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Posts Tagged ‘grief’

My child’s life has been wrapped up in hospitals since the day he was born. Ironically, it’s the place he is most at ease; he knows the equipment and routines. He’s not afraid to tell a doctor they didn’t look in his ears or to ask the phlebotomist for her tourniquet. (Relax, our answer is always a resounding NO!) He knows how to work the otoscopes and the blood pressure monitors, the pulse oximiters and the electronic scales and where they keep the disposable caps for the thermometers. It’s all just second nature to him and we don’t give it much thought.

We’ve walked this hallway what feels like a million times through the years— many of them as recently as this past week. The pictures on the walls haven’t changed, the faces are pretty much the same. It works for us– for him, the routine, the predictability and familiarity. He knows Ms. M at the coffee shop who waits patiently as he orders his “cookie chocolate” with his speech device. Mr. John, the valet attendant, who always gives a smile and a fist bump and who never, ever makes it a problem if we want to play on the playground even after the car arrives. My little ambassador knows the nurses in varying departments by name and remembers the color of the stethoscope everyone wears. Dr. C? Red. Dr. D? Black with tape. Ms. T? Green…and so on.

Today, we’re winding down from a very long morning of appointments on the heels of a week’s worth of appointments and disrupted routines. I can tell he’s off kilter and out of spoons. I’m kind of feeling the same way. It’s been a hard break at the end of the school year and he’s missing not only his routines and outlets, but his very best school friend.

Him: Marcus, today
Me: No, baby, not today. (*crack* there goes my heart breaking just a little bit more with each repetition of this exchange)
Him: Marcus, school tomorrow.
Me: No, baby, not tomorrow.” *crack*
Him: Maybe.

My beautiful, loving boy. So hopeful. So resilient.

He stumbles against me periodically as we walk, loosely holding hands; I can feel his weariness. He looks longingly at the wagons of the other children going by. I silently berate myself for not getting a wagon for him; he’s tough but even he has his limits and his legs have been aching so much lately. If we weren’t in the home stretch heading off to get our requisite cookie for the long drive home, I would absolutely get a wagon.

He stumbles again and I feel him pull away from me, his hand slipping from mine. Suddenly, I’m on high alert as he darts to one side. Instantaneously, I scan the area and evaluate the possibilities of where he is heading. I see an office door tucked into the wall up ahead and dash to cut off his inevitable entry. I beat him to the door which wasn’t his target after all. His destination was something I hadn’t even contemplated.

He stops suddenly and cranes his neck upward to look at one of the many images which have become so much a part of our, my, unconscious mind. His spindly arms reach upward toward the mural – almost in supplication. One hand on the image, he is utterly transfixed. Relief washes over me. “Nik, what on earth—“ I begin. Then, I see the image on the wall. I am unable to breathe and I feel slightly dizzy. I am suddenly sucked into a vortex. Unbidden, hot tears course down my cheeks; I couldn’t stop them if I tried.

I watch as his delicate fingers reach up to touch the face of the child in the image—an infant on a ventilator. The woman – I’m assuming she’s a nurse because of the scrubs, but also because of the tender way she is cupping the top of the infant’s head—looks nothing like any of the nurses who spent so many months by our side all those years ago. Yet, suddenly, I can see their faces and hear their voices.

I can hear it all so clearly—the hum and whoosh of the ventilator, the sounds of the automated blood pressure machinery. I can hear the sounds of the gentle crooning as they shushed and soothed sick babies. And the alarms—oh, God—the alarms. I can feel the sudden, urgent energy in the room when something went terribly wrong. And the tears and stricken silence following the unthinkable.

I don’t think about those things often—seldom consciously. Yet, I can’t help but wonder at how deeply they have been etched into my psyche. How little it takes to trigger the emotions and memories.

Nik’s finger traces over the image of controls on the ventilator. He turns his head to me as if in question, but I don’t know what he’s asking. Could he possibly remember? He was so tiny, so fragile—weighing barely more than a pound of butter. Is it even possible? I can’t help but wonder. Is his sudden, reverent fascination with this particular image on this particular day because of an offhanded remark I made to a nurse today about how little he weighed and how long he was in the hospital? Does he have those visceral flashbacks, too?

I can point to specific habits and traits he has developed as a direct result of his 209 days in the NICU—habituation they call it. The way he likes to fall asleep all scrunched into a ball with his feet and head pressing against something? That’s a vestige of all those months cocooned in a bendy bumper. The way he can sleep through almost ANY sound, but cannot sleep alone in his room. The way he constantly needs music in the background of whatever it is he is doing. But, never, before this dizzying, heart aching moment, have I ever suspected he had more than hazy awareness of his time in the hospital.

