Archive for the ‘gratitude’ Category

Bogey Men

I stand watch over my fitfully sleeping son; he writhes and cries out in anguished tones though his body is not consciously awake. His eyes flit open for a moment, resting upon my hands perched on the crib rail. With a wail, he reaches out to hold my hands, pulling them to his head. He sandwiches his head between my palms, wordlessly asking me to apply pressure to make his pain go away, to make it all better.

I stand thus for nearly thirty minutes —shushing and stroking his head gently with my thumbs. The height of the crib and his position —farthest away from where I am standing —make the effort excruciating for me. My arms begin to ache and my lower back throbs in protest of this ergonomic torture.

The feel of Nik’s delicate, long fingers clasped around mine reminds me of how lucky I am to feel this physical pain. I am here to ward off the bogey men which plague his sleep; he is here, clinging fiercely to his mama —his need and his trust writ large in his now open eyes which meet mine in the dim light from the streetlamp outside.

He is here.

I weep with gratitude and guilt.

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Today being Earth Day I’ll bet you’re expecting a post about that, right? Well, you’d be mistaken. Sorry. Nope, today I am off to a quarterly meeting of the Inter Agency Coordinating Council for my state’s birth to three/early intervention programs . It’s one of those large bodies which meets every three months to discuss the state of early intervention services from every conceivable angle —and believe me when I tell you there are angles I never even imagined existed!

But more important than the mere fact of my attending this meeting, what I really want to share with you is the fact that I am attending. You see, since we took Nik out of school in the fall, I have missed the last two meetings because I couldn’t find appropriate child care and I couldn’t take him to the meeting. I mean, sure he’s cute and all but he is also extremely high maintenance and would be a complete disruption to the very vital work of group.

It sure makes it tough when parents of special children can’t find meaningful ways to contribute to our communities all for want of appropriate care for our kids. I really thought I was going to have to resign from my three-year term; we aren’t planning on putting Nik back into school in the foreseeable future and Niksdad’s school schedule precludes him from staying with Nik. Nik’s medical needs, while certainly not as onerous as they once were, are still great enough that he would require a licensed nurse to provide care. There is a special day care where I could pay to leave him for the day but I am not comfortable leaving him somewhere for an entire day without knowing who is taking care of him and what they are capable of handling should the need arise. Nor do I want to be across town in case of an emergency.

When I brought my concerns to the executive committee of the council, I truly expected to hear “Gee, we’re really sorry, Niksmom. We hate to lose you but we understand.” What I actually heard instead was “Gee, we’re really sorry Niksmom. We had no idea that we were making it so difficult for valued members to participate. How can we support you to feel like your son is well cared for while still close at hand and you are able to participate fully?” I was completely stunned.

After all these years of feeling so isolated —first because of Nik’s medical needs which dictated extremely limited contact with others for two years, then because of the frustrations of trying to find our place in this world of “normal” which doesn’t seem to quite fit most days —well, you can understand the relief and gratitude I felt. It didn’t even matter to me if we couldn’t find a solution; what mattered was the effort.

The effort paid off richly. I am soon going to be loading Nik and a metric ton of his gear into the car and taking him with me to what will be the first of our quarterly meetings together. The state birth to three organization director has rented an extra room in the building and my friend S —who knows Nik well, is going to entertain and occupy my little tornado just down the hall. I can slip in and out of the meeting to start Nik’s tube feeding and give him meds, I will be close at hand if he completely falls apart for some reason, and I am comfortable with the whole set up.

If only the rest of the world were so understanding, so aware of what we parents of our special children have to offer.

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If there is a load you have to bear
That you can’t carry
I’m right up the road
I’ll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you’d understand
We all need somebody to lean on

Lean on me when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
Till I’m gonna need
Somebody to lean on

“Lean on Me” ~ Bill Withers

Photo courtesy of Treklens.com

I am overwhelmed with the outpouring of offers of specific, tangible support I am getting from people in response to this post. It is humbling and heart warming. My knee-jerk reaction is to graciously say, “Oh thank you so much but I really couldn’t impose.” Yet, all my life, I have longed for the kind of community which is now rallying around me; I would be stupid —and a jerk— to turn it away.

