Back to Normal…

As we’ve experienced many times this year our normal is anything but normal. Yet we are back to living life the best we can everyday. I say this not with sorrow, but with hope. Sure Everett’s new diagnosis brings an array of medications that need to be administered in 8 separate doses day, weekly visits with his pediatrician and neurologist, and a sleep schedule that is anything but normal. But still we are embraced each day with a beautiful sunrise and lots of love from our two little boys. If there is one thing we’ve learned this year it’s that tomorrow is unpredictable and all we can do is live for today and pray for strength to guide us into tomorrow.

Our week was busy and still there are so many great things that happened.

Ø Last Friday my mom kept both boys overnight so that Greg and I could catch up on both a date night and some needed rest. It was a great break and we enjoyed the quiet house until about 6am Saturday morning when we missed having both of our little ones cuddling in bed with us.

Ø On Sunday we started our Mother’s day celebration by dedicating Everett at church. After a week of doctors and a short hospital stay it was great to bring Everett before the Lord and ask for strength on this parenting journey.

Ø Monday we attended the infant program and the Foundation for Blind Children. This is something we do weekly, but it was our last formal program until next Fall. This program has been an invaluable experience and source of support.

Ø Wednesday was Mom’s group at the park. Jackson had a blast running and playing with friends while I had time to visit and talk with some very special Mom’s.

Ø On Thursday we were able to spend the day with Grant and Reagan. Jackson just loved all this extra play time with his cousins and Everett got lots of extra attention and love from Reagan.

Ø Friday night we decided to take the boys out on a date to the movies. We went to see the new Disney movie Earth and although Everett slept through the movie I am sure he enjoyed the sounds of the animals.

Ø Today we went for a walk. I strolled along with Everett, Jackson rode his bicycle and Greg walked with Riley. These are the moments I love the most!

And yes in the midst of our week there were three doctor appointments, a few hours of phone calls with therapy agencies, one respite provider interview and a lot of medicine to administer, but that is just part of our normal.

As for Everett’s health I want to thank you for your prayers. The medicine indeed does appear to be working. He’s not had a spasm in over a week and when he’s awake he’s more vocal then ever. His skills are still slow to come, but according to the neurologist it may take 3-4 months before we see any major gross motor changes. His eyes are moving again in sync and he appears to be responding to sounds and voices more than he was. This Friday Everett will have another EEG to determine just how well the medication is working, but outward signs appear to be good. Our new prayer is that we will again see the playful, happy spirit we know lives in Everett’s heart. Thank you again for the support and prayers. Our journey is strengthened through each one of you and it reminds us that God is with us always.