Closer to Home

The sun will rise as sure as there’s a day time
Don’t worry ’bout a thing….in time you’re gonna see
Your life is everything you make it
The hard times never last
Trust in your heart and don’t look back

“It’s Gonna Be Alright” (The Cheetah Girls)

As summer begins to wind down and the start of the school year is around the corner, my heart has been heavy at the prospect of Nik’s upcoming IEP. Niksdad and I already know that school is not willing to budge on some things —most notably a one-on-one paraprofessional for Nik. Their stance is that Nik is at an age where he needs to be able to generalize his learning and not rely strictly on one individual. The concern they raised, in our non-IEP meeting in July, is that Nik is smart enough that he may find ways to not pay attention to the actual teacher but look to his para for validation instead. In addition, the principal feels very strongly about educating the entire staff about Nik’s subtle seizure activity and promises that there will always be eyes on Nik. The principal is new to the school as of early July so I have to cut him some slack for his incredible naiveté. I know from first-hand experience that there are not always eyes on Nik and that there are times he has been virtually ignored by “seasoned” paras who were sitting right next to him in circle time —singing and gesturing their hearts out as Nik sat between them, ignored and not participating.

I know that my son has some very significant educational challenges and that the teacher really believes Nik has incredible potential; she just doesn’t have a clue how to “unlock it” (her words). I have tried my best to be helpful in relating my own observations and insights about what has worked with Nik. I’ve had countless conversations with the OT about my suspicions about Nik’s sensory issues being at the root of his extreme attention and regulation challenges. For whatever reason, my words seem to fall on deaf ears. This has often been the case with medical professionals as well; Niksdad and I persist and persist until, finally, Nik reaches such an extreme state that the doctors give in and investigate the things we’ve asked them to. Many, many times we have been proven right.

Righteous vindication doesn’t feel very good when you are watching your child suffer. Or regress in skills or fall further and further behind his peers when he once made such rapid progress that therapists were amazed at how quickly he learned.

With those things in mind and with the rapid and marked progress Nik has made in just a couple weeks of intensive work with his new OT and PT, Niksdad and I have decided it is time to pull Nik out of school. I’ve checked all the legalities with the Department of Ed (DOE); Nik isn’t required to be in school until he is five. Even then, it doesn’t have to be a public school, just “an educational program.” Our situation is such that Nik qualifies for significantly increased services through his Medicaid so we don’t have to worry about too many out of pocket expenses for therapies. As it is, the insurance has already authorized a 100% increase in his OT (from one session to two per week), a 200% increase in his SLP, and a 300% increase in OT. This means that Nik will now be getting the level of services which were recommended by multiple independent evaluations done over the past 12 months.

Sure, we could keep Nik in school and add the therapies on top of that, but we have to weigh the cost of that against the quality of life for Nik and for us as a family. He is simply too young to be spending every waking hour in some sort of rigidly structured activity. Seven hours of school each day —20% of that spent confined to a chair for tube feedings, plus another two hours of therapy daily (including travel time) —home just in time for dinner then bed (since Nik doesn’t nap much at school and cannot stay up much past 7p). Then throw in the time missed from school for doctor’s appointments…It’s just not realistic to expect ANY 3 ½ year old child to tolerate that much without some serious PLAY —let alone my little Energizer Bunny to the Nth Degree. The more we thought about it and talked about, the easier the decision was to make.

To say that Niksdad and I are excited at the prospect of Nik’s inevitable progress would be a gross understatement. Plus, the idea of not having to wrangle with school over every last little thing —the classroom staff about feeding, nap, and communication about Nik’s day, the school nurse over every last little tweak to Nik’s tube feedings, finding out the hard way that they ran out of diapers or some other supply for Nik, etc —feels like another headache mitigated.

I know it will be a challenging transition for us —Niksdad begins his nursing clinicals in another couple of weeks and will have very little free time (especially after putting in hours at Home Depot, too!) and I may feel slightly (a lot?) overwhelmed at first. But it also feels a bit like I finally get a shot at the “new mother bonding” that I didn’t get when Nik was born. By that I mean that he and I will sort of feel our way through it together. We’ll figure out a new schedule, new activities and adventures. I have already begun to set up a regular therapy schedule for Nik — the same time each day for OT and PT —and we’ve gotten insurance approval for the developmental playgroups, too! Imagine —built-in play dates! I have visions of finally being able to do the things that “the other moms” get to do —Mommy and Tot swimming, music class, toddler story hour at the public library. Walks in the park with other moms, the occasional shopping trip with a friend and her kids — things we couldn’t even dream about doing before because of Nik’s school schedule. And it’s not like I will get another chance at this gig…

I think I may become less angst-ridden about my own future as well. Niksdad and I had a long discussion about him being the sole income earner; he finally gave me “permission” to let go of my guilt about not contributing financially. I no longer have to think about rushing out to get a job —any old job for income — unless or until the time comes when Nik is ready to go back to school and I have an idea of what will make me happy. Have I mentioned how much I love and appreciate my husband? I DO.