My upbringing was such that I was admonished never to make a nuisance of myself. It certainly was not acceptable to burden others with my needs and any request I might make was sure to be an imposition. Accepting help from others is not easy for me; I have always been the listener, the advisor, the fixer of broken things and solver of problems. I even managed to make a profession out of it.

I once managed to find the laptop an old boss thought had been stolen off a plane in Chicago en route to Switzerland. He needed everything on it replicated for a meeting he was scheduled to have 36 hours later. I got him the new computer in the nick of time —data and all (thank God for corporate system-wide backups!). I also managed to have his old laptop in my possession the same day. Oops, he had (I suspect had too much to drink and) “forgotten” it when he changed planes in Chicago. A very savvy flight attendant picked it up and secured it in his locker until his next shift so he could turn it in. I sent him a lovely thank you gift from my boss.

I tell that story not to boast —though it was one of my more challenging feats (for the same boss whose family I relocated from Norway and whom I took for a driver’s license test after he broke his shoulder skiing in Canada. It was great preparation for motherhood, I must say). It simply illustrates the degree to which I have had to be self sufficient. I have had to work hard to earn the respect of coworkers who thought I was too young or inexperienced to handle the level of responsibility I was given.

I don’t let myself fall very often so when I do I usually do it quite spectacularly. The world comes crashing down around me and everything grinds to an abrupt halt. Well, it used to in my time BN —before Nik. Now I realize that I need to simply reach a hand up through the quicksand and, even if I can’t see the face it goes with, hold on and accept the hand up. It’s still difficult for me not to feel like I am imposing on others’ good will but I am practicing.
All the moms —and dads— who have reached out to me so often have made it safe for me to not think I have to be be Super Mom or Woman of the Year. You give me a comfort zone in which I can practice asking for —and actually accepting— help. That is a gift I did not expect to find in this arena. But it is one I treasure greatly.
The more I accept the more I have to give.

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Because I don’t believe it is possible to live in a constant state of despair or euphoria —whether by Divine design or the laws of physics, nature, or what have you — I am pleased to report that we had a good night last night! Nik slept through the night —mostly. He really only stirred a few times and I didn’t actually have to get out of bed to go to him. Wow.

I absolutely attribute that progress to the power of prayer and positive thinking which has flowed forth from all of you in the past few days. Yesterday wasn’t any better than previous days and yet Nik slept like a rock last night. I even took some time yesterday afternoon, while the rest of the household was sleeping (Nik and both cats —all nestled in their respective places) to do something utterly mundane and completely normal. I baked cookies! Did I have any special occasion which required them? No. Did I want to eat them? Well, duh, of course —but that wasn’t my motivation. I just needed to feel normal for a while.

This is close to the time of year when I start baking and creating goodies to send to the army of doctors, nurses, therapists and social workers back in California and here in Delaware who helped pull our family through those many dark months after Nik was born and who have so impacted our lives since then. Such a simple thing really —the baking and making of goodies —and yet it is the only thing I feel I can do that is from my heart and my hands to say “thank you” no matter that it seems trivial and inadequate. But it’s too soon to do that just yet.

Huh, it occurs to me right now as I write this, maybe I made those cookies for YOU! My way of saying thank you for holding our family in your hearts as we struggle to find answers for Nikolas. Um, I only made a few dozen so you may have to share…


While the “children” were nestled “all snug in their beds,” I did take some time yesterday to do more research. Somehow, I stumbled across some information that just clicked. It doesn’t exactly address the root cause but it puts all of Nik’s symptoms into a context which makes so much sense and points to some possible avenues for further exploration. I am going to talk to Dr. Mary about it at some point today. She called Friday night and we are going to start scheduling some testing for Nik while she waits to get something scheduled with the diagnostic group.

It’s not answers and resolution —yet. But I feel more hopeful and so much less alone in this than I have in a very long time. Thank you for your kind words of support, your prayers, your personal emails. They really do make a difference.

Today, my heart feels lighter. I’m going to revel in the feeling and use it to continue the forward momentum.
…or maybe just revel.

