Archive for the ‘self-pity’ Category

Tonight it feels like I can’t catch a break even if I used a net.

My wunderkind is down again. A dear friend emailed me yesterday “apparently no one told Nik he has special needs.” Apparently no one told him he was sick, either.

Today was a bumpy day after a bumpy night in a string of bumpy nights. Then the wheels fell off the bus. Nik broke out in a very fine, pinpoint raised red rash on his back, his feet and ankles, his arms, under his arms…

What’s a mother to do when her child is on so freaking many meds and has multiple medical diagnoses? It could be from the antibiotic —unlikely as he’s taken this one many times with no side effects, but you never know. It could be —waaaay scarier —a rash caused by one of his seizure meds. We talked to our awesome neurologist this evening (he even gave us his cell phone number!) and he told us to stop the medication entirely. Not something that is normally recommended with this kind of med but he wanted to err on the side of caution as the alternative could be, um, potentially permanent.

Then again, it could be something viral like roseola. Or, possibly, something else entirely.

Yeah, Niksdad and I really relish the idea of spending a sunny, beautiful Saturday traveling to the hospital to have someone that doesn’t know anything about Nik tell us, “Um, well, we’re not really sure…” Yet, we have to cover all the bases —just in case. Nik’s fooled us in the past and it hasn’t been fun.

There’s a little more to the story but I don’t have the mental energy to try to tell it. Something about the increase in all the icky “mysterious pain” behaviors and the angst of watching my son struggle so. I tried to tell him tonight, as he cried and pulled me to him —clinging to me like a monkey —that his Daddy and I are trying really hard to make it all better. I think he understands that; I hope he does. My heart aches and I am frustrated.

Can’t we just deal with one stinkin’ thing at a time? ARGH!

And have I mentioned that I’d sooo much rather be at BlogHer with Susan, Kristina, Vicki, Jennifer, Kristen, Jordan, Stimey, and a bajillion other potential blogging friends? Or DisneyLand with my pal, Drama Mama, and her awesome girls?


(Thanks in advance for the prayers and warm thoughts.)

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Look out! Look out!
They’re walking around the bed
On their head
Clippety cloppety
Arrayed in braid
Pink elephants on parade

“Pink Elephants On Parade,” from Dumbo

It feels like there’s a huge pink elephant sitting in the middle of my cyber living room and I cannot get past it to write anything else until I deal with it. Of course, no one else can see this elephant because it is really in my mind. But since blogging seems to help me work out some of these things, well, you lucky readers will get to join me in my sorting it out. Grab your hankies, this feels like an emotional journey of epic proportions today.

Since Nik was born, this has always been a very difficult time of year for me. I know that it should be filled with joy and hope, faith and miracles, and all that sort of stuff. But for me, try as I might to let it go, it still carries the essence of anxiety. The glimmers of impending catastrophe that gnaw through my veneer of calm, cool collectedness.

We knew just before Thanksgiving that there was something “not quite right” with my pregnancy. I spent the two nights before Thanksgiving at the hospital getting steroid shots and being monitored for hours before they would let me go home. My sister’s in-laws —who always welcomed me with open arms to every family gathering since my own family was 3000 miles away —pampered me and waited on me hand and foot that year. Nik was born via emergency C section the following Tuesday afternoon following a scary non-stress test (you gotta love the oxymoron name of that one, huh?!). My husband was somewhere under the San Francisco Bay —on his way to a conference in the same town where I sat alone and terrified in a hospital labor and delivery ward waiting to find out whether our child would make it long enough to be delivered.

Nik was in rough shape with no amniotic fluid to cushion him, the umbilical cord was wrapped a couple of times around his tiny fragile neck, and he was in a breech presentation. Try as they might, the OB and perinatologist couldn’t get Nik to respond to any stimuli. His body was shutting down and his heartbeat was irregular. Time was slipping away and attempting to take my child with it.
Niksdad made it with some few minutes to spare. Nik followed soon after.

I don’t’ remember much of the delivery, except the feeling of my insides being stuffed back in before they stitched me up. Niksdad had left my side to be with Nik. He was the only one of us who saw our son’s face unencumbered by breathing apparatus for weeks. Niksdad’s strongest memory of the moments after the delivery is of touching Nik’s hand and feeling Nik’s miniature grip around the tip of his index finger. “I’m here, Daddy. Don’t go away.”