I will no longer have to schedule my workouts around Niksdad’s or Nik’s school/work schedule quite as rigidly. I now have the freedom to put Nik in the childcare area while I work out and get a little “me” time. What a concept! I know my own mother is anxious that I will become more overwhelmed and exhausted, but I truly feel this is the right decision for us.

We will figure it out and find a new equilibrium. Just as we did in those awkward and terrifying first days at home after our 209-day NICU stay. I think we’ve done fine so far. In fact, I’d say we’ve done very fine, indeed.

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Maytag Mom

Today’s post is from a special guest blogger, Samtra K. Devard. I have the privilege of knowing Samtra through some work we have done (and continue to do) to help make the family voice, perspective, and experience a part of everything we do in our state to educate the service providers, current and future educators, and medical professionals who care for our children with special needs. Samtra has been a tremendous inspiration to not only me but to a large number of parents. She is a passionate advocate for children, including her own three beautiful kids —one of whom has Down Syndrome, and she works tirelessly to create greater opportunities for inclusion for all our children. I am proud to know her and to call her friend.

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Everybody knows the commercials featuring the Maytag repairman. This is the guy who has nothing to fix. Of the millions of washers, dryers and dishwashers that are sold – the guy who was hired to fix any problems that Maytag appliances may have, has nothing to fix.

Surely there is something that he can fix. Yes, only if something is broken!

Just like the Maytag repairman has nothing to fix, Mom’s of children with disabilities have nothing to fix. We are in essence Maytag Moms.

Many of us are given a diagnosis for our kids and a laundry list of all the things that are wrong. We are presented with scenario after scenario of circumstances too bleak to contemplate.

The problems that face children with disabilities and their families sometimes seem endless. And for many who are faced with a problem – the natural tendency is to fix it.

A wise woman whom I love and respect once told me it took her a long time to figure out that her role in her daughter’s life was to NOT to “fix” her daughter, because she wasn’t broken. Once she learned that, she was able to come into acceptance of what is – and find peace with that. To function in a mindset that is about maximizing potential and life chances, rather than fixing the problems of a “broken” child or family situation is so much more meaningful. The Maytag Mom is expending valuable energy trying to fix something that isn’t really broken.

Broken means out of order, not working, damaged, ruined, destroyed, defeated, dejected, crushed, dispirited – without hope.

Our children are anything but broken.

The sooner we stop trying to fix the situation or our children, the sooner we can begin the healing process and begin to function in a positive, less energy draining way.

I have learned I am a Maytag Mom. I having been doing all I can to fix things. Acknowledging this has been so profound for me. It’s taken a lot of soul searching in a short period of time to realize that no matter what – we have some circumstances that just are what they are. Nothing’s broken.

The good news is Maytag Moms are good at what they do and can redirect their energies to things that are about building and growing and uplifting. We can do with our lives what was intended – to live and love to the fullest. Love our children and the joy they bring. Resist any temptation to fear the unknown about what lies ahead. Certainly, what the Moms of children with disabilities face can be different than if our children didn’t have a disability – but guess what there would still be something to deal with; just a different something.

But I believe wholeheartedly that the heart, energy and passion of the Maytag Mom is why God blessed our lives in such a great way. Reminding ourselves of the blessings during times of turmoil all around us becomes the challenge.

Maytag Moms – there is a great future ahead!

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On the road again

We’ve been through some things together

With trunks of memories still to come

We found things to do in stormy weather

Long may you run.

~Neal Young

Wow, who knew there were so many of us on this same journey?! Thanks everyone for not only your supportive comments on my existential crisis, but especially the reminders that “this too shall pass” (eventually). I guess I’ve gotten so used to worrying about something that it was inevitable I would turn my radar inward to myself and my marriage. Not a bad thing to do every once in a while, I guess.

Things are looking brighter these past couple of days. Niksdad seems more relaxed —now that he’s embraced the “no work for two weeks” concept. He’s been taking Nik to the park in the mornings after breakfast; giving me a chance to get back into my workout routine which has been interrupted by first Nik’s then my illness. It’s felt really good to get out of the house to do something that makes me feel more vibrant afterward. Sweaty, but vibrant.