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You can do it, all you need is a hand.
We can do it, Mama is gonna see to it!
Curtain up! Light the lights!
We got nothing to hit but the heights!
I can tell, wait and see.
There’s the bell! Follow me!
And nothing’s gonna stop us ’til we’re through!
Honey, everything’s coming up roses and daffodils!
Everything’s coming up sunshine and Santa Claus!
Everything’s gonna be bright lights and lollipops!
Everything’s coming up roses for me and for you!

(“Everything’s Coming up Roses” from GYPSY)

Woo Hoo! Time for a happy post and a happy dance!

As you know, I’ve been in that nasty ol’ rabbit hole lately and trying my darnedest to claw my way out. Of course, all the cyber ice cream probably didn’t help! Just makes my butt bigger…but I digress from the H A P P I N E S S I want to share with you all.

We had our appointment with the immunologist today; I’ve been really worried about this one since Nik’s been so sick for the last year and it doesn’t seem to be improving. Both Niksdad and I have been imagining the worst-case scenarios; it’s not a difficult leap to make for either of us, given what we have been through since Nik was born. Well, the doctor gave us some wonderful news today —Nik’s immune system has done significant catching up! While his immunoglobulin levels are still slightly low, they are at least I the normal range for his age group.

This is very good news, indeed. It means Nik’s immune system has been developing the proper antibodies in response to illnesses and from the booster shots he’s received. In fact, the doctor said he didn’t think we needed to worry about having Nik around lots of kids (as in a school/daycare setting) anymore. He thinks that Nik may have been so ill this past year because it was Nik’s first full-scale exposure to lots of stuff —ever.

Until Nik made it safely through his first two winters at home, we had to be super-cautious about exposing him to illnesses which could cause major respiratory setbacks. Since Nik’s first winter was spent in the NICU, his first real exposure wasn’t until the spring of 2006. He started school in June 2006 and has been sick off and on ever since. Most likely, he simply hadn’t had the time most toddlers have to build up antibodies before getting bombarded in a school setting. (Hmm, yet another affirmation of our decision to remove Nik from school this year; he’ll have a chance to develop greater immunity at a more normal pace.)

There’s a bonus. Not only is this good news from a health perspective; it means that Medicaid cannot force us to use the letter of medical necessity from the pediatrician which states that Nik shouldn’t be in school due to concerns about his health. The issue has become moot. “Why is this good news,” you may wonder? Well…

It means we can proceed with our plan to cut school out of the picture entirely and not have to worry about Medicaid trying to force them back into it. That would just be a legal quagmire at this point and we are not prepared to go there; we’d much prefer to spend our time and energy living our already too full life and working with Nik —playing, teaching, encouraging in the ways we know he thrives. Plus, with Niksdad in the clinical phase of his nursing school experience, I’d pretty much have to shoulder the burden of preparing for a legal fight all on my own. Um, no thanks.

But wait, there’s more! (“Yes, if you act right now, you’ll get this amazing set of Ginsu knives free…”) While I was out getting my shaggy mane cut, colored, fluffed and puffed this afternoon, Niksdad called the case manager at Medicaid to tell her about the immunologist’s report. We felt we had to be fair so she didn’t waste time trying to work an angle that would only lead to heartache for her. OK, that and the fact that we would be opening ourselves up to a potential charge of fraud (by the school district) if we proceeded to present the letter of medical necessity to school —thereby forcing them into providing services —and withheld the knowledge we gained this morning.

As you might imagine, Miss Case Manager wasn’t thrilled about it but she certainly understood. She’s actually a very lovely person and also a mother of two small boys so she completely understood the relief we felt; she also appreciated the medical expenses that were neatly avoided in Nik’s not having some sort of autoimmune disease! Miss C.M. has assured me all along that Nik’s best interests were being considered and that he would indeed be taken care of; I was afraid to trust her.

Today, I humbly admit I was wrong.

Apparently, this week while I was wallowing in the rabbit hole (well, it was dark and cozy down there), Miss C.M. was diligently following up with her supervisor, their compliance department, and the state director of Medicaid this week. They all agreed to authorize services for Nik in all areas —PT, OT, Speech, and Feeding therapies —for another TWELVE WEEKS, once per week in each area through the end of January. When Niksdad told me this, I cried tears of relief and joy.

