Since the diagnosis of SMA was thrust into our lives in August of 2011 our opportunity for good, restful sleep has dramatically changed. The stress that comes with a diagnosis of a terminal illness housed in your child's body is like a mountain of worry that is ever-increasing in magnitude. This stress manifests itself in a myriad of ways~~one being less than optimal sleep. The fact that we must get up throughout the night to tend to our baby's needs, whether it's to turn her a bit to ensure her comfort and health or to start and stop her nightly feedings, adds to the lack of slumber.
I have noticed, however, that we are growing used to this kind of sleep. Our bodies and minds are adjusting, adapting if you will, and from that I am starting to remember my dreams again. This is both a blessing and a curse.
Many of my dreams are about Ella and her condition. Each dream starts out in pretty much the same way. I am with Ella and our family and we are at home. I start out looking down at Ella and seeing her in her little wheelchair. I position myself to be at her eye level and I say something to her--it's always in the garbled dreamlike language yet I know it is something important that I am telling her. The dreams always follow the same pattern in that after I am finished talking with her I walk away...in some way leaving her to her own devices. I watch from afar. I study her closely and witness her overcoming her SMA. In some dreams she gets up and walks; in others, she moves her arms and legs freely and purposefully; and still in others she runs and jumps. However the scenario unfolds itself the resulting pride and joy denoted in her expression is always the same. The dream always ends with me holding her close in celebration of her victory over the #1 genetic killer of children under the age of two. It also culminates in a wandering feeling that we knew all along she would be cured. Of course at this point the dream ends.
Sometimes the ending comes about because there is a machine beeping in the night, telling us that we must attend to Ella in some way. Other times it ends because the night is over and a new day has come to us. Still other times the dream ends simply because I wake up.
A blessing and a curse. The curse aspect is the realization that these are simply dreams. Upon waking from them I am, for a brief split second, convinced that SMA does not exist anymore, for any child or family. Then the reality of our life invades me once again and I am left feeling numb. I am left drawing in a heavy, heartsick sigh for the reality that SMA carries ominously with it.
The blessing, on the other hand, comes from a deeper feeling. A feeling that stirs beneath the wreckage of emotions that reside in the pit of my essence. A feeling that holds promise. A feeling that comes to the surface during the dreams...it's that part of the dream where we celebrate the victory over SMA. The blessing of this feeling is strong during the dream yet is squelched by the reality upon waking. Although it may be squelched it simmers underneath during my waking hours; providing me with the glimmer of hope I so desperately need and desire.
Dreams are a curious thing. They give us glimpses into ourselves. They bring to us our fears, our hopes, our desires. Often they mask what they intend to reveal, leaving us with a distorted memory of them. One thing does ring true for the dreams of Ella that surround my slumber...they are, without a doubt, born out of a love for my child and for my family.
I must take these dreams with both the agonizing reality and the promises of hope that they bring to my existence.
