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.