To be ok with not being ok…

I mentally paced back & forth all weekend about this post. I thought of making it in to more of a “look on the bright side” kind of entry, in which I would turn every fear I have for Evy in to a beautiful rainbow. After all, changing the lens through which we view things can often help us to be uplifted out of our sorrow, worries, etc. It can be a very effective tool! But no, not this particular time. Sometimes, as much as we don’t want to, we just need to be ok with not being ok.

Thank goodness I have Gus, our “first baby”, our adorable, lovable, loyal English Springer Spaniel, snuggled up beside me tonight as I write. His steadfast presence, and waggling tail as he dreams, help to warm my heart on this odd night. My darling Bug is 8 hours away, when I would much rather he be safely in bed here at home. I would rather hear him trying to party and fight going to sleep, while his big brother grumps away about him from the top bunk. I would rather be called in for snuggles, even though normally after 8 PM is my quiet time in the house, and being summoned multiple times tends to tick me off. Tonight, I would rather have him home.

Scott and Evy are in Winnipeg, waiting on tomorrow’s arrival for 2 rather crucial appointments, that we have been waiting numerous months for. The second appointment (yes, I’m starting with the 2nd one rather than the 1st, because that one isn’t weighing as heavily on  my mind. It would feel rather anti-climactic writing about this otherwise) is quite simply an EEG. We need to see if our darling bug is having, or has had, seizures. The reasoning behind this is two-fold: 1) Evy used to suddenly zone-out, and use a repetitive motion during such times (such as fiddling with one ear, later on he would rub one hand against the other, and now he does nothing but just kind of stares off). Although it isn’t as pronounced when he does this anymore, and does not happen as often either, it’s still something worth checking off the list. And, 2) with the abnormalities in the white matter of his brain, it is likelier that someday he WILL have seizures, in which case medication would be needed. So, it’s best to begin monitoring now. This may sound scary on the surface, and back in January when this came up, it DID rattle me a little bit! However, seizures themselves are not usually harmful to a person in the way of their development, or overall health. (This is not always true–long lasting Grand Mal Seizures can definitely cause some physical detriment and pain, but those are not the type the Dr’s are concerned about with Evy. For him, they are checking on a less obvious type called “absence seizures”, in which for typically 15-30 second intervals, young children seem to go to a different place, a.k.a. severely zone out! And absence seizures are generally not harmful.) The knowledge that even if he IS having absence seizures, which his neurologist doesn’t believe we will find to be true, that they are not hurting my baby, makes that appointment the less daunting of the 2. And if they DO find it to be true that he is experiencing them, then medication is readily available to help manage their occurrences. My baby is safe no matter what the result, so this momma is happy with that.

Now, on to the much anticipated 1st appointment: at 12:45 tomorrow, Evy sees the Pediatric ENT, which means he/she is an Ear Nose Throat Pediatric Specialist. <cue the dramatic horror movie music here!!> I know, I hear you, it doesn’t sound at all frightening, does it? It sorta sounds mild compared to an EEG to monitor for seizures! “So, this Dr deals with ears, noses, & throats?…what on earth is she nervous about?”  The reasons why Evy has been referred to see this ENT are that: he drools quite a lot (not as much as he once did, he used to soak a bib every hour or 2, and now only needs 1-2 bibs per day…but nonetheless it’s still a lot), his speech is still not as clear as it could be, he used to gag (and sometimes even choke) on food almost every meal time, and his breathing constantly sounds constricted and forced. This leads us (“us” as in Scott & I, his pediatric developmental specialist, his pediatrician, and his SLP) to believe that something might be obstructing things in there. Maybe his adenoids are too large, maybe his tonsils need to be removed, maybe there is something up with his soft palette, or maybe it’s something we haven’t even thought of. But the point is that IF this Dr finds something WRONG, he/she has the ability to FIX IT. This would be such a change for us, because much of what we have learnt about our darling Evy isn’t very concrete just yet. We know we’re on the right path with him, and that the various treatment plans in place are indeed working!! But, there are vital pieces of our Evy-Puzzle that we DON’T know for certain yet. We don’t know with %100 certainty what disease is causing the abnormalities in his perfect brain. We don’t know exactly what to do to best help him in all areas just yet, or what to expect for his future. But I do know that if this ENT says tomorrow that he/she can FIX SOMETHING DEFINITE for our bug, I would feel a huge sense of relief. And happiness.

It may sound odd to some, why would I be hoping for a Dr to find something wrong? Because…there would be a concrete REASON for why he drools, for why he had such difficulty with eating/drinking, and especially for why his ever-widening vocabulary of 64 words and counting is still not super clear. And not only a reason would be found, but a CONCRETE SOLUTION could be offered. A solution that is super common among many children!! Kids have their adenoids removed all the time! And tonsils? Who needs them anyways, right?! (Kidding, kidding, I had to inject a little humor in to this post) But you get what I’m saying: those are fairly run-of-the-mill surgeries, that many kiddos undergo, and come out with the issues fixed. I would love for some issues to be so quickly FIXED for Evy, it would feel almost like magic.

And on the other hand…if this ENT says there is nothing abnormal to be fixed….my heart will drop. There won’t be a “magic fix” for anything in that case. And although I will always work my a$$ off to help this angelic little man of ours acquire all the skills for a happy & full life, including the art of clear speech, knowing that there is a hard road ahead with no quick detours along the way would feel very daunting indeed.

Which will it be? Will the ENT find something to fix, and give me a jolt of hope?…or will it be a crushing “nothing is wrong”? I’m so very nervous….

Either way, Evy is AMAZING. I know this!!! He has a healthy, full, wonderful life, and is progressing in his speech more all the time. About 1 year ago when we began this journey, he had maybe a total of 5 words–and now he has SIXTY-FREAKING-FOUR!! Hearing “there is nothing wrong” in there to fix wouldn’t be the end of anything….but it also wouldn’t present me with any new possibilities. No “quick fixes”. No detours on this hard road.

And I would have to be ok with not being ok….which at this point, I really don’t feel like having to do.

 

 

 

 

P.S. Thank you so much for reading & supporting Evy on his journey! Please take a moment and send positive vibes/prayers out for our little man’s appointments tomorrow.