Admittedly I had been in a funk. I couldn’t shake the feeling of sadness, or maybe it was pressure, or maybe it was both, but either way it had been weighing heavy on my heart. I can pinpoint the moment. It started 2 weeks ago on a Friday morning at the DMV. After nearly 2 and 1/2 years of denial that we needed it, I finally bit the bullet, filled out an application, made an appointment and went to the DMV to pick this up…
As soon as I left the DMV, the notion that we were in a place where we needed this placard crashed over me. Tears followed and sadness found its way back into my soul.
Last week as I sat on the porch of my hotel room in Miami, the hot air filled my lungs. As I stared at the sky, I watched the planes as they almost rhythmically crossed my line of sight. I saw the stars as they twinkled brightly high above. I considered how amazing it was that these machines could fly through the air. And how the stars, while so far away and we could never touch them, that we could see them and marvel at them each night. I considered that progress, ever so slowly was creeping over E and our family.
With this consideration, the image of the handicap pass flashed through my mind. I had never considered this as a possibility in our lives. That our precious daughter would ever require one so that our lives might become just a touch easier. And then, I realized it’s so much larger than this pass, or acceptance of this stage, it’s about what might be, and what we may know in just 2 short months.
As I struggle with the possibility that a diagnosis for E may be just around the corner, I struggle with the idea that a diagnosis and subsequent prognosis, might chip away at her possibility. That somehow, any of the words from the doctor will make their way into the corners of my brain. When we see a geneticist on September 14, we will test for a syndrome called Angelman’s Syndrome. One of the symptoms is that the children are VERY happy. E is VERY happy. I am often told, she is one of the happiest babies people have ever seen. The possibility that this notion of her pure happiness could be stripped away, breaks my heart. Her happiness is an anchor for me. It keeps me going. Keeps me motivated. Keeps me feeling less guilty, less fearful, less bad that her life is so hard. The possibility that her happiness might be seeded in a diagnosis fills me with fear and sadness.
And yet, in the answer to what must have been my silent prayer of possibility, the next day, I received this email. It was unprompted and unsolicited. It came from E’s Physical Therapist at her UCLA Early Intervention Program. It was titled “Great Day,” and it was filled with possibility.
“Subject: great day
hey shannon –
hope this email finds you better than the last one.
just wanted to let you know that Emma had a great day – stood in the gait trainer for over 15 minutes while playing with 2 hands on instruments and going after koosh balls. We also had music playing, and she was so happy, laughing, making eye contact and seeming to really be having fun. She is trying to initiate steps in the gait trainer and has clear intent of wanting to move. She will take reciprocal steps when we push her in it. She is also holding onto the trampoline and riding toys with both hands much more consistently and for longer durations.
i want to go over her program plan with you briefly when you get back – so we are all on the same page with goals and areas of emphasis as she really is making great improvements with repeated practice. Today she also took out 3 pegs from the pegboard – and fast vs. 3 weeks ago when i tested her and she did not pay attention to the same activity visually for even a moment. She is also mouthing much less also.
keep doing whatever you doing – it is working!
happy travels –
And in that moment, I remembered that we are still in charge of our possibilities. To continue to push, to try everything and anything that may give her a better shot at her best possible future. We cannot control what we are presented with, but we can control what our possibilities might be and how we can help to shape them. To not allow the reminder of what was possible be outweighed by what is still possible, this is the air of possibility. So today, remember that what is possible is what we can all focus on and with this in mind, we can find some part of today to make today ‘anewfavoriteday.’ And to quote dear C so gave me back some perspective, happy travels today my friends.
Cover image source: skywaltzairballooning.blogspot.com