Tommorrow. Tommorrow is Caleb's 11th birthday. It pains me that he is not here. But I am in the same turn so grateful that he is at peace and not suffering- God has my little boy in His hands. I know many families who right now are going through similar circumstances of taking care of their beautiful children who they will lose at an early age. Some of them are already on Hospice, some are being treated still, but the options are minimal. Children with epilepsy who are dying need comfort, help, reassurance, love. Their families are giving constantly to keep the child as happy as possible and to keep the symptoms, and seizures specifically under as much control as possible. THAT IS A DAUNTING TASK.
Being in that place, where you are bridging your child from this world to Heaven. It is overwhelming. There are the daily tasks that keep you busy from sun up to sun down, and throughout the night at times. There are the emotions that you push aside just so you can get through the day. There is the rest of the family that needs your attention, not to mention clean clothes.
Please reach out, if you are family--do whatever it takes to HELP your family through the day. If you are a neighbor, cook a meal, come over and do the laundry. If you live out of town, send them pizza one night, send them Walmart cards, or just a card saying you are praying for them. Be a friend. Be an encouragement. And above all, if you can't lift them up- get out of the way.
To parents who are in this position, don't let anyone affect your focus. Your purpose is to help your child, and if anyone keeps you from staying the course or emotionally is taxing on you--kindly tell them to move on.
Remember in the Bible where Moses grew weary in battle, and as long as his hands were raised they would triumph? Aaron and Hur in Exodus 17 held up his arms. I always said when taking care of our Caleb "If you can't hold up my arms, get out of my way!"