Imagine sprinting-underwater. Every step is so much work, but it's the only way to move ahead. Something urgent awaits, yet each step is agonizingly slow.
That is how I imagine it must be for my friends, Nathan and Diana Lee. Each day they must care for their daughter, Emily Hope, who was born with spinal muscular atrophy (SMA) Type 1-the worst form. This genetic defect renders her body unable to produce a protein the muscles need, so all voluntary muscles slowly deteriorate.
Nathan and Diana are running with all the strength they have, because that is how much strength this all-encompassing care requires. They are sleep-deprived, performing treatments throughout the night and day. Every decision gets filtered through the question, "What will this mean for Emily?" They wrestle with their insurance provider over benefits.
The Lees have been through this once before: Their daughter Linnea Grace was born three years ago and lived 13 months with SMA before succumbing. Now they don't know whether this race is a dash or a marathon, and "pacing yourself" is not an option when it comes to loving a child.
Emily's eyes are bright and her smile is contagious, but she cannot hold her head up. Her mental abilities have developed normally; it is only her muscles that fail her-fail all who love her. She has lost the ability to swallow on her own, and to cough. If too much of her body's natural secretions ever accumulate in her lungs, she loses the ability to breathe on her own. Her parents employ "cough assist," "BiPap," cardio-pulmonary thrusts, postural drainage, and suction to keep her lungs clear and enough oxygen in her blood.
Admirably, the Lees have not hardened their hearts to this child whom they will lose at some point. Instead, they have made the choice to bond with her-to her delight and theirs. They revel in her smallest gestures; they notice her personality and charm; they do the little things they know will make her happy.
Annabelle Faith, Emily's 5-year-old sister, does not have SMA. She is robust, creative, outgoing, precocious, and thoughtful. She remembers her first little sister, Linnea, and mentions her easily in conversations, as though she knows it is important not to forget. She dances for Emily, strokes her cheeks, and brings toys that Emily can hold with her clenched little fists. Most of her life, Annabelle has had a baby sister who required special care. She is adamantly independent, yet desires her parents' attention, as any child does. Her parents do their best to give her a happy childhood, but they do not hide from her the serious issues they face.
Ultimately, none of us knows how long we will have our children, our spouses, our own lives. Though my friends may ache, and wonder, and tire under their burden, they are confident that God has a purpose in this, and they want to be faithful in fulfilling that purpose.
Meanwhile the pain doesn't make sense. It wears on them. Nathan wrote last year about people who say that it will get better: "If when people say that, they mean 'God will give you the strength and it will seem as though things are better because your relationship with Him is better,' then I could agree. . . . Maybe we are suffering so Annabelle can do 'something big' with her life and we are just the stepping stones for the great way God will use Annabelle. . . . Maybe God wants our marriage to be as difficult as it is because our constant need to work through things is a better witness to the people God puts in our life than a marriage where things are great most of the time."
If only the Lees knew what somber wonders are being wrought in hearts like mine as I witness their faithfulness and share in their pain, perhaps they would know that God is doing "something big" already.
-Laurel Cornell Robinson is a teacher and writer in Sykesville, Md. For more info on SMA, see fsma.org. To read the blog about Emily's care and progress, see hopeforemily.com, which shows how in July friends and family gathered to celebrate Emily's second birthday. In turning 2, Emily beat the odds-50 percent of children with SMA do not reach their second birthday.