Yet here we are four years later with our strapping boy. He has so many challenges and he fights like a hero every single day. I know I should be reveling in that spirit. And most days I do but, for some reason, these days approaching Nik’s birthday are always a roller coaster of emotions for me —and for Niksdad though he doesn’t show it quite as obviously as I do. There never seems to be an end in sight, a soft place to land to catch our collective breath.

I am sure some of this feels more intense this year because of the episodic pain that Nik has been having and our anxiety about finding a cause —and putting an end to Nik’s pain. Then, too, there is the fear and uncertainty of what lies ahead for Nik in terms of his overall development. We refuse to accept that Nik will not progress beyond where he is now in terms of his ability to communicate his wants and needs. With each passing day I see Nik become so much more engaged in his environment, so much more interested in socializing with familiar people like his grandparents and his therapists. Yet we also see so many times where Nik is simply not present at all; he has retreated into a place where we cannot reach him. There seems to be no middle ground, no place where we can see a continuum of progress unfolding.

We feel lost as to what to do for Nik. We pulled him out of school because we knew it was too overwhelming for him. Yet he needs something more than I am able to give him by myself. There is such a dearth of resources in our state unless your child is in the school system. It feels so damnably unfair that I have to put my child in a situation that I know is not good for him in order to gain access to certain services. And it breaks my heart that our financial situation is what it is right now and that we are not in a position to be able to pour dollars into additional therapy for Nik; he responds so well when he gets it.

Maybe that is the emotional parallel that I am feeling right now —the uncertainty, the fear of whether my child will be alright, and the worry that I am not up to the task. It definitely feels the same as it did four years ago; that’s a feeling I haven’t had for a very, very long time. I know that I cannot see into the future and I’m not certain I really would want to know anyway. But I seem to have lost my sense of being grounded recently and I don’t know what to do to get it back.

I need guidance, practical guidance, to find resources I can use to help my child. Things that I can do right here, right now —at home —that aren’t going to cost me an arm and a leg. Things that will give Nik some good sensory input and help him regulate himself enough to stay present more than spurts and moments in a day so he can learn the things he needs to learn. To communicate when he’s had enough and needs a break, when he’s hungry, when he’s bored and wants my company —and so much more.

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You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you’ve lost your fight…

Rascal Flatts

It’s been a rough go lately. Between Nik’s lingering non-specific illness, sleepless nights, Niksdad’s demanding nursing school and clinical practicum schedule, and the specter of school not yet completely eradicated, I can honestly say that I have indeed felt helpless and like I have lost my fight. Don’t get me wrong, I won’t stop fighting for Nik, for my family, for myself. Well, if I’m completely honest, maybe myself a little —it’s always easier to put myself last when there are big challenges in our life and it feels like something has to give. But I am tired —too tired to stand today. (Forgive the self-indulgence which follows.)

On so many levels Nik is doing great. He’s recovered from our Texasinine dining experience and he’s still the same happy-go-lucky little boy he’s always been. The play and laughter are still present, though the eating anything by mouth still is not. He’s doing so much better now that he’s not in school. Except…

I know I’ve written about it a few times before so forgive me if I repeat myself —I’m too lazy to find the posts to link to. Nik’s been battling this odd “affliction” that no one can seem to identify. The lymph glands behind his right ear are chronically swollen —some days worse than others and some days causing more discomfort than others; the two are not necessarily mutual. Nik also has multiple nights of interrupted sleep from this same “affliction;” he will wake screaming in pain and hitting his head or biting his hand really hard. When this happens he is usually inconsolable. Advil given through his g-tube usually mitigates the worst of the pain after a while and he is able to go back to sleep for, oh, another hour or so. Then it all starts over again.

This behavior is not limited to overnights; it happens sometimes in the middle of a play or therapy session. This morning, Miss M got to witness it firsthand during feeding therapy. I thought she was going to cry because she was so upset for Nik. As quickly as it comes on, sometimes it can go just as quickly.

Throw in the lingering low-grade fever Nik’s been running nearly every day now since mid-September —in conjunction with the upper respiratory gunk, the ear infection, followed by the GI bug. Well, you might imagine that we are all a bit frazzled and concerned. Something is going on but no one seems to be able to tell us what.

