have brought to us and why we’re requesting the assistance in the first place.

Each of these is difficult enough to answer individually, requiring a balance of medical terminology, historical documentation and emotional content; the combination makes for a rather daunting task because I have to go there…back through the details and memories and emotions all tied to the history of our tiny miracle and how his early arrival has shaped our experience.  Most of it hasn’t been pretty, so dredging through it on a regular basis has become quite the emotional exercise.

And, just like this spring, when I applied for this scholarship for the first time, I’m left with an almost-sick-to-my-stomach feeling after sealing the envelope containing the paperwork.  I just poured out my heart on paper (tempered with factual information, of course), for a bunch of strangers who will decide if our situation meets the guidelines for the scholarship.  This is hardly the type of writing I envisioned when I dreamed of being an author.

There are so many questions running around in my head right now:  Did I provide enough information without being verbose?  Is the balance of information good?  Should I have shared more about how tough these past seven years have been, or would that make us sound desperate?  Hell – we feel desperate, so is it okay to say so?  How many other families in need are also submitting for this round of scholarships?  Do we even have a chance at getting this scholarship since we received one six months ago?

For a while, these questions will remain unanswered.  I’ll find out in a month or so whether we’ve made it through the preliminary screening; if so, there will be more information to provide and more writing to do.  At least I have the benefit of having been through this once before, so I know what to expect in terms of the paperwork.  But that still doesn’t take the edge off the emotional component.

So, for now, I’m going to put the tea kettle on and sit quietly for a bit before bed.  I’m giving myself permission to let the tears roll as I let go of the emotional piece that is always a part of writing for these applications.  I know I’ll feel better in a little while, and be able to call my efforts complete.  And, no matter the outcome, I know the energy and effort was worth it because it has to do with our precious kiddo.  I’m just trying to help us find our Happily Ever After…

Wonder Twin Powers - Activate!

Have I mentioned previously that I have super powers?  Yes, it’s true.  Somehow, since becoming a mother, all of my senses have become heightened in a manner previously unknown to me.  Not a day has gone by without some kiddo-related situation setting off my mommy radar.

Initially, my powers included exciting discoveries like being able to smell a dirty diaper from three rooms away.  (I think hubby played on this skill of mine intentionally, because he couldn’t seem to smell it when it was right under his nose!)  I also knew when kiddo was napping or awake, and could always tell what each cry meant as soon as I heard it.

As kiddo grew, my powers progressed to knowing when he was headed into mischief in time to scoop him up out of harm’s way, fixing broken book spines and toys with a little tape and a lot of love, and knowing when “nap time” had turned into a play free-for-all.

And, as he has gotten older, my super powers seem keen on sensing when he is doing something he shouldn’t be doing, when he knows he shouldn’t be doing it – again, usually from three rooms away.  On more occasions than I can count, I’ve said (from another room), “Don’t even think about it!” only to hear a surprised kiddo reply, “Geez, Mom – how did you know what I was going to do?!”  The first time we had this exchange, I responded with “Because I have super powers.  All mommies do.”  Why those words tumbled out of my mouth is still a mystery to me (it was probably related to sleep-deprivation), but they stuck.

(Side note:  Lest you think I’m sexist, I want to recognize that dads have super powers, too.  One of the next questions out of kiddo’s mouth was, “Do daddies have them, too?”  I replied with something like, “Of course they do.  They just have different ones than mommies.”  Gotta keep us on an even playing field, you know?)

On occasion, kiddo has turned the tables on me with this phrase.  The other day, he had a math worksheet sent home from school that included some new tasks he’d accomplished.  I asked him how he worked through it without help.  He replied, with a wink and his signature giggle, “Super powers!”  Gosh, I love it when he’s brilliant like that!

Lately, however, my super powers have been lacking.  The whole family has been clearing whatever cold/sinus thing is going around, so my bloodhound-esque nose and bat-like radar have been on the fritz.  There have been a number of occasions lately where kiddo hasn’t felt well and I’ve misread his discomfort for belligerence.  Another time, a favorite toy got jammed inside another toy (don’t ask – kiddo has always had the ability to fit a square peg in a round hole!) and it took grandma’s help to get them separated again.  Nothing major, mind you – but enough of a blip in my abilities that kiddo was starting to doubt them.  Me, too…until today.

When he got home from school, kiddo told me that one of his favorite CDs is scratched and that’s causing it to skip in the player.  (He’s very sensitive to unusual noises, so something like this becomes a major annoyance to his sensitive system.)  He wondered if I knew how to fix it.  Ah, geez – nothing like hitting a gal when she’s down!

Thank God for Google!  (It’s saved my ass on more than one occasion.)  According to one of the “geek” sites I found, CD scratches can be minimized by rubbing a little toothpaste on the CD.  I figured we had nothing to lose, so I gave it a shot.

After rinsing and gently drying the disc, I put a little Tom’s of Maine on a Q-tip and rubbed the scratch gently, in a circular motion.  (Just so you know, the site said gel toothpaste won’t work; it needs to have a mild abrasive in it.)  I rinsed it off and dried it again, thinking the scratch didn’t look all that different.  But when we put the disc in the player, the skipping was totally gone!  Score!