I then promptly called Miss C.M. to thank her profusely. See, piss me off or —worse —screw with my kid and you’re on my black list; it will come back to bite you some day. Take good care of those I care about? You have my sincere gratitude and willingness to make sure you are recognized for your good deeds. Miss C.M. told me that once the therapists are nearing the end of the twelve weeks, they just need to submit for more authorizations; she said it most likely wouldn’t be a problem to extend them. Whew! Miss C.M. earned her place in my heart today.

While the 30 minute sessions per week aren’t necessarily as much as I think Nik could really benefit from, it is significantly more than he would be getting through school. I also know that I will attend and participate in each session and learn what to do at home. The value of the carry-over at home is significant; it is not something we ever got from school in spite of our asking numerous times. Besides which, I can now stack appointments on just a couple of days a week, leaving time available to do things like go to the park to meet Mom2Rebels, drive north to meet Irene, take Nik to the zoo, go swimming, take a music class, play in the leaves outside, nap on the floor of Nik’s room —whatever our hearts, mine and Nik’s together, desire.

Tonight, I feel like a tremendous weight has been lifted from my heart. I am filled with hope and joyful anticipation again. There are still hills to climb and unknown challenges ahead, I know. But for now the road ahead looks clear and smooth and I see a glimmer of a rainbow in the distance.

Image Courtesy of WallpaperDave.com

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“You are what happened when I wished upon a star.”

Circumstances may be difficult right now but LIFE is good.

I have my health.
I have a wonderful husband who is working his butt off to make a new career and new life for our family.
My child is sweet, funny, intelligent, charming, adorable, determined, and a great problem solver.
My family is loving and supportive (for the most part).
I’m a smart, resourceful woman with a whole slew of fab new blogger friends who support me through the tough times and celebrate with me in the good ones. You, my friends, are mothers and fathers who have walked this road ahead of me with varying degrees of struggles and successes and you aren’t afraid to share the lessons learned. Thanks!

And we can always change our mind and sue the pants off of the school district! Heh heh heh… (“Did I say that?”)

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Yeah, I’m gonna take that mountain.
Ain’t nothing gonna slow me down.
And there ain’t no way around it.
Gonna leave it level with the ground.
Ain’t just gonna cross it, climb it, fight it:
I’m gonna take that mountain.

I was born a stubborn soul;
This is just a stumblin’ block;
I’m gonna take that mountain.
—Reba McEntire

I had hoped to post this on the 2nd. But, wow, life keeps coming at me faster than I can duck and dodge lately, it seems. This post has been “in progress” for a couple of days now. Had a few things keeping us on our toes recently, as you may recall!

What, you may ask, is the significance of the 2nd? It was Nik’s 45-monthiversary. Yeah, I know, you don’t usually count the months after they reach a certain age. But since Nik was born, on the second of every month I stop to celebrate the miracle that is my son. (For those of you trying to count right now, Nik was born on December 2nd.)

Last night, after Niksdad and I finished filling out a sensory profile for school (yay, they are finally taking us seriously about the sensory issues!), I sat down and typed out a quick list of some of Nik’s accomplishments over the past couple of weeks. I also did some serious reflecting on where we’ve come together as a family and what Nik has been through as a human being. I got so overwhelmed that I couldn’t write anything

Try as I might, I still cannot bring myself to write in any coherent fashion about the events leading up to Nik’s delivery by emergency C-section or of the 209 day s we spent in the NICU. Sure, I can share the specific statistics of Nik’s weight, length, Apgars (which were 9 and 7), his diagnoses, and his surgeries. I can share funny anecdotes about my son and interactions with other people. What I cannot yet write about —not even for myself — is what I went through. The emotions are too raw. Too real. Too close, still.

How can you capture the essence of one’s personal experience in the aftermath of being told not to plan or celebrate your child’s birth yet beacsue he may not even make it through the night? The implications of receiving such advice are staggering still. There are some things which one cannot write about until many, many years after the fact; I guess this must be one such for now.