Then, there’s the ugly specter of our school experience which isn’t quite over. You see, though we’ve had him home from school since September 17th, we haven’t yet officially removed Nik from school. I guess, technically, they can’t cite us for truancy since he’s not legally required to be in school. Still, the district might be able to argue that we are interfering with their ability to provide Nik’s free, appropriate public education (FAPE). The only reason this might be important is if we need to keep them in the picture after all. Though, one could argue that Nik’s IEP as it stands right now —still missing a speech/language/communication section with any evaluation of present levels of functioning as well as no stated goals and objectives, PT and OT goals which do not presume competence and do not address Nik’s significant sensory needs —could hardly be construed as a promise to deliver FAPE even if Nik were in school seven days a week!

I am still waiting for answers from Legal Aid. Meanwhile, school has scheduled an IEP meeting on the 15th for us to officially remove Nik and to “review the educational services for which Nikolas will no longer have access.” Ordinarily that wouldn’t make me anxious except I know that Medicaid now has a copy of the letter of medical necessity from Nik’s doctor. You know, the one that says he shouldn’t be in school due to his health? Yeah, that one. I am worried that they are going to try to use that as leverage to keep school in the picture and maintain responsibility for providing services. If that happens, we are back at square one as far as IEP’s go.

I can hear the old Clash song in my head, “Should I stay or should I go now? If I stay there will be trouble. If I go it will be double…” ARGH! Why can’t it ever just be a simple, cut and dried situation? And worse, why do I feel like the floor is constantly shifting under my feet?

I need to take some time to write out the pros and cons of each decision but I feel like I don’t have complete information for either case. On one hand, having school involved will mean slugging it out for an appropriate IEP; I already know that will involve due process and, possibly, litigation. Still, it would resolve the issue once and for all —hopefully in favor of increased and more appropriate services and supports for Nik. There are so many unknowns and the process can take so long. It could, possibly take us a year or more to get things sorted out.

On the other hand, if we simply cut school out of the picture, we run the risk that Medicaid won’t or can’t cover what Nik needs. Can we muddle our way through to cobble together some homemade program for Nik? Quite possibly, but it’s daunting and could have some pretty significant gaps in it —especially regarding speech/language/communication.

Why can’t I make a decision and stick with it and trust myself implicitly? Why am I so afraid of making a significant misstep? Why am I feeling so weak right now?

Why are you all so damned far away that I can’t come over and cry on your shoulder or drink tea (or something stronger) in the warmth of your living room or sit in the dappled sunshine in your back yard and recharge? It feels so hard to pick myself up and brush myself off right now but I know I must. But it’s lonely. Very lonely.

Even this doesn’t seem to help me today. Sigh…

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Wow, that was some party last night, wasn’t it?
Sorry I ran out of food so early! 😉

Thanks for coming to hold my hand — it means a lot to me. Prayers, hugs, and drinks…all are appreciated! (Mom-NOS, are you hungover today? 😉 )

Nik had a good, solid night’s sleep last night and woke this morning in his usual chirpy, laughing and happy mood. He seems none the worse for wear…except the purple goose egg on his forehead.

We’re still going to be watching over him but I feel much less anxious after a good night’s sleep for all of us. Sleep really is such a balm, isn’t it?

I hope you all made it home safely; I’m afraid I passed out after the post! LOL We’ll have to do it again sometime soon— maybe at someone else’s house? Or better yet, let’s throw a giant party to celebrate all the good stuff. ‘Cause I know there’s plenty more of that coming, too!

Happy Saturday. We’re off to the park later…race you to the swings!

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Been reading but not commenting tonight…too much energy expended today. I didn’t really want to blog about this tonight; I was going to send an email to one person in particular but thought that it was unfair to put that burden on her shoulders. I know she would willingly carry it, but it didn’t seem fair to ask that of any one. And maybe I really just need some Mama-lovin’ from all my blogging buddies…

Long story short, Nik hit his head pretty badly at school today and had a cluster of “mild” seizures pretty close together. The seizure activity isn’t that unusual —he does have “absence” seizures which are moderately well controlled by meds. But the frequency and characteristics of the seizures this morning were different; usually he just stares and zones out. A few times this morning, he went rigid and trembled a moment or two then zoned out for a bit. I think it really upset one of the para’s; she totally adores Nik and hats to see him go through this. Me, too.