As kiddo and I were listening to the CD, his smile just grew and grew.  I told him it was a pretty cool trick to remember and I’d put it on my list of super powers.  He gave me a high-five and proclaimed, “Yeah, Mom – you’re a rock star!”

Temporary Sabbatical

Thanks to those of you who have checked in with me about my absence from the blogosphere.  I want to assure you everything is fine; I’ve just had plenty to handle, and not much steam left over for writing the past few weeks.

In looking at my white board (which should be called a neon board at this point; you should see the amount of colored writing on my “to do” list right now!), I thought I’d outline some of what I balance on a regular basis.  Here are the categories, as they present to me:

1.  School

Like most kiddos, mine headed back to school right after Labor Day.  While the initial freedom of having him out of the house for a few hours each morning was intoxicating, I knew it would fade as he started running into challenges and the phone started ringing.  Sure enough – that happened at the beginning of week number three.  At that point, the honey was definitely off the moon.

After navigating IEPs for the past few years, I’m used to how to work with the staff members when these phone calls happen, usually beginning with checking in to see if they are working with the plan we’ve outlined in his IEP.  Often, when things start going well with kiddo, they forget about the pieces we’ve plugged in proactively; so I need to remind them why we’ve asked for the assistance indicated in the paperwork, and ask them to stick with it, even when they think he doesn’t need it.  For example, we have a few sensory breaks planned for him each day.  When he’s doing well, the staff may not give him the break because “He didn’t need it”…until later, when he melted down and threw something because his system was overwhelmed.  Fortunately, we have a fantastic team of people working with us in his school, and they have been very open to how we advocate for our kiddo.

So we have good information on kiddo’s progress, I schedule regular classroom visits to observe him and see how he is doing in his school environment.  Our first visit will happen later this week, and I make a point to be in at least once each month.  Sometimes, as people get working with kiddo (usually once they’ve had an engaging conversation with him), they forget he has CP and start asking him to process too much, more quickly than he is able.  By watching his interactions with peers and adults, I can help spot areas of support that are often simple tweaks and make suggestions to help everyone involved.

Also, since we are working toward kiddo’s transition to full days over the course of this school year, I am in the process of scheduling regular meetings with the IEP team.  While we won’t review the full IEP at every meeting (if you don’t know, they’re multiple pages long and a lot of work for all involved), we will check in with all team members who are working with kiddo to get their perspective as we seek to support him in fully integrating into the classroom.  With 10 people total (including hubby and myself), this is no small undertaking, since we will meet at least 2-3 times per semester.  Our first meeting is scheduled to happen in two weeks.

2.  Insurance

Oh, my, is this a can of worms!  I can’t even begin to tell you the fullness of what this has involved without multiple posts, so I’ll summarize as best I can.

To date, I am working three separate issues with our insurance company:

a.      Reimbursement for kiddo’s psychological therapies since that provider now has the “appropriate” license (one they recognize).  We see her on an almost-weekly basis, so this is a long paper trail that must be followed on a regular basis.  Thankfully, it is one that is now working smoothly, and to our advantage.

b.      Establishing the chain of referral that got us to said provider, because it will significantly increase the amount of reimbursement that will come back to us.  Seriously, I’ve been working on this once since the summer, and we’re tracking records back as far as 2009 to get this handled.  Yay – more insurance hoops to jump through!  (Can you feel the sarcasm?!)

c.      Advocating for reimbursement of therapies that have been sorely needed, paid for out of our savings, yet continually get rejected for repayment.  This one has been ongoing for over two years now, and I had to take the summer off from it because I was so exhausted.

It seems especially ridiculous to me that an insurance company will pay for medication that hasn’t been fully studied in children the age or size of kiddo and may, in fact, have dangerous side-effects, but they won’t pay for non-invasive, life-strategy-type therapies that are actually making a difference.  (I can feel how heated I’m getting even typing this much, so I’m making a note to myself to flesh out a full post on that another time.)

3.  Grants, Scholarships and Respite

We were fortunate to receive a scholarship earlier this year that covered kiddos sensory camps for most of the summer.  The same organization is running another round of applications right now and we are eligible to apply again.  That, of course, means more paperwork – which happens to be due by October 1^st.

The application itself isn’t difficult to fill out; it’s the part where we’re asked to tell our story and why we are applying for the money that is tough to navigate.  It’s challenging enough to have a child who has been referred to as “not sick enough” to receive certain insurance coverage or funding, but then to tell strangers our story, over and over, trying to articulate the challenges that come with our situation…well, sometimes, it’s overwhelming.  And there is no guarantee, once I’ve put my heart on paper, that we will receive any money.  I have sat here on more than one occasion in tears, as I dredge up the challenges and difficulties that our rainy-day-turned-monsoon has brought.