We’ve made plans to take care of some projects around the house —big ones, like replacing the yucky carpet in the family room with some sort of wood laminate. The family room is where Nik spends a great deal of time and it takes a real beating. The carpet is ugly and stained and I don’t even want to think about what’s possibly growing underneath! We won’t be able to do the actual work until Nik goes back to school on the 22nd. But, the process of planning and making flooring selections —which of course leads to discussions of other projects —has felt good. It feels reminiscent of the early days in our marriage when we would tackle projects together in our first house —the one in CA, where we lived when Nik was born. We were partners and made a great team.

In fact, we still make a great team; everybody remarks on that and tells us how lucky we are. They are right. We’ve had to shift our focus quite a bit in these past few years but we’ve always worked well together —planning, discussing, researching, strategizing, dreaming together, and inspiring one another. Maybe we took our eyes off the road for a little bit but I think we’re on the right track.

It’s a bit like all the times I’ve been on a car trip by myself (in the olden days before Niksdad came along). I’d be off on an adventure, driving down the highway —not always toward a specific destination. I’d look down and the gas gauge would read near empty and the next exit wouldn’t be for miles and miles. I’d drive along, darting anxious glances at the fuel gauge every few seconds, wondering when I would run out of gas on some lonely stretch of road. Know what? It never happened; I always made it to a gas station in the nick of time.

I need to remember that more often when I get antsy about my life —especially my marriage. The frustration, though, of not being able to have consistent time alone together gets tough. Unfortunately, we aren’t exactly in a position to shell out bucks for specialty care givers —which are VERY hard to find around here. In fact, there’s such a demand that no one with the right qualifications wants to work the small number of hours we need. The respite system in our area is the pits for us right now. Medicaid doesn’t recognize the need for couples to go out once in a while as legitimate. If I worked or were in school, then they would consider our eligibility. The only drop-off respite we’ve been able to find doesn’t’ work with our schedule and our needs. So, we limp along with the help of my folks for now. During the school year I think (I hope) it will be a bit easier; some of the Para’s also do childcare/respite once in a while and I know lots of them!

Meanwhile, though, we’ve been making plans to do some things together as a family; things like a return trip to the beach, a trip to the zoo, a local peach festival this weekend, the pool at my parent’s country club in the afternoons (weather permitting), and a trip to a new “Can Do” playground which opened up about an hour north of here, near the hospital where Nik sees all his specialists. We might even try XBos again!

It feels like a time of renewal somehow. Maybe not quite what I had envisioned —you know, candle light and romance —but perhaps better, more important as we, Niksdad and I, learn to make the most of the precious time we do have together. Time that must include our son right now.

Long before Niksdad and I got married, I wrote a vision for myself of what I wanted our marriage to be:

Niksdad and I have a loving marriage and raise healthy children in a warm,
loving, creative, and stable home. Our relationship touches the lives of
many as we open our hearts and home to many children. Our love helps heal
others.

Deep, huh? It may not look quite the way I had envisioned it all those years ago, but perhaps we haven’t lost our way after all. Maybe I just need to check the map every once in a while to realize that the wrong turns or missed exits will still get us to our destination —wherever that may be. And if I let myself, I just might enjoy the ride.

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Keep on keepin’ on

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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Why put off ’til tomorrow…?

I am procrastinating —one of my favorite and most accomplished pastimes. My head is swimming with non-IEP details and paranoia about tomorrow’s meeting. Niksdad didn’t help last night when he started getting snippy about the school nurse, Nurse J, and whether she was going to challenge every last little thing we bring to the table. Probably. But I’m not going there just now, thank you. Instead, I’ve been perusing all my bookmarked blogger friends and discovering some new ones, too. Hmmm, that reminds me that I really need to update my links on my page to reflect ALL the wonderful blogs I read, not just the first ones which drew me into this fabulous world.
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I’ve been thinking a lot this morning about the future and about friends —again. I’ve written about some friends here and here, but today I have different one on my mind. Possibly my dearest friend in the entire world, C. First some background —C, Calvin, and I all lived together in our “salad days” in Boston many years ago. Well, actually, it was in Melrose and we really didn’t eat much salad. Lots of macaroni and cheese and iced coffee as I recall. Anyway, we were thick as thieves but different as night from day; there was a deep bond and nearly psychic connection between us but our paths in life were vastly divergent.