I have kept my own memories and emotions so neatly compartmentalized that I simply assumed he had no real memory of any of it. It’s been easier for me to cope with my own waves of remembrance that way. The thought that he might have powerful conscious memories of his difficult sojourn tears at my heart. If I, at nearly 50, still cannot process it all without falling apart, what must it be like for him? How does he process all that happened to his tiny body and tender spirit without the layers of cognition and understanding?

I don’t have any nice neat wrap up to this story; it’s unfolding as I write. I’m processing as I go. Apparently, so is my son.

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I’ve always been a cat lover. It started long ago when my four-year old self woke to find the family cat having kittens– in my bed, under my covers! A series of family pets including dogs, cats and horses followed; the cats were always my favorite for their silent and fluffy unconditional love to an often lonely little girl.

In college, my beloved Tasha chose me as hers by climbing up my pant leg and forcing her kittenly affections on my cheek.  We had seventeen years together including several moves and many relationships. Tasha used to run and hide from all my boyfriends until my husband came along. I’m convinced she was waiting for the “right one” to come along before she finally succumbed to old age and kidney failure in my arms in the middle of the night mere weeks before my wedding.

Shortly after the wedding, my heart still ached with the loss of my Tasha and I wanted to find another cat to love. I was so sure it would be a boy because, well, no other female cat could possibly replace Tasha in my affections. Turns out I was both wrong and right and ended up with not one cat but two — a boy, Rascal, and a girl, Pandora.

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Pandora was a feral rescue cat we adopted when she was about four months old. She was, and still is, an incredibly affectionate girl who loved nothing more than snuggling on my lap. When I was pregnant with Nik, she would lie on top of my belly and rest her head against my heart. I was on bed rest during my first trimester, so there was lots of bonding time between Pandora and me.  In hindsight, I think she was bonding with the baby growing in my belly, too. Though, in typical cat fashion, I suspect she was telegraphing messages of “I rule the castle and don’t you forget it, peanut!”

Nik was born three months early. The devastation of coming home from the hospital without my baby, the worry and waiting for the other shoe to drop because he was so fragile and his health so precarious, was made bearable by Pandora’s faithful and patient love. As I sat on the sofa, night after night, sobbing uncontrollably, she would silently nudge her head into my before wiggling her way onto my lap. It didn’t take long before she would drape herself over my shoulder –offering herself up as a giant furry tissue to catch the torrents of my grief.

When Nik came home from the hospital, seven months later, Pandora immediately bonded with him. Nonetheless, I had to constantly monitor her; being a slightly anxious kitty, she had a habit of indiscriminately chewing through things. Like the lamp cord she chewed through on one of the many days I spent at the hospital with Nik. I was worried she would try to bite through the oxygen tubing which trailed around the house, keeping Nik breathing freely. To my wonder, she never tried; it’s as if she knew that Nik needed her to watch over him.

When Nik napped, Pandora would circle a few times and lie down facing him. When he was awake, despite his inability to do more than sit in his bouncy chair or lay on a blanket, she would sit across the room watching warily. She kept her daily vigil faithfully and slept outside his room each night.

Shortly after we moved back east, when Nik was about fifteen months old and no longer on oxygen, the routine was pretty much the same. No matter where in the house Nik was, Pandora was almost always somewhere she could keep watch over him. Nik wasn’t yet sitting or even rolling over so she stayed relatively close.  Because she wasn’t allowed to sleep in our room (Niksdad has allergies) and she wasn’t allowed in Nik’s room for fear she would get into the crib with him, Pandora continued to keep her silent vigil outside Nik’s bedroom door each night.  When we went into Nik’s room to start the pump for his overnight feeds, Pandora would accompany me into the room and rub against my ankles until I picked her up. “See, girl, our baby is fine. He’s sleeping. Go lie down now.” And off she would go to wait in the hall.

I always thought she would have made an excellent mama cat.

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The sounds of frantic meows at my bedroom door woke me from my already light sleep. “Pandora,” I moaned, “shut up! You’ll wake the baby!” I hissed and threw a shoe at the door in an attempt to scare her away. To no avail. Her meows became louder and more insistent. I got out of bed and threw the door open to shoo her away. She swatted at my leg and head butted my ankle and continued to howl. Something wasn’t right, but I couldn’t figure it out.

I picked her up to soothe her but she jumped out of my arms and darted to Nik’s door, pawing and meowing. Annoyed now, I scooped her up and shushed her. “Fine, you want to see the baby? He’s sleeping. He’s fine.”

