Things seem to be evening out a little bit for our boy. After 3 days of 20 + seizures, he has only have 5 or 6 the last couple days.
We have felt tremendously supported through this latest rough patch. I have been especially grateful for the encouraging bible verses friends have been messaging us. Our small group is reading a book called “The Story”, which is the bible in chronological order with some extra stuff to fill in the gaps. We had just read and studied the story of Joshua when G’s seizures started this time. God told Joshua many, many times but STRONG and COURAGEOUS! (and not to turn from God’ word, inferring that knowing God’s word would give his strength and courage). This could not be more true for myself right now. Having others write down a psalm or send me a song have given me words to pray when my own soul was too tired to know what to say. I was literally reading bible verses off my facebook wall in the ER Tuesday night. One friend sent me a note saying she thought of me when listening to “Praise You in the Storm” (below is a link to this powerful song)
It was pretty humbling to think, maybe we are able to do that a little bit. I have always loved this song and it speaks to me deeply these days. I want to be found faithful in loving God everyday. I hope and pray that our sweet boy sees that and decides our faith is a faith he wants as his own.
Speaking of praising in the storm. We now have lodging for our trip to Baltimore! We will be staying in a furnished but not lived in home of a pastor Chuck knows through his work at the church. This offer of lodging is HUGE! and quells huge amounts of anxiety for me. I will have a kitchen that I am in charge of, to make sure everything in and out are safe for G! We were wondering a few weeks ago if we even really needed this trip. Now with all the pieces falling together so beautifully we have a tempered optimism that we may get some new answers for our sweet little guy.
We are thankful for all of the continued offers of support we are getting. Here are a few tangible ways you can help if you feel lead.
1. come hang out with us, so mommy can get some cooking done with G is safe.
2. help with the lawn (the darn grass keeps growing!)
3. target or walmart gifts cards are great (we buy food at walmart and one of his prescriptions is not covered by insurance and we purchase it at target).
4. we use lots of pecans, butter, macademia nuts and paper towels for cooking.
5. never feel embarrased to ask us how we are doing. (we try not to talk only about ourselves and our kid…but if you are curious….we are happy to share!)
6. if you hear of someone else with difficult epilepsy, who has found help. please share! We are open to looking into any and all options.
So glad to hear about the details coming together for the Baltimore trip!!!