In any event, I can —and do joyfully —share the incredible growth of my miracle child. Unlike the last party I threw, this one is full of joy and laughter —and overflowing with love and pride. I hope you’ll join in the festivities!

At one month old, Nik’s feet were a mere 1 ¾ inches long —smaller than the bowl of a common table spoon (not to be confused with a Tablespoon for measuring). His limbs were so small and fragile. Nik’s entire arm was the size of my index finger; my husband’s wedding band fit all the way to Nik’s elbow. He had gone through the first of his numerous surgeries at the tender young age of 19 days. Nik hated to have a wet diaper; one of the first things he learned to do was curl his foot to confuse the oxygen sensor attached to it. When he needed a diaper change, Nik would curl his toes and the nurses would come running to see what the alarms were all about. Even then, Nik was exhibiting some pretty amazing smarts!

Fast forward to today. Nik has been through numerous surgeries and spent way more time in the hospital than any person ever should. To date, he has spent 18.9 percent of his life in a hospital —most of it in one continuous stretch. That doesn’t include outpatient visits or ER trips. Do the math for your own life; if you had spent that much time in the hospital, what would your outlook on life be like? I am continually in awe of my child’s inherent sunny disposition and his utter confidence that he can do absolutely anything. And he can; the boy is unstoppable!

If you’ve been reading my blog for a while, you know that Nik has made some amazing strides recently —just surf my recent archives for plenty of examples! Here are the latest in what I hope will be a long, continuous line of “amazing and death-defying feats” from my little monkey:

Nik walks. Perhaps not with elegance or grace but certainly with verve and enthusiasm to spare. He climbs like a monkey! The sofa, the crib, the window sill…

We play so much more than ever before. The joy and laughter are no longer one-sided; when I can engage him, Nik participates fully and joyfully.

Feeding is becoming enjoyable for both of us again. Nik’s still not eating but he is making great progress with chewing things he wouldn’t chew before —wash cloths, chewy tubes, Nuk brushes —I think because I am making a game out of it. He is trying so many new tastes and textures, still only licking, but without fighting. If I can encourage his enjoyment of many things, I have confidence that he will actually eat them one day.
Nik is now making so much more eye contact more consistently. He laughs appropriately (sometimes not) and is beginning to initiate contact and communication in his own way. Lately, it seems there has been a communication explosion. Nik takes my hands to guide them down to his tray when he wants to get out of his chair. To his lap belt when he wants out of the stroller. To the gate when he wants to go through.

Nik is beginning to communicate more with his voice. While the words aren’t there, he makes sounds that are the tonal equivalent of “No” or “Mo-om!” —you know, in that admonishing tone. Same thing for “up” and “out”, both sound similar but he uses them in the correct context quite often He will approach Niksdad and make a “raspberry” when he wants to play with him (the “fart” song I mentioned here). He will hum the tune of “Wheels on the Bus” when he scoots over to be brushed, “Row, Row, Row your boat” when it’s time to brush teeth. He gives kisses now with a smacking of his lips to the air before he tips his forehead to my lips.

Nik is wearing his glasses more; it’s still a battle sometimes but when he is engaged in an activity he forgets he has them on and will wear them for up to 40 minutes at a time. And speaking of being engaged…Nik will stay with an activity for anywhere from 20-40 minutes now (with prompting and interaction w/someone). It used to be less than one minute!
My once fragile and sickly little child has become strong, strong, strong. He goes on and on like the Energizer Bunny on steroids! The other day, he tipped over his Kimba seating system. The thing weighs roughly 50 pounds! Slow is not in his vocabulary; he’s got things to do and “lost time” to make up.

And did I mention how smart he is? Seriously. Nik isn’t terribly interested in playing with things “appropriately” but if you give him leeway to explore and examine something? He will figure out how it works in the blink of an eye. Sometimes he doesn’t seem to realize that he has all the information to put his skills to work and then…BAM! Just like climbing out of the crib. And he knows the deadbolt on the front door is the thing that keeps him from getting out. —for now anyway! I am already trying to think two steps ahead to solutions for the day —coming very soon— when he realizes he can open that door to a great big world.

I hope the world is ready for Nik.

Ready or not, here he comes!

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