When I opened the door, my heart stopped. I remember suddenly screaming as if the house were on fire.

Nik had not ever been able to roll over independently; it was an emerging skill we were working on and he could only roll in one direction. In his sleep, he must have rolled numerous times: the feeding tube was wound completely around his neck. The increasing tension on the tubing had pulled the pump stand over so far that it lay precariously perched on the very corner of the crib. One more turn or a slight bump would have sent it falling to the floor, tightening the tubing around Nik’s neck. Nik was asleep through all of this; he didn’t make a sound.  I wouldn’t have heard anything through the baby monitor which sat next to my pillow. Were it not for Pandora’s utterly uncharacteristic howling in the middle of the night, we would have never known there was anything wrong until it was too late.

Guardian angels come in many incarnations.  Nik’s has the softest fur and the sweetest meow.

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Editor’s note:
Obviously, that was the end of Nik’s unattended nighttime feedings, but Pandora continues to keep her vigil to this day. During the years in which Nik woke screaming in pain every night, Pandora was always right there at my feet, waiting until all was calm and I would hold her over the crib to stroke her gently and show her that our baby was okay. Even now, she waits outside his bedroom door until he has gone to sleep.

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Nik can only verbalize a couple of words and string together letter sounds. When he does vocalize, it always sounds kind of breathy, like he has mild laryngitis. Actually, he might; we’re not sure how much damage may have been done to his vocal chords as a result of being on a ventilator for so long. But I digress…One of the words Nik can say with some degree of consistency now is “Mama.” It melts my heart every time he says it, despite the fact that he only ever says it with prompting. Like tonight.

Earlier this evening, Nik and I were playing and laughing together. I leaned over to kiss him on the forehead –just because I can. I always tell him how much I love him when I do that. I don’t know, maybe I’m making up for all those lost days of his infancy when I couldn’t just scoop him up in my arms and smother him with kisses for fear of dislodging tubes and intravenous lines or possibly upsetting his tiny and fragile body. All I know is showering my son with affection is an addiction I just can’t quit. I don’t want to until he forces me to stop!

After kissing his head and telling him I love him, I asked Nik if he could say “I love you, Mama.” He leaned down to his talker and hit the sequence of icons to tell me. I smiled, but I wanted more. I pushed. “No, baby, can you say it with your voice? With your mouth?” as I laid a finger on his lips. “Can you say, ‘Mama, I love you’?” I knew he wouldn’t or couldn’t but I had to try.

He looked at me and grinned and whispered his breathy, disjointed “Ma-ma” and then kissed me softly on the lips. I laughed and said “Do kisses mean ‘I love you’?” He tipped his hand in his own rendition of yes in sign language. “Can you say it again, baby?” I asked. He leaned toward me and put his face up to mine; I felt the whisper of an angel wing on my lip and heard him rasp “Ma-ma” once again.

In the instant that I blinked, he was whirling away from me toward his LeapPad books, humming the Spongebob Squarepants theme. Don’t ask.

A few hours later, not too long after I’d put Nik to bed and sat in the dark listening to his gentle snores, the telephone rang. It was my husband’s employer; Niksdad was asleep so I took a message. They had called to update Niksdad on the condition of one of his patients who had gone to the hospital the day before.

Shaking, I went upstairs and kissed my baby one more time and let the tears fall.

Somewhere tonight, another mother of another child with special needs kissed her boy for the last time. My heart aches for her pain.

Tonight, I am grateful for every kiss, every sigh and snuggle I have with my precious boy. Hug your children tight. Cherish every moment.

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This has been an unbelievable week. 

My brother-in-law’s younger brother passed away on Wednesday morning.  Then, his sister died on Thursday evening.  It’s not my story to tell but it has been, as anyone might imagine (and forgive my profanity), a bitch of a week.

Toss into the mix the fact that Nik is not ony not sleeping through the night, but he’s getting more and more agitated each night that he is unable to sleep.  The poor kiddo wants to sleep in the worst way.  Last night, as he fought to go back to sleep for nearly four hours, he alternated between lying in his crib, sobbing and punching himself in the head, and sitting up —also sobbing— and banging his head against the crib.  He would calm himself down and lay down to go to sleep only to be sobbing twenty minutes later.  It’s been heart-wrenching —and beyond exhausting.

Those of you who’ve followed our story for some time already know that we use melatonin, we’ve tried a variety of medications, relaxation techniques, etcetera. Nothing works.  The bigger he gets the worse it gets.  Now, the patterns of disrupted sleep even show up on his EEG’s.  Sleep Maintenance Insomnia is the official diagnosis.  I kid you not; there is such a medical diagnosis and it’s actually fairly well-studied, documented and classified.  And it’s not a good thing for an already undersized, developmentally delayed child with growth issues. 