And I’m always on the lookout for respite care.  Truly – if you know of a resource that is low- or no-cost and reliable, I would love the referral.  Our time to recharge, reconnect and rest is so important and it doesn’t happen if we don’t plan for it.  So I’m always searching for new ways we can make that happen and stay afloat financially.

4.  Work

I have the privilege of doing something I love, in an environment I adore, with co-workers (who are also friends) who support me in a manner that I cherish.  Seriously – I get paid to do something I love!

And, there is a lot of paperwork that goes along with my job.  I just finished one round of the course I teach at the end of last week, and I’m working on finishing the paperwork I need handled for completion.  My next round of the same course starts October 1^st so, while I have a week of “break” in-between, there is also a fair amount of prep paperwork that needs to be handled for this one as well.

5.  The Unexpecteds

I’m sure you all deal with this category too, right?  The stuff that happens that you’re not planning on, but need to handle because it’s right in front of you?  Yep – I’ve had quite a few of those over the past ten days or so.

Both kiddo and hubby have been home with some type of head cold for a few days, and I’m feeling it creep in on me as well.  Kiddo was well enough to go back to school today, but hubby is still home (and has already called in for tomorrow) so having extra bodies around during “my” time has been a bit frustrating.

And our financial advisor needed to move, so we’re in the process of getting established with someone new.  No big deal there – just more paperwork, establishing accounts, figuring out how to sign in to a system that won’t let me in and other computer joys.  I’m sure I’ll get it figured out.

So, if you’re still with me, I hope you can understand why my cyber-presence may be a little sparse right now.  And, lest you think that I’m all work and no play, let me reassure you that I have plenty of fun, too.  I play in a professional handbell ensemble on a weekly basis, pick up my trombone with a church group a few times each month, and am establishing a regular activity routine that I enjoy, including walking with the dog, yoga, and some indoor, water-based activities.

At least the last of these doesn’t involve paperwork.  :)

Let Him Eat Cake

“God schedules a birthday, not man.”  ~Robert Bradley

Indeed!  Seven years ago, our lives were forever changed by the delivery of the biggest miracle, wrapped in the tiniest package.

On September 9, 2005 at 6:11p.m., our son came into this world.  He weighed in at a tiny two pounds, one-half ounce and was just thirteen inches in length.  I remember hearing my mother say, over and over, in a hushed voice, full of disbelief and wonder, “He’s so tiny.  He’s so tiny.  Oh, my God…he’s just so tiny.”

I may eventually write more about what brought us to his unexpected, early delivery some day, but today, my thoughts have been with him.

It’s been a rather tough day for all of us.  Kiddo has been difficult from the time he got up – yelling at us for singing “Happy Birthday” to him this morning (apparently, it’s only appropriate to sing when you’re going to have cake!), having a big enough melt-down in the van on the way to church (after the third try in getting out the door) that we turned around and came home, and ending the day with another tantrum that lasted for over thirty minutes and (I’m sure) was heard by half the neighborhood.

And, while his behavior has made for an incredibly long and stressful birthday, I’m still happy we had some fun together this afternoon.  My parents and oldest sister (and her family) joined us for cake and presents and then we had the chance to go to another family event for a while.  He did really well throughout that chunk of time, so the day was not without some bright moments.

But my favorite time with him was tonight, as he was getting ready for bed.  He was in his jammies, sitting over my leg, with his arms wrapped tightly around my shoulders as we said our prayers and did our “night-night, sleep-tight” routine.  When we finished, he was silent for a little longer than usual.  I was, too.  I don’t know for certain what he was thinking, but I know I was remembering his arrival into this world, and the jumble of emotions I felt that evening.

We both held each other a little longer tonight, and gave lots of extra smooches.  I buried my nose in the crook of his neck, and breathed in his smell – that wonderful scent of my kiddo that I could pick out of a crowd while blindfolded.  He laughed that it tickled, and I told him I’d stop, requesting one last kiss before he skipped off to bed.

My boy has been through a lot.  Not just today, but in the seven short years he’s been on this planet.  So, while today has had plenty of challenging moments, it has also had great love and connection, and that’s what I’ll try to hold onto as I drift off to sleep.

I peeked in on him just as he was falling asleep tonight, and saw the smile on his face as he was drifting off.  No doubt, he was thinking about the fun he had, too…and that extra piece of cake he got this afternoon.  I gently stroked his back, thinking of how much he has grown, marveling at the young man who is appearing before me.

And I know that’s going to continue to change.  My baby is slipping away, and there is a sweet, smart, funny boy who is taking his place.  But he’ll always be my baby, and I’ll always remember just how tiny and perfectly formed he was when he entered this world.

I know I’ll slip quietly into his room one last time, right before I go to bed, just like I’ve done every night since he’s been home.  I’ll gently place a kiss on his head, take a whiff of that sweet smell that is uniquely his, and marvel at the beautiful creation I can call my son.

Happy Birthday, Kiddo!  I love you more than you can measure!

