It’s been a seriously rough patch over here at Nik’s house — a very, very, very rough time here. I don’t think that is understating things at all.
We’ve been battling against the mysterious pains for so long now that they are starting to feel like a part of the family —kind of like bad in-laws that came to visit and ended up moving in. Then we had the detour to the hospital for Nik’s ileus. Now we’re trying to figure out whether his new found obsession with love of eating is compounding things with the possible advent of food allergies and maybe even celiac disease.
We’ve gone from sleeping peacefully on most nights to not sleeping at all many most every night. The bruises on Nik’s poor little face and legs (he kicks himself in the right shin with his left heel) are so bad that it makes me cry and makes my husband feel ill. Just when one set starts to develop the soft blend of yellows, greens and purples, Nik gives himself some new ones to overlap in angry shades of blackish-purple. They are all very distinct in size and shape; I can pretty much map out which knuckles hit where from the patterns on his face.
Nik’s suddenly decided that going anywhere with his Daddy is only okay as long as I am there, too. The mere idea of getting into the car without me sends rivers of tears coursing down Nik’s cheeks and he begins a plaintive chorus of “Ma-ma-ma-ma!” —complete with outstretched arms and clutching at my shirt when I lean in to kiss him goodbye. My radar is pinging frantically as I try to figure out a possible cause for this new behavior. His father and I know it is a communication but we are unable to figure out the underlying message so we simply muddle through.
It seems that just as things settle a bit and we feel a little easier —Bam! —the other shoe drops and we’re back in the fray. I hesitate to write much these days because things change so quickly that I can’t keep up; I feel like I am writing fiction when I’m trying relate all the good things that have just happened and Nik is in the midst of blackening his own eye as I write or we’ve had seven consecutive nights of no sleep. I guess you could say I am experiencing a bit of cognitive dissonance in the process.
Somehow, even in the midst of the worst days, there are tiny glimmers of hope shining through.
Nik’s desire and ability to eat have absolutely skyrocketed! We were finally able to get his blood allergy testing done last Saturday and began giving Nik Allegra to help minimize any symptoms. [side note: It’s not having any apparent impact on the accompanying symptoms.] Since then, we’ve pretty much let Nik eat whatever he wants; within the span of one week, Nik’s gone from eating a mere five percent by mouth to inhaling consuming more than fifty percent of his daily nutrition orally. FIFTY PERCENT!
It’s not just the increase in quantity either; that alone would make us very happy. No, Nik has simply decided: it’s time and he knows how to eat. With a fork and spoon. Finger foods. Textures. He’s teaching and challenging himself as he goes; we have not tried some of these things with him before and yet he has mastered them. It still boggles my mind.
One of the nice things about Niksdad losing his job recently is that he is now home on weekends and we have opportunities for some wonderful family time. We had brunch at my parent’s house on Sunday. Nik decided that would be a great day to show off his eating prowess for his grandparents.
As I was setting up his booster seat —and apparently taking too long to suit him—Nik launched himself head first into one of the cushy arm chairs at the table (we were dining on my parents closed-in porch with their generously proportioned patio furniture). Rather than try to wrangle him while I was fixing his booster, I simply handed him one of his cooked pancakes. Really, I just assumed he would lick it and tear it into pieces that would end up either on the floor or the table to be cleaned up by the cat after we had gone. You can imagine my surprise and utter delight when he tore off a piece and stuffed it directly into his mouth!
I still get kind of choked up thinking about it; it’s been a long, hard journey to get here.
I thought the “pancake incident” was the pinnacle; it was just the beginning. During the course of the past few days —in spite of his horrible nocturnal (and now occasional day time) episodes of pain —Nik has surprised us by feeding himself without any assistance on more than one occasion. It’s not perfect —and it’s certainly not neat —but the confidence he exhibits and the gusto with which he eats is nothing short of amazing. And his palate seems to be limited only by the textures of the food; he’s actually managed to bite into a piece of dry cereal without prompting —or freaking out!
Believe me when I say this odd juxtaposition of tremendous breakthroughs coupled with the debilitating pain is keeping us all more than a little off balance. Just when I think I can’t take anymore, something happens to slow the pace a bit. Or, as was the case last weekend, something so wonderful happens that it helps restore some perspective and provides a boost of energy needed to keep going.
My wonderful friends —and I do consider them friends though we’ve not (yet) met face to face —sent me the most perfectly timed and thoughtful gift. I still cry when I re-read the note. With this amazing gift I have started to allow myself to think about doing things or having things I wouldn’t otherwise allow myself to.; I’ve gotten so good at sacrificing my needs for my family’s needs. I don’t mean that in a martyred, feel-sorry-for me sort of way. It’s just what happens when you are the full time caregiver for a child with as many challenges as Nik has had in his short life. My friends, you totally get it and I love you for that. I am so grateful for the words of love and support and for the desire you had to reach out and remind me that we’re all in this together.