C was the former-beauty-queen-turned-banker (really, she participated in pageants in her home state as a teen. And she is still beautiful.), Calvin the spitfire, gamine with a quick wit and talent for writing (especially plays for stage and screen; she had a tremendous knack for storytelling and great dialogue). I was the musician who wanted to be an educator. Somehow, life took us in directions we never quite envisioned and we went our separate ways to marriages, new jobs, and new efforts to reinvent ourselves.

C and I have always been close. Our birthdays fall in close proximity, our mothers shared the same birthday (though her wonderful mother passed away some years ago now), C and her husband, Doc, even share the same anniversary as my parents. Their son shares my husband’s birthday. C even had a child with special needs; Angelic little N had a very rare genetic anomaly which proved to be fatal and she died at the age of 18 months after a very valiant fight. The experience brought dear C to her knees. Remarkably, she found the grace and strength to keep moving and living. I admire her so much; I’m not even sure she knows it.

It has been many years since C’s angel passed away but she is with me constantly. I sometimes talk to Nik in the quiet of evening and name the angels I believe are watching over him; N is always one of them.

I haven’t seen C in a while but she and Doc came to town yesterday —passing through on their way home from a conference in Maine. They could have flown home to VA but it was important enough to them that they get to see us that they rented a car and drove down and spent the night in town. Doc has never met Nik as he was on a National Guard assignment the year we had Nik’s second birthday party and C came alone. Yesterday was special for all of us.

C is still a financial whiz and very successful; Doc is (duh!) a doctor and also very successful. They have a nearly idyllic life with their handsome son (who is now turning into a “tween” heart breaker, I hear!), their large home on many acres in the countryside, family vacations, summer camp, etc. One could say they are living a “charmed” life —depending on your perspective, I suppose. They live each day with the memory of their beautiful daughter and the terrible loss. They use it to fuel them to doing good things for not only themselves but for others. They are wonderful people and I love them dearly.

We had dinner with C and Doc last night; Nik was asleep and my mother came to babysit. It was a beautiful evening with good food, wine, and conversation with intelligent, funny, caring adults who understand what our lives are like in every possible way. The joy and fear, the grief and pain, the hope, the stress, the sleepless nights, the strain on relationships —warts and all.

I’m tap dancing around what I want to say because it’s raw and overwhelming and it’s been on my mind for so long. Deep breath…

Last night we asked them to be Nik’s guardians should something happen to us. It was emotional and scary and so uncomfortable. I mean, who are we to ask them to take on the burden of a child who may need support and services for the rest of his life? A child who has significant medical needs and may spend more time in the hospital where their angel fought so valiantly. How could I ask them to risk the pain of loving and losing another child? For I have no doubt whatsoever that Nik would be utterly loved by them and by their son, D.

Granted, it’s not like we are planning on handing Nik over and saying “Here you go, please raise our son for us!” Of course not; we’re talking in case of catastrophic events here. None the less, it felt strange.

I told C that the reason we wanted them to consider this is that we felt that they would not only be able to care for Nik financially (well, one does need to be practical here), but that they would try to instill in Nik a strong sense of ethics and the value of working hard for one’s rewards. They have what I would call relatively mainstream family values and place a high premium on intellect and creativity. I don’t’ mean book-learning, but one’s innate intellect; I think they would value Nik for exactly who he is without trying to make him fit an ideal of who he “should” be. And they would do it all joyfully and without an ounce of pity for “poor Nikolas.” I’m not sure I can say that about many other people I know.

C and Doc obviously need to think about it and talk it over; it is, after all, a tremendous responsibility. I hope they can find their way to “yes.” I simply cannot see Nik being raised by either of my sisters, nor by Niksdad’s sister. I won’t go into the reasons here but will say that I don’t think any of them would put Nik’s best interests first if push came to shove and they had to choose between Nik and themselves. I think C and Doc could, would do that; they’ve already proven it with their own children.

Kristina recently wrote about doing “the right thing” and planning for our children’s futures. It is something that no parent ever really wants to have to think about yet it is crucial. Like my son’s IEP is the foundation of his educational future —and his education is the foundation for his future life —I must plan for the eventuality of his living life without myself or Niksdad in the picture. If that day should come sooner than anyone anticipates, I will feel like I have done my utmost to assure that his future is as bright, as rich, and as full of promise as it can possibly be.

