non-special needs. but not.

March 19, 2012 by nohandsbutours NSN, TongguMomma, undiagnosed SN 4 Comments

We adopted our second daughter from China during the summer of 2011.

We adopted through a Christian agency.

And we adopted through the non-special-needs program.

Heh. Y’all weren’t expecting me to say that, were you? Yep, we are one of those “crazy” families who waited five plus years to adopt a so-called healthy child. Only we weren’t expecting healthy. For years during our wait – that excruciating five year wait – I felt deep in my soul that our second child would arrive home with a medical special need of some kind. When we received her referral paperwork on April Fool’s Day of last year, I thought perhaps our new daughter would arrive home with asthma. Only two sentences covered her medical history, but there was a wealth of hidden meaning in that all-too-brief summary. I knew something was wrong; I thought it was asthma. Turns out I was wrong.

I’ll be honest, when we adopted the first time – in 2005 also through China’s non-special-needs program – we did expect to parent a child in relatively good health, albeit mildly underweight, malnourished and a tad developmentally delayed. The Tongginator exploded into our lives developmentally less than half her age, extremely underweight, given a “probable preemie” label as well as a diagnosis of sensory processing disorder. We also fought off a failure to thrive diagnosis and spent years (years!) battling major attachment issues.

So when I say we expected issues when we adopted a second time, y’all know I mean it.

What I didn’t expect to deal with were multiple unknowns.

Our youngest daughter, dubbed Squirt, is 20 months old now and looks to be the picture of health. She’s a whopping 25 pounds, wearing clothes our Tongginator didn’t don under after her third birthday. Squirt’s hair continues to grow and thicken, and her skin looks beautifully clear. Occupational, educational and physical therapists work with her weekly to help her grow in development. She spoke her first word at 17 months and took her first steps at 18 months of age. Since then, she’s skyrocketed ahead, although we still struggle with oral-motor issues.

All in all, she looks and acts like a “typical” toddler adopted through China’s non-special needs program.

And yet…

Since we arrived home in June, she’s undergone medical testing for both hip dysplasia and renal reflux. She’s been on antibiotics five times in the past ten months, with dosages lasting anywhere from 10 to 14 days. Doctors almost admitted her to the hospital in August due to near septicemia as a result of a severe urinary tract infection that developed in less than four days. She was hospitalized in December after experiencing two as yet unexplained generalized tonic-clonic seizures. She continues to struggle with multiple digestive issues, most recently blood in her stool just five days ago. She’s got low blood sugar, but is not technically hypoglycemic. She’s lactose-intolerant and at the moment we’re avoiding all legumes because of some non-typical reactions.

After countless tests, doctors don’t know what to make of Squirt except to tell us “don’t let her get sick.” At this point, they aren’t sure if she’s slow to recover from early malnutrition or if she has some type of endocrine or autoimmune disease. Although her levels all fall within normal range now, it’s also possible she was exposed to heavy metals or other toxins in utero. Or it could be that she simply has severe food intolerances (thankfully they probably aren’t true allergies since she’s yet to experience anaphylaxis). We just don’t know. The diagnoses they are considering often take months, if not years, to confirm.

These unknowns… and the “don’t let her get sick” mantra… affect more than you can imagine. I used to chuckle at the mommas who used baby shopping cart covers; now I’ve joined their ranks. At all times I carry with me a copy of a lab order in case Squirt seizes– the neurologist and endocrinologist both want certain tests performed if it happens again. I read ingredient labels with the concentration typically reserved for legal contracts and financial documents. We don’t attend MOPS or any other playgroup, and we look longingly as we pass by the mall tot lot, if we even walk into the mall, which is rare.

But the biggest challenge is the worry. I battle against it, constantly giving my concerns over to God so that I can respond rather than react. I can’t protect Squirt against everything, so it’s a balancing act between justifiable caution and just plain living our lives. Last week a nurse at our pediatric practice told me I’ve got a reputation for handling all of this very well. If only they knew what a mess I feel on the inside some days! I talk with a nurse at least once a week. We’re at the doctor’s office several times a month. Our pediatrician has even made house calls!

Despite all of this, Squirt looks healthy.

And maybe she is… as long as she doesn’t get sick.





4 Responses to “non-special needs. but not.”

  1. Truly Blessed says:

    Personally, I believe that ALL China adoptions are SN adoptions. The difference is that a “SN” or “waiting child” has one or more identified special or medical needs, while NSN children don’t. But all require parents who are open to the unknown and willing to do whatever it takes to get help and education for that child.

    I don’t like the labels “NSN” and “SN” but understand why they have to be applied to the children, but any PAP who expects a “healthy” (in mind, body and soul) child who was cared for in an institution or even a variety of foster homes, hasn’t done their homework or talked with other adoptive parents.

    I’m so glad that Squirt (and the Tongginator) have parents who not only “get it,” but are willing to do whatever it takes to help the children learn to accomodate the deficiencies in their earliest infancy and toddlerhood.

    God bless you all!

  2. Aus says:

    Morning TM (et al) – glad to hear from you – I.worry.so.much!! Royal bummer – lactose intolerant (two of our three adopted and my Bride too!!) is bummer enough – but no legumes rules out soy too – dang – calcium fortified rice milk and maybe the infamous “fish formula” that our son came to us using? (and yeah – it was as nasty as it sounds both in appearance and smell!)

    But I know you guys are up for this – in fact – you’ve proven that. But that’s not the point of my comment….

    the point is thank you for the reminder that “this is”, in fact, what we signed up for. Our kids – adopted or bio – don’t include a warranty. But that’s what parenting is all about – that’s what love is all about – that’s what our journey is all about – that IS family – and that IS love.

    And you have that in abundance….

    And that’s the good part – that’s the reward.

    As always – we’ll hold you guys in our hearts and prayers – and one day the MOMS club will be there!

    hugs – aus and co.

  3. Myrnie says:

    “respond and not react.” That really resonates with me, TM- I need to try and do more of that! Good luck

  4. autumnesf says:

    I know!!!!! Alia just got out of the hospital from pneumonia and then got a different one and a second set if antibiotics. I’ve been told to get used to it. And don’t let her get sick. And they are blaming it on the Hashimoto’s because it means she already has a deficient immune system.

    Ugh.

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