My Little Boomerang

“A hug is like a boomerang – you get it back right away.” ~Bil Keane

I knew it was going to be an interesting day when I slept through two alarms (two!), was awakened at 5:30 a.m. by a phone call from a student, and discovered my skirt tucked into my panties after I left the house.  (At least I was still in my yard when I discovered my wardrobe malfunction.  Can you imagine the horror of being seen like that?  Or – even worse – the horror of seeing it?!  Thank goodness is was still dark out!)

It was clear to me from the time my feet hit the floor this morning that the word of the day was “flexibility.”  So I decided right then to roll with whatever came my way, addressing each situation with as positive an attitude as I could authentically maintain, and holding onto the belief that everything would work out the way it was intended.

(Honestly, I can’t help but laugh at myself as I read what I just wrote because that’s a concept right in front of me most days dealing with kiddo; yet I’m often gnashing my teeth about all of the curve balls he throws my way.  For whatever reason, today I was able to roll with it.  So I’m going to put one in the “win” column for myself and refer back to it on the days when things aren’t going so smoothly.)

Anyway…

Somehow, I managed to handle everything I had planned for today, and address all of the unexpected items that came my way, still feeling very even and balanced by the time all was said and done.  Admittedly, though, I was exhausted by the time I left work and drove the forty-ish-minute commute home to relieve my mother from babysitting kiddo by late afternoon.

And, I’ll tell you what…I don’t care how long my day has been, nor how challenging things may have seemed from moment to moment… there is no sweeter sound than hearing kiddo proclaim, “Hi, Mom!” as he barrels around the corner of the kitchen and attaches himself to my front like a starfish that will never let go.

I love that he reminds me of what is truly important, in the spur-of-the-moment way he has of doing everything.  His joy is pure and his love is transparent; he has no agenda – just the need to touch and be touched.  I feel so blessed that no matter what his day has been like, the first thing he wants to do is hug me.  I don’t think we let go for a full minute.  What in the world could be better than that?!

Letting Go

“Making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body." ~Elizabeth Stone

I just returned from dropping kiddo off for his first day of 1^st grade.  And now I’m sitting here, dabbing my eyes with a Kleenex, feeling like a not-so-little piece of my heart just went skipping down the sidewalk.

Even though kiddo will be seven years old in just five short days, this is the fifth year I have sent him off to school.  No – we’re not one of those memorize-the-flashcards-so-your-kid-will-be-a-genius types of families (though I’ll admit I played a lot of music to him while he was in utero); he went to school the very first time just before he turned two because he had serious delays and needed support.  I was unprepared to say goodbye to him so early, but I had to do it because it was what he needed.  He required that level of assistance and, as his mother, it’s my job to provide or secure what he needs the best way I can.

I’m no stranger to having to let go of what I thought my parenting experience would look like.  Any parent can tell you there is no instruction manual for parenting.  Yes, there are lots of books; but not a single step-by-step, this-is-what-you-can-expect manual exists…to my knowledge.  And, while there are some good texts available for the medical side of parenting a micro-preemie, I’m still searching for solid, relatable material to help me navigate the emotions tied into raising a child who has special needs.

I get really frustrated when someone who has neuro-typical children older than mine starts to play the, “Oh, wait until he…” game.  I have nothing but respect for those with children who have already navigated milestones like puberty, driving, leaving for college, getting married and more.  I certainly don’t know what it feels like to watch my child hit those markers because we haven’t gotten there yet; I hope kiddo has the chance to hit them, too.  And I respect that those parents have had experiences with their children that I haven’t.  But I have had parenting experiences that they haven’t, too!  We’ve navigated so many challenges with our not-quite-seven-year-old kiddo that I’m no stranger to having to let go, praying to God that everything turns out okay, and facing whatever comes our way.

I started having to let go when I went into the hospital for kiddo’s birth.  (Actually, it was even before that.  There were some indications early in my second trimester that kiddo’s spine may not have developed properly.  Fortunately, that was not the case.)  There are too many details to share in this post, so let me summarize it to say that the fact that we’re both here is a double miracle.  Truly, I was so ill and he was so tiny at just under 27 weeks, that our survival statistics were bleak.  And, while I’m extremely grateful for the advances of Western medicine to save our lives, there were so many things I didn’t get to experience because of his unexpected, super-early arrival.

I didn’t get to know what my body felt like at full-term – the roundness of my belly and fullness of my breasts, the inability to shave my legs or paint my toenails, or the awe in watching my child move around inside my body, catching glimpses of a hand here or a foot there.  I didn’t get to ask hubby for a late-night run to Meijer for pickles and ice cream to satisfy an odd craving.  I didn’t get to feel the pains of labor and know my body was doing what it was designed to do (and please don’t tell me I’m “lucky” for having missed that; it was an experience I had looked forward to).  His delivery was from an emergency C-section, so I didn’t get to experience the fullness of the natural birth I had been planning – the breathing, the pushing, and the feeling of him coming out of my body, knowing I had birthed him from the strength of my form.  (So much for that pre-natal yoga class!)

