When a newborn baby comes home from the hospital, one bit of sage advice that is always given and seldom followed is this:
“Sleep when the baby sleeps.”
I’ve fought it for years, I confess. No more.
The ongoing sleep deprivation campaign seems to be ramping up a notch or two this week. Nik’s begun waking more and having more distinct cycles of pain and wakefulness. In fact, if I am able to stay calm and focused on his body’s subtle cues, I can actually tell when a wave of pain is about to begin.
So, I’ve been going to bed earlier —working my way down toward my goal time of 8:00 p.m. I’m not naive enough to think I might actually catch up on sleep. No, this is merely an effort to stem the tide of utter exhaustion which threatens to become an actual danger. Lately, I find myself driving to or from an appointment with Nik and not really remembering how we got there. This doesn’t happen a lot —only once or twice so far —but even once is too many for my peace of mind.
The allergy testing has not provided any insights; Nik’s intestinal biopsy and blood tests don’t show any clear signs of allergies. Skin scratch tests with actual foods (instead of the serum distillations) proved fruitless (sorry, couldn’t resist!).
This morning, we will find out if there’s any skin reaction to prolonged contact exposure. Yes, poor Nik has been a trooper to put up with the large grid of food smears that has been taped to his back since Wednesday morning. That particular insult came on the heels of the scratch-test injury. I’ve had to duct tape him into his clothing to keep him from reaching around to pull at the patch on his back.
We managed to make it through the maze of condescensionof screening nurses who demanded a dozen different explanations of why Nik needed to be seen by the demi gods they serve and actually have an appointment with one of the senior endocrinologists on staff at the pediatric hospital we frequent. In all fairness to the doctor, the screening nurses do not work in his department and I have heard nothing but marvelous things about him; paramount of all I’ve read and heard is that “he has a great bedside manner and he takes as much time as each patient needs.” I hope to be able to report a positive encounter next week.
More importantly, I hope the endocrinology line of inquiry yields some answers to help our family. If the doctor turns out to be a complete and utter schmuck but can help us —I could live with that.
I’ve spent the past couple of days finally diving into the mountains of paperwork that are necessary to re-authorize nik’s Medicaid each year. It is tedious, time consuming and, I confess, more than a tad depressing. Why is it that we put up with a system which requires painting one’s child in such a depressing light just to qualify for services?
Really. My child’s diagnoses alone should qualify him for continued coverage under the same system which has covered him since birth. Is it really necessary to enumerate each and every little facet of the impact they have on his daily functioning? There is no dignity accorded to the disabled by our social services system.
This week has been a busy one for Niksdad, too; his school schedule has been crazy —including one full day of classes which rolled right into nighttime clinicals which kept him out of the house from seven in the morning until after eleven at night. We’re both tired and hanging on.
Only six more weeks until graduation. Whew.
Meanwhile, Nik continues to be a superstar. I’m not sure he knows any other way to be, really. Honestly, I don’t know how he can function onas little sleep as he gets and yet —he thrives. He’s eating more varied foods and larger quantities —though not really chewing still. He’s vocalizing more sounds and testing the waters with attempts to say a couple of words like cracker or more with greater consistency. He’s trying to string together multiple word requests with greater confidence and less prompting on many occasions.
Nik is organizing his world into patterns and pairs and collections. He’s even beginning to take note of other children inour weekly play groups. This week, with a lot of guidance, he actually cooperated with another child to complete a puzzle. He’s obsessed with letters and numbers and looks for patterns everywhere. He is becoming a greater participant in his environment where he once was, at best, a nonchalant bystander —not even an observer, really.
When we’re not eating meals together or on the road for Nik’s numerous appointments, Nik will climb onto my lap with his Diego Rescue Pack in hand and a huge grin on his face. That’s his way of asking me to play bouncy, silly games with him. He asks with such unabashed charm that I cannot resist, no matter how exhausted I may be.
Similarly, Nik brings me his “broken” toys —the ones with the slurred, incoherent voices desperately in need of new batteries, the toys with the hidden switches still in the off position —and signs help as he looks imploringly at me. His utter confidence that Mama can fix anything is both delightful and daunting.
If only I could fix it all so easily. *sigh*
The roller coaster ride continues. Keep your hands and feet inside, folks.