Drew rocks like none other. He is able to sit with min or no physical assistance for minutes at a time. He can hold himself up in 4 point. He is learning to balance and starting to illicit the 'righting reflex' when he is falling instead of just giggling and toppling over. AWESOME! He is so fun and so smart and so so cool. He is sassy, crabby, stubborn, determined, hard-headed, fun, adventurous, and fearless. He is my hero. We were at the St. Lawrence festival and went on a few rides. The scariest one was his fave...the Pirate Ship one that goes like hell from one end of the pendulum to the other. It was crazy for me and Aunt Kate...Drew was loving every second of the sensory, fast, backward g-force experience. I needed time to recover, he didn't.
I wish there were more rides he could go on. I worry about the jerking motion on his neck (low trunk control) but there are a few rides we can do and he loves them.
He is getting so big. I don't see it often, since we spend so much time together. When I see how much of his bed or the couch he occupies or how grown up he looks when I watch him in the rear view mirror, it takes my breath away. He has come so far in the past 12 years, but not far at all ( if that makes sense) in the conventional way. Every tiny step is a huge milestone for us. Thank God for the tiny steps...we are forever grateful.
But you are not. Today, I want to tell you that I see you.
I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous.
I see you at the therapy office programming your child’s speech device, entering phrases and words to help her communicate with others. You lean over to your spouse with a grin and push a button, I hear the computer’s voice say, “I farted.” You are funny.
I see you at the support group. New parents are visiting with their baby, they seem scared, nervous, and they are trying to deal with the diagnosis. You approach them, ask questions, affirm their feelings, and assure them it won’t always be easy, but it will be good. You are compassionate.
I see you walking into the school for the third time this school year. A binder full of notes, lists, and goals. Your don’t feel your child’s team is following the IEP, and you won’t give up inclusion for your child. You will do whatever it takes to provide the services that your child needs. You are resilient.
I see you at the hospital, a place you are too familiar with. Tubes, machines, tests, and specialists. Your child’s feeding tube is the least of your concerns. You are brave.
I see you at the restaurant, with a menu in your hand. But the noise is too much for your child, the smells and unfamiliarity overwhelm him. Soon, he is yelling and screaming. While people stare, you exit the place and get into your car as quickly as you can. You are flexible.
I see you at church asking one of the new moms if you can bring her a meal on Tuesday afternoon. You have so much on your plate, but you also remember how hard the first few weeks are after a baby comes home. You are generous.
I see you at social gatherings where well meaning people ask ignorant questions about your child or her disability, they make hurtful comments, or fail to recognize that your child is a child first. You don’t get angry, you don’t yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner and thank them for their concerns. You are gracious.
I see you out there in the world, living a selfless life. You give so much, you feel so deeply, and you love so abundantly. You are admirable.
These qualities you display are precious gifts you give to your child and to those around you, they don’t go unnoticed…I see you.
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