Once he was born, the experience of letting go continued…

Immediately after delivery, he was briefly whisked by my chest so I could see him.  He made a mewling sound, like a tiny kitten, then was immediately taken to be intubated because he couldn’t breathe.  There was no cry from my son to pierce the delivery room – no happy moment on video – no tears of joy from my husband as the doctor proclaimed, “Yes, it’s a boy!”  Instead, it was quiet and uncomfortable as we listened to hushed conversations from the medical staff and heard terms we didn’t understand.  Our hearts were in our throats because we thought kiddo might be dying and I was, by no means, out of the woods yet.  It certainly wasn’t the picture I had imagined…holding my swaddled child while he suckled at my breast, with my husband looking on in joy.

In reality, it was 18 days before I could hold kiddo.  Eighteen grueling, horrendously long, frustratingly scary days before he was stable enough to be out of his incubator, swaddled against my chest.  At the time, I remember thinking that God surely had a sick sense of humor.  What a cruel joke to give a massage therapist a child that she couldn’t hold, let alone barely touch.  It felt as if my heart had been ripped from my body and put in a box on the shelf, not to be touched for fear of breaking.  Talk about having to let go!

And I don’t even know if I can write about the afternoon I was discharged and came home…without my precious, sweet little boy.  I had been in the hospital, recovering for almost a week when it was determined I was well enough to leave.  Call me crazy, but I wanted to stay.  Part of what had made my time in the special-care OB ward bearable was that I was just a few floors away from the NICU, and could be wheeled down to see kiddo any time of the day or night.  And I did.  I can’t tell you how many times I woke up in the middle of the night, looking for him.  I was blessed with excellent care because any time it was too much for me to bear, one of the nurses would push me through the labyrinth of hallways, down to my little bird’s nest in the NICU, where I could sit by his side and marvel at his beautiful, tiny perfection.

But there was nothing in the world that prepared me for the pain of letting go and leaving him in the hospital that first night.  I had spent as much of the day by his incubator as I could, but it was finally time to leave.  I remember one of the attendants parking my wheelchair by the door as hubby went to get the van and I looked across the foyer to see a family with a newborn heading home.  It was almost more than my heart could bear.  Again, I thought it was a sick joke to be sitting so near someone experiencing so much joy with their precious bundle while mine was fighting for his life.  My arms were empty, but my heart even more so.  I knew kiddo had to stay in order to survive, but I was leaving him!  That was what he needed – argh! – there’s that word again!.  He had to be there if he had any chance of living, and I had to let go.  And I cried the whole way home.

I wish I could say the letting go got easier, but it really didn’t; I just got used to it.  We navigated 98 bone-wearying days in the NICU, with more medical details than will fit in a two-inch binder, including a really bad infection, in-patient surgery and dozens of procedures.  Each time, I had to let go of what I knew, research as many details as I could find, make the best decision with the information at hand, and pray to God that putting my precious child in the hands of the people around him was what I was supposed to do.  I left some nights wondering if my precious kiddo would be alive the next day, or if I had just spent my last moments with him.  Talk about a crash course in letting go!

Since his hospital discharge, we have navigated hundreds of hours in therapies, appointments with just about every type of pediatric specialist available, and multiple IEPs (Individualized Educational Program meetings) to assure he is getting the support he needs to be successful.  He has had three years of Early Childhood Special Education, and one year of kindergarten, with the last two years of school being especially difficult for him.  No…I’m no stranger to having to let go.

But that doesn’t make it easier.  It’s still a challenge for me to watch him walk away, knowing that he is out of my hands and someone else is responsible for his care.  I have done my research, asked my questions, advocated for what he needs, and assured the best supports are in place.  I know I'll be going to pick him up in a little while; but for now I have to walk away and let go, and see how it all plays out.

So please excuse me if I don’t respond to your comments of “It will get easier,” or “Oh, he’s just in first grade – you’ll be jumping for joy next year.”  I’m no stranger to what it feels like as a parent to let go of my precious child.  And, as much as I’m enjoying some quiet time for myself right now, there is a big piece of my heart running around outside of my body.

Doing vs. Being

“Don’t do.  Be” ~ Dove Chocolate

I’m writing this as I watch my son on the massage table this afternoon.  He is receiving in our Student Clinic, and I’m in a chair about six feet away from him; close enough to be present and catch his occasional glance for reassurance, yet far enough away that he has his own space and can receive without me getting in the way.

I’m amazed how often people express their surprise to me that kiddo receives massage and bodywork on a regular basis.  I’ll give you more of his history which led to the “why,” another time.  For now, I’ll just say that it’s become part of what we do for many reasons.  And it’s so familiar for us that it’s almost second nature.

I love that the quote above was in the Dove chocolate he opened on the way to our massages this afternoon, since that was our whole goal for the day – to just be.  Coincidence?  Of course not!

Part of my responsibility as a parent, like any parent, is to guide kiddo’s development so he is safe and can make good decisions.  Given his medical history and neurological challenges, our philosophy is that kiddo will best be able to do that once he is aware of his own body and how it functions, and realize he has the ability to choose his actions (and resulting consequences) as well as the opportunity to set good, healthy boundaries for touch.  I can't think of a better way to allow him the chance to do this than letting him get a massage.

