Two-and-a-half months ago Ella was diagnosed with Spinal Muscular Atrophy Type 2.
So much has happened since that day.
Lindsay and I have entered into the world of caring for a child with special needs; something we never thought would be part of our lives. We have been thrust into an emotional hurricane, spinning us around with a force that leaves us hopeful one moment and in despair the next. The physical toll that surrounds our days continues to drain us as we seemingly need more rest despite how much we think we are getting. The financial burdens that loom in the distance produces a stress that lies underneath the surface...ever-present. Spiritually we are being called to open ourselves up more to God as we seek refuge in His care.
I've noticed much in the past two-and-a-half months--more so in the past week...
Ella has regressed physically yet has progressed mentally. She fights her SMA by being smarter than it is. She finds ways to do what she wants and if she cannot--she finds ways to get the help she needs.
I've noticed she looks at other kids her age running around and her eyes speak saying, "Why?". She settles into whatever she is engaged in and is happy for it.
I've noticed that Lindsay and I are in the beginnings of accepting the diagnosis yet still remain in the throws of disbelief, for the enormity and implications associated with it are too painful. Too close to home.
I've noticed Ava and Henry seeking attention as they grow and yet they continue to give loving attention to their sister.
As of late, I've noticed that Lindsay and I are more willing and able to ask for the help we need and are going to need. We've begun to take a more realistic view, despite the pain it brings, at how our family's life will be. We have made the decision to look at the big picture while at the same time looking at what we need in the present. Ella will grow. She'll grow and at the same time she'll lose more motor neurons, resulting in the loss of movement. We will have to move for her, with her. Technology and equipment, home modifications and specialized care, will be the tools we turn to in order to provide her with the best physical world we can. We know we cannot do it alone.
I've noticed most of all the call from God to us. For whatever reason, He thought it best that Ella was to come to us in this world. He has given me and Lindsay charge of a precious soul seeking to experience life on this earth in a different way than most. He has brought to both of us experiences and life-lessons designed to equip us to raise our three children in a fashion that will keep them loved and safe; providing them with the best emotional care we can.
I notice this call from God and at the moment I am still listening. I am still trying to open my mind and heart at the same time, although often they are at odds with each other. I am trying to quell the awful thoughts that surround me about SMA and what it does--and instead--listen to my soul, my heart, and the love that God has given to me so that I can do what I am supposed to do. Like a long-distance phone call over a wire that is static-filled I am trying to make out the message. Each day, the static lessens; I stand there--pulling into my life all that God is offering and somehow, some way, Lindsay and I will do what our Creator has given us the charge to do.
I've noticed...