We saw Nik’s pediatrician this afternoon. There’s no sign of any fracture, thank God! She told us to watch Nik closely over the weekend in case there are any changes in seizures or his behavior. If so, it’s the long trek to the hospital (an hour) for CT scans or whatever else they decide he may need. I don’t think it will come to that, but I am not going to say I am not worried.

But you know, I am so sick and tired of worrying about my child every time I turn around; it’s depressing and exhausting. Frankly, it sucks. Yeah, I know, “Get over it, Niksmom; it comes with the territory.” Well, I wanna move sometimes, really! (She whines, stamping her foot for emphasis!)

I suppose the bright side to this is that school is looking much more closely at that one-on-one situation. Maybe now we can get support from the staff and put some pressure on the administration to come through? God that sounds so Pollyanna-ish but I really do need to stay focused on the positive or else I will just get sucked into this swirling vortex of bleakness and despair which hovers so closely over my heart on some days.

So, I’m afraid there’s no cute Nik story to share tonight…just Niksmom having her own personal anxiety-fest. It’s BYOB or whatever else you want. Misery loves company sometimes.

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You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes, well you might find
You get what you need.

Mick Jagger/Keith Richards

I love my husband very, very much and I would be the first to complain that we don’t get nearly enough time together. Between his going back to school to become a nurse anesthetist (we still have a few more years to go) and working part time, Nik’s school schedule, Nik’s doctors’ appointments, and the general stuff that needs to get done around the house…well, let’s just say there’s never enough energy to go around for both of us at the same time. When he’s up, I’m down and vice versa.

With some of Nik’s special needs —most glaringly, his feeding tube and the fear it seems to invoke in any non-parental caregivers —it’s quite challenging to find a babysitter very often. My parents are pretty good sports though and do come over once in a while after we’ve put Nik to bed, giving us a chance to slip out for a movie once a month or so. Still, it never seems like enough.

Just the other night, I told Niksdad that I really missed “us.” Now I look back on all those times we used to take for granted when we could hop on the back of his Harley and ride off to a vineyard for the day, go for a drive in the mountains, a weekend in the country, a late dinner and a movie followed by an even later (decaf) coffee. Sigh…those days are gone. Long. Gone. Forever.

I cried on his shoulder last night about how we never have time to even just touch anymore. I’m not talking sex (don’t even go there!), but the affectionate embraces we used to share as we made dinner together or sat on the sofa watching a movie. All the subtle cues that remind a person they are loved and cherished. Now, our lives are so full we barely even have time to do things together that aren’t some sort of task on a to-do list. If it can’t be “divided and conquered” we don’t bother to tackle it anymore. Sad, but true.

Now, lest anyone think the love is gone, the flame has died, etc, I think I should note here that we have a tremendous amount of love, respect, trust, and affection for one another. We just seem to be sadly lacking in any modicum of mental, physical, or emotional energy left to do more than kiss one another and assure each other that “I love you, Darling,” or “I love you, too, Honey. G’night” before we pass out at the end of each day. Only to wake up six hours later to repeat some variation of the same theme the next morning.

I know my husband loves me and he is working damn hard to create a new life for us —not to mention a fulfilling career for himself. And I know that what I do as a mother to our son is irreplaceable. Niksdad and I did a rough estimate a couple of years ago and determined that, in order for me to work full time outside the home, I would need to make nearly $200k a year to cover it the additional costs incurred for childcare and nursing care. Niksdad likes to remind me of that once in a while; I guess maybe that’s his way of letting me know that he appreciates everything I do.

Still, I really miss our time together as a couple. I don’t know what it’s going to look like as we get further and further into Niksdad’s nursing training —longer class hours and clinicals on top of that, plus the study time —and I worry that we will drift apart. Not for lack of love and commitment but for lack of energy and creativity. For lack of something in common anymore that isn’t our son. My fear is that, as Niksdad grows and changes into his new career, I have nothing to show in my life besides being Niksmom.

Have you been there? How did you weather it, what did you do to keep things alive in the face of utter exhaustion and shared concern over your child/ren? How did you get out of what I call “the roommate rut?”