I think our culture focuses so much on the milestones our kids reach  – how quickly can they talk, walk, read, write, throw a ball, and more (the list is endless) – that we don’t put nearly enough time and energy into helping them figure out how to just be.  That’s one of the biggest lessons I’ve learned as a massage therapist, a person and a mother, and why I continue to give him the time and space he needs to receive on the massage table.

I would consider my childhood a happy one overall.  My parents had a stable, loving marriage, we had a nice home to live in, plenty of food to eat, and clean clothes to wear.  We took family vacations and went camping, got involved in church activities, Girl Scouts and other service organizations and had lots of fun.  And while I’m grateful for all of those experiences that helped shape my character, somewhere along the way I internalized that I needed to do something to be of value.

Please don’t misunderstand – nobody told me that was the case.  I knew then (and still do now) that I was loved; still, for whatever reason, I allowed my own worth to be shaped by what I did, or could show others I could do.  “Do-do-do” pretty much was my motto at the time.  I will spare you my ridiculous, over-achiever resume here; suffice it to say that I balanced a lot and was proud of what I accomplished.  But I didn’t know a thing about just being or comprehend the value that comes with it.

It wasn’t until I was in massage school ten years ago that I began to understand how important that little, two-letter word really is.  And I’ll be the first to admit the concept challenged me to the core.  Thank goodness I had a healthy curiosity and willing spirit to explore how else my life might look by letting go of my need to do and, instead, focusing on my ability to be.

Never in a million years did I expect to be entrusted with a child who would require me to practice this concept hundreds of times each day, let alone try to help guide him and teach him how to do that for himself.  But that’s exactly where I am right now.  In retrospect, it makes sense that I needed to explore that concept for myself because I was being prepared to parent this special kiddo.  I just didn’t know it then.

That brings me back to his session.  I wish you could see it.  It’s such a beautiful sight.  The room is very quiet, even though there are almost a dozen sessions going on at the same time.  The lights are off and there is a nice amount of sunshine coming through the windows.  The background music is gentle, and everyone has found their own space of being.  Just sitting here, I am breathing and finding myself more relaxed than I’ve been all week.

And I’m having a full circle moment as I experience kiddo’s session today.  He hasn’t done anything to be of value or service, yet his very presence is a learning opportunity for anyone around him.  He is teaching others how to be present simply because he is on the table.  And I’m humbled to have the honor of experiencing the joy that comes with that.

By allowing him the opportunity to be himself and give his body the chance to fully relax, he is teaching others how to work with bodies, spirits and personalities different than their own.  We love his quirks – his wacky sense of humor, his unusually large vocabulary, his transparency of spirit, his creativity and love for the unusual – and we know they come with a number of challenging behaviors, too.  It’s all a part of the package.

Of course, he gets on my table at home a lot, too – but that’s completely different.  I’m his mom first and foremost, so that’s always a part of our relationship when he’s in my therapy room.  We’re connected in a way that I’ve never experienced before because we were a physical part of each other; and, though he lives outside of my body now, we are still connected.  It’s a gift to both of us when I stay in my role as mom, and allow someone else to nurture him so he has the space to just be.  I know I can hover and get in the way sometimes, so making the time where I step aside is so important for both of us.  And it’s a gift to me that there are others who support us in this manner.

As I watch him drift towards sleep, I find it tough to keep my tears at bay as I observe his precious little face.  He’s only ever fallen asleep on the table in Clinic once or twice.  And I know it’s because he trusts his therapist.  She is quiet and calm, and hasn’t been flustered by a single request he’s made – and he often makes many!  I can feel the compassion she has for my precious kiddo as she provides a nurturing touch.  She has given him the space he needs, and he is allowing himself to receive it.

What a precious gift to observe, because that is exactly what he needs today.  We’ve had a rough summer, and he’s already come through so much in his lifetime.  Yet, he has nothing to do and nowhere to go.  There are no responsibilities on his list -- no details to handle.  He isn’t worried about impressing anyone, or building a resume or hitting a certain milestone by a particular date.  He can just be…and he is.  And by watching him, I am, too.  My heart is full.

Mastery in Parenting a Special Needs Child

I don’t believe I’ve shared here that I’m a Certified Massage Therapist.  I have wanted to be of service to others for much of my life (even my past jobs show that trait:  horse stables, babysitting, and social work to name a few), but it wasn’t until my early thirties when I realized this calling was the one I was meant to answer.  So I went back to school, got my certificate and then opened my own massage business.

I also began assisting in the courses where I had attended school.  In exchange for my time, assistance and attention, I was able to experience the curriculum again from a different perspective, and gain more opportunities to exchange massage and bodywork.  To me, that was a win-win situation.  Never in a million years did I consider I might one day be teaching some of those same courses.  Yet, here I am.