The human body does most of its growth and repair during sleep; children Nik’s age should be getting an average of ten hours uninterrupted sleep per night.  On a good night, Nik will get about three and a half hours in before he wakes.  Some nights he’s only awake for a short while —twenty to forty minutes.  Others, like the last three nights in a row, he is awake for just as long as he has been asleep.

Tonight, we began a trial of clonidine at bedtime.  We’ve been reluctant to use it because of Nik’s history of rebounds and adverse or paradoxical responses to nearly all medications which alter the balance of his central nervous system.  Desperate times call for desperate measures.  I am worried that we’ll see a lot of grogginess tomorrow —and probably some significant behavioral challenges.  But, you know, I think I can handle those if I’ve actually gotten a good night’s sleep.

Fingers and toes are crossed!

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In memory of Evan 20090724
 
In loving memory
of
Evan David Kamida
July 30, 2000 – July 24, 2008

In honor of Evan and the gifts he brought to this world in his too short life.

PEACE

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So much going on … 

First, I am chronically exhausted,  I no longer sleep through the night —even when Nik does.  I’ve recently had some blood tests to check my thyroid levels; I still need to actually get those results and make an appointment to see my doctor.  As a result, I have very little energy —either physical or mental— to sit and think of words to express what’s going on.  I’m pretty sure I may need my thyroid medication adjusted.

I went back to the gym today for the first time since Nik was in the hospital.  For those of you counting, that’s one hundred days. Ouch.  But I made it through a thirty minute elliptical workout —clocking two miles where I once did three.  But I’m back in the saddle and that’s what counts.

So much is happening with Nik lately that I may have to simply list things for you! 

The potty training is, um, progressing.  If by progressing one means he’s peeing and pooping on my floors, refusing to wear a diaper or pull-up to bed —with the most spectacular of tantrums, I might add— and generally letting us know he is D-O-N-E.  The catch?  We still don’t have a full-access solution for him.  We’re ordering one tomorrow through our medical supplier.  Then the real fun can begin, yes?

Eating? Pffft.  Like an old pro.  I have yet to find something the child isn’t willing to at least try.  Believe me, I fully appreciate the gift we have in that.  Nik’s working on self-feeding skills as well as challenging himself on different textures and quantities.  My latest challenge is finding enough foods to fill him up without giving him too many calories!  Thank goodness he likes fruits and veggies.  And anything with salsa.  I kid you not. *shudders*

We’ve recently increased his Neurontin dose to accommodate his increasing weight.  We had started at a super low dose so we had plenty of wiggle room.  So far, other than some transitional behaviors which we expected, we’re pleased.  Overall, I think, it seems to be contributing to some lovely developmental surges.

Nik’s recently begun not only noticing other children at the park or in play group but he’s begun to try to insert himself into their activities.  Obviously, he doesn’t have the communication skills to be able to indicate “Hey, I want to play with you!” but he’s trying.  The first time I watched him follow a group of children climbing upthe sliding board at the park I wept tears of joy and relief.  Niksdad tells me it’s becoming more consistent with each trip to the park, too.  His behavior at home is also telling us that Nik really wants to spend more time with others; the change is delightful —and challenging.

We’ve set things in motion to not only get a commode chair for Nik but to also get a new car seat, a new stroller, and a new bed!  So much physical growth and change all at once! Yikes.  We meet with our medical supplier tomorrow to select specific items and then begin the process of authorizations, letters of medical necessity, etc.  Nik has grown so much that he needs things which are not commercially available or, if they are, are not designed to meet his safety and developmental needs.

Nik’s communication efforts continue to soar!  Not only is he picking up —or making up— new signs; he’s also following multiple step instructions more and more.  I didn’t know it was possible for a nonverbal child to talk back to his mama but —oy vey! —the tone of babble this child uses with me sometimes is amazing.  The boundaries are being tested at every turn and we couldn’t be more delighted and frustrated!

Next week we will begin a several week trial of one of the devices from Prentke Romich (the same company which supplies Schuyler’s Big Box of Words, aka Pinkessa).  We met with Janet Lehr, the regional consultant for our area, several weeks ago.  The trial was nothing short of amazing and it became clear to all of us that the PRC technology would be a good fit for Nik’s learning style.  The question on the table now is which device?  We’ll start with the Springboard Lite and then try the Vantage Lite.  The primary difference is that the SBL doesn’t have text to speech capability which the VL does. 

