As a teacher I've often heard and said that kids "grow up" so much over the summer. And they do.
Summer provides a open forum for play, which as we all know, is the best way to learn. It also allows for physical activity which strengthens the body. Skills that require coordination can be practiced if not mastered over the summer. Not to mention time for relaxing; those lazy summer days really do serve a purpose--to relax and recharge.
Kids also complain. While there is a plethora of things they complain about there's one complaint that all kids end up engaging in...growing pains. They often come at night, when the body is seemingly in rest but deep inside it's hard at work. Hard at work growing. Hard at work taking all the days' activities and sorting through...finding value in one aspect and no value in another. Muscles regenerate from the stress of play. They strain and grow leaving their owner in a deep seated, dull, achy pain. Kids cry from this throughout the night but it's sort of a rite of passage.
There's another type of growing pain that I never knew existed until now. The SMA growing pains. You see, kids with SMA fight many battles and they are not all physical. Many are internal battles they have with themselves. These battles mature with age. Ella turned six years old this June. Her mental battle took a leap and a bound over this summer. Her awareness of her disease, which lay relatively dormant up until this summer, began its ascent into her consciousness. And as the leg cramp creeps silently through the night only to settle squarely behind the knee, the awareness of SMA follows suit. Only it doesn't settle in the leg but rather, in the mind. As Ella grows she is able to perceive more of what is going on around her; she able to contemplate her own existence, she is able to question her lot in life~and she does.
SMA takes away what Mother Nature intended to grow. Ella now sees this. I watch her every day. For moments she sits silent, brow furrowed ever so slightly as she watches her siblings play in ways she simply cannot. She senses me watching and wheels over to me. Usually she would avoid the subject altogether and distract herself with something else. But this summer she simply spoke to me about her feelings. She's finished asking me why God allowed her to have SMA and has instead opened up with her feelings; her growing pains.
She's tired of her chair. She's tired of her physical limitations. And she's tired of knowing that kids are meeting childhood milestones and as she approaches those milestones they become increasingly difficult to deal with. SMA robs her. It robs her of typical development and she gets frustrated when she can't do something that she used to be able to do.
Now, as she gets older, she is starting to show me her anger. I want to say I understand but how can I? How can I say that I understand how it feels to have a disease that fights me everyday? How can I say I understand having a disease that allows me one step forward and two steps back? How can I understand the growing pains a kid with SMA must be going through? I cannot.
We talk. She grunts. We reason. She hits her legs with her hands. We hold hands. She "charges".
At night, when the other kids are crying about their growing pains, Ella cries for hers...yet her knees aren't what's bothering her...her uncertainty is. She doesn't want to be alone at night; she doesn't want to be left lying in her bed, unable to really move herself while experiencing all the typical night-fears all kids have. But for her, she cannot "run" away from her night-fears into mommy & daddy's room, or even Ava or Henry's; and now she knows it all to well. Often, when I say goodnight to her, her mouth frowns as she fights not to cry. I can feel her growing pains building and the fear dwelling in the room. I kiss her and part; leaving the door open and the light on low.
Her nurse still comes and is absolutely wonderful. She, too, noticed the "growing pains" of Ella. Just recently, however, she has made some suggestions for us to try to help Ella fall asleep. It has been working just great. And with good sleep comes good days. She is not as angry about SMA; she is not so "tired" of her chair, her limitations, and her challenges. In fact, she has decided to face her challenges head on.
The video below shows what a determined, intelligent, and inspirational child Ella really is. She worked this problem out all by herself. Relieving Mommy, Daddy, Ava, and Henry of having to open the door for her to go in and out of the house to and from the deck.
We live with Ella and she simply blows our minds away all the time...this one's really great!