I wrote all that the other night and didn’t have the cajones to post it; it somehow felt too personal and maybe would make someone (besides me) uncomfortable. I am my own worst censor —always worrying about someone else’s needs first, even when I write sometimes. Sigh…

Niksdad headed off to work this afternoon. About 40 minutes later he came strolling through the front door looking baffled. Seems his work schedule was changed and no one thought to tell him. He works part time at Home Depot as he is going to school. We have been fortunate enough to be able to take some equity out of the house so his income isn’t mission critical. Well, it is in the sense that it will help us make the money stretch farther, but it isn’t in that we can certainly afford to pay our monthly expenses without it.

So, now Niksdad is completely off of work for the next two weeks. Hmm…I sure hope my lamenting about not having time together didn’t misfire in the universe… The old adage “Be careful what you wish for” sure applies here!

So here I’ve been grousing about not enough time together and all of a sudden —WHAM! Now what do I do? I mean, there is such a thing as too much of a good thing, right? How do I strike a balance between quality time with my husband and us wanting to kill each other from being together 24/7?

Yeah, I know…I’m never satisfied. (Laugh) (Um, file that under one of the ways in which Nik and I are alike?)

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I’ve really got to use my imagination
To think of good reasons
To keep on keepin’ on.
Got to make the best of a bad situation..

Gladys Knight & the Pips

Like a centipede doing fan kicks, the shoes keep dropping around here…

Just when I am ready to blog about some wonderful thing, something crappy happens to balance it out. I am definitely feeling the fatigue of the roller coaster that is my life these days.

We still haven’t ironed out the ear mystery —that’s kind of an ongoing saga for now —and Nik has recovered from his summer cold OR reaction to his DTaP booster from last week. In fact, he got rid of it so nicely…by giving it to me! Yeah, life is so not fair sometimes, is it!?

Yesterday was Nik’s last day of summer school for an entire month. Oh boy, am I ever going to be one busy mama. There are moments I am utterly exhausted just thinking about the things I need to do with Nik each day in order to keep him on a relatively even keel until school starts again.

I was able to get the Rx from our pediatrician for the levels of therapy recommended by the early childhood development team which evaluated Nik back in February. We’ve been reluctant to push the issue with school because, frankly, they just don’t have the resources —the actual bodies with the actual time to give —to provide the level Nik truly needs. I’ve been hesitant to go through insurance though because then it’s a slippery slope of school saying “If insurance is paying for it, it must be medically necessary so we won’t provide these services.” On the other hand would be insurance saying, “Nope, we’re not paying for this; it’s educational!” Damned if we do, damned if we don’t.

So we simply haven’t…until now. Now that we’re through the IEP reclassification and we’ve set the expectation that the frequency and duration of Nik’s related services needs to dramatically increase, I found a place here in town for Nik to get PT, OT, and Speech therapy during his summer break. It’s run by two women (one is a PT, the other an OT) who have been working in a combination of schools and hospital settings for many years. They were smart enough to see the genuine need in our town and I am grateful.

Nik, Niksdad and I went on Wednesday afternoon to tour the place (and drop off the doctor’s referral). Niksdad and I were really impressed and Nik took to the two therapists right away. We go for full evaluations on Monday and Tuesday and they can start services right away! I am so thrilled; the idea of going an entire month with NO therapies at all just wasn’t acceptable. Nik is making such tremendous progress that we really feared some regression and a significant recoupment or “ramp-up” time when he returns to school.

So here I have this rosy vision that we might go the therapies in the mornings and be home for lunch and nap, followed by afternoons spent either at the park or at my sister’s pool. The idea of such a structure for the next month is daunting but exciting. I think Nik will make phenomenal progress with so much therapy — twice a week in each of the three disciplines! We’ll see how close we actually come in reality! LOL

Niks teacher, Miss J, told me yesterday that Nik has been making tremendous progress in wearing his glasses lately and sitting still for story time. We used to have to use arm restraints/braces to keep Nik from tearing off his glasses. It is not what we wanted to do but felt it was necessary to protect Nik’s left eye (which has fairly close to normal in vision) and the remaining vision he may have in his right eye. Miss J also told me that Nik has been more actively engaging in some of the sitting/table activities lately —moving from one activity to washing his hands in the sink and going back to another activity. Still a bit unfocused but much better than he has been.

Of course, the day I was going to brag about all of the above, is the day that I got ill, Nik’s ear flared up again, and the area around Nik’s feeding tube site (called a stoma) became so inflamed and tender that he would cry if we even tried to touch it, let alone put the tube in. Not a good thing for a kid whose sole source of nutrition is that #$^%$ tube.

