He Is More....
Sunday night. We had served the LDS missionaries in our area dinner and had a great night. Ethan was his usual funny self and helped his little sisters do the dishes- always such a helper.
Monday morning. Ethan complained of a tummy ache, came home from school and played video games while we waited out what we thought to be the stomach flu.
Wednesday morning. He is yellow. His skin, the whites of his eye. His urine looks like Coke. I almost throw up when I see it while helping him get a sample at the pediatrician's office. He can hardly hold his head up. We are sent immediately to Primary Children's Hospital in SLC.
30 days of dialysis, blood and platelet transfusions. 30 days of fear, worry and heartache. We have a diagnosis- Atypical HUS. Lifelong. Life-threatening. Life changing.
Eculizumab. The miracle we prayed, begged and cried for. It gave him life again. In addition to 9 various pills a day, every 14 days he is infused with this liquid gold and carries on as a regular kid. More wise, thoughtful and more aware. Every 14 days for life, a bi-weekly reminder of how precious life is.
As of today, almost 100 of these IV's. He doesn't even flinch when IV team puts it in place. He holds his hand out, not even paying attention, while the other one holds a book or his kindle and his attention. He has rotated between the same two spots (one on each hand) since day one. His veins are strong, easy to access and freely pour his blood for labs here and those sent to Iowa.
He is not defined by this disease. It will not ruin his life, it will not hinder his progression, it will not stop him. It's his trial. We all have them. We knowingly came to this life with them and are stronger because of them.
He is not afraid. Our Heavenly Father promised he would be healed and Ethan has never wavered in his faith. He shrugs this disease off. He doesn't have time for it- it is but a moment of time in his life. There are far more things out there to see, experience and appreciate. He moves forward in faith.
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