"Hi Mama!"
Even all groggy, at five in the morning, the sound of these two words never cease to tickle my heart strings.
"Hi Papa! HeeHaw?" (His name for big sis.) "Hi! Moon? Sno?"
(Pointing to the darkened window. Boy still isn't trusting this warm weather thing.)
"Up, UP!" (Jumping up and down in his crib.) Then vigorously signing "dog" and woofing. Next, he is signing "shoes", and chucking his seahorse lovie overboard, barely missing the cat's unsuspecting head.
Crawling out of bed like a grub from under a log, I head over to pick him up. It's the beginning of another day with Leo man.
Days with Leo man are something- something tasty, indescribable, and yet essential like cheesy toast and fresh orange juice dripping off the chin. He's fun, demanding, terrifying, and the number one cause of tear-flow around here.
This past weekend was, for us nutty Orthodox Christians, Easter (known as Pascha). It's when we all settle in for a marathon of fasting, services, and then services and feasting, mostly in that order. And yeah it was a whole three weeks later this year! (However, we had the most fantastic weather: sun, flowers, kids playing outside between services, while everyone else had rain, and or snow on their 'early' easter!) It's quite fabulous and the culmination of the year for most of us. In the perfect words of a fellow blogger and "special mum" here are the bullet points of the whole affaire:
- For the 40 days leading up to Pascha, Orthodox Christians observe Lent by fasting from meat and dairy products.
- The week before Pascha (Holy Week) is filled with services to prepare us for the resurrection of Christ. We commemorate His crucifixion, His burial, and attend a service called Lamentations, where we mourn for Christ in the tomb. This is not a morbid fixation on death but rather an honest look at the sacrifice required for our Salvation.
- The Paschal service begins Saturday evening around 11:30PM and usually lasts until 2:30AM Sunday morning. So a bunch of meat-hungry and exhausted church goers gather together in the middle of the night. Sound miserable? Don't worry, it's lovely.
- A meal follows the service. We break our fast with traditional Pascha foods, drink grown-up beverages, and party like it's 1999. Christ is Risen!!
Leo, as you can see, is never one to let an opportunity to snuggle slide by, even if it happens that grandpa is giving a sermon. Why not get up there and do your thang, by golly? You're just helping him be a better priest, learning the preaching thing in kinds of distracting circumstances...(so rationalizes Leo, when he can be bothered to think about these things..)
"Amen, Amen, AMEN!!!" Shouts Leo at two in the morning when he is whisked out of his cozy bed into the bright glorious lights of Pascha and up to communion from his "Deda".
Pascha is awesome this year.
When we aren't spending every waking hour in church, we are meandering around, pointing out the signs of spring like we are visitors from outer space. "Would you just look at that leaf, fellow space traveller, it is green! What could it possibly mean??"
Or we are heading down the road to the local diner, where big sis scarfs pancakes down like there is no tomorrow and asks outrageous questions of the 8-ball, and Leo sits on Justin's lap and vroooms at every passing car, and tries to bowl things off the table with the said 8-ball.
Of course not all of our days are plain fun. Some of the time is therapy fun. Next week Leo has a prelim meeting with his current therapy team to meet the director of his new team which will take over in September. It's exciting to see him progressing, but we sure are going to miss all these lovely people who have been part of our daily lives for the last three years...
On some days, we are hard pressed to remember what all the fuss was about with him in the beginning anyway. He is so full of life, so full of all things good and basically typical kid, that we are almost always doing a double take when the subject turns to his brain abnormalities or previous surgeries. Was that us, crying in the NICU, holding vigil in the PICU, and writing obituaries in our heads? Just like this joyous week after Pascha, follows on the heels of the solemn sadness of Holy week before and erases it with its radiance, so does our happy days with the Lion Boy now replace the tone of the dark ones before.
A couple weeks ago we went to the Epilepsy education day at our hospital where Leo's neuro gave a series of talks about seizures. Although we know quite a bit about seizures, it's humbling to learn just how much we don't know. Seizures are a fact, and a part of the lives of many, many people. Before medications and brain surgeries people would eventually die from epilepsy, but now, little buds like Leo can live fairly normal lives. Of course, like with any condition, there are spectrums of severity. Leo's seizures are scary and intense, but they are controllable, and fairly few. Enough to wig us out, but not enough to rule our life. One can't have everything I suppose! Even though sometimes our kitchen counter looks like the pharmacy work table, and though I cringe when I think of the side-effects and chemicals that I'm putting into Leo's body morning and night, it's become just part of our days. Part of what it means to be Leo, and to keep him that way. Meds are our downfall and they are our salvation. And it's a given, that the seizures are worse, way worse, then the meds. Praying and hoping that if there are any seizures this summer in store for us, that they will take place in a fashion where we can attend to them quickly, efficiently, and if need be, are in close distance to the ER. In other words: Oh God oh God please not when we are at camp in the middle of the Adirondack Park....
But we are motoring our way into the brightness of summer, and although I know it's just bold talk right now, but I'm feeling that the road is clear and fast, the wind is in our hair and the sun is at our backs.
Messy Lion kisses, as always, to all of you our devout Leo fans and readers of the blog! (Thanks for your patience in my turtle speed blogging these days.)