The course I teach is called Business Practices, where we focus on the holistic nature of massage as a profession.  In case you don’t know, there is a lot more involved in being a massage therapist than simply knowing the names of bones and muscles and rubbing oil on the skin.  Business Practices includes not only the legal and ethical pieces needed to stay safe in our profession, but also the “soft” skills (such as communication) that are imperative to building trust and developing healthy relationships with our clients.

The first portion of this course focuses on the development of an individualized business/career plan for each student; the final portion, on job/interview strategies and preparation and, ultimately, each student’s Demo of Mastery presentation.  The Demo is a culmination of what each student has learned, as well as his/her process of growth and change.  And it’s one of my absolute favorite parts of the curriculum because it’s such a beautiful process to watch unfold.

Today, I had the opportunity to explore the concept of mastery with my class in preparation for Demos, as they are heading toward the end of this course and nearing graduation.  It’s always an interesting conversation to have, and I learn something different about myself every time I facilitate the discussion.  How cool is that?!  I’m paid to teach a course I’m passionate about and I get to reflect on my own growth and change every time I accompany my students down this path.  Once again, win-win!

One of the goals I strive for in teaching the way I do is to be as authentic and real-world-focused as possible.  Theories are fun to talk about and toss around, but I’m more of a hands-on, let’s-put-this-theory-into-practice-to-see-what-happens kind of gal.  (It’s not always a pretty sight, either; but I’d rather take a few lumps trying my hand at something than simply observing safely from the sidelines.)  I know our students have paid a good sum of money for their education, so I want to give them as much fullness as I can.  And part of that involves demonstrating to them what that authenticity looks like for me.  So, as my class is exploring this territory, I do the same for myself.  I think it’s only fair that I am willing to do anything I ask of them.

Well, today, I had one of those near-emotional “ah-ha!” moments myself, when I was reflecting on what I have mastered relating to being the mother of a child with special needs.  Believe it or not, I actually haven’t spent a lot of time reflecting on what we have come through in the past almost-seven years.  Most days, I’m too focused on being present with whatever is going on and/or getting through some difficult situations to really sit back and look at where we’ve been.

One of my colleagues has said to me on more than one occasion, “Have you ever just pretended you’re a helicopter and circled above your life for a moment?  Have you ever thought about what your life looks like to other people, as they hover around you and watch what you handle on a daily basis?”  Um...no, not very often.  Because going back to some of those places can be dark, scary, and/or painful and it’s not always a helpful thing to do.  I know there are lots of joys and celebrations, too, but there are a lot more emotions in the grief column of the past than most of the others combined.  Exploring the territory of one often brings up the other side, so it’s a mixed bag.  I have to be ready to deal with whatever comes forward when I open it up.

And I also believe that most parents of special-needs kids would do the same things I’ve done.  Another colleague tells me differently.  I can hear her voice echoing from a recent conversation that went something like this:

Me:  Well, I’m not doing anything that any other parent wouldn’t do.

Colleague:  Are you f’ing kidding me?!  There are a bunch of parents out there that wouldn’t put in the time and energy you have with what you’ve gone through with your kiddo.

Me:  Yes, they would.  What parent wouldn’t do all they could?!
Colleague:  A lot of them.  And I know some.  Trust me – what you’re doing is not what every other parent will do.

I was speechless.  I know that’s tough to imagine, but it’s true.

So, as my students were writing about their own mastery today, I decided I’d consider…just a teeny, tiny bit…what both colleagues told me, to see what I would put in the “mastery” column of my own life regarding parenting kiddo.  And I was humbled.  I didn’t have time to completely flesh it out there, so I have spent some time tonight writing about it.  I hope you don’t mind that I’m sharing it here; it’s helpful for me to acknowledge the things I am doing that are working well, and writing is the medium to which I’m called.  I’m sure there can be more added to the list, but I have three initial areas where I’ve reached a level of mastery in being a special-needs momma bull…

1. Advocacy
   

Kiddo can’t advocate for himself in the arenas where so many decisions have to be made:  medical care and educational needs.  I’m sure I’ll have more posts at some point about the numerous pieces involved in each of these areas.  For now, suffice it to say that I have no qualms whatsoever about voicing my concerns for what is best for him, researching options, and asking for what we need.

There are so many gray areas in both the medical and educational side of what kiddo needs that there isn’t necessarily a “right” way to proceed.  And the results of what we choose to (or not to) do can have a profound impact on the kiddo we experience at home, so it behooves me (us, actually; just speaking from my own voice) to make well-educated choices.  Sometimes, there is no “good” option and it’s a matter of which choice is the least problematic; however, I’m learning a lot about how to navigate the waters of the regular IEP meetings at school, approach our insurance company for much-needed therapies they won’t cover, and work through the chain of command involved in seeing the specialists here in GR.  (More to come on this one later.)

2. Clarifying questions

This complements the above.  Advocating and requesting action can only be handled when the necessary questions have been asked; and, sometimes, the answers aren’t pleasant or easy to stomach.  But I’m getting better at handling those tough conversations.  I’ve always known I’m a give-me-the-facts-please kind of gal, so I will ask until I am satisfied I have the information I need to proceed.  I know this has ticked off more than a few people (in both the school and medical settings), but you know what?  I really don’t give a damn!