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"A spoonful of sugar…"

Thanks everyone for all the good wishes…they must have helped Nik dodge the stomach bug “bullet!” Seems he’s fine after just a couple of days of crampy and cranky bouts. I have to wonder if the change in his enteral formula has made a big difference, too. It’s got significantly less dairy and his overall GI health seems better than ever before (knock wood!). I was worried b/c the last two hospital visits (stays, really —a week each time!) have been due to a GI bug that really knocked him down. WHEW!

In any event, it’s been a relatively uneventful few days; that’s always a good thing round here!

I’ve been trying some of the tips that B gave us during the feeding eval. While I wish I could say Nik is eating like a champ, but at least he is eating a bit more and is not fighting me as much. Maybe he is more ready now? All I know is that, for the past few days at least, mealtimes have been much nicer. Still godawful long — 20-30 minutes for oral feeding followed by nearly an hour for the tube feeding then the extra 20 minutes Nik has to remain upright because of his reflux. Multiply that by at least 4 meals a day and, well, you can probably figure out why I don’t get out much on weekends except to the park or for walks with Nik! But it feels like we’re heading in the right direction…bit by bit. Or should I say bite by bite?

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We’ve been avoiding TV in our house for a while (sort of like Kristen’s house, too), but lately Nik has been getting very bored and restless with the usual toys he plays with while the tube feeding is going in. So I decided it was time to try a little distraction. Inspired by a couple of other families (here and here) who have been checking out our favorite nanny, I brought out our Mary Poppins DVD this weekend. I have to say, Nik is quite enamored of not only Mary Poppins herself but finds George Banks to be hysterically funny and laughs out loud when the penguins dance with Burt. Niksdad has even come up with his own lyrics to the “I love to laugh” song (the scene on the ceiling with Uncle Albert) which makes Nik crack up even when he’s crying!

You know the one — it goes “I love to laugh (ha ha ha ha), loud and long and clear. I love to laugh (hee hee hee hee), so everybody can hear. The more I laugh (ho ho ho ho), the more I fill with glee. The more the glee (hee hee hee hee), the more I’m a merrier me!” Nik laughs himself silly over this one! Niksdad, being the manly-man he is, has co-opted this tune for his own silly version which makes Nik positively HOWL with laughter no matter the occasion!

So, at the risk of completely destroying Niksdad’s street cred (he gave me permission!!), his version goes something like this:

I love to fart (thttt thttt thttt thttt), loud and long and clear.
I love to fart (phttt phttt phttt phttt) so everybody can smell.
The more I fart (insert sound effects), the more I fill with glee.
The more the glee (sound effects), the more I’m a pew-pew-er me!

Yep, gotta love my man! (Did I mention he’s a highly educated science-geek type? No, REALLY!)

So, there’s our dirtly little secret. Hee hee hee.

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Ok, on a more serious note, I had a wonderful experience at Nik’s school this morning. I took him early so I could try to wear him out on the playground before breakfast. Um, guess which one of us needed a nap when we were done? Right! zzzzzzzzzzzzzzzzzzzzzzzzzzz.

Oh, sorry, where was I? Right, school.

I ran into the grandparents of a little boy who’s new to Nik’s class, J. J reminds me a lot of Nik when he started school a year ago —won’t bear weight on his legs, doesn’t talk, won’t eat, cute as a button (well, he is!)… He lives with his grandparents who, from what I understand, are basically raising him and his little brother with very little involvement from the mom. I’ve seen Grandma a few times and exchanged pleasantries and encouragement about J’s progress. Today, though, I met Grandpa. The first thing Grandpa told me is that Nik is the reason J is in this school.

Huh?

Turns out when Grandpa came to tour, he was bowled over by Nik (probably literally, since he tells me he saw Nik wheeling himself about in the mobile prone stander) and the independence he saw in him. The teacher told him that Nik wouldn’t stand or walk when he first came to school. That clinched it for Grandpa. Grandpa is, apparently, a big fan of my son. I was very touched.

It meant more to me than I could possibly express at the moment he told me. See, when Nik was born, and often throughout our many, many months in the NICU, Niksdad and I said we wanted to make our experience —good, bad, scary, hopeful —count for something bigger than just our little family. It felt like God chose us to be Nik’s parents for a reason and God brought Nik to this world in the manner he did for a reason. I am not a hugely religious person but I do believe there is a reason for things that we may not always know or understand. So to know that my son —my family— is making a positive difference in the life of another child, another family… Well, it feels overwhelmingly good and like a big responsibility all at once.

I try to live and parent in ways that make me worthy of that gift. Some days I succeed more than others, but each day brings a new opportunity.

Today, life is sweet.

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