Where Nik is not yet an emergent reader, we’re not sure which device will work best for him.  It may be that the SBL is the best device but he might learn so quickly that we’d have to replace it with the VL in less than a year.  That’s sort of what my instinct says.  But, that’s why we’re doing this multi-week trial, too.

Homeschooling has begin in earnest. Sort of.  I’m still pulling together materials and deciding which skills I want to work on with Nik.  Just when I think I’ve got it figured out, Nik surprises me.  It seems he’s recently learned to identify letters by the sounds they make, too.  Um, so much for that first goal.  (Wow, I must be a powerful teacher; I think it and he masters it? Ha! If only.)

On the health front, Nik’s recent EEG gave us good news.  Nik remains seizure-free and his background wave forms on the look “normal for his age” according to our neurologist.  That means the weird eye rolling and facial grimacing we’ve been seeing are not partial seizures.  Of course, it doesn’t tell us what the cause is(possibly related to changes in his meds; the symptoms seem to increase in the first week or so of any changes) but we’ll take seizure-free any day!

The MRI last week gave us good news and some potentially bad news.  The good news is that there is nothing showing in Nik’s brain that is either degenerative or progressive in nature.  No growths of any sort and his cervical spine appears to be stable.  He does have a mild cervical fusion at C2-C3 but we already knew that; we needed to make certain it wasn’t impingeing on the actual spinal cord.  It is not.  Whew.

What does show on the MRI is continued fluid in the mastoid air cells behind Nik’s left ear.  This has appeared before and been dismissed by the ENT as “most likely he was fighting off some mild infection at the time fo the MRI.”  This time, it’s appears to be slightly more infused when compared to the last MRI.  Certainly enough so that our neurologist and pediatrician agree that it needs to be fully investigated by an ENT.  We see the ENT on June ninth.  If they are unwilling to investigate further, our pediatrician is prepared to refer us to either Johns Hopkins or Children’s Hospital in Philadelphia for further evaluation.

In light of this recent development, we requested copies of allof Nik’s MRI images from the hospital.  After we met with the neurologist yesterday and he showed us where to look on the films, I spent some time poring over all the films.  While I admit I am not a neurologist or a radiologist so I’m not quite certain what I’m looking at, what I think I see disturbs me.  Greatly.  Enough that I am going to ask our neurologist to examine the full set of films.

It appears that there has been a continual building of fluid in the mastoid region for more than two years —possibly three.  It was barely discernible back in January of 2006; just enough of a small patch that it could be either overlooked because the primary focus was on the brain then.  Or it may have been dismissed by a radiologist as evidence of a mild infection and not necessarily worth remarking upon.

One of the challenges is that the films were not all read by the same radiologist and were not ever read as an entire series; they’ve only been compared one at a time —the most current to the most recent —in an effort to determine if there’s any sign of either progressive or regressive injury to Nik’s brain.  Thankfully, there is no evidence of such.  However, the potential long-term impact if this is left untreated could be permanent or significant hearing impairment.

Going through Nik’s MRI’s —he’s had five in four years —has been a diffcult process for me.  They are not “normal”by any stretch of the imagination.  The damage sustained by his brain in his extraordinarily rough start in this life is emblazoned on those films in splotches of white “holes” where there should be grey matter and in enlarged perivascular and periventricular spaces.  In short, there is clear-cut evidence of permanent damage to certain areas of his brain.

Our neurologist gently answered my hesitant questions yesterday—ones I should have asked years ago but was simply too grateful that my child was alive to even think about the longer term ramifications.  The questions about what those holes and patchy areas tell us about Nik. 

The truth is, they don’t tell us anything we don’t really already know. Those areas tell us why he has difficulty with motor functions and why he may have some vision problems.  Why he may have some longer term speech challenges.

This is a tough pill to swallow right now.  I’ve known for years that there was “mild damage” to Nik’s brain but I was able to fool myself into ignoring its existence by not looking at the stark images.  If I didn’t look and I didn’t understand those images on the screen, perhaps none of it was real and one day Nik would —miraculously, spontaneously —recover.

It’s like ripping a scab off an old wound.  The surrounding tissue has begun to heal and the damage is only on the surface, but the nerves are tender and raw.  The pain is none the less searing.

And yet…

None of this matters a whit to Nik.  He simply keeps moving along and making amazing progress.  Whether because of our help or in spite of it, he perseveres in the best of all possible ways.  No obstacle is insurmountable, no challenge too great and no adventure too grand.

I don’t get the luxury of wallowing in my sadness and self-pity.  Nik needs me to put on my big girl panties and keep moving.  I must if I’m to keep up with my little dynamo.

And yet…

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