I do my best to work cooperatively with anyone we need in our corner, and it serves me absolutely no purpose to antagonize the very people we may need to rely on.  However, that doesn’t mean that I just sit by quietly and let anything happen.  I know the power of the intention hubby and I have for kiddo’s growth and development (along with a great deal of prayers, love and light from so many of you) will only manifest if we keep asking what we need to ask.  Period.

3. Integration

I have learned how to put many different pieces of our family puzzle together, to try to find the best balance we can have as a family.  For us, this part involves a variety of modalities we use to support our physical, emotional, mental and spiritual self-care as individuals, parents, child, husband & wife, and a family.

And it spills over into how we do everything we do.  It involves a lot of flexibility and creativity to make the best of tough situations, and a boatload of perseverance to assure we put our own care at the top of the list, so we can care for our precious little one.

Some days, it feels like two steps forward and one step backward.  And recently, I ran across this quote from Robert Brault:  “Optimist: someone who figures that taking a step backward after taking a step forward is not a disaster, it's a cha-cha.”  Based on that logic, we certainly do a lot of dancing in this house!

I’m grateful for today’s experience to give me a new line of thought that feels like a balm to the wounds I’ve been nursing.  I know there is more ahead of us, so looking back at what I/we have already accomplished gives me energy for the path we’re still blazing ahead.  What I know about mastery, just like anything else in life, is that it’s a process, not a destination.  And the joy of mastery lies in the journey.

Emergency Chocolate

Yes, there really is such a thing.  (Check out www.bloomsberryusa.com for options.  My personal favorite is the dark chocolate.)  And, oh, how I wish this had been my idea!  There are so many applications where this product is useful; heck – I can come up with a reason for it for just about any situation.  Brilliant concept, don'tcha think?

And I am shamelessly calling upon it today.  Just a piece, mind you (okay…two).  And it’s heaven.  I was the lucky recipient of this wonderful confection as part of a larger “Love Bucket” given to me, from my colleagues, on my birthday.  The concept of the Love Bucket is a post all in itself, and I want to do it justice, so I’ll give you those details another time.

Back to the present…

Kiddo started out doing well this morning.  We’ve been weaning him off the medication that was too heavy for his sensitive system and have had a couple of generally good, manageable days in terms of his behavior and interactions with us.  They usually come in spurts, followed by some regression, so I’m not surprised he’s having some challenges pulling himself together today.  It’s par for the course of who he is and how he operates.

Some days, it’s just such a heavy load.  Today, I’m doing a great job of remaining calm and quiet (the two most effective strategies in my parenting basket) and trying to finish the work I need to prep for class tomorrow.  And I’m enjoying my emergency chocolate.

The cause of the meltdown was because I held a boundary on his screen time.  He has a limit of how much computer, TV or Wii he can use/see/play each day, and he was just about done.  Of course, he wanted to jockey for more time and I didn’t give in, so that’s what set off WW III.

Because he has a tendency to tears things apart, we have made his room a safe space…for all of us.  There is nothing on the walls, his furniture is bolted to the wall (we don’t need any accidents on top of his meltdowns), his closet is empty (he did that one himself; I didn’t want to put the clothes back only to have the process repeated, so I left it empty) and we pull out a few choice items (blinds, CD player, and lamp) when he goes in to cool off.

Today, he got to the blinds ahead of me and tore them off but I got the other items out and tucked him safely inside.  He’s still screaming his little head off.  And there’s a part of me that finds joy in that.  Call me crazy, but to hear his screams after his rough start in life is almost satisfying at times.  The day after his birth, he had a lung hemorrhage that we were told probably meant he would die, and the doctors were puzzled that it healed “without explanation.”  I don’t need medical science to tell me how it healed; my God is bigger than any explanation.

So when he melts down like this and I’m in a good place energetically, I often chuckle to myself.  If his former pulmonologist could hear him now, I think she’d be laughing, too!  Right now, my windows are wide open and I make no apologies to my neighbors.  That’s just what it’s like in my house.  Besides…one of them has the most annoying dog who barks incessantly every time he goes outside.  I don’t see kiddo’s lung power as a worse offense than the yipper next door!

And now, just in the space of writing this and savoring the feel of luxurious, dark chocolate melting on my tongue, my house is quiet.  That means kiddo’s brain has come back “online” and he is probably taking some deep breaths.  That’s a really good thing.  It means I can go into his room in a few minutes and we can talk about what happened and determine our next steps.

The key is to wait just the right amount of time.  If I go in too quickly, he’ll just wind right up again; if I wait too long, he’ll nap out and that doesn’t bode well for bed time later.  It’s interesting to me that the amount of time it usually takes is the same amount of time as it takes for two squares of emergency chocolate to melt in my mouth.

I wonder if chocolatiers know just how much chocolate to use in their confections for exactly this reason.  Brilliant, don'tcha think?!