We did big things on Spring Break--well, big for us! We went out as a family--all together--to a park!
It is quite a feat to take Addie anywhere. First, we disconnect her oximeter, feeding pump, and oxygen. We then transfer her machines to special little backpacks, hook her up to a portable oxygen tank on wheels, and then reconnect all the cords to her and the machines. Next we buckle her into her car seat, grab her huge bag full of back-up medical supplies, meds needed for the day, extra feed for the pump, and lots of spit-cloths. Finally--off we go . . . like a tortoise. To keep from getting tangled and tripping over the cords, Chris carries EVERYTHING. It kinda looks like he’s carrying groceries into the house and only wanting to make one trip. In his left hand he hefts the car seat; slung over his right shoulder rides the two backpacks, holding her oximeter and feeding pump; and then with his other hand he pushes the oxygen tank while navigating the cords. They need to be high enough so as not to trip on them or entangle them in the wheels of the oxygen cart but also low enough to keep them from pulling out of Addie. By the time she and the machinery are lifted into the van, the cords and tubing look as if a cat had played with yarn. We untangle them from him, from her, from the car seat, and from the machines, get her settled, ensure she’s still breathing, adjust her oxygen, and then . . . for real . . . off we go!
At the park, Addie slept in her carseat the entire time! But--we were all together and enjoyed our picnic of fried chicken cocooning Addie as we all pushed closer and closer to be near her. Repeating the above paragraph but going backward, we arrived back home satisfied with our adventure on Spring Break.
Yesterday (Saturday, April 14), the sun shined down in all its glory. I told the kids that if they got their work done, we could take Addie across the street to a little neighborhood park. Funny how that motivates them! I stood by her bedside and questioned if I should actually attempt to take Addie out by myself. I knew I’d have to take her oxygen, but couldn’t I leave her food at home? And I could just leave her beeping oximeter home--no need to draw extra attention to ourselves, right? I unhooked her and then bundled her up in a sleeper, a hat, some socks--things she never wears. I wavered back and forth as to whether I could keep her oxygenated without her oximeter telling me how she was breathing. I almost changed my mind and took that extra machine with me. But--finally, I convinced myself that if she went blue on me, I could get her home quickly. I’d risk it! So, with only my Addie and a backpack tank of oxygen, Hyrum, Cicely, and I walked outside.
The bright sun created a response in my little babe. Though I’d shielded her eyes, she shut them--tight! She kept them so tight, that I started to laugh, so delighted to get this response from her. I felt emotion throbbing through me as I carried her in my arms across the street--just as if she was a healthy, normal little baby and we were just going on a casual stroll to the park. Oh the times I took this for granted!
Hyrum picked a dandelion to share with Addie. We tickled her face with it and put a dab of pollen on her nose as we let her smell it. Very little response--but I wondered if she’d now be allergic to dandelions the rest of her life?
When we arrived, Addie seemed in a bit of a panic. She didn’t know how to handle all this new stimulus--the bright sun, the breeze, the coolness of the air. I held her tight to comfort her as she whimpered--still with her eyes closed so tightly and on borderline seizure mode. I took off her hat and the wind whisked down and played in her hair. She took short, shallow breaths as it brushed over her face. Soon, she decided she liked it. Her breathing slowed, and she started to open her eyes, letting in just a glimmer of light. Slowly, slowly . . . Addie opened her eyes larger and ventured to peek.
The sun warmed us up, and I took off her sleeper and her little britches to let the rays work some Vitamin D into her chubby legs. I held her in this powerful, spiritual moment, but I could not hold my tears. Everything felt holy, sacred.
I thought, “I’m holding my daughter--my Addie-- out in the sunshine!” Flashbacks of her first 4 months of life wired to a crib and equipment--never knowing what the sun could feel or look like--only catching the illusion of it through a window in her room when I would come, open the blinds, and let the sunshine flood through darkened NICU windows. But now after three additional months in a home crib, still with wires and machines--the love of God radiated around us as we sat basking freely on the cool grass. I removed Addie’s socks and let the blades tickle her toes; Hyrum brought some snow from the previous day’s storm and touched it to her legs and hands so she could feel what cold is. Again, I could not contain my joy as it coursed down my face.
In one of my favorite books, the author writes of the Fall of man:
“The fall separated us from the presence of God so thoroughly that we no longer hear the word of the Lord . . .. Our hearts and our minds are clouded and impaired--handicapped by the Fall. We are spiritual “Special Needs” people, quite literally disabled in every possible way. We are in God’s view, a mortal child who was born blind, mentally impaired, and paralysed.” (Visions of Glory by John Pontius)
This day for Addie must be the closest thing she’s known to the world from whence she came as intimated in William Wordsworth’s famous poem Ode to Immortality:
THERE was a time when meadow, grove, and stream,
The earth, and every common sight,
To me did seem
Apparell'd in celestial light,
The glory and the freshness of a dream.***The sunshine is a glorious birth;
But yet I know, where'er I go,
That there hath pass'd away a glory from the earth***Fresh flowers; while the sun shines warm,
And the babe leaps up on his mother's arm:— 50
I hear, I hear, with joy I hear!
—But there's a tree, of many, one,
A single field which I have look'd upon,
Both of them speak of something that is gone:
The pansy at my feet 55
Doth the same tale repeat:
Whither is fled the visionary gleam?
Where is it now, the glory and the dream?***
Our birth is but a sleep and a forgetting:
The Soul that rises with us, our life's Star, 60
Hath had elsewhere its setting,
And cometh from afar:
Not in entire forgetfulness,
And not in utter nakedness,
But trailing clouds of glory do we come 65
From God, who is our home:
Heaven lies about us in our infancy!
As I sat there holding my disabled child, I reflected on her burgeoning awareness compared to my own. Addie is learning to recognize the sun--a celestial shadow of the former glory and light in which she used to bask. Likewise, I am learning to recognize the Son--His glory and light also shadowed from my veiled mind. The sun is all around us, and so is He. Yet, I like Addie, too often keep my eyes shut tightly. Like her, I struggle in my mind to learn how to process His ever present love. Addie and I are both handicapped by the Fall--she physically, me spiritually. I will teach her awareness of the physical world; she will teach me awareness of the spiritual world. We are both desperately in need of the tutoring sun: Son.
“But behold, verily, verily, I say unto you that mine eyes are upon you. I am in your midst and ye cannot see me; But the day soon cometh that ye shall see me, and know that I am; for the veil of darkness shall soon be rent, and he that is not purified shall not abide the day.” D&C 38:7-8
“ Beloved, now are we the sons of God, and it doth not yet appear what we shall be: but we know that, when he shall appear, we shall be like him; for we shall see him as he is. And every man that hath this hope in him purifieth himself, even as he is pure.” 1 John 3:2-3
“And if your eye be single to my glory, your whole bodies shall be filled with light, and there shall be no darkness in you; and that body which is filled with light comprehendeth all things. Therefore, sanctify yourselves that your minds become single to God, and the days will come that you shall see him; for he will unveil his face unto you, and it shall be in his own time, and in his own way, and according to his own will.” D&C 88:67-68