Yes, I get very resentful of the power that tube has over our lives —our ability to do things spontaneously (that would be none), the ease of finding a babysitter (non-existent unless the kid is already asleep!), the need to micromanage Nik’s nutritional intake (especially at school), and the sheer amount of stuff we have to travel with just to go to a doctor’s appointment —we must be prepared for an extra meal on the go, Do we have enough formula, did we remember to bring the 60mL syringe and water to flush the tube, Nik’s meds, etc. Somedays I handle it the same as breathing; I don’t even give it a thought. Other days, though, it is the albatross around my neck which pulls me under the surface of despair and frustration.

Yesterday (and today!) was one of those days. We ended up having to take Nik to see the GI nurse so she could check the site for infection. Fortunately, there was no sign of obvious infection but there was a large buildup of granuloma which had started. (That’s an inflammation of the skin which can build up and cause a tender ridge to form around the opening where the feeding tube goes through the abdomen. In Nik’s case, it’s very painful.) The treatment for that is to cauterize the skin using silver nitrate sticks. Yeah, Nik had to get his tummy burned yesterday.

I have sat and held my micro preemie son while neonatologists tried to insert PIC lines and watched the nurses draining my son’s chest tubes after heart surgery. Those pale in comparison to watching my son writhe and scream in pain and anger (at being restrained) as the nurse jams, literally, fistfuls of silver nitrate sticks (think long skinny swabs that burn like hell) INTO and around his abdomen. I handle it because I have to but I want to cry as hard as Nik does. My usually non-snuggly boy is a limp, clingy mass of hysteria by the time we are done. Somehow, Niksdad always manages to be at school or work when these appointments happen…

For some reason, Nik took so much longer to recover from the procedure yesterday; he usually is fine by bedtime or sooner. He cried his little heart out the entire drive home (an hour) and didn’t stop when he was in Daddy’s arms. We let Nik play quietly for a few minutes as we started to get his pump ready for dinner, knowing full well that he wouldn’t last to his usual bedtime of 7:00 pm. Within five minutes we saw this:

Yep, Nik was sound asleep sitting up by his “castle” toy. Bless his heart, he slept through a diaper change and putting on his pajamas, Daddy carrying him upstairs to bed, AND putting in the tube to give him a feeding while he slept. We don’t like to do that because of the whole reflux issue (well, that and the fact that Nik nearly strangled himself one night by getting tangled in the tubing). So I sat in his room in the dark for an hour as Nik had dinner. It was only 4:30 in the afternoon.

After a slightly bumpy early part of the night —Nik woke very fussy around 6:30 pm and continued to cry and fuss for an hour and a half straight —Nik eventually settled in for a solid night’s sleep. Wish I could say the same. My cold made it challenging to breathe much. I am not sure if it was the cold medicine I took or the small glass of wine I had at dinner, but I had the MOST BIZARRE dreams!

I dreamt I was pregnant (um, not even possible!) and that the baby was kicking me in the kidneys. Donald Trump was my OBGYN and he was trying to induce labor by doing some very unprofessional things to my breasts. EEEEEEEEEEWWWWWWWW. I woke up feeling not only weirded out but even more ill! (Shudder). I gotta stop reading those trashy novels while under the influence of cold meds, apparently!

So, over here at sleep-deprivation, high-frustration central, we’re hanging in there…and waiting for the centipede’s dance number to end.

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I’ve been thinking a lot today about Susan’s post on The Family Room today. She really captured the essence of where we are in our lives right now —sort of. We are very far along the acceptance curve but are still somewhat in “siege” mode, too. It’s a strange and uncomfortable place to be. I so often find myself teetering on the brink of full-on acceptance and being able to simply adopt new routines and adapt when and where we need to. I’ve been able to work out regularly and have managed to lose 40 pounds —nearly half of the weight I’ve put on over the years since Nik’s birth. Stress is a horrible, horrible thing if you don’t create healthy outlets for it —but that’s a post for another day or perhaps even another blog altogether.

Then, there are days like today when my adrenaline flows and I am in my battle regalia.

Today Nik woke up very congested AND runny, coughing, feverish. In short, a sick little boy. Well, at least we think he’s sick. It might possibly be a strong reaction to the DTaP booster he had to get on Thursday. It is part of the ongoing evaluation of his immunodeficiency. Yes, Nik the human pin-cushion has to get jabbed with needles way more than anybody should have to. And we still don’t know the extent of his immune function. The immunologist on call today said, “Well, it is most likely just a reaction to the shot…but it could be an opportunistic infection trying to take hold what with his compromised immune system.” WTF…thanks, I needed that like a hole in the head today.

Going back to Susan’s post, I found myself nodding my head “yes, yes” as I re-read the bit about “a simple cold can throw us all into chaos” and wondering when, if ever, I will be able to stop getting anxious over every last little sniffle or cough Nik has. I hate that such a thing has the power to jerk me right back to the panic of all the months in the NICU. The times we were sure Nik was off the ventilator for good, or had turned some corner then…BAM!

On days like today I feel like I haven’t come nearly as far as I think. I hate that I let it distract me from other things I need to be paying attention to. I become obsessed with finding the answer, the “fix”, the “cure” for whatever physical ailment is standing in our way.

Arrogance? No, desperation.

I really need to be focusing on something else right now —getting ready for a non-IEP IEP meeting on Tuesday morning. That stirs the siege mentality/feelings, too; after a pretty mediocre school year for Nik, it feels like we have to get this one right. This one is a biggie; this is laying some significant ground work. We are meeting with the IEP team plus the district autism coordinator and the psychologist to discuss their evaluation of Nik. We’ve put in calls to both of them to ask for a private conversation before-hand but have gotten NO RESPONSE. I would rather have some vague idea of their general thoughts so as to not be blind-sided in the middle of an IEP meeting. I hate when that happens because I get caught in the emotion and get stuck there. It is not useful or helpful for Nik in any way and I have learned —the hard way—not to operate from that place if I can help it.

To that end, when the school case manager called to schedule the IEP —at which neither PT nor Speech will be represented (WTF, I didn’t agree to that!), I told her that she should absolutely not plan on walking away with anything vaguely resembling a signed IEP. I want this meeting to be a discussion about Nik’s needs and classification and placement (possible school change may be on the horizon. We have very mixed feelings about that!) and that we would need to reconvene for his official IEP later.

Just in case, though, Niksdad and I are preparing a list of the things we want incorporated into Nik’s IEP, including the rationale supporting the educational necessity of each item (e.g., “supports independent living,” “necessary for safety,” or “supports LRE”…those kinds of things). For each one the school denies or doesn’t address, we will follow up in writing and ask for explanations. I’ve been reading Mom Without A Manual lately and have been taking some notes based on her recent experiences with her school district.

I keep telling myself that if we can get through Nik’s IEP for next year and are able to get him the supports he needs (which includes a 1:1 paraprofessional full time), I can let go of the fight or siege mentality and begin to settle in and simply BE Niksmom and Niksdad’s wife. Pursuing my own longer-term interests will have to wait a little longer —and I’m OK with that. Right now, I have two guys in school who need my unwavering support. Nik needs me to fight for his rights until he can do so on his own. Niksdad needs me to believe in him and support him in his very challenging career change from engineering to nursing. He is working toward the ultimate goal of becoming a pediatric nurse anesthetist; it’s a long road but he is brilliant and dedicated. He is building a new future for us so I guess you could say he too must feel under siege sometimes.

Lest I get stuck in the bleakness of the kaka going on today/this weekend, I have had glimpses and reminders of all the progress Nik has made and continues to make every single day. The continuing efforts to communicate with those around him, the easy laughter —often at appropriate moments, the physical shifts toward more standing and attempts at walking, the music, the kisses to the “other boy” each time he passes a mirror, the sippy cup with the straw, etc. Those are the things which pull me back from the brink of despair when I am besieged with Nik’s latest illness and the worry that it will turn into something bigger, the IEP planning, or the discovery that Nik has not had ANY speech therapy at school since the June 1st. Yes, I have to take a deep breath and allow myself to focus on the here and now.

Unlike some couples, we haven’t yet figured out how to make time for too many dates or conversation that doesn’t revolve around Nik, school, or work. But we’re getting there in baby steps. Regular workouts, sitting down to dinner together, making time at least one day each week for a family outing of some sort. Like Susan said, “It’s small, but it’s progress, and that makes it feel huge.”

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